No restrictions yet!
Hello everyone,
Today we met with the cardiologist at the UWMC. We are going to make a key of doctors that we see. We caused some confusion by referring to my first cardiologist as Doctor D, when many of you know that his last name starts with a B. That was because my cardiologist at the UWMC has a last name that also begins with a B. This should clear things up.
Doctor DB is John’s original cardiologist and handles John’s pacemaker/defibrillator.
Doctor CB is John’s primary cardiologist at the UWMC.
Doctor M is the lead heart transplant surgeon at the UWMC.
Doctor L is at the UWMC and developed the Seattle Heart Failure Model.
Today, we met with Dr CB and she gave us answers to many of our questions. She asked us if anyone had given us an explanation or reason to explain why the UWMC transplant panel approved us when we had been told that we were not a candidate at this time. We really appreciated that she brought it up. We had struggled with how to ask the question. She is a no nonsense person, but it was a kindness on her part to give us this information.
We’ll try to explain it as best as we can. The normal test that John takes every year is called the CPET. John has always called it a bicycle stress test. CPET stands for Cardio-Pulmonary Exercise Test, and is done on a bicycle. Much like a treadmill stress test, it additionally has the patient wear an airtight mask. The test measures oxygen in and CO2 out to give an idea of how both the heart and the lungs are working. Here is a link to a site that explains CPET more fully; http://www.mtshealth.com/CPET.html .
The results of a CPET are usually enough for the approval panel to base a decision upon, but with borderline candidates, (John), there is another test, the Seattle Heart Failure Model. This test was devised by Dr L at the UWMC using data from many studies and thousands of patients and their outcomes. It is a complicated computer program that examines many factors. Some of the factors are age, weight, blood pressure, medications, devices (John’s bi-ventricular pacemaker/defibrillator), lab results, Ejection Fraction and much more. The computer program takes all of this data and projects life expectancy percentage at one year, two years and five years and compares it to the life expectancy of the same person after transplant.
These numbers are as of May 14th of this year. Without a transplant, in his present condition John would have an 89% chance of surviving for one year, an 80% chance of surviving two years and a 57% chance of surviving five years.
The numbers after a transplant are that John would have a 95% chance of surviving one year, a 95% chance of surviving two years and a 90% chance of surviving five years. So, clearly a transplant will help John, at least statistically.
However Dr CB told us that being a status 2 doesn’t really do much as status 1A and 1B usually are transplanted. Seldom is a status 2 transplanted, but it does happen.
We asked about travel restrictions and there are none at this time. We are to let the staff at UWMC know when we do travel, even on a fishing trip. There are no alcohol restrictions at this time, but there will be later. It’s nice to know that the daily beer is OK!
John does need to have some inoculations. There is a three part series for Hepatitis B. John will get his first shot this Thursday, then another in a month and the last one six months later. In addition, this Thursday John will get a shingles inoculation and a pneumonia inoculation.
We have received a manual about transplants, and like Dr M told us (see the last blog posting), one set of problems is being traded for another with a transplant. It seems as if some infections attack almost all transplant patients, but the UWMC is on top of things and catches these quickly. There will be blood tests, biopsies and x-rays quite often at first and then taper but not ever stop. Medications will be required for the rest of life, but that is the case now. No change there! Transplanted patients are more susceptible to cancers, so they watch that closely.
We went to our first transplant support group meeting last week. An old co-worker of Colleen’s is waiting to be placed on the list. He uses oxygen bottles, but might have sleep apnea and that would keep him from being listed. He is clearly weaker than John. The group had both pre and post-transplant folks. The post-transplanted were a pretty enthusiastic crowd and the new people were terrified. We don’t count ourselves as new, since we have battled this heart failure since 1994. The diets and pills are overwhelming at first, as we remember well.
All in all, we think that it is a good thing that John is finally on the transplant waiting list. Reading some of the literature concerning what waits on the other side, the infections et al, is a bit distressing, but not overwhelming. With no restrictions, life won’t change much, at least for awhile.
