My phone call came Sunday June 2, 2019 Near the end of my home dialysis session. A match had been found, did I want to accept it and how soon could I get to the hospital which was about one hour away. Yes, yes, yes I said after trembling, shaking and quivering in my voice with tears flowing. Yes. “Are you alright?” Said the transplant nurse. “I am not sure,” I responded. It was about 5:30 pm and I was advised to be at the hospital in 2-3 hours.
I disconnected myself from the machine for what I thought would be my last dialysis session. After four years, 5 days a week, I actually could not visualize life without this ritual that was comforting because it kept me alive but terrifying because it could harm me by introducing infection straight into my blood not to mention the small percentage of kidney function dialysis replaced. I went to find my husband as I shook and cried with happiness and fear. Happy a match was found, sad someone has died, scared the transplant may not work or not match with the final blood cross match and afraid to get our hopes up too much. I was ecstatic the call came from Hamot, in Erie, PA and we would not have to relocate for 6 weeks of post op care or board our two Australian Shepherds. If the call had come from Mayo Clinic, Rochester, MN it would have been much more challenging but we did have a plan 8n place if that did occur. When it comes to life changing, life saving, life altering transplants, we knew we would do whatever we had to do to have a successful transplant.
On Tuesday, June 4, the organ arrived at the hospital by helicopter around 2 pm, when the transplant team told me it was expected to arrive. I was walking the halls, watching out the window facing the helipad when my husband and I saw an organ box (cooler) being carried off the helicopter into the covered tunnel then disappear. The hairs on my neck and arms raised as I snapped a photo of “my” kidney arriving. Reality hit after this 2 day wait for everything to fall into place. We went to preop and met with the surgeon. He described the possible complications, he informed us there was a 50/50 chance there may not be any good arteries or veins inside me to hook the new organ up to because of my previous three transplants. He asked how well I was doing on dialysis and if I wanted to change my mind. My husband deferred to me-this is her decision he said to the surgeon. I did not want to change my mind. Finding a match for me was such a long shot, due to the previous three transplants my body built up immunities to, I had faith that this kidney was meant for me. I have alsways had good results in my previous transplants, which began in 1980.
So far, this kidney and I have been compatible and enjoying life without dialysis. I have returned to work part-time as a Physical Therapist/Clinic Owner and just found out that the donor’s family has answered my gratitude letter to them and should arrive any day in the mail.
I have been on hemodialysis since July 5, 2015. I am fortunate to be able to do treatment at home, 5 days a week. The two days I get a “reprieve” I go into the office and see patients. As a Physical Therapist, keeping my strength and endurance up is important to performing at the level I am accustomed. Having a new Australian Shepherd puppy, son of our almost 8 year old male, demands a certain level of energy. I just can’t get the hang of getting up before 8 a.m. most days. Fortunately Bob is an early riser. I have been listed for transplant at University of Pittsburgh Medical Center. I have several living donors who will be tested for transplant suitability. The UPMC Physician was not optimistic about finding a living donor. Considering the many miraculous events in my past, I may have one more ahead of me. Then again, have I had my fair share of miracles? Perhaps I have exhausted the quota. Three previous transplants puts me in a category of being difficult to match because of high levels of antibodies my body has made in response to the three previous donors. Transplant medicine is all about preventing rejection to the foreign organ by taking medication daily to suppress the immune response. The suppression is not complete and organdy reject gradually over a period of time. I have surpassed the average of 12 years each transplant except for the the 2013 kidney that torsed (twisted) inside of me and cut off its own blood supply and had to be removed. Happy New Year to all and hope to write again in a day or two.
My last blog was the miracle of life I received following the malfunction of my dialysis access and the choice to refuse further interventions. My Mayo Clinic Kidney gave me 2 years of life untethered to a machine. The kidney gave me challenges which culminated in a torsed (twisted) kidney in September 2014. The kidney was surgically detorsed, sutured to my abdomen, and survived with a return to full function. Adapting to the fickle kidney was my challenge and I gave up strenuous Pilates, twisting and squatting. Somehow, July 4, 2015 I sensed the kidneys position had shifted, I palpating the a irregular abdominal contour and we rushed to Strong Memorial Hospital, 2 1/2 hours from my Chautauqua County home. The surgeons again detorsed my kidney, which basically strangulated its lifelines of vein, artery and ureter. The following day they removed the “dead” organ and placed a temporary femoral dialysis catheter in my groin.
