July Transplant Update

Yesterday we received written notification from OHSU that I have been officially listed for a heart/kidney transplant!  Of course, such an operation cannot be scheduled.  Average turn-around time for cases such as mine here in Oregon is six (6) months.  I will be posting more details shortly.

End of May Transplant Update

I met with the OHSU kidney transplant doctors two weeks ago and was told that I was a good candidate for a kidney transplant. I also had a dozen or so blood samples taken, and an ultrasound of the abdomen. Last week a kidney transplant coordinator called to say that the transplant team wanted another ultrasound, a CT scan and more bloodwork. So we'll be traveling back to Portland next Wednesday (6/6) for all of the above, as well as at least two vaccines and a visit to my primary care doc.  Hopefully, the information gleaned from the day will result in my being finally listed for a combined heart and kidney transplant later in June!

May Transplant Evaluation Update

Quite a few changes since the last post!  Bubbie and I met with a transplant nutritionist and a transplant social worker to ascertain whether we were on the ball enough to handle the constraints and problems associated with a dual transplant.  A few days later, my case was presented to the heart transplant team and I was provisionally accepted to the heart transplant list.  Now, I am being evaluated by the kidney team.  So far, we have participated in a kidney transplant seminar, I had a chest MRI and I have had a second pulmonary evaluation.  Next are a clinic appointment with the kidney transplant team and an abdominal ultrasound. The kidney team may also want us to meet with an oncologist and a hematologist to discuss long-ago bout with Hodgkins and my current intermittent anemia.  We also need to attend a heart transplant seminar and complete several questionnaires.  So maybe I'll be formally listed in June!

April Transplant Evaluation Update

First, the results of the right heart catheterization test from last month: after a week of dialysis, my dry weight was reduced sufficiently for the test to be performed. This is important in that my pulmonary pressures need to be reduced to normal to match a healthy donor heart. I passed that test, so we know that if I can keep those pressures lower than they have been in the past I should meet this test. (Of course, I have to keep the poundage off!) The results of the pulmonary stress test last week indicated that while my heart is stronger than it was in August, it still is in tough shape and will have to be replaced. More evaluation needs to be done before my case is handed over to the heart transplant team for additional review. They may have more questions. Also, the kidney transplant team should start their evaluation soon. All in all, it will be 2-3 months after both teams have completed their evaluations before I get listed. So maybe August, before I get listed ( which is not a given; things can happen). We shall see!

Peritoneal Dialysis Update

We started peritoneal dialysis (PD) training on 2/13 and I have to say that the experiment failed miserably. We handled the technical part easily, understanding what to do and how to do it. What I could not handle were the side effects of the continual presence of the 2 liters of solution in my gut. I had difficulty breathing and could not function other than to sit and breath as well as I could. My brain functions were impaired by the breathing difficulties and I could not walk very far before tiring. I was so distressed, depressed, disheartened, and disappointed by the experience that I had to quit the training after only three days. I am now back on hemodialysis and dealing with leg cramps again. One positive outcome of the PD experiment was the suggestion of the PD nurse that I eat a pickle when I had leg or foot cramps. I tried that cure the other night and it worked. Of course, it helps that I love pickles, but it does go against the advice of both my nephrologist and cardiologist not to eat any extra salt.

February Transplant Evaluation Update

In late January, I had two tests performed at OHSU: an echo cardiogram and a liver ultrasound. Should get the results later this month. Also, I will start peritoneal dialysis training on 2/13 so that I can do dialysis at home overnight. Dental work is also scheduled for later this month after the dialysis training.

Article by David Haas

20 Minutes a Day Leads to a Healthier Life

Many instances in life create stress. Stress causes the immune system to weaken, making you more susceptible to illness such as the cold or flu, among others. Stress is inevitable; everyone has it or experiences it at some point in time whether it is caused by planning your wedding, decorating your new home or figuring out whether or not to go back to work after your baby is born. Unfortunately, some individuals have stress that far exceeds how many people to invite to the reception. From chemotherapy for breast cancer to rare and painful mesothelioma treatment, people undergoing treatment for cancer often struggle with stress and emotional issues.

One thing that everyone with stress has in common is the fact that exercise helps to alleviate stress and in turn strengthens the immune system. For a cancer patient undergoing treatment, few things are as important as a strong immune system. In addition to strengthening the immune system, exercise is beneficial to cancer survivors because it improves their quality of life, which is a catalyst to successful cancer treatment.

