Today I got some news that at first felt pretty devastating. I found out that I’m not eligible for the transplant protocol that would allow me to be free of immunosuppresant drugs. For most people this is not an issue, … Continue reading
Well, the first appointment at the Stanford Transplant Center is complete. I am still processing the information that we received, because it was a LOT (as shown by the length of this post), but there were no significant surprises and their whole operation seems very efficiently run. The day started with a short presentation (PowerPoint and all) from one of the Nurse Practitioners. We completed paperwork, went through brochures, and familiarized ourselves with the standard process for transplantation. This was really not anything new for Tristan, who has been through this all before, but it was incredibly helpful for me to really understand the typical process.
One moment that struck me and brought a few tears was when the NP was going through the long list of side effects that are possible with immunosuppressants. For those of you who don’t know, all kidney transplant recipients must take drugs after the surgery for the rest of their lives to prevent rejection of the transplanted organ. These drugs have a wide array of possible side effects (you can imagine what would happen if your own immune system was being chemically lowered… you would be susceptible to a LOT of things), the worst of them cancer. The NP was trying to minimize the fear that many recipients have about side effects by comparing the list to what you see in the warning packet that comes with a box of tylenol. Rightfully so, since most lucky people will not experience the myriad of challenges that come from a permanently lowered immune system. Tristan, however, was one of the few who did develop cancer. This realization in the moment, combined with his under the breath sarcastic chuckle, made me very upset for a few fleeting moments until I forced myself to mentally move on.
The educational presentation was followed by an exam by a kidney specialist (nephrologist). He seemed very smart and really knew his stuff. He had a way of explaining things that was comprehensive yet clear. Tristan asked about the immunosuppressant-free procedure that Stanford piloted 8 years ago (read here for more info on that), which has seemed like the only procedure that he would be willing to try given his complicated history and elevated risk factors. What we learned, for better or for worse, is that the drug-free process actually has an elevated risk for cancer because recipients have to receive immunosuppression in addition to radiation for up to 12 months post surgery. However, the idea is that, after that grueling year, you are hopefully freed from a lifetime with a suppressed immune system and drugs. We learned that this procedure is usually only open to those who are having their first transplant and have a sibling who is deemed a match. Also, usually having had cancer would immediately make someone ineligible for the special process. That said, since Tristan was actually living immunosuppressant free for 7 years before dialysis, had cancer due to immunosuppression, and is otherwise healthy, they are going to consider him for this option. I have faith and trust that the team of specialists who will join together in a room with Tristan’s smiling face up on a screen to decide his future (is he eligible for another transplant? If so, which procedure? Does he need to do anything before he can move forward?) will make the best recommendation possible. That is a huge leap of faith, but I am just going to go ahead and put it out to the universe that it is a leap I am taking.
All of this information aside, we still have no idea what to do.
Option 1, get another transplant: The doctor drew a chart showing life expectancy compared to length of time on dialysis or with a kidney transplant. After 2.5 years on dialysis, they see life expectancy start to drop–1 year on dialysis takes 2 years off of your life, essentially. People with transplants tend to live much longer than dialysis patients, and their quality of life is very high. Even with this relatively new procedure, no one has died related to the kidney transplant, so the outcome seems positive. And, of course, you are freed from dialysis, which can be quite grueling and limits your mobility.
Option 2, stay on dialysis and continue to try and improve current kidney function: With a transplant comes more immediate risks and complications. Any surgery is risky, especially a second kidney transplant–especially if you are moving forward with a relatively new procedure. The emotional and mental trauma of being in a hospital, the financial burden and potential stress about finances, and the physical toll on your body–these are all coupled with the risk of cancer again, the risk of the kidney not working from day 1, and the risk of your quality of life being worse than it was before. And Tristan’s quality of life is pretty high right now.
Option 3, don’t make a decision now. Ding ding ding! This is the one we are going with for now. Stanford is considering Tristan’s case (he owes them about a pint of blood for them to run all kinds of tests and more medical history and records), and we will have a decision about his eligibility in the next few weeks I would guess. Tristan continues to work with his naturopathic doctor, Monterey nephrologists, and dialysis team to improve his situation.
We are not being short-sighted, trust me. This is just a huge, massive, and stressful decision that takes time and grace to pull through–and I feel like I am lacking both of these things right now. Tristan and I both believe that the answer and way forward will make itself clear when it needs to, and maybe this will happen really soon, or maybe it will happen down the road. All I know is that we need to appreciate where we are at, not take on any huge commitments or changes over the coming year, and continue to progress in a way that feels best for us.
On a side note, I had the privilege of meeting someone this weekend who was a caregiver to her husband for 20+ years before he left this earth just recently. I must say, I am in awe of her strength and steadiness as she works through the grieving process for something that she has been expecting, but is completely incomprehensible at the same time.
Meanwhile, I am trying to not let the stress of this looming future take its toll. Day by day, moment by moment, onward we go. 🙂
For those of you who muddled through this entire post, kudos to you! You must really love us or something. So, as a little prize, here is a BONUS wedding video 🙂 xoxo -Alisyn
I won’t speak for Tristan about the current situation, but I can try and summarize it for you.
Tristan was the recipient of a kidney transplant about 13 years ago. After surgical complications, he lived as a relatively normal kidney transplant recipient for about 6 years. At that point, he was diagnosed with a rare and aggressive form of cancer: Burkett’s Lymphoma–later linked to some of the transplant-related complications or medicines… or both. In 2007, T was declared cancer “free”, with as much confidence as an oncologist can give.
Fast forward 6ish years, add in a life partner, a new state of residence, and an awesome job at one of the most amazing aquariums in the world, and we are here. Last fall 2013 Tristan started experiencing extremely high blood pressure, a not-too-uncommon situation for transplant recipients. However, the BP situation really spiraled out of control. Kidney transplants can trigger high blood pressure, but ironically enough, high BP leads to end-stage renal failure (aka kidney failure). At that point, Tristan was living with about 30-40% function in his kidney. After a bout with pneumonia, a sudden and scary onset of flu, and one terrifying hospitalization, Tristan was diagnosed with kidney failure–10% function or less.
Now, the options are dialysis and another transplant, which is very tricky given Tristan’s history with his current transplant. Read my post on dialysis to understand what our options are for dialysis, but that will be the next step.
Meanwhile, Tristan is working with a number of amazing alternative care practitioners, in addition to his kidney specialist and primary care doc. In the world of kidney specialists, there is no such thing as healing a failing kidney. In their minds, the ultimate outcome is grim and there is no way around it: his kidney will stop functioning, he will live off dialysis, he will need another transplant.
In the world of Chinese medicine, Ayurvedic medicine, and other forms of alternative care, healing is possible. People go off dialysis every day and people get off the transplant list because their function is restored. This option sounds a lot more appealing, obviously, but we are dealing with the delicate balance of marrying the west with the east and allopathic medicine with naturopathic medicine. How does one on 7 major prescription drugs for hypertension and hyperparathyroid have a chance at a more natural approach to healing? How do you work together? How do you find true healing? Is healing a cure? Is healing a state of mental health, physical health, both?
This is what we are trying to figure out, and these are the questions we have to ask. It’s complicated and scary and depressing at times, but the only option is life, and that is the focus.
Tristan is going to write some posts with more details about his history and the current situation, because this was a WAY simplified version of an explanation. I hope it helps clear up some questions, though.