Note from Kate:
We met with the surgeon yesterday and he is very pleased with the pancreas transplant results thus far. All my test levels have been in a normal range. He did point out that the pancreas is not up to full function yet because it is still getting settled after the stress of the transplant. Just what I need - a primo dona organ!
Once I came off the steroid high after being released from the hospital, I now find I am exhausted all the time. Sleeping frequently.
And of course I would not be me if I weren't frustrated. It is very difficult for me to be dependent on others for help. I can go to the basement to do the laundry, but I can't carry the baskets up to fold it. The other day I was going to have a peanut butter sandwich for lunch. It was a new jar of PB and I couldn't get it open. The bread was good! If this is all I have to complain about, aren't I blessed.
Your prayers, cards, and calls have been wonderful. - I am ready to go back to bed!
LV
Kate & Fran
Saturday, October 23, 2010
19 Oct 2010 - New Fungus Found
Note from Kate:
The Dr called today to say that the transplant center received notice from UNOS (United Network of Organ Sharing) that the heart and liver recipients of my donor have developed a fungus infection. So I will start a regime of some medication to ward off that potential risk.
The Dr called today to say that the transplant center received notice from UNOS (United Network of Organ Sharing) that the heart and liver recipients of my donor have developed a fungus infection. So I will start a regime of some medication to ward off that potential risk.
18 October 2010 - Kate - Pancreas - 2 Week Posting
Dear All,
Today was 2 weeks from the pancreas transplant and my numbers continue to be in a safe range, At today's Dr visit when I inquired why I am more tired now then when I first got home, the Dr indicated that when I first got home I was on a high from all the steroids they had pumped into me while in the hospital.
Now the reality of 2 transplant surgeries within a 6 month time frame is setting in. The only number the Dr is concerned with is my anemia. He was going to give me an infusion of iron today but said some people have a pretty bad reaction and didn't want to risk that at this time. So when I got home I purchased liver and iron pills. If the iron level is a bit higher when I go in on Friday, they will give me a shot to try to get the level to improve.
It is also amazing how the drug that protects the kidney from rejection is toxic to the pancreas. They are continually adjusting the dose to find the right balance.
Today the Dr told me to stop testing my BS so often - I was only testing 4 times a day. He said I should only test 2 times a day. After all these years, it seems alien not to be testing at least 4 times.
Thanks to everyone for your prayers and positive thoughts. They keep us going.
Love
Kate
Today was 2 weeks from the pancreas transplant and my numbers continue to be in a safe range, At today's Dr visit when I inquired why I am more tired now then when I first got home, the Dr indicated that when I first got home I was on a high from all the steroids they had pumped into me while in the hospital.
Now the reality of 2 transplant surgeries within a 6 month time frame is setting in. The only number the Dr is concerned with is my anemia. He was going to give me an infusion of iron today but said some people have a pretty bad reaction and didn't want to risk that at this time. So when I got home I purchased liver and iron pills. If the iron level is a bit higher when I go in on Friday, they will give me a shot to try to get the level to improve.
It is also amazing how the drug that protects the kidney from rejection is toxic to the pancreas. They are continually adjusting the dose to find the right balance.
Today the Dr told me to stop testing my BS so often - I was only testing 4 times a day. He said I should only test 2 times a day. After all these years, it seems alien not to be testing at least 4 times.
Thanks to everyone for your prayers and positive thoughts. They keep us going.
Love
Kate
Monday, October 11, 2010
Pancreas Transplant - 11 October 2010
Kate posted a note on Facebook that the pancreas transplant has been much easier than the kidney transplant.
It has been that way for me also.
It has been that way for me also.
Sunday, October 10, 2010
Update from Kate - 10 October 2010
Kate is home from her pancreas transplant and sent the following message this morning:
Dear Family and Friends,
A huge thank you is sent from us to you for all your support this past week. Your prayers and best wishes have lifted us once again.
Sunday October 3 we got the phone call a pancreas was available and that I would get a follow up phone call later in the evening once the cross match testing with the donor's blood was completed.
We had the chance to attended our usual 5:30pm Life Teen mass and asked Fr. Jim to keep our transplant intention in his heart as he celebrated the mass.
We got the next phone call at 10:30pm Sunday Oct 3 to come in for the next waiting stage. Once the transplant coordinator told me October 4 was the Feast of St. Francis, I knew in my heart we were golden. My own living St. Francis has been on this roller coaster journey for 27 of the past 42 years - never missing a beat!
Somewhere around 6-7am Monday Oct 4 I was taken into the operating room.
So unlike my kidney surgery which had complications, it was so wonderful to open my eyes at some point in recovery room and be able to breathe on my own. Your prayers were working.
Unlike my kidney surgery where they had to keep me and extra 2 days, today - October 9, I came home 2 days a head of schedule.
I am back to the protocal of tight restrictions with the outside world for the next 30 days. After the setbacks I experience with infection and ending up back in the hospital within days of coming home after the kidney - this time I am being more careful since now I have 2 organs at risk.
We are taking it one day at a time to see how this pancreas works. We thank God for each day it does provide my body with the insulin it needs. Many have asked about what my eating restrictions will be. My new pancreas may cover my insulin needs 100% such that I don't have to take any additional insulin. Or perhaps it will only cover part if my insulin needs similar to person's that have type 2 diabetes.
My biggest prayer and reason for taking the risks associated with the transplant and living on prednisone for the rest of my life is to be relieved the the hypoglycemic unawareness episodes (blacking out with no warning) I was having very frequently. Each day without one is a gift from God!
We thank you for your continued support in prayer, best wishes and phone calls.
--
Kate
I saw Kate today and she looked wonderful. She was up and had cooked breakfast and was planning on going out for a walk. Amazing!!
Norm
Dear Family and Friends,
A huge thank you is sent from us to you for all your support this past week. Your prayers and best wishes have lifted us once again.
Sunday October 3 we got the phone call a pancreas was available and that I would get a follow up phone call later in the evening once the cross match testing with the donor's blood was completed.
We had the chance to attended our usual 5:30pm Life Teen mass and asked Fr. Jim to keep our transplant intention in his heart as he celebrated the mass.
We got the next phone call at 10:30pm Sunday Oct 3 to come in for the next waiting stage. Once the transplant coordinator told me October 4 was the Feast of St. Francis, I knew in my heart we were golden. My own living St. Francis has been on this roller coaster journey for 27 of the past 42 years - never missing a beat!
Somewhere around 6-7am Monday Oct 4 I was taken into the operating room.
So unlike my kidney surgery which had complications, it was so wonderful to open my eyes at some point in recovery room and be able to breathe on my own. Your prayers were working.
Unlike my kidney surgery where they had to keep me and extra 2 days, today - October 9, I came home 2 days a head of schedule.
I am back to the protocal of tight restrictions with the outside world for the next 30 days. After the setbacks I experience with infection and ending up back in the hospital within days of coming home after the kidney - this time I am being more careful since now I have 2 organs at risk.
We are taking it one day at a time to see how this pancreas works. We thank God for each day it does provide my body with the insulin it needs. Many have asked about what my eating restrictions will be. My new pancreas may cover my insulin needs 100% such that I don't have to take any additional insulin. Or perhaps it will only cover part if my insulin needs similar to person's that have type 2 diabetes.
My biggest prayer and reason for taking the risks associated with the transplant and living on prednisone for the rest of my life is to be relieved the the hypoglycemic unawareness episodes (blacking out with no warning) I was having very frequently. Each day without one is a gift from God!
We thank you for your continued support in prayer, best wishes and phone calls.
--
Kate
I saw Kate today and she looked wonderful. She was up and had cooked breakfast and was planning on going out for a walk. Amazing!!
Norm
Monday, October 4, 2010
Note from Kate's Husband, Fran - 4 Oct 7:15am
Hi Everyone,
I am sending this message to you a waiting room at NY Presbyterian Hospital. Kate was just sent into the surgery room in preparation for her surgery to receive a pancreas!!!! I was told the surgery runs in the 4 from hour range, and I believe they were hoping to start the surgery around 8 a.m. Kate and I received the phone call to be ready around 3 p.m. on Sunday, then got the go ahead to come to the hospital around 10:45 p.m. Please keep Kate and the surgeons in your thoughts and prayers, as well as the family of the young man who passed and is donating his organs. I will update you as I receive more information
Love you all
Fran
I am sending this message to you a waiting room at NY Presbyterian Hospital. Kate was just sent into the surgery room in preparation for her surgery to receive a pancreas!!!! I was told the surgery runs in the 4 from hour range, and I believe they were hoping to start the surgery around 8 a.m. Kate and I received the phone call to be ready around 3 p.m. on Sunday, then got the go ahead to come to the hospital around 10:45 p.m. Please keep Kate and the surgeons in your thoughts and prayers, as well as the family of the young man who passed and is donating his organs. I will update you as I receive more information
Love you all
Fran
Pancreas Transplant - 4 October 2010 - 7:00am
I received a call from Kate's husband about 30 minutes ago that she was being brought into the operating room for a pancreas transplant. Please say a prayer for her. I will do an update when I hear more news. Norm
Thursday, July 1, 2010
1 July 2010 - Three Months
Today is three months since I walked into the operating room and climbed up on the table to donate my left kidney. I am feeling great and have no ill effects. We are at the beach riding the waves. Last week I biked over 100 miles. Life is good.
As far as I can tell, Kate's life is back to normal also. We both lead busy lives, so we don't communicate too often, but what I do get is good news.
Thanks for all the prayers,
Norm
As far as I can tell, Kate's life is back to normal also. We both lead busy lives, so we don't communicate too often, but what I do get is good news.
Thanks for all the prayers,
Norm
Wednesday, May 26, 2010
26 May - Update from Kate
Dear Family, Friends and Prayer Warriors!!
Things are really progressing quite good. I went back to work on Monday, May 17. It was really quite good to be back to work. They held the abuse to a minimum. It was good to be back to a routine. I only worked 4 hours a day (my boss would kick me out). This week I will go back to my 6 hour day. I still have to take a day off each week to go into NYC for check-ups. My boss wants me to wear a berca to ward off germs while I am at work or in a crowd. Then I only have to worry about getting detained!
Today I drove into NYC for a follow up appointment with the surgeon. It is such a quick visit, 10 minutes max. He looks at you and tells you, "you look great, see me again in 4 weeks". It is an hour and a half drive to get in. My friend said I should see if he is willing to do these follow-ups via Skype!!
My nephrologist sees me weekly (also in NYC) to adjust the multiple meds I am on and to interpret the weekly labs I have done.
He laughs at me because I have the opposite of White Coat Syndrome. I go in telling him how the readings I take daily at home are and he gets readings of 120/60 when he takes my reading!
While my hemoglobin level is still below 12 (at 9), I do feel a bit more energetic. I think that may be driven by necessity now that Matt and his girlfriend are with us as they both look for jobs.
