The Next Step

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)

 

First Steps

I did something last week I have never ever done in my life that may well change my life. Yes, even this old life. And even though it put things into play that will someday move very quickly, these first steps are going to plod along. I’m going to take you on this journey with me mostly because I don’t want to go and I think those here in my immediate world might need some help keeping me moving along.

Warning, this post actually has some personal information about me that I’ve never shared before. It is not recommended for the squeamish. (Or for those who might have developed any kind of respect for me especially when I reveal what a fraidy-cat I am.)

Last week my nephrologist put in referral paperwork for me to be evaluated for a kidney transplant. And I am terrified.

I’ve worked my entire adult life in health care, mostly in hospitals. I am the most rational human being when somebody asks me for an opinion, a clarification, or some information. But when it comes to me, I’m the biggest wimp in Fraidytown. I hate doctors and nurses and hospitals and medicine and machines whenever I am the focus of their attention. The only good people I see from a hospital bed are the ones who bring me food. Everybody else is an unwelcome visitor. 《Shudder!!!》Now I’m going to have to go through examinations and tests and (arrgghhhh!!!) needles to see if I get to be cut open and have more of my insides swapped out or get sent back to live a life of dialysis with its sharp objects and scary machines.

I hate dialysis. Let me see if I convey how I really feel about dialysis. I hate hate hate hate hate hate hate hate hate hate hate hate hate dialysis. And if one more person tells me “but it’s just a few hours a week” I will stab them with the needles that are thrust into me at each session.

Unlike other long term invasive procedures where an access port might be implanted under the skin to accept the needle used (say for chemotherapy), in dialysis the preferred method of access is your own vein. A surgeon cuts into your arm and brings the vessel from deep within the arm to immediately underneath the skin. Yes it is weird seeing your vein basically sitting on top of your arm and feeling it pulse with your, well, your pulse. Into this vein a dialysis nurse or technician inserts two needles about the diameter of a ball point pen, connects those to a pair of plastic tubes, and attaches those to a machine about the size, and with similar function, of a gasoline pump.

For the next three and a half hours I get to watch my blood zip around the room while it is rid of the crud we ask our kidneys to shed that mine decided to stop shedding. Add in the before and after procedures and repeat a few times a week and that’s why I hate dialysis.

But I also hate surgeries. Let me see if I can convey how much I hate surgeries. You get the idea. I won’t put you through that again. For the first 55 years of my life I had never been in a hospital as a patient. Never a broken bone, never a needed stitch, never even a false alarm brought me close to wearing a hospital gown. Then in less than four years I spent 18 months with my back end uncovered and endured four surgeries, only one of which I didn’t almost die during or shortly after. (True stuff there.) In the last couple years I’ve been back for numerous outpatient procedures and one additional full blown surgery (not death defying (whew!)). Familiarity doesn’t really breed contempt but it sure breeds a hell of a lot of fear.

Every surgery I’ve had has been complicated by a condition I live with that makes decisions for me every day. Seventeen years ago I was diagnosed with Wegener’s Granulomatosis, now known as Granulomatosis with Polyangiitis. We’re not allowed to use the W-word anymore because he was a Nazi. GPA is a rare type of vasculitis that affects less than 3 out of 100,000 people and is fatal without treatment. There is no cure but with various medications the inflammation can be abated. So we have a fatal, rare disease, without a cure, and after years of research somebody figured out the doctor who discovered it was on the wrong side in a war and shouldn’t be “honored” by having a rare, fatal disease, still without a cure, named after him.

GPA primarily affects two major organs, the lungs and (drum roll please) the kidneys. Yes, my kidney disease is not a result of the trauma of the surgeries or the cancer or hard living. It is from the Wegen– oops, from GPA. So in addition to the rest of the pending evaluation, I have to somehow demostrate that my chronic condition will not adversely affect a new (actually a used) kidney. I do that by taking my medicine and having regularly seduced blood work to measure the inflammation markers in my blood. More needles!

So, to make a long story short (I know … too late), I am about to embark on a process that will determine whether I undergo major surgery followed by a lifetime of drugs and tests, or continue with dialysis and a lifetime of big thick needles and multiple times a week treatments and general life interruptus.

And I want you to come along! Now don’t you just feel special?