My husband was diagnosed with PKD in his mid-50s and we were sent to Emory University Hospital in Atlanta. Remarkably, his doctor was Arlene Chapman, a world-renown specialist and scientist. At that time, they only recommended that he cut back on protein. As the disease progressed, his kidneys became enlarged, his GFR dropped and he was put on a transplant list. When Dr. Chapman became a full-time scientist, we began seeing a nephrologist near home in Macon, GA. He was very knowledgeable about this disease and sent us to Mayo in Jacksonville (where we should have been all along).
My husband was put on the Florida transplant list. We learned later that Emory took him off the Georgia transplant list at that time. He was also on a special list of people who had (or had had) hepatitis. There is a stigma in this country about donating organs, I guess. Not one of our relatives offered to give my husband a kidney. The one offer we had, a friend in Arizona, did the bloodwork, etc. and Emory dropped the ball.
My husband had his kidneys removed at Mayo after he had been on dialysis for about 6 months. After that, he was on dialysis almost a year. At one checkup at Mayo, the tests showed “something” on his heart and we were sent back to Macon to check this out. He subsequently had 3 valve replacements. This enlarged heart and the valve problem happened within a 7-month period, from the last Mayo evaluation which showed a normal size heart.
I’ll always wonder if the dialysis caused this problem, and I’ll never understand why the PKD Foundation (or someone!) didn’t do an investigation, since knowing this might save lives in the future.
Although we had done every single thing the doctors had recommended, all the special diets, it still came down to this. Still no donor.
After the heart surgery (which we had done here in Macon upon the recommendation of our local cardiologist), my husband never completely recovered. Due to unskilled practices in rehab and a blatant over-prescribed amount of Coumadin, he subsequently had to have nasal surgery to stop a bleed. His first time back at dialysis after all this, the staff couldn’t get his blood pressure up enough to perform dialysis. He was sent back to the hospital.
I believe because there were so many specialists involved, there was a breakdown in communication. When his liver started failing, the heart surgeon (spokesman for the group?) recommended we call in Hospice. Later I learned that the other specialists (nephrologist and electro-cardiologist) were shocked to learn these facts.
My husband lived one week at home with Hospice. He was the strongest person I’ve ever known. I guess this is how he survived all these problems, then lived an entire week with no kidneys and no dialysis
The one good thing about his tragic death was the fact that all seven of our children and fifteen grandchildren (and yes, some great-grandbabies) were able to spend time with him in our home for that entire week. He could only hear, but they all talked to him and kept him company during this time. I can’t praise Hospice enough for their care, although my daughter and daughter-in-law administered meds.
I also highly praise Mayo Clinic in Jacksonville, and the Gabriel House which was our home many, many weeks. In retrospect, I believe we should have had the heart surgery there, but God knew what he was doing all along and it is what it is.
My children and I could not have made this journey without our faith. “Daddy Bob” left us all to be with his Lord on December 10, 2013.