I was starting to get back to the pool to work out, but this morning I cut my finger on a shard of glass so they said I should stay out of the water until the steri-strips fall off.
I can't believe June 1 will be the 2 month mark. My brother Norman has done quite well in his recovery as well. He is pretty much getting back to his former routine as well.
With our thanks for all your thoughts and prayers,
Love,
Kate & Fran
Things are really progressing quite good. I went back to work on Monday, May 17. It was really quite good to be back to work. They held the abuse to a minimum. It was good to be back to a routine. I only worked 4 hours a day (my boss would kick me out). This week I will go back to my 6 hour day. I still have to take a day off each week to go into NYC for check-ups. My boss wants me to wear a berca to ward off germs while I am at work or in a crowd. Then I only have to worry about getting detained!
Today I drove into NYC for a follow up appointment with the surgeon. It is such a quick visit, 10 minutes max. He looks at you and tells you, "you look great, see me again in 4 weeks". It is an hour and a half drive to get in. My friend said I should see if he is willing to do these follow-ups via Skype!!
My nephrologist sees me weekly (also in NYC) to adjust the multiple meds I am on and to interpret the weekly labs I have done.
He laughs at me because I have the opposite of White Coat Syndrome. I go in telling him how the readings I take daily at home are and he gets readings of 120/60 when he takes my reading!
While my hemoglobin level is still below 12 (at 9), I do feel a bit more energetic. I think that may be driven by necessity now that Matt and his girlfriend are with us as they both look for jobs.
I was starting to get back to the pool to work out, but this morning I cut my finger on a shard of glass so they said I should stay out of the water until the steri-strips fall off.
I can't believe June 1 will be the 2 month mark. My brother Norman has done quite well in his recovery as well. He is pretty much getting back to his former routine as well.
With our thanks for all your thoughts and prayers,
Love,
Kate & Fran
Friday, May 14, 2010
14 May - $10,000 Bill from the Surgeon
Today I got a $10,000 bill from the surgeon. After a small amount of CPR, I was fine. They should at least send some morphine with these bills.
Also gained a couple more pounds. My appetite is back with a vengence. However, I am still five pounds lower than when I left for NY for the surgery -- but it is slipping away fast.
Feeling good -- at least for an old guy!
Also gained a couple more pounds. My appetite is back with a vengence. However, I am still five pounds lower than when I left for NY for the surgery -- but it is slipping away fast.
Feeling good -- at least for an old guy!
Monday, May 10, 2010
10 May: My Weight
I gained four pounds yesterday. Looks like I can no longer eat with impunity! All good things must come to an end -- I knew this was going to happen.
Felt tired yesterday. Probably more due to too many carbs, than anything related to surgery.
I think I better go workout!!
Felt tired yesterday. Probably more due to too many carbs, than anything related to surgery.
I think I better go workout!!
Thursday, May 6, 2010
6 May - Update from Kate
Thanks to all your prayers that we are blanketed in, we continue to do well. Today's visit into NYC ended up being quite a bit longer than the 1 hour I told the parking garage attendant when we dropped the car off!! After the usual visit with the Dr., he decided to have me have a sonogram to follow up on the sono's while I was hospitalized.
So we had to hang out for a 3pm sonogram. I also learned that the evening rush hour out of NYC on the LIE starts at 3:30pm
I asked the Dr about resuming my water aerobics. He said as long as I had no open wounds, I could give it a try. When I asked about using public transportation, he said that was up to me. He said some people wait a month, some wait a year and others wait what ever time in that window. Well it looks like my friend and I will be using the trains next week because my appointment is scheduled for 9:40am and there is no good time to drive in for an appointment at that hour. I will be wearing a mask and will be armed with Purell! (Maybe I'll get a seat!)
No antibiotics this week, the White Blood Cell (WBC) count was back to a normal range. The iron count is creeping up ever so slowly. I continue to take an iron supplement.
Driving this past week was great. A new sense of freedom - even thought I only drove to mass and to grocery shop!
Thanks again for keeping us in your prayers.
Love
Kate & Fran
So we had to hang out for a 3pm sonogram. I also learned that the evening rush hour out of NYC on the LIE starts at 3:30pm
I asked the Dr about resuming my water aerobics. He said as long as I had no open wounds, I could give it a try. When I asked about using public transportation, he said that was up to me. He said some people wait a month, some wait a year and others wait what ever time in that window. Well it looks like my friend and I will be using the trains next week because my appointment is scheduled for 9:40am and there is no good time to drive in for an appointment at that hour. I will be wearing a mask and will be armed with Purell! (Maybe I'll get a seat!)
No antibiotics this week, the White Blood Cell (WBC) count was back to a normal range. The iron count is creeping up ever so slowly. I continue to take an iron supplement.
Driving this past week was great. A new sense of freedom - even thought I only drove to mass and to grocery shop!
Thanks again for keeping us in your prayers.
Love
Kate & Fran
Tuesday, May 4, 2010
4 May - One Month plus
May 1st was one month since our surgeries.
I got a note from Kate (and a phone call). She only has to go to Presbyterian hospital once a week for tests (it sounded like this is dictated more by the insurance company than any medical decision -- surprise, surprise!!) She started to drive this week and hopes to return to work within two weeks. She has to drink 3 liters of water per day -- I think I would worry about drowning. She also has to be extra careful about sun exposure because of the anti-rejection drugs.
I biked on Friday and Sunday and helped Patricia and Erik build a swing set for the kids on Saturday. Although, with the 90 degree heat, I was doing more supervising than manual labor.
I have started adding more weight to my morning lifting workouts and increasing my jump rope reps. Today I got back to my ball class for the first time (after four week restiction on core exercises). It was my first extensive abs workout since the surgery. It felt good and I was able to do all of the exercises, although some with reduced intensity.
I am also noticing that I am less tired on most days.
One other thing that happened after the surgery is that my taste for foods has changed. I don't know if this is due to my digestive system being less tolerant of high fiber foods. I have had no desire for fruit, although I have slowly started getting back in recent days.
Each day I get more back to my normal routine and the surgery seems further and further in the past. The four months from start of the process to recovery seems to have flown by. Last night I was actually thinking; "did this really happen!" I guess that is a good thing.
I got a note from Kate (and a phone call). She only has to go to Presbyterian hospital once a week for tests (it sounded like this is dictated more by the insurance company than any medical decision -- surprise, surprise!!) She started to drive this week and hopes to return to work within two weeks. She has to drink 3 liters of water per day -- I think I would worry about drowning. She also has to be extra careful about sun exposure because of the anti-rejection drugs.
I biked on Friday and Sunday and helped Patricia and Erik build a swing set for the kids on Saturday. Although, with the 90 degree heat, I was doing more supervising than manual labor.
I have started adding more weight to my morning lifting workouts and increasing my jump rope reps. Today I got back to my ball class for the first time (after four week restiction on core exercises). It was my first extensive abs workout since the surgery. It felt good and I was able to do all of the exercises, although some with reduced intensity.
I am also noticing that I am less tired on most days.
One other thing that happened after the surgery is that my taste for foods has changed. I don't know if this is due to my digestive system being less tolerant of high fiber foods. I have had no desire for fruit, although I have slowly started getting back in recent days.
Each day I get more back to my normal routine and the surgery seems further and further in the past. The four months from start of the process to recovery seems to have flown by. Last night I was actually thinking; "did this really happen!" I guess that is a good thing.
Thursday, April 29, 2010
29 April: Four Weeks
Today is four weeks since the surgery. I am no longer restricted to lifting only 10 pounds and, I believe, I am able to resume normal activities and everything will stay in place and nothing will break. I did some testing, (jumped rope, lifted weights, mowed part of the lawn) and so far so good. I also took a nap and did two computer appointments.
Have not heard too much from Kate -- assuming that no news is good news.
Have not heard too much from Kate -- assuming that no news is good news.
Monday, April 26, 2010
26 April - Weight Lifting
I tried a little very light weight lifting today. Felt good. Will gradually start building up the weights, but have to be sure that there is no stress on the incision.
Also received a bill from the hospital for $29,000. Nothing that a little CPR couldn't fix. I am assuming that this is the usual procedure where the insurance company initially denies all claims without even reading them.
Also received a bill from the hospital for $29,000. Nothing that a little CPR couldn't fix. I am assuming that this is the usual procedure where the insurance company initially denies all claims without even reading them.
Sunday, April 25, 2010
April 24 & 25 - Passed the Mexican Test
Saturday, 24 April: We attended Christopher's First Holy Communion in NC. Annmarie had it catered with Mexican food (my favorite)! I ate it with reckless abandon and no problems!! I must be cured.
I have not been getting any naps, but have been going to bed early. I think that my energy is returning.
Today, 24 April: We drove home through the Shenandoah Valley. What a beautiful drive, the red buds and dogwoods are in bloom and the hills are lush green.
Barbara was into a good book on her Kindle, so I did most of the driving. Felt fine.
I have not been getting any naps, but have been going to bed early. I think that my energy is returning.
Today, 24 April: We drove home through the Shenandoah Valley. What a beautiful drive, the red buds and dogwoods are in bloom and the hills are lush green.
Barbara was into a good book on her Kindle, so I did most of the driving. Felt fine.
Friday, April 23, 2010
23 April - Tired
I wound up doing a good bit of the driving yesterday on our trip to NC and only got a short nap.
Result: tired this morning.
One other observation: I seem to feel better on bright, sunny days than cloudy, rainy days.
As a result of eating some new foods yesterday, my digestive system let me know that I need to back off a bit. Trying to be more careful today.
I am also wondering if part of my brains were removed with my kidney. After we drove about 100 miles yesterday, I realized that I forgot my wallet. And this morning I discovered that I had forgotten my electric toothbrush (which I had carefully laid on the bed next to my suitcase when I was packing.)
I got my steri-strips off my incision in the shower this morning. I was afraid they were going to be there forever. I can't believe how small the incision looks and how he ever got the kidney through that size hole -- I have this picture of him with his foot on my stomach and pulling with two hands -- no wonder I was sore!
I got the results of my blood testing from Kaiser. The doctor said that all of my kidney related tests were fine. I did notice that cholesterol numbers on my LIPID panel tests were going in the wrong direction from my previous test, so I have resumed taking my Simvistatin.
Today, Barbara and I went to Mass with Annmarie, then to Starbucks (they let me in without a gun!) and then shopping at Sam's Club. After lunch I took a delicious two hour nap. Weather looks pretty good now -- think I will take a walk.
Result: tired this morning.
One other observation: I seem to feel better on bright, sunny days than cloudy, rainy days.
As a result of eating some new foods yesterday, my digestive system let me know that I need to back off a bit. Trying to be more careful today.
I am also wondering if part of my brains were removed with my kidney. After we drove about 100 miles yesterday, I realized that I forgot my wallet. And this morning I discovered that I had forgotten my electric toothbrush (which I had carefully laid on the bed next to my suitcase when I was packing.)
