Trials and Tribulations

One of the most important things I can share about going through the transplant process is that it is imperative to go into the process with realistic expectations. In my own experience, right after my transplant, I was asked by one of my family members "So you're cured now, right?" but a transplant is not a cure and that is probably the biggest misconception about going through the process. Whether your kidney comes from a living donor or a deceased donor it's important to remember that complications can occur. This is the story about the journey I had with my new kidney. It was not without its own complications but from these complications I learned so much about the process. And I am confident that it has prepared me for when I receive my next kidney transplant.

The first couple of months after my transplant I felt amazing. I remember the freedom I felt when I was able to eat things I hadn't been able too in years.  My new kidney was making urine like crazy and I know it sounds weird to say but I loved peeing. I had energy like I hadn't had in so long. My hemoglobin and hematocrit levels had stabilized and I no longer needed to use an ESA. It was unbelievable how I was feeling. It was like Christmas and my birthday all wrapped up in one. Then things started to change.

 I quickly learned about the side effects of steroids and it wasn't good. Steroids were just one of the medications used to prevent my new kidney from rejecting along with a few other immunosuppressants. What I didn't know was that the steroids could cause diabetes. It's was referred to as steroid induced diabetes and for me it required using insulin for the next six years until the steroids were stopped. The thing about steroids is you have to have them tapered down unfortunately, you can't just stop them. It took a year after my transplant had rejected before I could completely come off them. 

But the next side effect from the steroids would be even more devastating I developed a condition called Avascular necrosis or A.V.N. It is a disease where there is cellular death (or necrosis) of bone components due to interruption of blood supply . Without blood supply, the bone tissue dies and the bone collapses. When it involves the bones of the joints, it often leads to destruction of the joint articular surfaces. For me it attacked the joints in my hips, wrists, and knees. The first of my joints it would attack were my hips. One year after my transplant I underwent my first total hip replacement in October of 2003 and three months later I would have the other side done in January 2004. This was a very difficult time because I was still healing from my kidney transplant and I now had to do months of rehabilitation to recover from the two hip replacements. 

 Then one year later it struck again, this time it attacked both my wrists. It is extremely rare for A.V.N. to strike wrists let alone both. This would prove to be more difficult for the doctors to address. There were no wrists replacements. I was fortunate to find an amazing doctor who found an experimental surgery to fix my wrists. It was called a bone graft and what it did was remove the bone marrow from the radius bone and place it in the wrist joint to rebuild the scaphoid bone that had collapsed. Basically it formed a new bone in the wrist joint, took away the pain and returned to me a 9O% range of motion that had been lost.These surgeries were done 6 months apart and both required to wear a cast for 4 months on each arm. The total recovery time to heal from these surgeries was well over a year and a half. I'm happy to say that eight years later from the first surgery date in August of 2005 the surgery is still a complete success and I live pain free with still 90% range of motion.

This was a very challenging time in my life and all the while dealing with living with a new kidney. The side effects of the other transplant drugs where taken their own toll on me and then the unthinkable happened. In the fall of 2006 I was diagnosed with pneumonia and was hospitalized for 19 days. During that stay my lab values started to change and my creatinine started to rise. That's when I required by first kidney biopsy and it would be the first time they would find rejection in my transplant. It was devastating, I was scared, I had already been through so much and I didn't want to lose the transplant. So with the help of extra doses of steroids, antibiotics, and anti~rejection drugs they were able to stop the rejection process, for the time being. Then two months later in November of 2006 I would once again begin to see my creatinine start to rise and was again hospitalized. Once again they did a biopsy and found rejection. This would be the beginning of the end for my transplant. This time the doctor would try a more aggressive course of treatment. They placed a Hickman catheter in my chest and started a treatment called I.V.I.G which would require six outpatient visits. This would turn out to be another short term fix as one year and two months later my transplant was in full rejection and I began to prepare to start dialysis all over again. 

Because I was not taken off the steroids even though the transplant had rejected  A.V.N. would rear its head one last time. In October of 2009 I would have yet another surgery and this time it had attacked my left knee. When I first encountered the pain, earlier that year, I have decided I would try other means of dealing with it, The last thing I wanted was yet another surgery. But that would not be when I could no longer walk on it or put any pressure on it I knew it was time. This lead me to a complete knee replacement and a 17 day stay on the rehabilitation floor. This was the most painful of all the surgeries I had and was the longest recovery time.

So in the end, the most valuable lesson I learned from my journey was to never give up or stop fighting. And in spite of all my trials and tribulations I am still willing to give another transplant a try. A lot has changed in the world of transplant since 2002 and I remain hopeful that next time around my journey will be less complicated. If I have learned anything about my experience it is this the most flawed transplant gives a better quality of life then spending it on dialysis machine. That is the reason I have waited  five and a half years and continue to wait for my second shot at getting it right. 

I want to thank you for joining me once again on this journey. I look forward to your questions, comments, or concerns. 

Keep on fighting, you Kidney Warriors! 

~Kidney Blogger