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Tuesday, June 02, 2020


Yer Bunche, post ultrasound.

Since having a stent implanted in my heart back in the fall of 2013, I have mostly avoided chronicling   my seemingly endless revolving doors of medical issues and setbacks, including severe atopic dermatitis, Type 2 diabetes, and ancillary issues. I did so mostly because I usually try to keep things here light and amusing, but in the interest of full disclosure and for the sake of posterity in case my tribulations may offer others some insight or hope when striving to overcome their own Job-like suffering, I will from now on record that which transpires, as well as periodically going back over the past seven years to supply the epic of my battle with atopic dermatitis and my road to recovery as one of the human guinea pigs for Dupilumab, the wonder drug that is now marketed as Dupixent. So, welcome to the ongoing narrative.

Ever since being diagnosed with Type 2 diabetes roughly 24 years ago, I have also been suffering slow decrease in kidney function. In case you were unaware, kidney failure often goes hand-in-hand with Type 2 diabetes and in my case of late that decrease in function has drastically escalated. As of the other day my overall kidney function is down to a mere 10%, and as recently as four months ago, when my creatinine levels ceased randomly fluctuating and just kept escalating, my renal specialist told me in no uncertain terms that I had best prepare myself for the inevitability of either regular dialysis, which would mean implantation of a port in my arm to allow dialysis hookups three times per week, or a kidney transplant. 

I was put on the NY State kidney transplant list and, due to my blood type, the wait for a compatible kidney is anywhere from 7 to 10 years. (other sources say 3 to 10.) Fortunately for me, once I let it get around that I was up for a transplant, two very dear friends immediately volunteered to see if they were a match, so I just as  immediately had two possible live donors. With that in mind, the ball for transplant got rolling for me last Tuesday, as I endured a multi-hour screening with four surgeons at Mount Sinai, which included 18 (!!!) vials of blood being drawn for comprehensive testing. I was given a thick stack of paperwork to fill out, plus an equally thick stack of reading on the whole shebang, but the bottom line is that the process has taken baby steps toward getting started. Thus I waited to receive test results from Mount Sinai.

I got several calls from Mount Sinai less than 24 hours later, starting in the morning and going on throughout the day, once I confirmed with my specialist that I have a potential donor. (They knew I had two volunteers at that point.) They gave me two numbers and a website for the prime candidate to contact to get her screening process started, so I sent her all of it and I walked her through any info she needed from me via text.

My specialist is all over this to the point of being annoying, but her time at Sinai concludes at the end of next month and she's been tracking and working with my case for a couple of years now, so she wants everything done as right and as precisely as possible ahead of her departure.

No time is being wasted. I spoke with my specialist a few times that Wednesday and the day after and she is quite concerned about how rapidly my kidney function has decreased since the last time I saw her, which was just in March. She wants to get me started on dialysis ASAP, so while I was asleep on Thursday morning the vascular surgeon — who will be creating my dialysis fistula — called and left me a message, saying he would call back. Since then I spoke with two other surgeons, both of whom pretty much repeated the same information, the admin who gave me the info to give to my prime potential donor, and then my specialist again, who was checking to make sure all of the others had contacted me.

I left a message for my primary care physician, as I required a referral for a cardiovascular specialist ahead of the appointment that was made for me with one on June 10th. I will need a thoracic echo stress test ahead of any procedures, and I was told I will hear back from my PC either today or Monday. Meanwhile, the vascular surgeon eventually got back to me, as promised, and I went in to see him yesterday, That visit entailed a get-to-know-you along with a going-over of my current regular meds, along with an ultrasound evaluation of the arm that will receive the dialysis fistula. Both the surgeon and the ultrasound technician stated that my veins were excellent, so that's a relief at least. However, I have to go in tomorrow for a COVID-19 test ahead of the echo stress test, which takes place very early on Friday morning. And after that, I return for a followup next Wednesday.

Also, the prime donor's son, whom I consider my Number One nephew, let me know that he is also filling out the donor information, so that bring the tally of potential kidneys up to six. The past few days have seen an outpouring of support, as well as several kind volunteers offering up a spare, but of those who have made the offer six are immediate and two have fully registered with Mount Sinai's kidney transplant department, while the other requested and received the registration info. The two prime donors have both been given the green light as donors, so now they must endure a battery of tests to determine their overall health ahead of giving up a kidney.

That said, I'm good, albeit rather on edge. I'm just sitting here buzzing with nervousness, dreading the next time my phone rings, and also dreading filling my mother in on all of this as it all progresses. The past couple of days when speaking to her, it immediately degenerates into her going on and on about how she is constantly praying for me. I understand where she's coming from but she gets all wound-up and manic when she does it, so she comes off as quite crazy, which is in no way constructive. So, upon returning from picking up two prescriptions yesterday, I filled her in on the updates. I know she means well but I had to politely tell her to can it with the platitudes and prayer stuff, as I know she wants me to come out of this well, but platitudes and Jesus did not save me during my years of health tribulations. Science did. She reluctantly cut off the prayer stuff that was on the verge of issuing from her mouth and simply, sheepishly said "I won't say anything." 

So, I'm still buzzing, but a little less agitated than I have been. I am not afraid, just extremely weary after seven years of relentless poking, prodding, slicing, draining, biopsies, and hospital stays. I am absolutely dizzy from all of this, and this isn't really even the start of Round 1 with this procedure...

Whatever the case, one endures and comes out stronger. Adopt, adapt, improve.

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