I got my steri-strips off my incision in the shower this morning. I was afraid they were going to be there forever. I can't believe how small the incision looks and how he ever got the kidney through that size hole -- I have this picture of him with his foot on my stomach and pulling with two hands -- no wonder I was sore!
I got the results of my blood testing from Kaiser. The doctor said that all of my kidney related tests were fine. I did notice that cholesterol numbers on my LIPID panel tests were going in the wrong direction from my previous test, so I have resumed taking my Simvistatin.
Today, Barbara and I went to Mass with Annmarie, then to Starbucks (they let me in without a gun!) and then shopping at Sam's Club. After lunch I took a delicious two hour nap. Weather looks pretty good now -- think I will take a walk.
Thursday, April 22, 2010
22 April - off to NC
Yesterday I had a busy day. Only got one small nap. Today I am a bit tired, but taking short turns driving.
Testing more foods - so far so good!
Testing more foods - so far so good!
Tuesday, April 20, 2010
20 April - Cracking the Code ??
Yesterday I was more careful with my diet. This lead to my digestive system doing better, which meant that I slept better last night and I don't feel tired this morning. Maybe this is all related!!
Monday, April 19, 2010
19 April - Good Day - More Energy
Photo (L to R) is my brother, Keith, who donated blood for Kate, Kate, me. Photo was taken one week after surgery.
Today was good. Had quite a bit of energy -- hope I don't pay for it tomorrow.
Sunday, April 18, 2010
18 April: Went to Church, but slow day.
My digestive system is still not back to normal. I sure wish I could get this moving in the right direction. I am also very tired today. I think that a major activity, like biking or mowing the lawn requires two days of rest afterwards.
Comments: I think that I fixed the setting that requires login for leaving comments. I was wondering if there was anyone out there? Please give it a try and let me know if it works.
Comments: I think that I fixed the setting that requires login for leaving comments. I was wondering if there was anyone out there? Please give it a try and let me know if it works.
Saturday, April 17, 2010
17 April - Cut the Grass
Finally got to cutting the grass. I was only going to do the front, but felt good so I did the whole yard. As I was pushing the lawn mower, I was thinking that it was only two weeks ago that I was walking the halls in the hospital pushing on IV pole. I am not a big fan of grass cutting, buy I will take the lawn mower over the IV pole anytime.
Friday, April 16, 2010
16 April: Biking
Yesterday was the two week anniversary of my surgery. It was a nice warm day, so Barbara and I biked seven miles -- not too much, but it is a start. Today looks like another nice one, so maybe we can get in some more miles.
I was thinking that I should do a little lawn mowing, but I seem to have more energy in my head than my body.
Spoke to Kate. She was released from the hospital on Wednesday and doing well at home. She has another appointment today (two per week). The bad part is that they have to drive into NYC -- I did not realize that she is not allowed to take public tranportation because of the reduced immunity due to the anti-rejection drugs.
I was thinking that I should do a little lawn mowing, but I seem to have more energy in my head than my body.
Spoke to Kate. She was released from the hospital on Wednesday and doing well at home. She has another appointment today (two per week). The bad part is that they have to drive into NYC -- I did not realize that she is not allowed to take public tranportation because of the reduced immunity due to the anti-rejection drugs.
Thursday, April 15, 2010
15 April: Still Getting Better - Additional Thought
I just realized that today is the two week anniversary my surgery. It is 6:55am. About the time that the anesthesiology tech came and got me from the family waiting room and we walked to the operating room. We stood outside and chatted for a while and then I walked in and climbed up on the table and got comfortable. I think that was the last time that I was comfortable for several days. Everybody was very nice and very professional. The tech said something about giving me a little anesthesia and that is the last thing that I remember until I woke up at 2pm in the afternoon.
15 April: Still Getting Better
Each day I am getting a little better. I think my energy level inched a bit higher yesterday. I hope to try a little biking today. Temperature is suppose to be in the 70s.
Kate wound up back in the hospital, but it seemed to be mostly precautionary. Her temperature was slightly elevated on Sunday night, so they told her to come in. After monitoring her temperature, white blood cell count, etc. for two days she seemed to be OK. I believe that she came home yesterday.
Kate wound up back in the hospital, but it seemed to be mostly precautionary. Her temperature was slightly elevated on Sunday night, so they told her to come in. After monitoring her temperature, white blood cell count, etc. for two days she seemed to be OK. I believe that she came home yesterday.
Tuesday, April 13, 2010
13 April: 12 Days after Surgery
Yesterday, I did a couple of computer repair jobs and drove for the first time. I am feeling better every day and my systems are getting back to normal. I am varying my diet more, and without any adverse effects. My appetite is not back to where it was, but I enjoy eating small meals and have cravings for different foods -- we think this means something and usually go with them.
I make it a point to sit and read and snooze between activities. Really enjoying reading with my new Kindle that the kids got for me. It is so easy and convenient.
We walked about two miles before dinner.
This morning I discovered that I had lost another 1.5 pounds (a total of 10 pounds since we left for NY on March 28th). Would all the people who have decided to donate a kidney please form a double line!
I suspect that my weight will pick up once I am able to go back to biking and weight lifting.
I make it a point to sit and read and snooze between activities. Really enjoying reading with my new Kindle that the kids got for me. It is so easy and convenient.
We walked about two miles before dinner.
This morning I discovered that I had lost another 1.5 pounds (a total of 10 pounds since we left for NY on March 28th). Would all the people who have decided to donate a kidney please form a double line!
I suspect that my weight will pick up once I am able to go back to biking and weight lifting.
Monday, April 12, 2010
12 April - Monday
I seem to be inching back a little each day. My GI system is heading in the right direction and I am sleeping better because the gas pains are not keeping me awake.
I also feel like my temperature regulation system is getting better -- I was very chilled when I had to get up during the night. That didn't seem to be an issue last night.
BP: 105/70, pulse: 55 this morning. I lost another 1/4 pound (total 8.5 pounds).
I feel like my energy level is better this morning -- maybe due to sleeping better.
I got a funny note from Kate yesterday. Before the transplant, I was kidding her about how active my kidneys were. She said that yesterday was the first time in 25 years of 24 hour urine collections that she needed a second jug.
I also feel like my temperature regulation system is getting better -- I was very chilled when I had to get up during the night. That didn't seem to be an issue last night.
BP: 105/70, pulse: 55 this morning. I lost another 1/4 pound (total 8.5 pounds).
I feel like my energy level is better this morning -- maybe due to sleeping better.
I got a funny note from Kate yesterday. Before the transplant, I was kidding her about how active my kidneys were. She said that yesterday was the first time in 25 years of 24 hour urine collections that she needed a second jug.
Sunday, April 11, 2010
11 April. - Sunday
Thought I would go to church this morning, but eating breakfast consumed all my energy
Back to resting. Guess you can't rush mother nature.
Back to resting. Guess you can't rush mother nature.
Saturday, April 10, 2010
10 April - Saturday
First day home in VA. I still have to be careful about what I eat. However, I went on the BRAT Diet (Banana, Rice, Apple Sauce, Toast) to slow things going through my system. Actually, BRAT with pizza supplements. My stomach seems to be doing better.
The weather was beautiful and we did three nice walks. I am very tired and resting a lot. The good news is that I lost eight pounds from when we left for NY. I have a feeling that I will find it when I am able to eat properly again.
The weather was beautiful and we did three nice walks. I am very tired and resting a lot. The good news is that I lost eight pounds from when we left for NY. I have a feeling that I will find it when I am able to eat properly again.
T - 0 to T-2: Saturday: Calling Mother and Going Home
I wanted to catchup on this last day in the hospital while I can still remember.
Friday night to Saturday morning seemed like I had a much better night's rest with fewer interruptions. They seemed like they were being merciful and letting me sleep. However, I think I missed one of my four hour percocet fixes.
I woke up about 5am and it seemed like my GI system was showing some activity -- at least a little bit. I also felt chills and was a bit nauseous. I was able to go back to sleep.
When I woke up later, I felt terrible and could not imagine that I would go home that day. When I reported my GI activity, the food service person came right in and offered me this huge variety of food for breakfast and lunch. I thought I was on a cruise -- I expected the Viennese table for dessert. None of it really appealed to me -- I got dry toast and yogurt for breakfast and hummus and pita bread for lunch. I kept thinking of Jackie Gleason and the "Loud Mouth", where Art Carney would order a piece of toast floating in a bowl of prune juice.
I got back on the percocet. I also found that Joanne was back, something that I didn't expect because of the weekend -- things were looking up. We talked about discharge and I opted for 3pm.
Barbara and I called Kate and decided on 12:30pm to call mother and break the news. I also called my brother, Keith, and asked that he go over and be with my mother. Kate and I made the call. It was quite a shock to my mother, but she did well. At 90 years old, she has been through a lot of things. I told her that I would be home later that day and fill her in on all the details.
Barbara and I walked back to my room. Joanne came in and asked about going home (Barbara had everything packed and laid out on her bed). We said that we were ready whenever it would be good for her. She came back shortly with all of the paperwork and carefully explained everything. A couple of signatures and we were ready to go.
Fran's sister-in-law, Kay, drove us home. She was wonderful to us throughout this whole thing and I, especially, appreciated her gentile driving.
We got to my mother's in Farmingdale by mid-afternoon. I spent a lot of time talking to my mother and Barbara went to town and filled my prescriptions.
Friday night to Saturday morning seemed like I had a much better night's rest with fewer interruptions. They seemed like they were being merciful and letting me sleep. However, I think I missed one of my four hour percocet fixes.
I woke up about 5am and it seemed like my GI system was showing some activity -- at least a little bit. I also felt chills and was a bit nauseous. I was able to go back to sleep.
When I woke up later, I felt terrible and could not imagine that I would go home that day. When I reported my GI activity, the food service person came right in and offered me this huge variety of food for breakfast and lunch. I thought I was on a cruise -- I expected the Viennese table for dessert. None of it really appealed to me -- I got dry toast and yogurt for breakfast and hummus and pita bread for lunch. I kept thinking of Jackie Gleason and the "Loud Mouth", where Art Carney would order a piece of toast floating in a bowl of prune juice.
I got back on the percocet. I also found that Joanne was back, something that I didn't expect because of the weekend -- things were looking up. We talked about discharge and I opted for 3pm.
Barbara and I called Kate and decided on 12:30pm to call mother and break the news. I also called my brother, Keith, and asked that he go over and be with my mother. Kate and I made the call. It was quite a shock to my mother, but she did well. At 90 years old, she has been through a lot of things. I told her that I would be home later that day and fill her in on all the details.
Barbara and I walked back to my room. Joanne came in and asked about going home (Barbara had everything packed and laid out on her bed). We said that we were ready whenever it would be good for her. She came back shortly with all of the paperwork and carefully explained everything. A couple of signatures and we were ready to go.
Fran's sister-in-law, Kay, drove us home. She was wonderful to us throughout this whole thing and I, especially, appreciated her gentile driving.
