First, thank you for how well you've loved on me in the last three weeks. Despite having everything flip upside down on me in a matter of moments, the true bright spot has been hearing from so many of you with your love and well wishes. It's given me new perspective on the power of connections we all bear and I am so deeply grateful for your thoughts and prayers.
As one might imagine, sudden kidney failure is quite a shock. Especially when it's caused by a strep throat that you had been faithfully taking antibiotics for! That said, this is all so "crazy" (to borrow a term from my kidney doctor) that it's almost easier to handle as it orients me towards my faith that all things, even the bad or undesired, are eventually worked towards our good. It's a rare condition for children (in developed countries) called poststreptococcal glomerulonephritis (PSGN). For children, it's acute and reversible but for the odd adult who gets it, it can lead to chronic/end stage kidney failure.
As an overview of what happened: I checked into the ER on August 8th with unexplained weight gain. The doctors all thought it was a reaction to a new medication I was on. At this point, I had gained 27 pounds in a week (yes, that's as miserable as it sounds). They admitted me immediately as they tried to return my body to homeostasis. They checked my kidneys and they had elevated levels but told us "well it's not kidney failure, which is good." Yet over a few days I wasn't responding to the interventions. They performed a kidney biopsy, during which I had a rare bleeding complication, requiring a blood transfusion. (The biopsy was maybe the worst/most painful part of the entire 10-day stay, an attending physician called my biopsy "horrific."). This was our first sign that something could be wrong when a friend casually mentioned strep in the kidneys caused bleeding.
The doctors decided the next day that we had to get the fluids off my body and called a surgeon in on the weekend to put a neck catheter in through my jugular vein. It was the right timing, as the fluid build up was so strong in my body that my lungs were getting fluid in them and opioids weren't impacting me. They took me out of surgery and immediately put me on dialysis.
Before this experience, I had no real idea what dialysis is - but its basically life-saving support for individuals whose kidneys have failed. Hemodialysis pumps the blood out of your body into a specialized machine and filters it to remove excess water and balance it the electrolytes. It's a 3-4 hour process that is intensely metabolically exhausting. The first few days, however, I loved it since I was dropping 8 pounds a session. It felt like an instant diet and I was happy to shrink back to "normal."
I had 6 days of consecutive dialysis (with a one day gap in the middle to see if my kidneys would regain function -- they didn't) before being discharged to outpatient dialysis which I attend Tuesday, Thursday and Saturday mornings from 5-9AM. I need to be on dialysis for as long as I live unless I get a transplant.
Transplant. I never thought in my life I'd be telling you that I now need an organ transplant: to be honest, it's a world I was fortunate enough to never even consider before. But here I am. Kidney donation advocates would tell you that a transplanted kidney is not a cure, but to me it's the closest thing we've got and the way I'll be able to resume my life to the vitality I once had. Kidney transplants last an average of 8-10 years depending on the quality, at which point I'll have to return to dialysis and look for another transplant (this is why they say it's not a cure).
The kidney transplant process has so many facets and layers. Donor identification is an elaborate process of testing and compatibility and I'm currently in the throws of blood work, cardiac stress tests, dental exams, etc. to be approved and listed (for perspective, over the last 14 days I've gone to a doctor, hospital or clinic 12 times!) Once listed, potential live donors can be tested and I am eligible for a deceased donor transplant. Average deceased donor wait time for kidneys in Arizona, where I'l be listed, is 5-7 years. This is fairly quick, but to expedite things and since I am a diabetic not producing insulin, we have applied for a kidney-pancreas transplant which can reduce my wait time to less than 2 years. The sooner the better, the surgeons and nephrologists say, as dialysis and diabetes do not go together: Dialysis basically guarantees the development of devastating diabetes complications such as loss of feeling in the extremities, eye problems that lead to blindness and digestive problems.
The surgery itself is pretty intensive, particularly for both a kidney-pancreas, and the recovery requires a 24/7 care giver for 4-6 weeks. We are preparing now for this dramatic life change and the demands it will put on my mother's schedule to take this unpaid time from work.
Many have asked how they can help participate in this journey. First of all, please continue to pray. Pray for a perfect and quick match with the organs and a successful graft (which means my body wont reject it) and a fast and strong recovery. Second, if you are interested in contributing to the costs of the transplant any help you give will help us make the future easier.
As an idea, I pulled from UNOS.org, the major costs incurred in this journey:
PD Catheter surgery
PD supplies and training costs
Pre-transplant evaluation and testing
Fees for surgeons, physicians, radiologist, anesthesiologist and lab tests
Surgery/Hospital Fees both to date and for the transplant.
Follow-up care and testing fees
Transportation costs to/from follow-up appointments
Additional hospital stays for complications, if any (we're hoping no! But they are common with pancreas transplants)
Anti-rejection and other drugs, which can easily exceed $2,500 per month -- these are taken for life, but taper in intensity after about 6 months to a year of dosing.
Travel, food, and lodging for live donors and for myself/caregiver following surgery
10/10/18 update: the initial goal of this gofundme was 15,000$ to help offset the above. With everyone's generosity I've increased the goal to further help meet the real cost that this is placing on me.
Please don't hesitate to reach out and let me know if there's another way you'd like to participate or if you'd just like to learn more. I'm happy to share what I'm learning.
PS. Since writing the above, I began a blog to better share my experience: "https://sosingsthesparrow.wordpress.com/ " The bonus is that it features some of my photos from Afghanistan as cover photos ;)
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