So begins a chapter I had no intention of living out. What to do now that you are here. To believe in this living is just a hard way to go.
Living with any chronic illness isn’t easy but life is not always easy. Expectations seem to play a part in deciding what is easy or not. My experience with kidney disease leading to dialysis in 1980 then transplant in 1980 and 1997 has been neither good nor bad. The challenge has been accepting myself as normal even though deep down I know I’m not. But then again- who and what IS normal? As I approach the impending dialysis, I realize how I truly just want to have a break from confronting a new challenge. I have been adapting and adopting so long now. I know that feeling sad for the physical losses is normal. I have been told it’s ok to grieve. I know that so much of my future is up to me and I will choose health at every opportunity. I will continue to successfully use denial as coping mechanism until continued denial threatens to cause harm.
There’s a really good reason I don’t keep up on my blog. Answer: DENIAL. The past 2 1/2 years kept me living day to day in survival mode as I went through the slow, insidious process of kidney failure; for the third time in my life.
For me, never admitting to feeling crummy, never passing up opportunities, never limiting work and never saying no to the dog are standard operating procedures. Even when I am not well, I strive to pack every moment full, G-d forbid I miss one thing.
I am very thrilled to be the recipient of a healthy functioning kidney as of 6/2/13. The miraculous phone call that changed my world came at 8 pm Saturday 6/1/13. When I say miraculous, I am not exaggerating. On Tuesday, 5/28/13, the tube through which I was performing my 4 times per day dialysis had bent upwards and was no longer able to drain the dialysis fluid out of my abdomen. This fluid is what contained the waste that is toxic once your kidneys stop working. Extra water is also carried out with the dialysis fluid. Four times daily I would put luid into my abdomen, through an abdominal catheter. Four hours o six hours later i would drain it out. Without dialysis the toxins and fluids ould build up until death. To fix the catheter I had an emergency surgery 5/30/13 to reposition the catheter. The surgery I’d not help.
On Friday 5/31, my Doc said Monday I would need another surgery to place an access line for hemo (blood) dialysis into a neck vein. I refused further treatment. Why? I knew the harsh realities of life on hemodialysis since my younger brother endured it or many years back in 1976 when he was 11 years old and I was 18. That’s a whole different story for a future post.
I received the Gift of Life at Mayo Clinic in Phoenix Aizona via kidney transplant. My third kidney transplant since 1980.
Denial continues to be a strategy I employ to move ahead, move forward or to keep on going when the going is rough. Reality creeped into my life the night I refused further treatment and accepted my destiny. Denial was displaced by acceptance of my situation and choosing. One oesn’t always have to choose life. That is a personal choice.
I finally lost enough kidney function to get evaluated to go on a transplant list. Good news, bad news, not a joke! I have lived rather normally since 1980 after only a 6 month wait. The current wait averages 4 years.
Another lesson from the dog. At the Fredonia Farmer’s Market yesterday, the rain fell and the wind gusted as the tents and loose items swirled around us like the Wizard of Oz. I helped the Brother from Brother’s of Mercy hold down his floating tent as Chi-co, my 2 year old Aussie stood and quietly watched the action and did not react to the running screaming people. Thunder and lightening ensued and he laid down and watched the frenzy. He has never had the experience of seeing people react negatively to an event; man-made or nature made. He knows only positive. He is a great example that we all are made up of our cumulative experiences. This is an important lesson for all. As a Physical Therapist I have found that patients respond much better to news of what is good versus what is wrong with them. The positive attributes they possess help to attract more positive. The more they hear what is “wrong” with them, the more convinced they become that they can’t help themselves. Some of the most challenging cases I have seen come to me with a huge laundry list of what another provider told them is wrong OR that they have the tightest muscles ever seen! Talk about planting seeds of negativity. Think before you spread messages you will have a hard time undoing. I’ve learned a lot from raising a dog.