We got to my mother's in Farmingdale by mid-afternoon. I spent a lot of time talking to my mother and Barbara went to town and filled my prescriptions.
Thursday, April 8, 2010
T + 6 Wednesday, 7 April - Turnaround
When I woke up, I was still having terrible gas pains. Anything that I tried to eat or drink immediately made this worse. Suddenly the logjam broke and all of my systems were working fine. I had no problem eating or drinking and walked about four miles (not all at once). I was like a new person. It was six days after my kidney donation and I was almost back to normal -- except for being tired.
Kate came home from the hospital. We had a long talk on the phone. She is doing well and so happy that she can sleep through the night and no longer has terrible "night sweats" requiring her to change the sheets.
Life is good. Tomorrow (Thursday) is my one week checkup at the hospital.
Kate came home from the hospital. We had a long talk on the phone. She is doing well and so happy that she can sleep through the night and no longer has terrible "night sweats" requiring her to change the sheets.
Life is good. Tomorrow (Thursday) is my one week checkup at the hospital.
Wednesday, April 7, 2010
T - 0 to T + 2 The Next Day - Nurse Joanne
Surgery was Thursday, Thursday night/Friday morning was a lot of monitoring and nursing care throughout the night. I did not get much sleep.
The nurse's aide took my vital signs every 4 hours. I remember BP about 105 over 65, or something close to that. My oxygen was 91. This was always an issue and I had to suck on a device to get it up. With hard work and much pain, I could usually manage to get it up to 94.
I was constantly reminded that I would have to get up and walk. At that point, it hurt to LOOK up, I could not imagine that I would GET up.
At 8am the shifts changes and shortly after that I met my day nurse, Joanne Ramoutar. I know that so many of you have been praying for me, but I didn't know that God sends a special nurse. Joanne was wonderful. She asked how I was doing and about getting up and walking. I told her that I felt terrible and the thought of getting up was painful. She said, "OK" and came back in a few minutes with two Percocet and told me to rest. I went into a deep, uninterrupted sleep. When I woke up, Joanne was there and asked if I felt like walking -- I said, "Sure". She adjusted the tubes attached to me, adjusted the bed, and I got up with no problem at all. The next thing I knew, I was walking up and down the hall with the other pole pushers. It was easy and I felt great!
The next time that my vitals were being taken by the aide, Joanne came in. The aide told her about my low oxygen level. Joanne said that she would try it. First she switched the oxygen sensor to the opposite side from the BP cuff and then she said that I need to sit up straighter so that my diaphragm was not compressed. She gently helped me do that and my oxygen went from 91 to 99.
After I was able to get up and walk, Joanne said that she could remove the catheter for my urine. I asked if she was good at it, she said yes and got up and walk to the other side of the bed. It was out and I never felt a thing.
Joanne kept a close watch on my pain medications and also started me on stool softeners -- something I would appreciate later.
Later that day, Barbara and I were going to visit Kate. We asked for the "Escort Service". Someone came to disconnect the IV, but he got flustered because he didn't know how to disconnect the fittings that were used. He said that I needed to wait for a wheel chair to take me down. We never got a wheel chair, but Kate was sleeping anyway. The next time Kate was available, we asked Joanne. She fixed my IV tube, disconnected it and said that we could walk down. It was so easy and so nice to be free of the pole.
I had my first visit with Kate. She looked good. She said that she had no pain -- I was amazed.
Our son, Norman, visited for a while on Friday morning and then left to catch a plane for CA. It was so good to see him.
The rest of Friday went well and I got more rest on Friday night. The next challenge was to get some output from my digestive system. It was a criteria for going home on Saturday. I, actually, did not care if I had to stay until Sunday. The atmosphere was pleasant and the care was good.
The nurse's aide took my vital signs every 4 hours. I remember BP about 105 over 65, or something close to that. My oxygen was 91. This was always an issue and I had to suck on a device to get it up. With hard work and much pain, I could usually manage to get it up to 94.
I was constantly reminded that I would have to get up and walk. At that point, it hurt to LOOK up, I could not imagine that I would GET up.
At 8am the shifts changes and shortly after that I met my day nurse, Joanne Ramoutar. I know that so many of you have been praying for me, but I didn't know that God sends a special nurse. Joanne was wonderful. She asked how I was doing and about getting up and walking. I told her that I felt terrible and the thought of getting up was painful. She said, "OK" and came back in a few minutes with two Percocet and told me to rest. I went into a deep, uninterrupted sleep. When I woke up, Joanne was there and asked if I felt like walking -- I said, "Sure". She adjusted the tubes attached to me, adjusted the bed, and I got up with no problem at all. The next thing I knew, I was walking up and down the hall with the other pole pushers. It was easy and I felt great!
The next time that my vitals were being taken by the aide, Joanne came in. The aide told her about my low oxygen level. Joanne said that she would try it. First she switched the oxygen sensor to the opposite side from the BP cuff and then she said that I need to sit up straighter so that my diaphragm was not compressed. She gently helped me do that and my oxygen went from 91 to 99.
After I was able to get up and walk, Joanne said that she could remove the catheter for my urine. I asked if she was good at it, she said yes and got up and walk to the other side of the bed. It was out and I never felt a thing.
Joanne kept a close watch on my pain medications and also started me on stool softeners -- something I would appreciate later.
Later that day, Barbara and I were going to visit Kate. We asked for the "Escort Service". Someone came to disconnect the IV, but he got flustered because he didn't know how to disconnect the fittings that were used. He said that I needed to wait for a wheel chair to take me down. We never got a wheel chair, but Kate was sleeping anyway. The next time Kate was available, we asked Joanne. She fixed my IV tube, disconnected it and said that we could walk down. It was so easy and so nice to be free of the pole.
I had my first visit with Kate. She looked good. She said that she had no pain -- I was amazed.
Our son, Norman, visited for a while on Friday morning and then left to catch a plane for CA. It was so good to see him.
The rest of Friday went well and I got more rest on Friday night. The next challenge was to get some output from my digestive system. It was a criteria for going home on Saturday. I, actually, did not care if I had to stay until Sunday. The atmosphere was pleasant and the care was good.
Tuesday, April 6, 2010
T + 5 (Tuesday, 6 April)
Today as a very small step forward. GI system issues are still the major problem. I took two tylenol in the morning and two at night -- just because they may help with gas pain. I also took two stool softeners. None of the other pain is an issue -- like there is none.
I was able to walk outside today. The weather has been beautiful.
Trying to figure this out: What to eat, how much to eat, should I take pain killers. I am erring on the side of moderation.
I was able to walk outside today. The weather has been beautiful.
Trying to figure this out: What to eat, how much to eat, should I take pain killers. I am erring on the side of moderation.
Monday, April 5, 2010
Monday - 5 April
Today was a step back day. Although I am down to 2 tylenol a day, the effects of percocet on my digestive system are in full force. A couple of donors have told us this is normal, but it is still quite unpleasant.
I think Kate is working on adjustment of anti-rejection drugs. Think it could take a couple of days. My brother, Keith, talked to her. She is walking and eating a lot.
I am still getting to walk outside, which is nice.
I think Kate is working on adjustment of anti-rejection drugs. Think it could take a couple of days. My brother, Keith, talked to her. She is walking and eating a lot.
I am still getting to walk outside, which is nice.
Sunday, April 4, 2010
T - 0 to T + 3 (Waking Up)
When I woke up I noticed that the clock was a little after 2:00pm. I was disoriented, but the pain in my gut quickly brought me to the reality that I was now a kidney donor. I asked to see Barbara and she was brought in almost instantly. (Please be reminded that things were pretty hazy at this point, but she confirmed seeing me shortly after 2pm).
(Snopes says that the story on the internet about going to sleep with a pretty nurse and waking up missing a kidney is a hoax -- I need to write to them!)
The next thing I remember was being told that I would be brought to my room. The thought of being moved was very painful. I felt every little bump, like getting on and off an elevator. Sliding from the gurney to the bed was actually worse in anticipation than the actual move.
The nurse, Steve, put some morphine in the IV and that put me in la la land and took the sharp edge off the pain. My vital signs showed that I was still alive, although my assessment was, just barely. MY BP was about 100 over 55. I may have discovered a cure for high blood pressure, but I don't recommend it.
The next time that I needed pain medication, Steve said that he was going to switch me to Percocet because I need to be on oral medication before I could be discharged. A BIG MISTAKE!! After some time I told Steve that the Percocet was not taking the sharp edge off the pain. He said that I would have to wait a little bit and he would be able to give me some more morphine. When the time came, Steve put some more in the IV and things got better.
I had no pain at the incision, it was all related to my core muscles and the bloating putting pressure on things. Actually, most of the pain was where the kidney was. Having to turn in bed was the worst part. I never thought that I would be happy to have a catheter, but not having to get up to urinate was wonderful.
I had a complete team of people attending to me and somehow they would know when I got sleep and send in the next team member.
Dr Delpizzio's Team -- They were concerned with the incision and would give me the big picture about what was going to happen.
Nurse: She answered any questions and took care of pain medications.
Nurse Assistant: She took my vital signs (BP, Heart Rate, temperature and Oxygen level) every time that I managed to get to sleep.
Nurse Practitioner: I never figured out what she did. She asked if I had any questions and every time that asked one, she told me that the nurse would answer that. I tried five or six questions, but never hit on one that was within her purview, but she was cute.
Norman came in some time early evening. It was wonderful to see him. That brightened my day.
Barbara was checking with Fran (Kate's husband) on a regular basis. Kate did well and the kidney was functioning, but she had other issues like nausea and a rash. She stayed in the recovery room until the next day (Friday )-- more due to room availability than medical reasons.
My room was great. It was quite large and the staff immediately brought in a bed for Barbara. We were treated very well.
Thursday night was pretty tough -- the percocet wasn't cutting the pain all that well.
An aside: We have learned a lot about the Civil War because of living near Manassas, VA and numerous hiking trips to battle ground area. These soldiers were in make shift hospitals with limited supplies and freezing weather and I was in one of the best transplant hospital in the nation, if not the world -- I decided that I was going to live.
(Snopes says that the story on the internet about going to sleep with a pretty nurse and waking up missing a kidney is a hoax -- I need to write to them!)
The next thing I remember was being told that I would be brought to my room. The thought of being moved was very painful. I felt every little bump, like getting on and off an elevator. Sliding from the gurney to the bed was actually worse in anticipation than the actual move.
The nurse, Steve, put some morphine in the IV and that put me in la la land and took the sharp edge off the pain. My vital signs showed that I was still alive, although my assessment was, just barely. MY BP was about 100 over 55. I may have discovered a cure for high blood pressure, but I don't recommend it.
The next time that I needed pain medication, Steve said that he was going to switch me to Percocet because I need to be on oral medication before I could be discharged. A BIG MISTAKE!! After some time I told Steve that the Percocet was not taking the sharp edge off the pain. He said that I would have to wait a little bit and he would be able to give me some more morphine. When the time came, Steve put some more in the IV and things got better.
