Last week we learned the horrifying truth that my wife’s kidney disease is progressing faster than we anticipated. She is extremely concerned about her work finding out and forcing her out before she can use her short term disability, which she is duly entitled to. This has caused even more stress, as she is caught between needing to go to the doctor, but not want to go so much that she raises red flags.
But her polycystic kidney disease guarantees she will need a transplant. This is no longer a hypothetical scenario.
And while of course it would be flatly illegal for them to dismiss her for such a reason, it happens everyday and without question is a threat.
My heartbreak is of course borne of her situation, but also even deeper due to the fact that the nature of my cancer history, being of the kidney, precludes me from being able to donate one of mine. It is a promise I made to her over 21 years ago and it is a promise that I am not able to keep as long as I am alive.
And that is the one exception to that as the transplant department explained. I can not donate as a living donor. However if upon my death I am cancer free it would be a possibility. This is because they would not want me to function with one surgically reduced kidney.
Naturally, I do not like this option.
Sometimes I look at her and get so down on myself. She could have married any number of men that would have been able to come through with the most important promise of all-a chance to extend her life. But she married me. And I feel so terribly guilty, yet I can’t imagine my life had I not been led to her..
In researching the future we face I found the statistics are sobering. Nationally, the number of people waiting for an organ transplant of some kind is more than 106,000. Each day, 17 people die waiting for a transplant. In 2020 alone, some 39,000 people received a transplant. One donor can save 8 lives, and enhance 75 more.
Of these patients the majority are wating for kidneys. The average wait varies by region, but it averages, and can exceed, five years. This is the most terrifying part of all; the average patient with acute chronic kidney disease can live some 5 to 10 years on dialysis. There is no guarantee Valerie will receive a suitable donation in that amount of time. And one of the other catch-22s is the BMI issue. Because her particular disease causes severe swelling of the kidneys, she retains more water and thus, more weight.
In fact, the disease wreaks havoc on metabolism altogether, making it even harder to lose weight. Yet in order to qualify to be on a transplant list, there are certain BMI requirements that must be met. It is very difficult for her to lose weight, as she has dropped to under 1,000 calories for the past several days and has lost nary a pound.
And yes, when I realized she was eating that little we had a conversation about healthy eating. Unmonitored caloric restriction can create a plethora of other issues which must also be guarded against.
The process of being put on a transplant list is lengthy but straightforward.
You can only be ready for a kidney transplant after you have passed the required evaluation at a transplant center that looks at your physical health, mental health, and finances. If you pass this evaluation and the transplant team decides you are ready for transplant, you will be added to the national waiting list.
The national organ waiting list is managed by an organization called the United Network for Organ Sharing (UNOS), a private, nonprofit agency that works with the federal government. UNOS keeps track of all the people in the United States who need kidney transplants, and matches them with donors.
The national waiting list is not an ordered list that gives priority to the person who has been listed the longest. The UNOS waiting list uses complex ways to calculate where and when the best kidney match becomes ready for you. The United States is divided into 11 regions and 58 local Organ Procurement Organizations (OPO)s, which are areas used to find matches for transplant. For example, if a kidney becomes available, UNOS will first try to find a match in the OPO where the kidney is being donated. If no match is found there, UNOS will search within the larger region. If no match is found within the OPO or region, the kidney will then be available to someone who lives outside the region.
However it should be noted that this is not the human equivalent of getting a fuel pump replaced. A car is not subject to compliance standards, no matter how much it misbehaves.
This is important and I cannot stress this enough-behavioral issues and noncompliance with recommendations by your nephrologist and medical team can result in an inability to qualify for a transplant. These are considered precious resources and UNOS wants to make sure they will go to recipients who appreciate the chance at life.
In the process of determining eligibility for organ donation, doctors and hospitals take many factors into account. Federal regulations direct the Organ Procurement and Transplant Network (“OPTN”) to develop policies for the equitable allocation of organs among potential recipients based on sound medical judgment and that achieve certain performance goals, including standardization of criteria for determining suitable transplant candidates. 42 CFR § 121.8. Criteria for adding individuals to and removing them from organ transplant waiting lists are to include “objective and measurable criteria” to the extent possible, but the regulations do not elaborate on these “objective” criteria.
The definition of a “noncompliant patient,” as provided in an article by Rodriguez et al.,[i] is as follows:
a noncompliant transplant patient is a patient with poor attendance to clinics or to laboratory appointments, who delayed in the notification of problems, showed poor adherence to diet and/or consistent weight gain, and showed poor adherence to their drug schedule including minor deviations.
In writing this diary, I wanted to reach out to my friends to be able to get some things off of my chest, but also give good information to others reading this in need.
But before I conclude, I want to refer to an above quote-
You can only be ready for a kidney transplant after you have passed the required evaluation at a transplant center that looks at your physical health, mental health, and finances.
Yes. they need to see that you are in a financial position to support the process of transplantation. That is a real requirement to save your life in our self-proclaimed “exceptional” nation.
And this along with my mom and brother’s situation, is a huge reason I work so hard, and do so little else, because I have a short window to build and prove enough income on the books to show the hospital bean counters that my wife can support a transplant. I am exhausted. But if I fail, I will have failed her twice regarding this emergency. I can’t let that happen.
So, I will work as hard as I can for as long as I can.
I love this woman more than any language can express. I hope no matter what happens, she never doubts that. The world needs more of her in it. She is sweet, dynamically intelligent, capable, and empathetic. And of course, she is stunningly beautiful.
And I hope that I have also been able to share some valuable information to those in a similar situation, or with a loved one facing this hurdle.
I truly appreciate you reading, and I thank you for being my friends. Just knowing you all care helps me push through another day. Mr. And Mrs. Claw love all of you.
-ROC
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Love,
-ROC