Tag National Kidney Foundation

Orange is the New Gold

Michael Leave a comment
Sunday November 3 was the coldest Sunday since spring had sprung some 7 months earlier. And what was I getting ready for at 6:30 that morning? I was going for a walk, a Kidney Walk at of all places, the Pittsburgh Zoo.
 .
This particular Sunday stroll was in support of the National Kidney Foundation, and organization in support of kidney disease education, treatment, and support. Like so many other disease focused organizations, money raised by the NKF goes to research for treatment and to find a cure for kidney disease. But it also provides direct assistance to those suffering the disease right now by assisting patients, families, and caregivers through resources including health checks and screenings, drug discount programs, and peer support made possible by fundraising activities.
 .
Since I had begun chronic dialysis 3 years ago I recieved helped from the National Kidney Foundation but was never able to show my support for the organization. For the first time since my diagnosis my entire immediate family was able to register for the walk. The Kidney Walk does not carry an “entrance fee” nor a “suggested donation.” Your entry fee is your willingness to show support. Your donation is what you want to give or can raise from friends and family to support your personal cause. This year 2300 Pittsburgh walkers raised over $255,000 for those causes and I’m happy to report that my family was responsible for one of those thousands. Walkers included kidney transplant recipients, kidney donors, dialysis patients, care providers, and those many friends and family members on foot, in wheelchairs and strollers, with the help of canes and walkers, and even physically carried by others.
.
Unlike many others walking I was diagnosed without any of the classic risk factors or warning signs. The major risk factors for kidney disease are high blood pressure and diabetes; family history and obesity are also major contributors to that risk. Some of the common early warning signs include nausea and vomiting, irregular heartbeats, pain in the lower back, and shortness of breath. I had and still have none of those. My kidney disease is caused by complications from an autoimmune disease and was revealed through routine lab studies at regular checkups. Like many walkers I doubted I would ever find myself relying on dialysis for life or undergoing a kidney transplant. And most unfortunately like many other walkers I found myself both of those. Most fortunately though, my disease was discovered and I was able to join in the walk.
.
Orange was the color of the day at the zoo. Although kidney disease awareness is typically represented by a green ribbon, the National Kidney Foundation has adopted orange and black as the organization colors. Orange shirts, hoodies, caps, backpacks, and even baby strollers marched on a three mile trek among the animals at the Pittsburgh Zoo to bring awareness to chronic kidney disease, a disease that affects nearly 40 million American adults with another 200,000 diagnosed each year.  Over 800,000 of those patient are in end stage renal failure requiring dialysis or a kidney transplant.
.
To us it doesn’t matter what color was worn. The money raised is the gold at the end of the rainbow. 
.
.

The Next Step

Michael 12 Comments

Welcome to another episode of As the Kidney Turns. When we last left our hero he had just been referred to the local transplant team for evaluation for a potential transplant. Yesterday he got the call to schedule that appointment.

Yes, I got the call Wednesday afternoon for a phone review and to schedule the first kidney transplant evaluation appointment! Even though I spent my career in health care and even participated in post-transplant processes (more on that in another post coming soon), this is going to be a new experience for me. I said I’d keep you in the loop with the process and we start here if you’re still interested in coming along for the ride.

The telephone interview ran a little over a half hour and included a review of systems (current health status and medical conditions, medical history, past surgeries, recent tests, and physical abilities and limitations), and a brief description of what to expect from the evaluation appointment.

The first contact with every new provider always starts with the review of demographic information – height, weight, date of birth, and those sorts of etcetera. One of the questions posed was actually the second time I was asked it this week and the first time was by Tax Guy. You remember him from the last post as one of the stops on my whirlwind appointment tour on Monday. What could a tax return preparing team and a kidney transplant evaluation team have in common? It was “are you working?” It was actually a two parter. First “are you working” and that was easy to answer. No. The follow up was more difficult. “Why?”

It wasn’t put so bluntly by either, but both had to put something down on their forms. The US tax return includes a space for “occupation” that must be filled. Since I am not working I have three choices: unemployed, retired, disabled. I’m sort of all three. I am not being employed to anyone’s good use.  I am old enough that I could retire but not so old that I can draw on pension benefits. And I am not working due to the loss of function that was required to perform my job. Since my income is from disability benefits rather than pension benefits I am disabled rather than retired for the purpose of paying taxes. So that satisfied the accounting world.

The transplant evaluation people need to know if I am physically able to withstand the rigors of the operation and recovery. Being disabled affects not only the need for the potential transplant but the response to the transplant and it’s after effects. A kidney transplant is different from a heart, lung, or liver transplant in that for most potential kidney transplant recipients, if one does not receive the transplant there is still another option to maintain life. Dialysis. It’s not a perfect alternative but for the patient who cannot tolerate the surgery or recovery associated with a transplant it is a means of replacing not the kidney but what the kidney does. Knowing that, it is in the patient’s best interest to not subject him or her to a major surgery that poses significant and severe risks if those will be more harmful than not having the transplant.

So, to make a long story short (which I almost always cannot and once again I fear I have not), in the medical world there are basic functions that I cannot perform on my own including walking and standing without assistance, the loss of my bladder and associated parts requiring me to rely on self-catheterization for what the bladder and other parts usually do, and the ongoing and chronic progression of Wegener’s Granulomatosis and its effects. In the medical world, I am also disabled. But enough of me is still functional enough and strong enough to, on paper, appear to be able to withstand the rigors of transplant surgery and recovery, I can now progress to the evaluation stage to determine if the theoretical transfers positively to the practical.

NationalKidneyMonth

Source: National Kidney Foundation

I’d be very happy and honored if you’d stick with me for that progression. Hopefully this will be the only time that you have to make such a journey. March is World and National Kidney Month. Even though my appointment isn’t until April I’m going to take it as a good omen that I got my call this month. You can make my journey yours and not have to make one on your own, if you remember to, in the words of the National Kidney Foundation, “heart your kidneys.”

Related Post:
First Steps (Feb. 15, 2018)