I had no pain at the incision, it was all related to my core muscles and the bloating putting pressure on things. Actually, most of the pain was where the kidney was. Having to turn in bed was the worst part. I never thought that I would be happy to have a catheter, but not having to get up to urinate was wonderful.
I had a complete team of people attending to me and somehow they would know when I got sleep and send in the next team member.
Dr Delpizzio's Team -- They were concerned with the incision and would give me the big picture about what was going to happen.
Nurse: She answered any questions and took care of pain medications.
Nurse Assistant: She took my vital signs (BP, Heart Rate, temperature and Oxygen level) every time that I managed to get to sleep.
Nurse Practitioner: I never figured out what she did. She asked if I had any questions and every time that asked one, she told me that the nurse would answer that. I tried five or six questions, but never hit on one that was within her purview, but she was cute.
Norman came in some time early evening. It was wonderful to see him. That brightened my day.
Barbara was checking with Fran (Kate's husband) on a regular basis. Kate did well and the kidney was functioning, but she had other issues like nausea and a rash. She stayed in the recovery room until the next day (Friday )-- more due to room availability than medical reasons.
My room was great. It was quite large and the staff immediately brought in a bed for Barbara. We were treated very well.
Thursday night was pretty tough -- the percocet wasn't cutting the pain all that well.
An aside: We have learned a lot about the Civil War because of living near Manassas, VA and numerous hiking trips to battle ground area. These soldiers were in make shift hospitals with limited supplies and freezing weather and I was in one of the best transplant hospital in the nation, if not the world -- I decided that I was going to live.
T - 0 to T + 3
This is actually the first time that I have gotten to write since the operation. The previous T - 1 entry was written by Barbara with some fuzzy input from me. We are now back at my mother's house in Farmingdale.
On Thursday morning we got to the hospital at about 5:15am. It was surprising how many people were on the subway and streets at that time. Kate and Fran and Kate's sister-in-law, Kay, were all ready there. They quickly took us all to a family waiting room and then Kate and I to rooms where we could change into those famous gowns with open backs, however, they gave us nice robes to put on top. It was kind of strange to remove my wedding band for the first time since we got married, almost 46 years ago. Barbara put it on and wore it the whole time.
We went back to the family waiting room. They came for Kate first because they needed to start an IV on her. My surgeon, Dr. Delpizzo, came and got me and marked my left side with his initials.
About 7:00am the nurse anesthetist (N/A) came and got me and we walked into the operating room. I layed down on the table and there was flurry of activity. They put compression legging on my legs, something on my back and an IV port in my left hand. Everyone was very nice and they explained everything to me as they did it. I thought of a recent Netflx that we saw where everyone was singing in the operating room. However, this group seemed totally focused on the task at hand. Very comforting.
The N/A said something about starting some anesthia and that is the last thing that I remember. I thought that they ask you to count -- I guess not.
I will continue in the next installment to keep these in reasonable size pieces. I, also, might need a short snooze at this point.
On Thursday morning we got to the hospital at about 5:15am. It was surprising how many people were on the subway and streets at that time. Kate and Fran and Kate's sister-in-law, Kay, were all ready there. They quickly took us all to a family waiting room and then Kate and I to rooms where we could change into those famous gowns with open backs, however, they gave us nice robes to put on top. It was kind of strange to remove my wedding band for the first time since we got married, almost 46 years ago. Barbara put it on and wore it the whole time.
We went back to the family waiting room. They came for Kate first because they needed to start an IV on her. My surgeon, Dr. Delpizzo, came and got me and marked my left side with his initials.
About 7:00am the nurse anesthetist (N/A) came and got me and we walked into the operating room. I layed down on the table and there was flurry of activity. They put compression legging on my legs, something on my back and an IV port in my left hand. Everyone was very nice and they explained everything to me as they did it. I thought of a recent Netflx that we saw where everyone was singing in the operating room. However, this group seemed totally focused on the task at hand. Very comforting.
The N/A said something about starting some anesthia and that is the last thing that I remember. I thought that they ask you to count -- I guess not.
I will continue in the next installment to keep these in reasonable size pieces. I, also, might need a short snooze at this point.
Friday, April 2, 2010
T+1
Short note....
All went well and all kidneys are working! The pain is less today and I've been up and walking. Very tired. Visited Kate and she was sleeping.
Our son, Norm and good friend, Marion were here yesterday and today. That was so special! zzzz
All went well and all kidneys are working! The pain is less today and I've been up and walking. Very tired. Visited Kate and she was sleeping.
Our son, Norm and good friend, Marion were here yesterday and today. That was so special! zzzz
Wednesday, March 31, 2010
T - 1
Today Barbara and I head to NYC and I begin the pre-op prep. Somehow, Kate has escaped this part -- she owes me! We will not have internet access in the apartment, but will have e-mail on our phones.
I have been reflecting on this journey that began shortly before New Years and have come up with some random thoughts:
Our lives are always so busy and so full, but we are able to quickly change priorities and the things that were so important can't even be remembered.
It takes two people to have surgery and you have to be in good condition. No way could I imagine doing this alone or if I was sick.
My initial thoughts about surgery in general and doing this kidney donation was that it would be scary. Once I started to learn about it and get a handle on exactly what was going to happen, I have no apprehension or anxiety at all. Meeting the hospital staff and having confidence in them is very comforting and reassuring.
Throughout this journey I have experienced a tremendous outpouring of support from family, friends, people I hardly knew and people that I didn't know at all. Your thoughts and prayers have been very heartwarming and helpful to me.
My new friends, Jill and Emily, are donors themselves and have been very kind to answer all of my questions and offer helpful information from their experiences. This has been great.
I suspect that my next blog update will be after the operation. I will let you know where I am on the Dick Cheney pain scale.
I will try to do some Twitter updates in the interim.
Talk to you tomorrow.
I have been reflecting on this journey that began shortly before New Years and have come up with some random thoughts:
Our lives are always so busy and so full, but we are able to quickly change priorities and the things that were so important can't even be remembered.
It takes two people to have surgery and you have to be in good condition. No way could I imagine doing this alone or if I was sick.
My initial thoughts about surgery in general and doing this kidney donation was that it would be scary. Once I started to learn about it and get a handle on exactly what was going to happen, I have no apprehension or anxiety at all. Meeting the hospital staff and having confidence in them is very comforting and reassuring.
Throughout this journey I have experienced a tremendous outpouring of support from family, friends, people I hardly knew and people that I didn't know at all. Your thoughts and prayers have been very heartwarming and helpful to me.
My new friends, Jill and Emily, are donors themselves and have been very kind to answer all of my questions and offer helpful information from their experiences. This has been great.
I suspect that my next blog update will be after the operation. I will let you know where I am on the Dick Cheney pain scale.
I will try to do some Twitter updates in the interim.
Talk to you tomorrow.
Tuesday, March 30, 2010
T - 2 Call from the Surgeon's Office
I got a call from the surgeon's secretary that the hospital's PR dept wants me to sign a release for them to video tape the operation. This looks like it could be my big chance to get into show business. I am looking for an agent and I heard that Brad Pitt is getting kind of worried. The only risk is if one of the drapes slip, I could suddenly become a porno star.
T - 2 (Tuesday)
Today is packing for the trip to the apartment in NYC and stay at the hospital -- one of the toughest parts of this whole thing -- I never know what to pack.
It was pouring so hard that it reminded me of being in the Philippines during a monsoon in 1972.
Kate called early this morning and asked if we wanted to go to mass. So, Barbara and I and Kate and Fran went to 9:00am mass at St Martin of Toures in Bethpage. After mass the priest annointed Kate and I.
We then went to BestBuy to get a router so that we could both be on the internet at the same time. The one that I had brought finally died -- it was pretty old and needed to be updated anyway. We also went to Target and got some last minute stuff and some food.
My friend Sr. Rosie wrote a comment about constantly checking your identity at every step along the way in the hospital. This always makes me think of going for a colonoscopy and being asked for a photo ID. My first thought was about people paying someone to take their SATs, but a colonoscopy ??
The weather showed some signs of brightening up in the afternoon, but has turned dark again. We would love to be able to go out and walk.
It was pouring so hard that it reminded me of being in the Philippines during a monsoon in 1972.
Kate called early this morning and asked if we wanted to go to mass. So, Barbara and I and Kate and Fran went to 9:00am mass at St Martin of Toures in Bethpage. After mass the priest annointed Kate and I.
We then went to BestBuy to get a router so that we could both be on the internet at the same time. The one that I had brought finally died -- it was pretty old and needed to be updated anyway. We also went to Target and got some last minute stuff and some food.
My friend Sr. Rosie wrote a comment about constantly checking your identity at every step along the way in the hospital. This always makes me think of going for a colonoscopy and being asked for a photo ID. My first thought was about people paying someone to take their SATs, but a colonoscopy ??
The weather showed some signs of brightening up in the afternoon, but has turned dark again. We would love to be able to go out and walk.
T - 2
Yesterday, Monday, Kate and I had our final testing and cross-match at Presbyterian hospital. We still have separate teams, but did meet up a lot in waiting rooms.
First, I gave more vials of blood and urine sample, then we (Barbara and I) met with my social worker, Ilana, and she gave us the 10,000 ft overview of what will happen during my time at the hospital.
Next was a meeting with Marian, my transplant coordinator. She gave us the 100 ft version and a detailed preparation list for the surgery. Only clear liquids starting at noon on Wednesday and nothing after midnight -- not even water. Plus drinking the stuff to clean out your digestive tract. Maybe I will loose those couple of stubborn pounds from the holidays!
I can't lift anything greater than 10 pounds for a month, and no driving for 10 days - I think that has to do with drugs-- don't want to get a DUI.
Then I met with the surgeon, Dr Delpizzo. We really liked him. Now we get down to where the rubber meets the road. He said that my kidneys were both the same size and that he would take out the left one because it is easier to remove and reconnect -- longer plumbing. He uses a procedure where there is one, 2 - 3 vertical incision by your navel. He has done this procedure for his last 80 plus kidney removals. It heals faster and has less scarring -- important for picking up chicks at the beach.
He said to avoid core exercise -- no ball class for a month, but I can bike after two weeks. He also said that I was the first patient on Thursday morning and that the actual surgery is about 1.5 hours, although total time (prep, surgery and recovery room) would be about three hours. We made our follow up appointment for Thursday, 7 April, so that we can drive back to VA with Patricia and Theresa on Friday.
Then I had an EKG and was done for the day.
Throughout the various visits there was a continuing discussion of pain management. They even have a rating system with a scale of one to ten with a chart. A smiley face is one (no pain) and a picture of Dick Cheney is ten.
