Posts

Matters of the Heart, the Second Part

Image
Previously on The Diagnosis *This chapter jumps a bit in time. It is in chronological order, but continues right up to the present. I wanted to package all of the cardiology portions in one place for easier reading. After this we will return to 2008 and finish the story according to the timeline from there.  After my denial of a third kidney transplant I was forced to take a serious look at my heart health. I honestly had no one to blame but myself about how much I had ignored it until that moment. In my mind I was a kidney patient. There was no room for anything else. Go ahead, question me about Focal and Segmental Glomerulosclerosis! Want to know about Plasmapheresis with Albumin Exchange? Ask this gal right here. Have a question about renal transplants or dialysis? I'm your huckleberry.  Ok, McSteans, but what's going on with your heart? .... ¯\_(ツ)_/¯ I knew I was on maintenance blood thinners (Coumadin) for blood clotting, had experienced a silent heart attack prior to goi

Transplant Three?

Image
Previously on The Diagnosis Our decision to move back to Austin infused into our lives a sense of hope long forgotten. The four years in Phoenix had started to feel like a trap, and with my declining health there was seemingly no way out. Dialysis had brought stability to our lives which made escape possible. We were originally going to wait until Ryan found employment back in Austin to begin the process of moving, but no company wanted to take a chance on someone who did not already live in the area.  One night we were discussing our predicament when Ryan just looked me straight in the eyes and asked, "what if we just pick up and move?" It would be a gamble, to relocate without the certainty of an income on the other side, but if we didn't take a chance we might not ever get back to Texas.  "Let's do it," was my immediate response. We set a goal of September for the move and started contacting realtors in Chandler and Austin. Austin was easy as we had a fri

Dialysis Two

Image
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

Cabin Fever

Image
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

Some additional thoughts on "Migraines"

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

Migraines

Image
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.

Phoenix Pheresis Phunzone

Image
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