Many thanks to everyone who sent good wishes to me and my son, through his recent kidney surgery. He did very well through the surgery and is recovering well. Unfortunately, the kidney did not survive the surgery. My son is settling into dialysis, and we are hoping to proceed to a transplant, probably in the fall.

It’s hard, but it’s not a tragedy. I don’t think anyone would say dialysis is fun, but these days the centers are very professional and well set up, and there are lots of centers available worldwide. He has a very good attitude, and is integrating the three dialysis treatments of four hours each into his "real life." Some people spend 3-4 hours at the gym three times a week, he needs to invest the time in dialysis to maintain his health.

There are lots worse alternatives he could be facing. He did very well in his surgery. He is young and otherwise quite healthy. He has strong support from family and friends. The doctors recommended dialysis and transplant thirteen years ago, when he was 15, in 1986. Instead, he got through puberty, through high school and college, and is well established in his career. The technology is much improved. They have learned how to prevent anemia and keep people much healthier on dialysis. Transplant methods are better today than they were, and improving at a fast pace. Every extra year one can stay on their own kidney power is to the good. He worked hard with his doctors to keep this kidney as long as he could. It’s no one’s fault, no one did anything wrong, he just had a particularly nasty case of VHL in the kidney.

We like to say that we want to make VHL stand for "Very Happy Life." People sometimes think we are being flippant in saying that. But in fact, it’s intended as a transformational statement: "when life gives you lemons, make lemonade." Take those lemons, and deal with the reality, even if they are not your first choice of fruit.

In 35 years of dealing with VHL I have learned that we don’t always get the answers we ask for, but sometimes we get a different answer that can turn out to be as good if not better. Miracles don’t usually come made-to-order. If we are stuck on watching for a miracle of a particular size and shape, we may not realize that a different one has arrived.

Here are the blessings I am counting this month:

1. He has a very positive attitude.

2. He is strong and healthy, and recovering well from the surgery.

3. He has muscle strain in his back from ten hours of surgery in a contortionist position. But the good news is that he’s complaining only about his back muscles, not about anything with more medical significance!

4. They got all the cancer out, with no metastatic sites, and clear lymph nodes.
Hooray!

5. Because he is cancer-free, they say that he is eligible for transplant in only four months, as soon as he is completely healed from this surgery and stable on dialysis.

6. He has a good vein for the best kind of trouble-free dialysis access fistula. It is installed and maturing well.

7. My sister-in-law Susan flew in to give both of us an extra dose of Tender Loving Care.

8. There are two family donor candidates (Susan and me) going through testing. If all goes well, we should have one good kidney for him by the end of summer.

The miracles in my life are the people and the supportive events that occur around me to help me in times of trouble. When we got back to Boston the first thing I did was to call my regular chiropractor and see if he had an opening to work with my son to heal his back. I explained that he has no kidneys, and is on dialysis, which adds a number of complexities in dealing with herbs, medications, and fluids. I expected him to be wary of the situation, but he said "Fine" with confidence. On the day of the appointment we learned what I had never known after working with this chiropractor for more than five years – he lost all kidney function 20 years ago in his young 20’s, and is now on his second transplant.

Chance? What is the statistical probability of finding a chiropractor with a kidney transplant? And what a gift to someone embarking on this voyage to happen across a healthy and successful professional who has been living this way for 20 years!

Is the glass half full? Or half empty? Everyone has down days for reasons that are sometimes frivolous and sometimes very serious. We all have days when we must consciously choose to smile, to get up, to get back to our real lives. Many of us go through serious life transitions, where we have to learn to live with a new set of abilities and impediments. We can choose to rebel against the new reality, or embrace it and integrate it into our lives. I am thankful for a wonderful son with a strong spirit. I am thankful for the many good people whose thoughts and prayers and good wishes, and their willingness to share themselves,
sustain us.

As printed in the VHL Family Forum 7:2, June 1999. For permission to reprint, please contact VHL Family Alliance, info@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory