So many people, with the very best of intentions, ask some of the most truly insensitive questions based solely on lack of knowledge, so this page is a general starting point to catch up on where Henning has been, and where he is now, health-wise.
As most of you know, Henning has been in declining health for years. As his kidney (yes, just the one) has gradually lost function, his energy and feeling of well-being has decreased.
In early spring of 2011, his health reached the tipping point where he could no longer live life the way he wanted to, and since then there were more and more frequent doctor appointments and very careful monitoring of his condition leading up to dialysis. In spite of dismal values, he was actually doing quite well. His dietician was amazed, actually. She used the term “miraculous”. However, throughout 2012, Henning had been less and less able to do the things he loved, especially travel. We have friends spread far and wide, and those long drives were happening less and less. We are very thankful for those friends who, understanding this, came to US rather than wait for Henning to visit them.
He follows a very strict diet extremely low in phosphate, potassium and salt. Since proteins are usually a very high source of phosphate, he was eating very little meat, no cheese (one of the biggest offenders) and had to give up Coke. We have several tools (links and apps) that we use to determine what foods contain what minerals, to determine what is “good” for Henning. As his dietician says, though, what is good for Henning is not necessarily good for everyone else. For example, prior to dialysis she recommended: More FAT, more SUGAR and more ALCOHOL. So there was some compensation for not having parmesan cheese or steak. 😛
Now that Henning is on dialysis, we have added more protein to our diet, but it is still a very careful balance.
Thankfully, Henning is an amazingly talented, creative and curious cook. We both look for recipes that we can use, or that we can alter to fit our needs. It is not as simple as “vegetarian”, though, since many of those have cheese and/or beans and are often as high in phosphate or potassium as meat. It is a challenge to find dishes that have the nutrients without the minerals, but the challenge is not without rewards. I never knew I could like brussels sprouts, for example. Henning has won me over. 😛
In January 2012, Henning had the first surgery to create his fistula. It takes weeks for the surgery site to heal, and weeks more to see if it works. After a few months, it was evident the surgery had failed. In September 2012, Henning had a second surgery to create a viable fistula near the first site. It seemed to work. There was good flow, and while it was not yet visible, you could certainly feel it… and hear it. Someone said that listening to it, feeling it, is like poetry. It reminds us we are alive. I like that.
We waited for the fistula to mature to the point where it could be used. We were told it just needed more time to mature for it to accept the pressure of dialysis. In the meantime, we began to research other options for dialysis. His slow decline was speeding up, and eventually reached crisis stage in November 2012. Putting dialysis off while waiting for the fistula to mature was no longer an option.
The day before our wedding in November 2012, Henning had an acute neck catheter (SVC – internal jugular access) placed. It is not something Henning was especially fond of, nor was it our first choice, but it provided instant dialysis access. He began dialysis the next day. We were paroled from the hospital to get married, have a celebratory lunch, and then return. It was a crazy couple of days.
In December 2012, Henning had the acute catheter replaced with a more permanent catheter (SVC – behind the collar bone). This also provided instant access, but the wait for that particular surgery was three weeks, too long to wait to begin dialysis. He had the acute catheter for three weeks. He may have the permanent catheter for a couple of months.
During this time of surgery followed by more surgery, it was also determined that while the second surgery for his fistula worked in theory, in practice it was still not viable. In January 2013, he had a third fistula surgery to tie off veins near the fistula to force it to mature faster and increase the flow rate. Once the fistula is viable (and we should know sometime in February 2013), things should proceed much more smoothly, and lessen the risk of infection inherent with both types of catheters. This should be a drinking game… every time you read the word “surgery”, you take a drink…
Most people continue to ask us when Henning is getting a transplant. However, at this time there are no plans for this to happen. Very soon after his first fistula surgery, we were told he is not a good candidate for a kidney transplant – which was a HUGE blow, as you can imagine. The reasons seemed to vary based on which doctor we talked to in the ensuing months, but regardless of reason (space, past medical history/procedures, and the finally convincing risk of morbidity due to infection post-op as a result of immunosuppressant drugs), after several rounds of consultation, many phone calls and letters back and forth that summer, we finally accepted that hemodialysis was the only option available (not even peritoneal dialysis is an option for Henning). It was extremely difficult, but also kind of a relief. The focus has switched from fighting the system to getting healthier.
Henning is now looking forward to home dialysis, and once that starts he will have so much more control over his schedule and his health.
I have used links mostly from Wikipedia only because there is so much information out there, but most people really don’t really want to know ALL the details. But, “What is a fistula?”, and “Why don’t you just get a transplant?” are such common questions, I sought the easiest answers.
For more detailed information, and depending on how verbose I am feeling, I may be providing more links and definitions in the future. In the meantime, please feel free to do a little research on your own.
If you have a great idea of what Henning should do next, (you might not believe how educated one can feel after reading a Wikipedia or WebMD article or watching a TED talk) just write it down someplace or shoot ME an email. It has most likely been thoroughly discussed, and I probably have an answer for you.