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October Update

So. Today I went in for a couple of procedures that I have known were coming for a few months now. For those not up to date, I have long had cardiac issues stemming from my even longer-term kidney issues. For those who are up to date, forgive me for repeating myself a bit.  Luckily until this year I have not had any symptoms. This spring I started feeling bad.  Shortness of breath, a strange scratchy sensation in my chest, coughing, and just running on an even lower level of energy than usual. In July I had a left heart catheter. At that time my cardiologist determined that my lower left ventricle was working extra hard to keep blood out of the upper ventricle and by turn out of my lungs. This is referred to as Mitral Regurgitation . The plan was for me to pull as much fluid as possible at dialysis to relieve some of the pressure in my heart. I did start feeling a bit better due to this action in the past couple of weeks, but we still needed to go back in and check that pressu...
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Cardiac Update Update

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This is just a quick update on my cardiac post from last week. Yesterday morning I had a follow up appointment to discuss the results from last week's catheterization and to make a game plan for the future. I mentioned that Dr. Levy wanted me to pull as much fluid as I could tolerate at dialysis so that I would essentially dehydrate myself and make sure there was no fluid to back up into my lungs. That is the plan for the next two months. I may have already met this goal as I have been pulling an extra kilo (2.2 lbs) of fluid this past week during treatments and last night I woke up with a foot cramp - a sign you are pulling too much fluid.  At the end of September I have a follow up appointment to reassess and to schedule another catheterization. After that we may do a transesophageal echocardiogram. I'm not sure why that is different than the cath in terms of gathering data, but it must be. And yes, that means they stick a transducer down your throat. Trust me, don't Goog...
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Cardiac Update

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This is not part of The Diagnosis, but I'm sure I'll incorporate it at some point. I wanted to document yesterday (well really the past few months) for myself, but also to have an easy thing to point to when anyone asks what's new with me. I believe when promoting the last chapter of The Diagnosis (Matters of the Heart: the Second Part), I described it as "wrapping up the cardio portion of the story". Something in the back of my head told me not to phrase it that way, that I was tempting fate, and yet I did it anyway. Friends, always listen to the back of your head. I am indeed not done with this cardiac mess. Sometime starting last spring I started experiencing occasional shortness of breath along with some hard to define other symptoms and more pronounced fatigue. (I am a mostly functional human being, but I do require lengthy naps in the afternoon to be  functional.) At the time, I chalked it up to seasonal allergies or the seasons changing. It is not uncommon ...
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Matters of the Heart, the Second Part

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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 go...
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Transplant Three?

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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...
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Dialysis Two

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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 ...
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Cabin Fever

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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...
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