I posted a version of this just now to my friends on a transplant e-list, where we often deal with problem illnesses and doctors. Thought it would explain why I have been posting so infrequently, and it is a sort of climax to the story of my last months, and my increasing problems with the OSU system and my transplant surgeon and his nurse.Tuesday we spent an hour with my new kidney doc, who had come in as a consultant in my mid-February hospitalization. I had been impressed by how smart and careful he was then, and by the fact that he suggested a cystoscopy to look for the cause of this uninterrupted chain of UTIs (The one I'm taking tetracycline for right now is #6 since my surgery). I like my old kidney doc very much as a person, but he is casual about post-transplant treatment. Also, he is not at Riverside, but at another hospital, which confuses treatment.
Well, the new guy really was smart and careful and focused. Turns out he used to be a transplant neph at OSU. Now he follows 250 transplant patients. He scheduled a visit with a urologist he uses a lot for this, who will verify whether the problem is in the bladder. And talked about how and why we might want to remove the old kidneys, which have many cysts, and to which I have reflux. He changed my lab orders to every two weeks, and removed cholesterol, glucose, and some other extraneous and puzzling things from them.
I can now go to Riverside for these blood draws instead of OSU. I love Riverside - they are friendly and have never missed on the first stick. It felt like being safe.
As I understand it I will never have to go in OSU again. He told me 20% of his patients want to never have anything to do with OSU again "for various reasons." I am one of them, but did agree to an annual visit with the transplant neph at OSU to have "a second pair of eyes" on me.
And I no longer have to deal with the surgeon or his nurse, who have been awful to my primary care doctor and me. And there is someone clearly responsible for my care now, who is in an excellent practice with good backup people. And when hospitalization or tests are needed, I will go into Riverside, a hospital that focuses on making the patient comfortable, and is significantly higher rated than OSU, by the way. I am so relieved that yesterday I was dizzy. Last night I slept seven hours for the first time in a week.
All this has been a hard journey for me psychologically and spiritually, if those are really any different. I had to step back from my trust in my tx doctor and evaluate the reality of trying to work with him. This meant I was refusing to be abused and neglected by a white male authority figure - which has been the story of my life, though I hasten to say that the worst doctor I ever had was a woman. And I had to do these hard things while sick. For several days I suffered from very painful muscle spasms in my lower back. They are still going away.
I have been helped in so many ways during the ordeal of these five months. Maybe a chaplain at church told the Caring Committee I was ill again, and discouraged, and a retired nurse named Linda Miller called me and listened, and offered food. The next day at church she gave us a wonderful (and huge) casserole, strawberries, and lemon pound cake. Yesterday my dear friend Gini drove me all around for lab tests and later, a doctor appointment - she has done this many times, and has also asked what food I would like, and made it and brought it. Being so sick and tired, I am very behind on thank you notes. But I'll get there.
There are speed bumps on the road ahead to well-being. But this has been a dark and rocky segment of the road, and I feel I am emerging into the light. At the same time, the crocuses in my back yard have come into bloom, and I should see a snowdrop any time now, and then the succession of flowers planted by previous owners.