Heart transplant listing
Hi everyone,
On May 3rd, John had his normal pacemaker checkup with his cardiologist, Dr D. The doctor was happy with how John is doing, but asked why he isn’t on the heart transplant waiting list yet. We told him what Dr C from the UWMC said about keeping the ‘native organ’ as long as possible and that transplant patients usually only get an additional 20 years max. He wasn’t impressed and said that he felt that he had done all there was to do and that John would be best served by getting onto the waiting list sooner rather than later. He had an echocardiogram performed to check heart function. He indicated that he was going to write a letter to Dr C at the UWMC to express his views and try to persuade her to his viewpoint.
When we went to our monthly heart failure support group on May 5th, Dr C’s nurse, Kelley, told us that Dr D had indeed written a letter and that part of it was sharply worded. Her telling left us with the impression that he ‘wondered why the UWMC was dragging their feet’, among other things.
Shortly after, Kelley called to tell us that John’s case was going to be presented to the approval board at the UWMC on Thursday, May 14th. The following day, the UWMC called to tell us that we needed to meet with one of the transplant surgeons on Wednesday, May 13th.
On the 13th, we met with the Director of the UWMC heart transplant program, Dr M, for an interview before John’s case was presented to the approval panel. First we were interviewed by one of his assistants who wanted to be sure that all the info that the UWMC had was correct. We made a few minor corrections, such as date corrections. When Dr M entered the room, the assistant gave him the paperwork and an oral history.
Dr. M told us right away that, even though John’s case was going to be presented the next day, he expected that John would not be added to the waiting list at this time. He was really able to put things into perspective for us. John’s test numbers are just too good right now. Even though John may feel tired after stress tests, the test numbers indicate that he has, that his heart has, the ability to work at an adequate level. He told us how us the system worked, that the sickest get hearts first, and that being on the list a long time really didn’t help. He told us that there are three levels of patients on the waiting list: 1A, 1B and 2. 1A patients get hearts quickest, 1B next and level 2 patients really don’t get hearts until they become 1A or 1B patients. 1A patients are in the hospital, hooked up to machines. 1B patients can be at home, but have IV drugs 24 hours a day. Clearly, it seems, someone must be a lot sicker than John is now to be added to the list.
Dr. M tried to explain that it is very difficult to predict when John might be ill enough to be on the list. He described it as being similar to someone walking along a cliff. That person might be fine for a long time and then suddenly fall. It could be, he said, six months, or John might never get sick enough to be transplanted. He does expect that John will eventually be transplanted.
Dr M was very clear that having a transplant is really just changing one set of difficulties for another set. Once transplanted, there is a continuing risk of infection, a continuing risk of rejection and frequent trips to the hospital for tests. Also, there would be $30,000 per year in medications. And that is if all went well. He gave us some of the survival stats for heart transplant patients, nationally and for the UWMC. The UWMC stats are better in all cases, a comforting thing. The UWMC just did their 500th heart transplant last week, so the numbers are from a fairly large sample. We left with the feeling that the right course is the UWMC course, to keep the ‘native organ’ as long as possible.
Today is May 21st. We just received a letter from the UWMC informing us that we were placed onto the heart transplant list at level 2 on May 14th! What a surprise. We had just become comfortable with the idea of keeping the ‘native organ’ as long as possible and then it changed. Shortly after we opened the letter, Kelly, the nurse from the UWMC called to give us the news. She has been on vacation and had just learned the news herself and hasn’t talked to Dr C yet. She did tell John that the echocardiogram that Dr D took on our last visit showed an ejection fraction of 15%. Ejection fraction is a good indicator of how well the heart functions. 60% is normal, so John functions at ¼ of normal.
We have an appointment at the UWMC on June 15th and at that time we will learn about travel restrictions and any other restrictions. We are surely going to get an education in the next few weeks. We’ll keep you posted.
John and Colleen
On May 3rd, John had his normal pacemaker checkup with his cardiologist, Dr D. The doctor was happy with how John is doing, but asked why he isn’t on the heart transplant waiting list yet. We told him what Dr C from the UWMC said about keeping the ‘native organ’ as long as possible and that transplant patients usually only get an additional 20 years max. He wasn’t impressed and said that he felt that he had done all there was to do and that John would be best served by getting onto the waiting list sooner rather than later. He had an echocardiogram performed to check heart function. He indicated that he was going to write a letter to Dr C at the UWMC to express his views and try to persuade her to his viewpoint.
When we went to our monthly heart failure support group on May 5th, Dr C’s nurse, Kelley, told us that Dr D had indeed written a letter and that part of it was sharply worded. Her telling left us with the impression that he ‘wondered why the UWMC was dragging their feet’, among other things.
Shortly after, Kelley called to tell us that John’s case was going to be presented to the approval board at the UWMC on Thursday, May 14th. The following day, the UWMC called to tell us that we needed to meet with one of the transplant surgeons on Wednesday, May 13th.
On the 13th, we met with the Director of the UWMC heart transplant program, Dr M, for an interview before John’s case was presented to the approval panel. First we were interviewed by one of his assistants who wanted to be sure that all the info that the UWMC had was correct. We made a few minor corrections, such as date corrections. When Dr M entered the room, the assistant gave him the paperwork and an oral history.
Dr. M told us right away that, even though John’s case was going to be presented the next day, he expected that John would not be added to the waiting list at this time. He was really able to put things into perspective for us. John’s test numbers are just too good right now. Even though John may feel tired after stress tests, the test numbers indicate that he has, that his heart has, the ability to work at an adequate level. He told us how us the system worked, that the sickest get hearts first, and that being on the list a long time really didn’t help. He told us that there are three levels of patients on the waiting list: 1A, 1B and 2. 1A patients get hearts quickest, 1B next and level 2 patients really don’t get hearts until they become 1A or 1B patients. 1A patients are in the hospital, hooked up to machines. 1B patients can be at home, but have IV drugs 24 hours a day. Clearly, it seems, someone must be a lot sicker than John is now to be added to the list.
Dr. M tried to explain that it is very difficult to predict when John might be ill enough to be on the list. He described it as being similar to someone walking along a cliff. That person might be fine for a long time and then suddenly fall. It could be, he said, six months, or John might never get sick enough to be transplanted. He does expect that John will eventually be transplanted.
Dr M was very clear that having a transplant is really just changing one set of difficulties for another set. Once transplanted, there is a continuing risk of infection, a continuing risk of rejection and frequent trips to the hospital for tests. Also, there would be $30,000 per year in medications. And that is if all went well. He gave us some of the survival stats for heart transplant patients, nationally and for the UWMC. The UWMC stats are better in all cases, a comforting thing. The UWMC just did their 500th heart transplant last week, so the numbers are from a fairly large sample. We left with the feeling that the right course is the UWMC course, to keep the ‘native organ’ as long as possible.
Today is May 21st. We just received a letter from the UWMC informing us that we were placed onto the heart transplant list at level 2 on May 14th! What a surprise. We had just become comfortable with the idea of keeping the ‘native organ’ as long as possible and then it changed. Shortly after we opened the letter, Kelly, the nurse from the UWMC called to give us the news. She has been on vacation and had just learned the news herself and hasn’t talked to Dr C yet. She did tell John that the echocardiogram that Dr D took on our last visit showed an ejection fraction of 15%. Ejection fraction is a good indicator of how well the heart functions. 60% is normal, so John functions at ¼ of normal.
We have an appointment at the UWMC on June 15th and at that time we will learn about travel restrictions and any other restrictions. We are surely going to get an education in the next few weeks. We’ll keep you posted.
John and Colleen
posted by Colleen and John | 8:22 PM
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