Another recurring theme was the bloating that you feel due to the injection of carbon dioxide to expand your stomach to make it easier for the surgeon to work. One of the major criteria for being discharged is the ability to pass gas. I found this very encouraging -- I will be out of there in no time.
We said good by to Kate and Fran and headed for a NY Deli for lunch.
First, I gave more vials of blood and urine sample, then we (Barbara and I) met with my social worker, Ilana, and she gave us the 10,000 ft overview of what will happen during my time at the hospital.
Next was a meeting with Marian, my transplant coordinator. She gave us the 100 ft version and a detailed preparation list for the surgery. Only clear liquids starting at noon on Wednesday and nothing after midnight -- not even water. Plus drinking the stuff to clean out your digestive tract. Maybe I will loose those couple of stubborn pounds from the holidays!
I can't lift anything greater than 10 pounds for a month, and no driving for 10 days - I think that has to do with drugs-- don't want to get a DUI.
Then I met with the surgeon, Dr Delpizzo. We really liked him. Now we get down to where the rubber meets the road. He said that my kidneys were both the same size and that he would take out the left one because it is easier to remove and reconnect -- longer plumbing. He uses a procedure where there is one, 2 - 3 vertical incision by your navel. He has done this procedure for his last 80 plus kidney removals. It heals faster and has less scarring -- important for picking up chicks at the beach.
He said to avoid core exercise -- no ball class for a month, but I can bike after two weeks. He also said that I was the first patient on Thursday morning and that the actual surgery is about 1.5 hours, although total time (prep, surgery and recovery room) would be about three hours. We made our follow up appointment for Thursday, 7 April, so that we can drive back to VA with Patricia and Theresa on Friday.
Then I had an EKG and was done for the day.
Throughout the various visits there was a continuing discussion of pain management. They even have a rating system with a scale of one to ten with a chart. A smiley face is one (no pain) and a picture of Dick Cheney is ten.
Another recurring theme was the bloating that you feel due to the injection of carbon dioxide to expand your stomach to make it easier for the surgeon to work. One of the major criteria for being discharged is the ability to pass gas. I found this very encouraging -- I will be out of there in no time.
We said good by to Kate and Fran and headed for a NY Deli for lunch.
Monday, March 29, 2010
T - 4
We are getting ready to leave to catch the 6:30am train from Bethpage to Penn Station. It is raining cats and dogs. More later.
Sunday, March 28, 2010
T - 5
We are Cosi's restaurant waiting for the bus. Kind of a cold, damp morning, but there is a good chance that we will get to NY before the rain.
I got a call from my friend Rosie (actually, Sr Rosie) last night. She had a knee replacement this week and called to give me an update. She said that she was still nauseous from the pain killers and the morphine made her itchy. I always associate morphine with WW-II movies. I imagine that a knee replacement is much more painful than a kidney removal. I think of a kidney removal as what John Wayne would call a "flesh wound" -- where he gets back on his horse and kills 20 more bad guys and is fully recovered by the next scene.
The good news is that they let here use her Blackberry the whole time in the hospital. She has only had it a short time, but is already addicted.
I woke up in the middle of the night thinking about packing and what to bring. We have four days before surgery that look like cold and rain, then two days in the hospital and then a week that could be much warmer weather. I also need loose fitting clothes -- I am not sure how long. Plus our electronic stuff -- computers, phones, kindles, iPods and the appropriate chargers. The whole thing reminds me of doing triathlons where you need to have your swim, bike and run stuff in the right transition areas before the race.
Tomorrow we will be at the hospital most of the day, so we will try to do some Twitter updates from our cell phones.
I got a call from my friend Rosie (actually, Sr Rosie) last night. She had a knee replacement this week and called to give me an update. She said that she was still nauseous from the pain killers and the morphine made her itchy. I always associate morphine with WW-II movies. I imagine that a knee replacement is much more painful than a kidney removal. I think of a kidney removal as what John Wayne would call a "flesh wound" -- where he gets back on his horse and kills 20 more bad guys and is fully recovered by the next scene.
The good news is that they let here use her Blackberry the whole time in the hospital. She has only had it a short time, but is already addicted.
I woke up in the middle of the night thinking about packing and what to bring. We have four days before surgery that look like cold and rain, then two days in the hospital and then a week that could be much warmer weather. I also need loose fitting clothes -- I am not sure how long. Plus our electronic stuff -- computers, phones, kindles, iPods and the appropriate chargers. The whole thing reminds me of doing triathlons where you need to have your swim, bike and run stuff in the right transition areas before the race.
Tomorrow we will be at the hospital most of the day, so we will try to do some Twitter updates from our cell phones.
Wednesday, March 24, 2010
T - 8
Eight days to go. We are trying to think of things that we will need for the trip. Loose clothes and a small case to pack (repack) for our two day stay in the hospital. Since it is my first time in a hospital, I really don't know what is needed. It is only two days, I should be able to get through with whatever we wind up bringing.
Amazingly enough, I don't feel anxious or apprehensive. I guess I have done enough research that I feel comfortable with the whole thing. Also, my health and conditioning are good (knock wood) so that makes me feel confident about the whole thing. I am looking at the recovery as a challenge to get back in shape quickly. Not pushing it, but the right combination of rest and exercise.
My kids surprised me with a Kindle yesterday. What a great idea. I am loving it!
Norm
Amazingly enough, I don't feel anxious or apprehensive. I guess I have done enough research that I feel comfortable with the whole thing. Also, my health and conditioning are good (knock wood) so that makes me feel confident about the whole thing. I am looking at the recovery as a challenge to get back in shape quickly. Not pushing it, but the right combination of rest and exercise.
My kids surprised me with a Kindle yesterday. What a great idea. I am loving it!
Norm
Monday, March 22, 2010
T - 10
We have 10 days to go.
Today Barbara made reservations on the Vamoose bus for next Sunday. We leave at 10:30am.
Monday (29 Mar) will be a full day of testing and meetings at the hospital for Kate and I.
Tuesday and Wednesday we will spend in NYC -- we expect to do a lot of walking -- which we enjoy (hope the weather is good).
Thursday (1 April) we report to the hospital at 5:30am.
While we are in the hospital, I am not sure about internet access. Expect to be doing most updates on Twitter. (www.twitter.com [follow: normbarb])
Today Barbara made reservations on the Vamoose bus for next Sunday. We leave at 10:30am.
Monday (29 Mar) will be a full day of testing and meetings at the hospital for Kate and I.
Tuesday and Wednesday we will spend in NYC -- we expect to do a lot of walking -- which we enjoy (hope the weather is good).
Thursday (1 April) we report to the hospital at 5:30am.
While we are in the hospital, I am not sure about internet access. Expect to be doing most updates on Twitter. (www.twitter.com [follow: normbarb])
Friday, March 19, 2010
T-13
Not too much new on my end. Got in a good weight lifting workout and 25 more miles of biking. I have also pushed up my jump rope workouts from 200 to 300 per day. I am hoping that improved conditioning will reduce my recovery time after the operation.
Kate is having some problems with donating her own blood for the operation. The hospital coordinator did not schedule this in time and she will not have enough time to donate the 3 pints that she needs.
I also got a very nice call from my friend Patricia (who I went to St. Kilian's elementary school with). She had surgery recently and filled me in on things to expect and some tips that will be helpful to me during recovery.
Tomorrow looks like another good day for biking. So happy to have warm weather again.
Kate is having some problems with donating her own blood for the operation. The hospital coordinator did not schedule this in time and she will not have enough time to donate the 3 pints that she needs.
I also got a very nice call from my friend Patricia (who I went to St. Kilian's elementary school with). She had surgery recently and filled me in on things to expect and some tips that will be helpful to me during recovery.
Tomorrow looks like another good day for biking. So happy to have warm weather again.
Thursday, March 18, 2010
T-14: Got the letter from my Transplant coordinator
Mar 29: 9:00am - Show up at the hospital. They will do a final pre-transplant check-up and final cross-match. Every time I hear that, I think of, "Flight attendants prepare doors and cross-check."
Mar 29: 11:00am - Meeting with the doctor -- not sure if this is the surgeon or pre-transplant check-up.
April 1: 5:30am - Admission for surgery. I hope this is an indication that my surgery will be early -- like the first one -- I am a morning person (I hope the surgeon is too!)
Two weeks from today, the transplant will be done and we will be working on recovery!
Mar 29: 11:00am - Meeting with the doctor -- not sure if this is the surgeon or pre-transplant check-up.
April 1: 5:30am - Admission for surgery. I hope this is an indication that my surgery will be early -- like the first one -- I am a morning person (I hope the surgeon is too!)
Two weeks from today, the transplant will be done and we will be working on recovery!
Wednesday, March 17, 2010
T - 15
17 March 2009 Happy St Patrick's Day. No new news from Kate or my (we each have our own) transplant team.
Two of my daughters (Theresa and Patricia) have offered to drive to NY and take us home after the surgery, actually it is about a week after the surgery as I have to stay for a follow up visit before returning to VA.
I was a little concerned that this would be a painful experience with these two, but they have promised there would be no laughing!
Looks like a beautiful day in VA, so it is back on the bike.
Two of my daughters (Theresa and Patricia) have offered to drive to NY and take us home after the surgery, actually it is about a week after the surgery as I have to stay for a follow up visit before returning to VA.
I was a little concerned that this would be a painful experience with these two, but they have promised there would be no laughing!
Looks like a beautiful day in VA, so it is back on the bike.
Monday, March 15, 2010
Kate's Health
15 March 2010: Just received a note from Kate. Her fatigue has magnified and she has been getting nauseous. Her doctor said that she has "hit the wall". Not sure if we can move things up, but it sounds like a good idea to me.
Thursday, March 11, 2010
Donation Risk Information from CNN
The following article was posted by CNN:
http://tinyurl.com/KidneyDonorRisk
I have copied the article below in case it is removed by CNN.
One startling revelation in the article;
"...risk of death, the most serious surgical complication,”
This ranking would never have occurred to me, but not having gone to medical school, I will have to defer to Dr. Zand.
March 9, 2010
Study: Donating a kidney doesn’t boost risk of premature death
-AET
By Caitlin Hagan
CNN Medical Associate Producer
Live kidney donation is a safe, effective procedure that poses little risk for the premature death of the donor, reports a new study in the Journal of the American Medical Association. That’s welcome news to the more than 106,000 people on the United Network for Organ Sharing (UNOS) transplant list who are waiting on potential donors as of this writing.
The JAMA study is the first of its kind to review the health of live kidney donors over an extended period of time. Researchers looked through more than 80,000 records of people who had donated a kidney between 1994 and 2001. They found that for every 10,000 donors, there were only 3.1 deaths within 90 days of the transplant. Being over age 50 or obese at the time of the transplant did not increase a donors risk of dying prematurely.