The National Cancer Institute advocates physical fitness for cancer patients and survivors because of its ability to improve quality of life. Weight control is one thing, but the benefit a healthy lifestyle – that includes both a healthy diet and physical activity – lessens a person’s risk of developing chronic conditions such as heart disease, diabetes and high blood pressure, all of which make overcoming cancer more difficult .

Additionally – and perhaps most importantly – physical activity promotes well-being, which is something that many people have a difficult time achieving when facing cancer treatments. The benefits of maintaining a healthy, active lifestyle make it easier for patients to deal with treatment for their cancer. In addition, once a person beats cancer he or she will be much healthier, much happier and able to more fully enjoy life.

The benefits of physical fitness are numerous; however, many people are too tired or too weak to work out regularly, which is why it is important to know that even minor physical activity is better than none. For example, a short walk around the neighborhood is something that takes little time and little effort. Walking to the mailbox is physical activity. Playing a game of catch in the front yard with the kids is physical activity. The key is to get up and move, even when you don’t feel like it.

Physical fitness has both physical benefits and emotional benefits. Whatever your reasons for wanting to exercise; it doesn’t matter. What’s important is becoming active and making your life a healthier one. A 20-minute walk every day is enough to keep you healthier and happier for the rest of your life.

Transplant Evaluation Update

Sometime ago I posted that I was in need of a dual heart and kidney transplant. The heart transplant is due to congestive heart failure (likely a late effect of radiation therapy in 1978) and the kidney transplant is due to kidney failure following triple bypass surgery last May.

Last we finally got to meet the transplant coordinator (at Oregon Heath & Science University - OHSU) in person and we both feel reassured that the official evaluation process is occurring. Here's where we are now. Each time we come in we are seen by one of the three lead docs on the heart transplant team. This time we saw Dr. Mudd. He's the "cup is half empty doc" but of the three we feel that he is doing the best to manage our expectations carefully. Overall, I am much stronger now due to cardiac rehab and my mental health is greatly improved also. While my heart and kidneys will not recover, I am doing better and getting stronger. Dr. Mudd is considering switching out my pacemaker for a biventricular defibrillator to help better regulate my heartbeat and make my heart stronger.

To help you understand a little better - a little background. In order to have a heart transplant the pressures in the pulmonary artery have to be low - say closer to 25 - 35. Back in July my pulmonary pressure was above 90. My pressure is quite visible in my neck and the docs can see how high it is by my turning my head to the left and visually seeing the pressure or heartbeat in my neck. A little pressure on my abdomen and it picks up rapidly. The only way that we can help to control this is by removing more fluid through dialysis. Currently I go to dialysis 3x week and they remove between 2 and 4 kgs of fluid each time. In dialysis you have what is called a "dry weight" or the weight that is agreed to be the lowest they can get you down to. Each time I attend dialysis I am weighed before and after treatment. Originally when I started in July they set my target at 92 kgs after dialysis. This was hard to achieve because my blood pressure is very low. This is normal for final stage heart failure patients but the dialysis professionals don't always understand that. So they have been bringing my dry weight up - I am at 95 kgs now and my pulmonary pressures are remaining too high.

Unless we can get the pulmonary pressure down and my dry weight closer to 90 kgs, I won't be considered for a transplant. Its just not possible to match a healthy heart of similar weight and size when my pressure is running so high. So I may be starting start dialysis 4x a week in the hopes of getting more fluid off. The side effects are unbearable cramping (the kind where my hands contort in cramps and my legs cramp all night long) and exhaustion. I've had another catheter put in my abdomen in preparation for home peritoneal dialysis (PD) as opposed to the clinic hemodialysis which is what I am doing now. Once I am on PD I will do it 7 days a week at home. It will be less stressful on me physically and I can take the set up with me if we travel. Both my wife and I have to go through intensive training before that can start. We expect the training to be completed and hopefully I can begin the home dialysis in March.

Meanwhile, on the transplant side, I will complete various doctor visits and receive releases from the doctors and dentists. We will visit with the social worker and other members of the transplant team in coming months. It is expected that we will complete the evaluation process within the next several months. Once completed, our transplant coordinator will present our case to both the heart and kidney transplant teams and they will decide if I am a candidate for the transplant. Even if I do get on the list there is no guarantee that I will receive a transplant.