Pink poppies make me happy. I put this here because I can.
A couple of Kossacks have inquired as to how I am doing in my ongoing struggle with end-stage renal disease. In case you were wondering, yes, this leaves me at heightened risk for the corona virus.
Ancient history: I first noticed that something was wrong in 1990. I noticed swelling in my legs and my cholesterol was sky-high, like 600. Since then my kidney function has faded away, a lot during flare ups, a point here and there during remissions.
Because my kidneys have now completely ceased to function, I suffer from Uremia. All the yuck my kidneys should have filtered out hangs around in my bloodstream and tissues. Symptoms include nausea, loss of appetite, a foul taste in the mouth, insomnia, excess fluid in skin tissues (edema), fluid in the lungs, shortness of breath, anemia, high blood pressure, fatigue, itching caused by excess phosphorus in the tissues and a weakened immune system. I have or have had all of these symptoms. Nasty? Yes. I take a bunch of different medications to deal with these symptoms..
If untreated, Uremia is fatal. Dialysis will prolong life for as much as five years, perhaps longer but the only real cure is a kidney transplant.
I am kept alive by Peritoneal Dialysis (PD). I had a catheter surgically inserted in my abdomen. That catheter connects to a machine in my bedroom called a cycler. Each night the cycler fills and drains my abdominal cavity with fluids that remove many of the toxins that a normal set of kidneys would filter out. The system isn’t perfect and getting the balance of different fluids is tricky.
My cycler. Surrender to the Borg.
My last labs showed that my hemoglobin was too low, leaving me at risk for a heart attack. and gasping for breath after the least bit of activity. My current cycler settings have been keeping the edema at bay, revealing just how malnourished I’ve gotten. I’m about 30 pounds under my healthy, normal weight. I’m 5ft. 9 in. and weigh about160 pounds. Scrawny, bones sticking out all over.
Mrs ruleoflaw drives me to the clinic. It’s about an hour’s drive to Madison. At my last PD appointment, I got started on another series of shots to raise my Hemoglobin levels. The prescription for my nightly routine on the cycler was also changed. A different regimen of fluids and a longer process. My old routine called for an 8 ½ hour session, now its 10 ½ hours. Between the shots and the new PD regimen, My stamina has improved with much less shortness of breath. I sleep better and my appetite has returned. Boy howdy has it returned. I ate the meals pictured below with relish. A few weeks before, I couldn’t have eaten half those portions , much less kept them down. Yes I like a little butter on my taters.
Chicken Kebabs with turmeric rice and asparagus.
Country style ribs with chive mashed potatoes and mixed veg.
Between my primary physician and the doctors and nurses at the PD Clinic, and the loving care of Mrs. ruleoflaw, I may just make it. The UW Hospital transplant program is currently on hiatus because of the Pandemic. They are in discussions as to when they will resume live-donor transplants. I have two live donors who have volunteered. Even if neither is a match, both have agreed to participate in the paired kidney exchange program. That program arranges swaps whereby donors are matched to patients from all across the country. If one of my donors is a match to someone else in the program, It opens all the other donors in the program to me. Sweet.
Thoughts and prayers are nice and I really do appreciate them.There are, however three practical, concrete ways you can help people like me.
First, wear a mask, gloves, sanitize, and do what you can to beat the corona virus. “Opening up” the economy may sound nice but it could very well be a death sentence for me.The sooner the virus is under control, the sooner I’ll get my transplant.
Second, Give to kidney research.
Third (And this is a huge deal), you can consider donating a kidney to the Paired Kidney Exchange Program. You can make it an independent donation or make it on behalf of an individual patient (like me perhaps.) If you have two healthy kidneys and don’t have any major health problems, you are probably eligible to donate. The recipient’s health insurance will pay all the costs. You would have to pay your own travel expenses. You would have to arrange time off with your employer, but you can’t be terminated for doing this. You can back out at any time. The surgery is sort of like having your gall-bladder removed; Quick with very little scarring and short recovery time.
If you decide to donate, you will get the most thorough health examination possible on earth, for free. You would also have the gratitude of someone whose life you saved. Yeah, you’re definitely on the Christmas Card list, automatic invite to all parties, weddings, family functions, etc.
Instant family. Or not, that’s up to you.
Here’s the link to the University of Wisconsin Living Organ Donation program.
I cannot directly ask any of you to do this. The decision is far too personal and can only be made without pressure or any hard-sell tactics. You’re O-Positive? Okay then , lay down, this won’t hurt a bit.