“Kidney donation surgery is an extraordinarily safe operation in terms of...risk of death, the most serious surgical complication,” explains Dr. Martin Zand, medical director of the Kidney and Pancreas Transplant Programs at the University of Rochester Medical Center
Zand says that recipients worrying about potential kidney donors’ health has become major point of concern during the transplant process, even though the number of live kidney transplants performed annually has nearly doubled over the past 15 years. Today nearly 6,000 live kidney transplants happen every year.
“By donating a kidney, they’re concerned their donor will put themselves at risk for everything from minor surgery to development of kidney disease to death,” says Zand. ‘These donors are family members or partners but also people that come forward from the community.”
The hope within the transplant community is that this information will ease some of the concerns expressed by both potential donors and their recipients, particularly because no other research has followed so many live kidney donors for so long.
Generally donors must complete an education process that outlines the risks associated with transplants, before they can donate a kidney. The goal is to make sure each donor is as informed as possible about the surgery they’ve elected to have.
‘There’s an enormous value to this, in terms of public health, in terms of medical practice, - says Zand.
Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day, not all are posted. Our hope is That much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of The blog. We encourage you to focus your comments on Those medical and health topics and we appreciate your input. Thank you for your participation.
Posted by: Caitlin Hagan - CNN Medical Associate Producer
Filed under Health
http://tinyurl.com/KidneyDonorRisk
I have copied the article below in case it is removed by CNN.
One startling revelation in the article;
"...risk of death, the most serious surgical complication,”
This ranking would never have occurred to me, but not having gone to medical school, I will have to defer to Dr. Zand.
March 9, 2010
Study: Donating a kidney doesn’t boost risk of premature death
-AET
By Caitlin Hagan
CNN Medical Associate Producer
Live kidney donation is a safe, effective procedure that poses little risk for the premature death of the donor, reports a new study in the Journal of the American Medical Association. That’s welcome news to the more than 106,000 people on the United Network for Organ Sharing (UNOS) transplant list who are waiting on potential donors as of this writing.
The JAMA study is the first of its kind to review the health of live kidney donors over an extended period of time. Researchers looked through more than 80,000 records of people who had donated a kidney between 1994 and 2001. They found that for every 10,000 donors, there were only 3.1 deaths within 90 days of the transplant. Being over age 50 or obese at the time of the transplant did not increase a donors risk of dying prematurely.
“Kidney donation surgery is an extraordinarily safe operation in terms of...risk of death, the most serious surgical complication,” explains Dr. Martin Zand, medical director of the Kidney and Pancreas Transplant Programs at the University of Rochester Medical Center
Zand says that recipients worrying about potential kidney donors’ health has become major point of concern during the transplant process, even though the number of live kidney transplants performed annually has nearly doubled over the past 15 years. Today nearly 6,000 live kidney transplants happen every year.
“By donating a kidney, they’re concerned their donor will put themselves at risk for everything from minor surgery to development of kidney disease to death,” says Zand. ‘These donors are family members or partners but also people that come forward from the community.”
The hope within the transplant community is that this information will ease some of the concerns expressed by both potential donors and their recipients, particularly because no other research has followed so many live kidney donors for so long.
Generally donors must complete an education process that outlines the risks associated with transplants, before they can donate a kidney. The goal is to make sure each donor is as informed as possible about the surgery they’ve elected to have.
‘There’s an enormous value to this, in terms of public health, in terms of medical practice, - says Zand.
Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day, not all are posted. Our hope is That much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of The blog. We encourage you to focus your comments on Those medical and health topics and we appreciate your input. Thank you for your participation.
Posted by: Caitlin Hagan - CNN Medical Associate Producer
Filed under Health
Monday, March 8, 2010
23 Days to Go
Not too much is happening at this point. Got some loose fitting drawstring pants on the advice of my new donor friends, Jill and Emily. Expect to get a letter with more details from the donor coordinator at Presbyterian, but not sure how soon that will happen.
Stepping up my weight lifting and aerobic workouts, and biking whenever the weather is good (got in 42 miles so far this week).
Stepping up my weight lifting and aerobic workouts, and biking whenever the weather is good (got in 42 miles so far this week).
Monday, March 1, 2010
We have a Transplant Date
The date is: 1 April 2010 (It is April's Fools Day -- but this is for real!)
Medically cleared to move forward!
1 March 2010: Received the following message from my transplant coordinator:
"I received the electrocardiogram report and all is within normal limits.
You are medically cleared to move forward. Your sister's coordinator is working on a date with her and as soon as I have information I will be in touch."
"I received the electrocardiogram report and all is within normal limits.
You are medically cleared to move forward. Your sister's coordinator is working on a date with her and as soon as I have information I will be in touch."
Tuesday, February 23, 2010
We are Go for the Transplant
23 Feb: Kate called last night. Her team highly recommended that she go ahead with the donor transplant. Right now she is saying mid-April. However, I might like to do it a bit sooner since we have reservations to go to CA in late May and I would like all the recovery time I can get before flying cross country. I will write to my transplant team coordinator today and ask for their recommendation.
Friday, February 19, 2010
Things May be Speeding Up
18 February 2010: Got a note from Kate with the following information from her Transplant Coordinator:
"I understand that originally you wanted to hold out for the SPK* but I do need to inform you that as a blood type 0 your wait time is significantly longer. Currently, we have 10 patients listed prior to you and half of these patients have been waiting for over two years. As discussed at our first meeting your blood type makes a significant difference in your wait time. At this time we are advising our patients with blood type 0 who have donors to go ahead with living donation secondary to this long wait time. We have also advised our patients on the 0 SPK list to multi-list with centers outside of our region but unfortunately it is still a long wait. "
* SPK = (Simultaneous Pancreas / Kidney ) transplant
Kate is meeting with the head of her transplant team on Monday, 22 February.
"I understand that originally you wanted to hold out for the SPK* but I do need to inform you that as a blood type 0 your wait time is significantly longer. Currently, we have 10 patients listed prior to you and half of these patients have been waiting for over two years. As discussed at our first meeting your blood type makes a significant difference in your wait time. At this time we are advising our patients with blood type 0 who have donors to go ahead with living donation secondary to this long wait time. We have also advised our patients on the 0 SPK list to multi-list with centers outside of our region but unfortunately it is still a long wait. "
* SPK = (Simultaneous Pancreas / Kidney ) transplant
Kate is meeting with the head of her transplant team on Monday, 22 February.
Thursday, February 18, 2010
The Tests Go On - 16 February 2010
17 February 2010: Echo Cardiogram
It is amazing how much you can see (wish I knew what it all meant). The technician said that I had a "Beautiful heart". I suppose that is thanks to Barbara who got me into biking, running and swimming (all the time I thought she was trying to kill me!) I will get the results from nephrologist (pronounced: kidney doctor) next week.
I am also doing another 24 hour urine test - which just ended. (Praise the Lord!)
Tomorrow we are off for a week of hiking in Georgia.
It is amazing how much you can see (wish I knew what it all meant). The technician said that I had a "Beautiful heart". I suppose that is thanks to Barbara who got me into biking, running and swimming (all the time I thought she was trying to kill me!) I will get the results from nephrologist (pronounced: kidney doctor) next week.
I am also doing another 24 hour urine test - which just ended. (Praise the Lord!)
Tomorrow we are off for a week of hiking in Georgia.
Wednesday, February 10, 2010
Blog Update Notifications
Is anyone getting automatic notifications when there are Blog updates or comments? If so, please let me know what settings are required. It sounds like a "no brainer" but I cannot find this issue addressed at all in the help topics.
Norman, our son, volunteers to be a donor
Norman has been playing phone tag with Presbyterian hospital for over a week. He is now on the list as a backup donor for Kate. We are proud of him.
Sunday, February 7, 2010
Screening Results
Just checked my phone messages from California. Marian, my transplant coordinator, called on Friday and said that all of my tests are good. The doctor will send a prescription for echo cardiogram and I have to do another 24 hours urine test, ugh!
One step closer.
Saturday, February 6, 2010
6 February - Transplant Video and Interview
Just got this link:
Very good. You will be able to do your own transplant after watching this. Also, good info on recovery. This is very current.
No news yet on screening results.
Wednesday, February 3, 2010
Monday, 1 February Screening - Continued
We are home now. I had hoped to do an update on the bus, but it was too bumpy to type. My typing is bad under the best of conditions.
After our meeting with Ilana, the social worker, we met with Dr. Serur, the Nephrologist (Kidney doctor). That seemed to be mostly about our general health; smoking, drinking, exercise, etc. He seemed pretty happy with our lifestyle -- even asked Barbara if she wanted to be a donor! I think he is going to give me a prescription for an echo cardiogram, since I have never had one and my BP is a bit high.
After that meeting, we said goodbye to Marion, our coordinator, and left the transplant center for the basement where they did a chest x-ray and CT scan of my pelvis and CTA of my abdomen. The CT and CTA are to identify blood flow to and from the kidneys. The CTA part required injecting dye into my veins. The nurse told me that it would make me feel warm -- and, boy, was she right -- I wonder where I can get some of that stuff.
Next, I went to a different floor where they did an EKG. This went very quickly. At the end of the test, the technician said to me; "I know you are a donor -- good luck to you." That was very nice of her.
That concluded my screening. It was great to get outside. The weather had warmed up to the 30's so we decided to walk toward the apartment and, of course, get something to eat. It was after 2:00 pm and I had only been allowed a granola bar and bottle of water since the night before.
It was so helpful having Barbara with me through all of this, besides moral support, she handles all of the logistics; food, transportation, paperwork, etc. Not sure where I would have wound up without her -- she did a great job of negotiating the NYC subway system. We asked both Marion and Ilana if Barbara would be able to stay with me at the hospital. They said that donors usually get private rooms, so it would likely be possible.
We went to a supermarket where they had a salad bar and a place to sit down and eat.
After lunch we started walking toward home. It was nice to see all of the sites of NYC, especially the people watching. As the day went on, it got colder and a bit windy. We got to Whole Foods somewhere about 5:00 pm. We setup our netbook computer on their WiFi, got a hot dinner, returned some phone calls and just relaxed.
Kate called while we were in Whole Foods and we had a long talk. She seemed upbeat. She told me that she was applying to get on two other waiting lists, Charlotte, NC and one in Nebraska (I believe that is correct). We discussed the logistics of staying in the NY area for the surgery and Kate's desire to hold out as long as she can for a pancreas and kidney double transplant.
We then walked about another 6 blocks back to the apartment. Barbara checked her pedometer -- we had walked almost 8 miles.
Tuesday, February 2, 2010
Monday, 1 February - Screening
We got up early, actually our usual times -- Barbara at 5am and me about 5:30am. I had to be careful not to eat or drink anything. I finished up my 24 hour urine test and wound up with two large bottles. We packed these carefully in plastic bags and kept them refridgerated. At the last minute we put them in one of our knapsacks. We left at 7:00 am for my 9:00 am appointment. The trip was actually less than an hour, but we didn't want to take any chances.
