Listing at UW Hospitals, Madison
I had always known that you could be listed at more that one center for a deceased donor kidney. If you choose to go 'multiple listing' make sure that the center belongs to a different Procurement zone (more details forthcoming a little later). Madison was. One reason I had ignored it was that this would require me to follow-up annually at more than one transplant center just to stay listed. Meaning more time away from work, more tests. I had read in the online newspaper article that Rajesh's friend (another Rajesh) who lived in Madison sent me that the wait list there was approx. 1 year. This was significantly better that 5 years at RUSH (I had just completed 2 of those years on the RUSH list). I contacted UW and sent them all the test results I had ( my google drive came in handy to share my test results) and also a link to my blog on the RUSH listing to the nurse coordinator - Jess. This was in Jul 2015. I got an eval appointment for end of Sep. Later that same week I had the third annual follow-up for continued listing at RUSH. I sent these results over to UW as I received them. I kept UW updated of all the blood test results, medication changes, doctor follow-up visits, and Rajesh's progress at RUSH. I also got the name of the Living Donor coordinator at UW and sent it to Rajesh.
A week after Rajesh's visit RUSH wanted him to see an infectious disease specialist as he tested positive for TB and there was a small chance of that transmitting to me as via his kidney. There was a lot of confusion about why this was not discovered earlier as well as what the best course of action/treatment was. At my RUSH follow-up I had asked the surgeon what a post-transplant follow-up would look like. I was not quite pleased with the follow-up protocol they had as it required me to visit RUSH twice a week for 5-6 weeks immediately post-transplant. This was mainly for blood tests and dose adjustments for anti-rejection meds. I had asked the same question earlier that week to the UW surgeon and the nurse. They require me in Madison twice in the first 5 weeks to meet with the surgeon. All blood tests would be local and results and dosage adjusted over the phone and email. More convenient.
During my visit in Oct 2015 to see Dr. Paner for my annual follow-up for RUSH I was telling her about a potential living donor transplant at the end of the year. She had noticed that my Hb was down to 7.4 (severe anemia) She brought it to my attention that I would need to get the Hb up in time for the surgery as this would be necessary. I had already started taking Ferrous Sulfate (Iron tablets) a few weeks earlier but this did not prevent the Hb from dropping. I could not get a blood transfusion prior to the transplant. I asked Dr. Dodhia for a prescription for Procrit. I started on weekly injections in mid-October.
I had always known that you could be listed at more that one center for a deceased donor kidney. If you choose to go 'multiple listing' make sure that the center belongs to a different Procurement zone (more details forthcoming a little later). Madison was. One reason I had ignored it was that this would require me to follow-up annually at more than one transplant center just to stay listed. Meaning more time away from work, more tests. I had read in the online newspaper article that Rajesh's friend (another Rajesh) who lived in Madison sent me that the wait list there was approx. 1 year. This was significantly better that 5 years at RUSH (I had just completed 2 of those years on the RUSH list). I contacted UW and sent them all the test results I had ( my google drive came in handy to share my test results) and also a link to my blog on the RUSH listing to the nurse coordinator - Jess. This was in Jul 2015. I got an eval appointment for end of Sep. Later that same week I had the third annual follow-up for continued listing at RUSH. I sent these results over to UW as I received them. I kept UW updated of all the blood test results, medication changes, doctor follow-up visits, and Rajesh's progress at RUSH. I also got the name of the Living Donor coordinator at UW and sent it to Rajesh.
A week after Rajesh's visit RUSH wanted him to see an infectious disease specialist as he tested positive for TB and there was a small chance of that transmitting to me as via his kidney. There was a lot of confusion about why this was not discovered earlier as well as what the best course of action/treatment was. At my RUSH follow-up I had asked the surgeon what a post-transplant follow-up would look like. I was not quite pleased with the follow-up protocol they had as it required me to visit RUSH twice a week for 5-6 weeks immediately post-transplant. This was mainly for blood tests and dose adjustments for anti-rejection meds. I had asked the same question earlier that week to the UW surgeon and the nurse. They require me in Madison twice in the first 5 weeks to meet with the surgeon. All blood tests would be local and results and dosage adjusted over the phone and email. More convenient.
During my visit in Oct 2015 to see Dr. Paner for my annual follow-up for RUSH I was telling her about a potential living donor transplant at the end of the year. She had noticed that my Hb was down to 7.4 (severe anemia) She brought it to my attention that I would need to get the Hb up in time for the surgery as this would be necessary. I had already started taking Ferrous Sulfate (Iron tablets) a few weeks earlier but this did not prevent the Hb from dropping. I could not get a blood transfusion prior to the transplant. I asked Dr. Dodhia for a prescription for Procrit. I started on weekly injections in mid-October.
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