Troubles McSteans

Previously on The Diagnosis For many years I was the "Ruiner of Holidays". Of course that's an exaggeration and no one else outside of Ryan, who understood it was a joke, would label me as such. But it's how I felt. I have already detailed the year I brought everyone to San Antonio while I plasmapheresed and the first year in Phoenix when I had a crippling and undiagnosed Sed Rate, but there was also a year in between when I ended up in the hospital right before Ryan and I were set to go our separate ways home for Christmas, delaying our departures a few days. The fall/winter of 2005 took the cake, though, when I managed to bulldoze through each and every holiday. My migraines had been so bad that year that they pulled focus from the actual underlying problem, that my second transplant was failing. Pheresis was somewhat slowing the process, but the outcome was inevitable.  In October I went in for one of my treatments and my fistula wasn't working. It had twisted ...

This is all going to sound like I'm breaking out the tiny violin and begging for sympathy. I hope it doesn't come across that way. Everything is fine. We're healthy, the dog is okay, we have each other and I am so thankful for that. Things could be a lot worse I am well aware. But sometimes you just have to vent and that's all that this is. I'm so very tired of this. "This", meaning 800 varieties of covid, monkeypox, possibly polio again (I'm aware there are only a few cases in New York, but it starts somewhere, right?). In the beginning, in the wayback times of March 2020, this was supposed to be a temporary sacrifice. Those of us that were fortunate enough to be able to hole up in our homes were assigned to isolate for just a few months until things settled down. It lasted a year. The beginning of 2021 arrived with the promise of vaccines. We all scrambled in those first few months, waiting our turns for shots, struggling in a scavenger hunt for shot...

Previously on The Diagnosis Shortly after posting my last entry entitled Migraines , Ryan, as he kindly does with all of my writing, re-posted it on Facebook. It was accompanied by a comment that I had "pulled my punches" by basically sugar-coating the entire experience. I value Ryan's opinion above all others, especially since, well, he was there. He usually has only minor feedback - mostly positive and encouraging, occasionally sharing bits and pieces of items he remembered that I did not include. This time his observation worried me so I went back and re-read what I had written. He's absolutely right. I have a tendency to do two things. The first is, as Ryan said, I will often re-frame my story when talking to other people so that it's not so upsetting. I don't like for people to dwell on what I've been through. It's in the past, I got through it, and it's not something I even think about much anymore. And I also don't like making other peop...

Previously on The Diagnosis I'll be blunt. My migraine troubles made life hell for us while living in Phoenix.  I saw a total of three different neurologists in the Valley of the Sun. Doctor #1, selected on a recommendation from Dr. Lambda, was in the same building as my kidney doctors. After he auditioned a couple of completely unsuccessful preventative medications and found no solution to my progressively debilitating migraines, he was dismissed.  Doctor #2 was located in downtown Phoenix, an inconvenient 45 minutes without traffic from our house. A different set of preventative medications were rolled out and, like the others, did not work and had unpleasant side-effects. Doctor Two lasted less than a year. Doctor #3 was in the Ahwatukee Foothills, located across I-10 from our suburb. I settled there because it was close, the doctor was nice, and she wasn't trying to start me on endless preventatives that were derivative of the same prescriptions I'd already been trying....

Previously on  The Diagnosis We spent four years in Phoenix and much of it is difficult for me to remember. There are moments that stand out, episodes like the Sed Rate business and a few hospitalizations that will stick with me forever. The middle part of our residence has congealed into a blur of plasmapheresis and migraines and ER trips and hospital stays that are now hard to peel apart. The pheresis and migraines had somewhat of a symbiotic relationship. It got to a point where every time I had a treatment I could count on having a migraine that night. Or the migraine would present itself in the middle of pheresis in the form of nausea and make the experience more unpleasant. I've decided to split this section into two parts, because there's just too much for one post. I will jump back and forth a bit on the timeline, so I'll be discussing my three years on pheresis here and then my ordeal with the migraines in the next chapter. Hopefully that will make the story easier...

Previously on The Diagnosis We settled into our life in Phoenix. I was still doing weekly plasmapheresis treatments and had made inaugural visits to each of my other new doctors. Blood work was drawn about once a month at a lab that was on my way to work. Because appointments were not accepted, people would line up outside the building well before seven o'clock. Then there was a mad rush when the doors were unlocked to get your name on the list so you wouldn't be there all morning. It was chaotic and kind of stressful. Ryan quickly found employment at ASU via a recommendation from a former co-worker at UT. He was working in the college of engineering, building and managing their distance learning program. Like mine, his office was in Tempe, though he had a much longer commute. It would take him 45 minutes on average to drive to and from work. We had made friends. Two of them! A guy who was also named Ryan about our age started at my office about 2 weeks after I did and we got a...

Previously on The Diagnosis Moving cross country to a new city is challenging in any situation. Making it even more difficult for me was also having to build a brand new network of trusted physicians. First I needed to establish a home base for my treatment. For a kidney patient, this starts with a good nephrologist. I contacted my Austin transplant coordinator to see if she had any recommendations. After doing some research, she came back to me with a group based in Mesa. I made the call.  The nurse was extremely helpful as I attempted to sum up my medical history. She quickly grasped that it was lengthy and complicated. "Oh, you're not an easy case are you. We'll need to put you with Dr. Smith.*" A sound plan. I was indeed not an easy case, so I would love to be seen by their most knowledgeable physician. My appointment was set before I left Austin. It would be in early June, so that would give me time to settle in before the meeting. My job started at the end of Ap...

Previously on The Diagnosis My first month post-transplant was spent isolating at home, wearing a mask out to appointments (I was ahead of my time), working on my stamina by taking increasingly longer walks around the neighborhood, and being bored out of my mind. The steroids were bothering me more than they had the first time I'd received a kidney and were making me antsy. I had trouble sleeping and my mood swings were terrible. Just ask Ryan. I had high hopes for my second transplant. The doctor had given me time to be on dialysis and let the diseased first transplant finish its life. We had not used a living related donor. There were extra safety precautions post-transplant involving IV treatments (I don't remember what they were, sorry). Despite all of this, within a month it was clear the FSGS had just not gone away. It must be something outside of the kidney at work here, something embedded in my blood or DNA. I don't know, I'm not a doctor or scientist. All I do ...