Donor Complications and No Help from the Hospital

My story is somewhat close to Debbie’s story on your website with the exception that I have a kidney to my Mother. We had our transplant done at Emory Transplant Center in Atlanta Georgia, August 16, 2012.

As a family, we knew that my mother suffered from kidney disease for a couple of years before we learned that she was in fact in Stage 5 Kidney Failure. Our family is a pretty close family, small but close. I am the youngest and only daughter with two brothers. When we learned that my Mom had to have a kidney and her chances of getting a kidney from the donor list or anywhere else was slim to none due to her age, we were told about a living donor process.

I will admit that I do a lot a research on medical terminology and procedures only because I like to know exactly or as close to exact as I can be when a doctor is telling me something. So I did what I thought was my research on donation. We learned from the hospital that neither of my brothers could donate due to high blood pressure and kidney stones. I guess with me being the only daughter, it was and still is my position of care taker for my parents. It’s not a job that I mind.

All during the pre-transplant procedure and testing I was in every appointment with my Mom because she is hard of hearing and please don’t take this the wrong way, but not very educated when it comes to talking to doctors and such. We had first gone to Georgia Medical Science in Augusta, Georgia because that is where my uncle had his transplant done 28 years ago; he is my uncle by marriage. There has been no evidence of kidney disease in my family that I can find, and I have done an extensive family tree, lol. Anyway, Augusta turned me down as a donor but I do believe that it was due to how the GFR was done, not that I could not survive if I donated a kidney. I am that person that keeps a copy of everything, so when we were recommended to go to Emory I had a copy of all my mom’s test results and mine. I gave the doctor both my mom and my test results from Augusta, but still the tests were performed again at Emory. I was told that yes, donors do experience more pain and recovery time than the recipient. I didn’t have a problem with that.

All through the pretesting procedure, I was not told that there were foundations that would help me financially. I had quit my job to take care of my mom so I no longer had a two income household or insurance. My mom’s insurance paid for my portion of the transplant, for which I am eternal grateful. All through the pre-transplant procedure, I saw one of two doctors. When we were given the date for the transplant I was told which doctor would be my surgeon. I was okay with that, I had talked to him many times, so I was comfortable with him being my surgeon. The Living Donor Advocate that I was giving before the transplant was exceptional, Ms. Anita John.

The day of surgery, right before I was taken back to the operating room, a doctor that I had never met came in and told me that she would be my surgeon. I was nervous enough without having surgeons switched on me at the last minute, literally.

The only medical problems that I had at the time of surgery were cluster headaches, which I have been treated for for the past 15 years. Both doctors knew that I suffered from cluster headaches and the medications that I take for them.

After surgery, like Debbie, I was not prepared for the pain that I was in. I was given Percocet for the pain. Although I am a smoker, I have never had a problem with my oxygen levels, but I did when I came out of surgery. I was on oxygen until I was released from the hospital. We had surgery on a Thursday and I was released late Saturday afternoon with a prescription for Percocet. We live 5 hours from Emory so when I did get home, there were no pharmacies open and where we live there were none open on Sunday, so it was Monday morning before my husband could get the prescription filled. Needless to say you can only imagine the amount of pain I was in.

When I went back to for my first post-op appointment, I explained to the surgeon that I was still in a LOT of pain. She told me that was normal and prescribed another month of Percocet and told me to come back in a month. In between the two appointments, my left side (they removed my left kidney) bubbled out and I was still in a lot a pain. When I went back to my second post-op appointment and showed the surgeon my left side and explained that I was experiencing more pain than I had been in the previous month, her reaction to my left side was just “hum” and for the pain she told me that it would go away that my body needed to get used to having just one kidney, not to lift anything over 5 pounds and stay off my feet for a while. For months after the transplant I tried to get the surgeon to understand that something was not right, it is my body and I know my own body.  After months of begging and pleading with the surgeon and the hospital, I got another appointment with the surgeon in June of 2013. Of course, by then my mom’s insurance no longer covered me and Emory wanted me to foot the bills. At that appointment, my mom’s surgeon saw us in the waiting area and thought that something was going on with my mom. When he came over and asked, my mom explained what had been going on with me and HE was the one that got Emory to give me a CT Scan and cover the cost. When I went back in July of 2013, my surgeon said she could not see any complications from the kidney transplant and sent me back home.

Now it is 4 years later, my left side is MUCH bigger than my right side. I am unable to return to work due to the pain that I experience every day of my life. I can’t get Emory or the surgeon to do anything for me. I have talked to the National Kidney Foundation, UNOS, and the Georgia Transplant Foundation and have found out that Emory was suppose to follow me for two years after surgery, but they didn’t even follow me for one year. I, much like Debbie, have had to handle this all on my own. See, believe it or not, my mom is the only person that I have ever talked to about things in my life, she has always been my best friend, not just my mom. Not because I don’t have friends, but I just am usually not the type of person to tell my personal stuff to other people. Of course, I have my husband, but he is a truck driver, so he is gone most of the time and it is just me. There is no way I can tell my mom the complications and pain that I am having due to giving her a kidney, she would guilt herself to death. So I hide it from her. I can’t tell my brothers for fear they may let it slip in front of my mom. So to say I fight depression is an understatement. I have asked for helped from any and every foundation that I can find. I have researched Living Donor Organizations and that is how I came across LDO. I have even gone as far as contacting my mom’s surgeon even though he is no longer at Emory. I contacted everyone including the director of Emory and to no avail. Even with my mom’s surgeon no longer being at Emory (he is now at Duke University in North Carolina), he tried to talk to my surgeon and stated he would waive his fee for seeing me, but could not waive the hospital fee and fees for tests. So where do I go from here? I have applied for disability, don’t know that I will get it until August.