Colleen & John
Today we met with the cardiologist at the UWMC. We are going to make a key of doctors that we see. We caused some confusion by referring to my first cardiologist as Doctor D, when many of you know that his last name starts with a B. That was because my cardiologist at the UWMC has a last name that also begins with a B. This should clear things up.
Doctor DB is John’s original cardiologist and handles John’s pacemaker/defibrillator.
Doctor CB is John’s primary cardiologist at the UWMC.
Doctor M is the lead heart transplant surgeon at the UWMC.
Doctor L is at the UWMC and developed the Seattle Heart Failure Model.
Today, we met with Dr CB and she gave us answers to many of our questions. She asked us if anyone had given us an explanation or reason to explain why the UWMC transplant panel approved us when we had been told that we were not a candidate at this time. We really appreciated that she brought it up. We had struggled with how to ask the question. She is a no nonsense person, but it was a kindness on her part to give us this information.
We’ll try to explain it as best as we can. The normal test that John takes every year is called the CPET. John has always called it a bicycle stress test. CPET stands for Cardio-Pulmonary Exercise Test, and is done on a bicycle. Much like a treadmill stress test, it additionally has the patient wear an airtight mask. The test measures oxygen in and CO2 out to give an idea of how both the heart and the lungs are working. Here is a link to a site that explains CPET more fully; http://www.mtshealth.com/CPET.html .
The results of a CPET are usually enough for the approval panel to base a decision upon, but with borderline candidates, (John), there is another test, the Seattle Heart Failure Model. This test was devised by Dr L at the UWMC using data from many studies and thousands of patients and their outcomes. It is a complicated computer program that examines many factors. Some of the factors are age, weight, blood pressure, medications, devices (John’s bi-ventricular pacemaker/defibrillator), lab results, Ejection Fraction and much more. The computer program takes all of this data and projects life expectancy percentage at one year, two years and five years and compares it to the life expectancy of the same person after transplant.
These numbers are as of May 14th of this year. Without a transplant, in his present condition John would have an 89% chance of surviving for one year, an 80% chance of surviving two years and a 57% chance of surviving five years.
The numbers after a transplant are that John would have a 95% chance of surviving one year, a 95% chance of surviving two years and a 90% chance of surviving five years. So, clearly a transplant will help John, at least statistically.
However Dr CB told us that being a status 2 doesn’t really do much as status 1A and 1B usually are transplanted. Seldom is a status 2 transplanted, but it does happen.
We asked about travel restrictions and there are none at this time. We are to let the staff at UWMC know when we do travel, even on a fishing trip. There are no alcohol restrictions at this time, but there will be later. It’s nice to know that the daily beer is OK!
John does need to have some inoculations. There is a three part series for Hepatitis B. John will get his first shot this Thursday, then another in a month and the last one six months later. In addition, this Thursday John will get a shingles inoculation and a pneumonia inoculation.
We have received a manual about transplants, and like Dr M told us (see the last blog posting), one set of problems is being traded for another with a transplant. It seems as if some infections attack almost all transplant patients, but the UWMC is on top of things and catches these quickly. There will be blood tests, biopsies and x-rays quite often at first and then taper but not ever stop. Medications will be required for the rest of life, but that is the case now. No change there! Transplanted patients are more susceptible to cancers, so they watch that closely.
We went to our first transplant support group meeting last week. An old co-worker of Colleen’s is waiting to be placed on the list. He uses oxygen bottles, but might have sleep apnea and that would keep him from being listed. He is clearly weaker than John. The group had both pre and post-transplant folks. The post-transplanted were a pretty enthusiastic crowd and the new people were terrified. We don’t count ourselves as new, since we have battled this heart failure since 1994. The diets and pills are overwhelming at first, as we remember well.
All in all, we think that it is a good thing that John is finally on the transplant waiting list. Reading some of the literature concerning what waits on the other side, the infections et al, is a bit distressing, but not overwhelming. With no restrictions, life won’t change much, at least for awhile.
Colleen & John
posted by Colleen and John | 7:48 PM
2 Comments:
You will be in our prayers during this time.
Glad to hear the good news! Drink up and travel away!!
Miss you guys!
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