After 2 1/2 years, I am still living a dream I never thought possible. The most frequent questions I am asked about my pancreatic islet transplant are about how my life has changed and what about immunosuppression? Here are some answers and a little perspective.
This post is intended for the Type-1 diabetic who may be considering a transplant, or family and friends who may also be interested. These are also common questions I get as I speak with people interested in diabetic issues.
How is my diabetic life today?
Simply wonderful. 2 years of no insulin pump and no insulin injections. No hypoglycemia. No hyperglycemia. No paramedics at 3 AM. No worrying about a low blood sugar while exercising, playing tennis, or driving. More relaxed friends who no longer need to watch over me at every party or every get together. And no more buying 2 bottles of insulin each month at $300 a bottle.
What about Immunosupression?
Immunosuppression is a necessary regimen at the moment for every islet transplant. It means taking medication to reduce the activation or efficacy of my immune system for specific functions. In general, deliberately induced immunosuppression is performed to prevent anyone’s body from rejecting foreign organs or tissue.
I take immunosuppression drugs every day to prevent my body’s rejection of the pancreatic islets I received from 2 donors who’s lives ended abruptly and who gifted a portion of their bodies to me. I received one transplant 2 1/2 years ago, and a second 2 years ago.
What drugs must I take?
Every transplant recipient is different, and the drugs used to prevent rejection vary based on the individual and the unique transplant protocol being used. These are mine, but from many conversations with many recipients, I’ve found these are common.
Initially I was given a variety of oral and intravenous medications to help my body accept my transplant. Some are quite toxic, but I was very lucky – I had virtually no side effects, other than some minor episodes of vomiting on the first day post transplant. My transplant, an adaptation of the Edmonton Protocol, included a initial heavy dose (4 days of several hours each day) of T-Cell reduction drugs.
After about three months, all the initial anti-rejection drugs and injections were reduced to just 3:
While these are the only immunosuppressant drugs I now require, I also take a number of supporting drugs to help my body assimilate them better. In total, I take about 20 pills every day. But hey, compared to multiple daily insulin injections, low blood sugars, and all the other issues with diabetes, it’s basically a “no brainer” for me.
What are the side effects of immunosuppression drugs?
My biggest problem initially after the transplant was the risk of infection or illness. My immune system had been basically switched off, my white blood cells reduced to almost zero, and my T-Cells totally suppressed. A T-Cell is a type of white blood cell that is of key importance to the immune system and is at the core of adaptive immunity, the system that tailors the body’s immune response to specific pathogens. T-Cells are like soldiers who search out and destroy targeted invaders. They destroyed mine in order to allow my body to accept, and “graft” my implanted islet cells.
I was kept in isolation for several days post transplant, and all the nurses, doctors, and visitors who saw me had to wear protective clothing and masks. As my cells re-built over the following three months, I had to be extremely cautious, avoiding anyone who had a cold or any form of illness, and wearing a surgical-type mask whenever out in public.
After that initial period, my life slowly returned to normal, with the exception of my having begun what will be a lifetime drug protocol. No big deal.
Have I had any negative issues?
An interesting part of being in a clinical trial is that you are actually helping further educate your doctors. They are learning about immunosuppression using you as the test-tube. How much is enough? How much is too much? What side effects happen, under what conditions, and how can they be dealt with? There are really few up-front answers to these questions, since every body is different, and almost every complication a new one. It’s part of the joy of being part of a clinical trial – having them listen to you, and watch how you are responding, to learn how to help others who will come after you as they search for a cure.
I was free of complications for almost 1 1/2 years. However, during the late summer of 2017 I found myself having some very bad back problems while playing tennis. Totally unrelated to my diabetes or transplant, I had developed bad sciatica, and minor back surgery was recommended. The surgery, in late August, was uneventful, but the recovery was anything but. The small surgical incision on my lower back was not healing, and I ended up with a gaping open wound that just would not heal. What was expected to be a short recovery turned into almost eight months of very difficult times.
My transplant team theorized that one of the immunosuppression drugs – Sirolimus – was causing the healing problem. They immediately reduced my dosage of Sirolimus and increased my other drugs, in the hope that my healing would improve while making sure I still had the right combination to not begin rejecting my islets. I did begin improving, very slowly, but the open wound had created an additional problem. A reduced immune system, coupled with an open surgical wound, is an invitation to Staph infections. The following months saw numerous treatments to prevent a possible infection, including 2 additional curative operations, and 3 months of daily hospital IV injections with 500mg of Daptomycin, a quite powerful antibiotic. In my mind, no bacteria could possibly survive that onslaught.
Making a long story short, it’s now over. I have healed and my immunosuppression drugs are being gradually re-adjusted back to “normal”. However, my doctors are now armed for the future with new information for other transplant patients, and I am happy to have provided them guidance – well, sort of (rueful smile).
So Do I Still Feel It’s All Worth It?
Absolutely and Unequivocally. I entered this clinical trial knowing the potential was always there for negative issues to arise – it’s a necessary part of any clinical trial. However, the blessings I have received from my transplant far outweigh the impact this particular issue brought. I was caught up in a downward spiral that is now far behind me, and my recent surgical problem is just a necessary part of daily life that anyone might encounter.
Remember, the purpose of a clinical trial is to help you, to help your doctors learn, and to help find a cure for your disease.
Several advances are now taking place to develop transplant methodologies that may not require drug immunosuppression. This is all part of getting there. Of course, anyone should think long and hard before deciding to participate in a clinical trial, but for me, it’s the best thing that I have ever been part of in my life.
Je ne regrette rien. I regret nothing.
Interested In Participating?
If you are a Type-1 Diabetic, living in Southern California, I seriously encourage you to consider participating in the City of Hope clinical trial, which is ongoing. Be part of the search for a cure, and at the same time make your life better.
If you are a Type-1 Diabetic, I encourage you to consider participating in one of the many other clinical trials currently taking place.
For everyone, I urge you to consider being an Organ Donor. You can help other people’s lives at the end of yours, save lives, and help find cures for diseases. It’s a gift worth giving, and costs you nothing.
If you want to help spread the word about clinical trials, here’s how to help with an important documentary in process. The Human Trial is a feature length documentary that is currently following the first ever human trial of a stem cell derived treatment to find a cure for diabetes. The award winning co-director and co-producer, Lisa Hepner, is also a Type-1 diabetic. They are dedicated to the objective we all share: finding a cure.
God bless you all, and a grateful “thank you” for being so supportive over the past two years.