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.
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