It was another cold morning when we took the NY subway from Gerry's apartment in lower Manhattan to Presbyterian Hospital. The subway was packed like sardines -- guess this is typical for NYC. We got a real laugh when they announced over the PA that all backpacks were subject to search. How would we ever explain this!
We got off the subway and walked 5 or 6 blocks to the hospital. We got there at 7:45 am. Everyone was just arriving, but they brought us into the transplant waiting area right away.
We first met with Marian our coordinator (there is a separate team for the donor and recipient). Marion took some data and explained what was going to happen during the screening.
Next I had 8 vials of blood drawn and BP check. My white coat high BP kicked in as usual.
Then we met with the social worker, Ilana. She was very nice and explained the whole procedure, including preparation, operation (procedure), recovery and follow up visits. She had to ask multiple times if I was being paid to donate. We signed some papers showing that everything had been explained to us.
We have to get ready to catch the bus for home, so I will continue this the next time that I get internet access.
It was another cold morning when we took the NY subway from Gerry's apartment in lower Manhattan to Presbyterian Hospital. The subway was packed like sardines -- guess this is typical for NYC. We got a real laugh when they announced over the PA that all backpacks were subject to search. How would we ever explain this!
We got off the subway and walked 5 or 6 blocks to the hospital. We got there at 7:45 am. Everyone was just arriving, but they brought us into the transplant waiting area right away.
We first met with Marian our coordinator (there is a separate team for the donor and recipient). Marion took some data and explained what was going to happen during the screening.
Next I had 8 vials of blood drawn and BP check. My white coat high BP kicked in as usual.
Then we met with the social worker, Ilana. She was very nice and explained the whole procedure, including preparation, operation (procedure), recovery and follow up visits. She had to ask multiple times if I was being paid to donate. We signed some papers showing that everything had been explained to us.
We have to get ready to catch the bus for home, so I will continue this the next time that I get internet access.
Monday, February 1, 2010
Monday Updates on Twitter
We will be at the hospital all day and try to do some interim progress updates on Twitter. It is difficult to post to the blog from my Droid (phone). Will do blog update tonight.
www.Twitter.com
Follow: normbarb
www.Twitter.com
Follow: normbarb
31 January - Sunday
Slept in until 7:30am -- can't remember that last time I slept that late. Worked out at the great Gym in the basement of Gerry's apartment.
In the afternoon we did a dry run to the hospital to make sure we knew the subway system and where we had to go at the hospital.
By noon it was evident that the 24 hour collection bottle was nowhere near large enough. No pharmacies sell these things so we had to go to plan B and find a bottle with a wide mouth and secure top -- we could not find anything in supermarkets or even Bed Bath and Beyond. The final solution was to get a funnel and large water bottle.
Kate - if you get this kidney, you are going to have to change your life style.
In the afternoon we did a dry run to the hospital to make sure we knew the subway system and where we had to go at the hospital.
By noon it was evident that the 24 hour collection bottle was nowhere near large enough. No pharmacies sell these things so we had to go to plan B and find a bottle with a wide mouth and secure top -- we could not find anything in supermarkets or even Bed Bath and Beyond. The final solution was to get a funnel and large water bottle.
Kate - if you get this kidney, you are going to have to change your life style.
Kate's Numbers
Sept = 22
Oct = 20
Nov = ?
Dec = 19
Jan = 17
Fifteen = Kidney failure and we do the transplant. Extrapolation indicates that it is soon.
Oct = 20
Nov = ?
Dec = 19
Jan = 17
Fifteen = Kidney failure and we do the transplant. Extrapolation indicates that it is soon.
Sunday, January 31, 2010
When is the operation?
This has been a very common question.
First some medical euphemisms:
Operation = Procedure
Pain = Discomfort
With that out of the way, back to the answer.
Kate has diabetes, the best solution is a kidney and pancreas. I can't do that unless I walk in front of a Metro bus. She is on two waiting lists. That would be the best solution and first choice.
However, since her kidney function is decreasing, she needs a backup in case they fail.
Normal numbers are around 80 to 90 (think I got that right ) Kate's last number that she gave me was 19. Fifteen is kidney failure, so it could be any time. We have to be ready.
First some medical euphemisms:
Operation = Procedure
Pain = Discomfort
With that out of the way, back to the answer.
Kate has diabetes, the best solution is a kidney and pancreas. I can't do that unless I walk in front of a Metro bus. She is on two waiting lists. That would be the best solution and first choice.
However, since her kidney function is decreasing, she needs a backup in case they fail.
Normal numbers are around 80 to 90 (think I got that right ) Kate's last number that she gave me was 19. Fifteen is kidney failure, so it could be any time. We have to be ready.
Saturday, January 30, 2010
Call from Helen and Twitter
As we were walking to the supermarket in NYC, my friend, Helen Westhall-Healy, called me. Helen is a friend from St Kilian's elementary school in Farmingdale. She told me about about her cousin (I hope I got that right) who had a kidney transplant about three years ago. Both the recipient and donor are doing great.
The donor (who was about 60 at the time), came home the next day and was out walking two days later. She said that she does not feel any difference having one kidney. The recipient is doing wonderful also. A very reassuring story and I am so glad that Helen shared that with me.
I also got a note from a donor that I contacted on Twitter. She said it"could not have gone smo0ther". Her donation was ten years ago, so the technology is even better today. I am grateful to Emily for her encouragement.
The donor (who was about 60 at the time), came home the next day and was out walking two days later. She said that she does not feel any difference having one kidney. The recipient is doing wonderful also. A very reassuring story and I am so glad that Helen shared that with me.
I also got a note from a donor that I contacted on Twitter. She said it"could not have gone smo0ther". Her donation was ten years ago, so the technology is even better today. I am grateful to Emily for her encouragement.
30 January - NYC
Looks like we got out of DC just in time -- they got some significant snow. No snow in NYC, just bitter cold. We got to NYC a little after noon, figured out the subway card system (different that DC Metro). About any hour later we were in Gerry's apartment -- it is great! We are all moved in and very comfortable. Thank you, Gerry.
We got some hot soup for lunch and then scoped out the church and did some grocery shopping. After bringing the groceries home, we walked back to church. We had NY pizza for dinner. Not quite used to all this NY traffic -- seems like cars coming at you from all directions.
Tomorrow I start the 24 hour urine test. Kind of keeps you on a short leash.
We got some hot soup for lunch and then scoped out the church and did some grocery shopping. After bringing the groceries home, we walked back to church. We had NY pizza for dinner. Not quite used to all this NY traffic -- seems like cars coming at you from all directions.
Tomorrow I start the 24 hour urine test. Kind of keeps you on a short leash.
Friday, January 29, 2010
NYC Trip 30 January and Other Stuff
We are planning to go to our daughter Patricia's house tonight (she lives 15 minutes from the bus stop) and catch an earlier bus in the morning to beat the snow. We are not suppose to get too much, but these things have a way of changing.
We are going to try doing interim updates on Twitter -- www.twitter.com and follow "normbarb" to get these updates. These can be done from our phones so Barbara will be able to do short updates from the hospital. I have to get it setup on her Blackberry.
Made a copy of my colonoscopy report -- one of the most import documents in my life as it will allow me to escape doing that procedure again.
We are trying to figure out if subscribers to this blog get automatic updates -- Barbara doesn't seem to be getting them. If you have figured this out, please leave a comment. Comments are always welcome.
Tuesday, January 26, 2010
Screening - Blood Test Results
20 January 2010: Received Blood Test Results
Same blood type
4 of 6 Antigens match
Cross Match: Negative (This is actually a positive result -- meaning that there was no rejection when our blood was mixed)
Doug had same results, except for 3 of 6 Antigen match.
Letter also provided information for setting up an appointment. Barbara said to call immediately -- so I did. We were out biking when I got the call back from the hospital to set up the appointment.
We set up the first available appointment, Monday, 1 Feb 2010. They said they would send instructions and complete details in the mail. They also said that the testing would take from 9am until 4pm and I would need to do a 24 hour urine test the day before.
21 January: Learned to spell Presbyterian.
24 January: Kate informed us that her brother-in-law, Gerry, offered to let us stay at his Manhattan apartment. Gerry sent us a comprehensive e-mail including a link to the website:
25 January: Received letter from the hospital with the instructions and complete list of tests. It is pretty much every test known to man and stops just short of an autopsy. I have to fast until about 1pm on the day of the testing. The good news is that I bring my colonoscopy test report, so I should escape doing that again -- a possible deal breaker.
25 January: Watched a video of kidney transplant from Univ of Md Med College. Kidney removal looked pretty complex -- lots of stuff in there and none of it was labelled. I hope this surgeon got an "A" in kidneys.
26 January: Watching weekend snow report. May have to go on Friday instead of Saturday.
Screening Begins - Blood Tests
28 December 2009: Received FedEx package with seven vials for blood draw. Also, received billing information (all costs covered) and FedEx packaging for return to Presbyterian hospital. Also, instructions that blood should be drawn on Monday, 5 January 2010 and returned via Express FedEx on 6 January.
5 January 2010: Went to lab for blood draw. The last time I had that much blood drawn I got a glass of orange juice, a donut and a sticker from the Red Cross that said; "I Gave". We had scoped out an Express FedEx drop off, so we dropped it off immediately.
5 January 2010: Went to lab for blood draw. The last time I had that much blood drawn I got a glass of orange juice, a donut and a sticker from the Red Cross that said; "I Gave". We had scoped out an Express FedEx drop off, so we dropped it off immediately.
How I Found Out
17 December 2009: e-mail from Kate that she had an appointment for testing at Presbyterian hospital in NYC for Kidney and Pancreas transplant testing.
21 December 2009: e-mail from Kate that she had gone through testing at and was now on the Transplant waiting list.
22 December 2009: e-mail from Kate that her kidney function numbers were declining close to the point where she would be in kidney failure and that her doctor recommended that she obtain a living donor. She also sent links to information about the procedure and survival rates of donors!
22 December 2009: Decided to stop reading my e-mail!
22 December 2009: After 10 minutes of serious consideration and consultation with Barbara, sent Kate a note and said that I would become a donor.
21 December 2009: e-mail from Kate that she had gone through testing at and was now on the Transplant waiting list.
22 December 2009: e-mail from Kate that her kidney function numbers were declining close to the point where she would be in kidney failure and that her doctor recommended that she obtain a living donor. She also sent links to information about the procedure and survival rates of donors!
22 December 2009: Decided to stop reading my e-mail!
22 December 2009: After 10 minutes of serious consideration and consultation with Barbara, sent Kate a note and said that I would become a donor.
Sunday, January 24, 2010
Family Background
I have 5 brothers and one sister. I am the oldest -- by a lot. My youngest brother was born when I was in college.
My sister Kate was born when I was a senior in HS. She has juvenile diabetes. She is now 49 years old and experiencing the long term effects of the disease.
Disclaimer: I have no medical background, so all medical references are from a layman's perspective and may not be 100% accurate.
Subscribe to:
Comments (Atom)