Step 3B – More Tests

May 31, 2018Michael 15 Comments

It’s been a while since I brought you a transplant update so I thought I should get at that knowing that without one soon, your days just wouldn’t be the same.

I haven’t done an update for a while because I’m still in the midst of the tests. You’ll recall the evaluation process started with a series of exams and some “simple” diagnostics – labs, x-rays, EKG, and sonogram. Those were all done in a single visit to the transplant unit at the hospital. More in depth testing was ordered and those are a previously alluded to cardiac stress test, an echocardiogram, a CT scan of the abdomen and pelvis, and a colonoscopy. They should have all been completed by now but the physician doing the colonoscopy had to postpone so that is now scheduled next week. After that I have to secure a medical clearance from my urologist to go with the clearances already secured from the dermatologist and rheumatologist.

You might ask why they need all these tests and clearances and that’s why I’m here. At least for this post. The initial tests determined suitability to undergo the actual operation. For any surgery, a patient will be ordered an initial exam and basic labs, chest x-ray, and EKG. Usually those labs include chemistries and blood studies to see how the body is processing, and the exam is done by the surgeon or a PCP to get an idea of the patient’s general health.

The initial transplant lab tests included the basics but added blood and tissue typing to determine what to look for in a donor organ and some specific tests to exclude the possible or potential exposure to hepatitis, pneumonia, tuberculosis, or cytomegalovirus. These would not exclude a patient from transplant but might indicate additional tests or precautions, or possible vaccines or treatments, may be required.

The more in-depth testing of the echocardiogram and stress test are necessary not only to determine if the patient will be able to withstand the rigors of major surgery but also the aftercare which will be complicated by a drug regimen including immunosuppressants and corticosteroids. The colonoscopy is necessary to detect the presence of any cancers not noted by other tests or reviews which might exclude a patient from consideration.

The medical clearances are specific to each patient’s history. The initial referral must come from a nephrologist or kidney specialist. Nephrology is the specialty involved with the patients already ongoing dialysis treatments so that physician is most able to tell if there would be a possible benefit to considering a transplant and the urgency if so considered.

Every potential transplant patient is also required to have a dermatology clearance. This seemingly unrelated specialty clearance might sound an odd requirement. The immunosuppressive drugs used for life after transplant are associated with the possible development of skin cancers. The dermatologist can establish if the patient already is at risk or has melanoma activity and can further establish a baseline survey to be used as a control for future annual examinations. In my case the dermatology consult was of more significance because I am already being treated with immunosuppressants for the Wegener’s Granulomatosis (now called Granulomatosis with Polyangiitis (GPA) (and we already talked about my feelings on that bit of nomenclature)) that is the apparent cause of my renal failure.

Wegener’s is also responsible for my requirement to have a rheumatology clearance. As a vasculitis, rheumatologists are the most common specialists to be consulted on Wegener’s as are many other autoimmune diseases such as Lupus or Crohn’s Disease. A target organ of Wegener’s is the kidney, especially true in my particular case, so the clearance is required to establish that the disease is not in an active state that would place the donated organ at the same risk of failure as the present. Other organs affected by Wegener’s include lungs, sinuses, and the general vascular system, so active disease would impact the surgery and aftercare even in the absence of kidney involvement.

A urology clearance is also specific to my case because of my medical history having had bladder cancer. That was treated by the removal and subsequent replacement of my natural bladder. I was diagnosed with bladder cancer in 2012. After several attempts of excision of the tumors which all resulted in recurrence we made the decision to remove the bladder completely. This would mean some artificial means of holding liquid waste that typically is done by that unsung organ. Because I was quite young at the time (only 57, and yes, that is young!) we elected to have a new bladder created, appropriately called a neobladder in the medical world, which the urologist fashioned out of a piece of my ileum. That is the final part of the small intestines that connects the small and large intestines. Long story short, it required a very extensive operation and a lot of “re-plumbing.” The urology clearance will confirm there has been no recurrence of the cancer and that all the pieces are still functioning as they should be and are in the places where they should be and the most appropriate locations for the placement and connection for a donor kidney. The specific requirement for my abdominal/pelvic CT scan will aid him in his part of the evaluation.

And that, in not too brief but actually quite brief discussion is why I am still going through all my evaluation tests. I know, your next question is doesn’t that seem to be too long and too involved for a transplant? And right on the heels of that you might ask but aren’t transplants life and death type operations, why such a long wait for these people?

To the first if those I agree it’s taking a while but no, I don’t think it is too long. Certainly you want to be thorough in evaluating the ability of the patient (remember, that’s me) to get through the operation and that you don’t end up with a successful operation but a dead patient (again, me). So I don’t mind everybody taking their time and getting things right.

And to the question aren’t transplants life and death and you don’t want to take forever with this, I say yes and no. In the case of a kidney transplant there is an alternative treatment to End Stage Renal Disease (ESRD). That is dialysis. Of course a transplant will result in a more natural and often longer life, but dialysis, for all its flaws (enough flaws to keep an entire blog running for a good long while) will keep a kidney patient alive. Like a patient waiting for a heart transplant, if I don’t get a transplant I will probably eventually die from my disease. Unlike a waiting heart transplant patient, I can’t mark that inevitability on my calendar. All transplants can mean the difference between life and death but when you consider sustainable alternatives, for some like a heart, liver, or lung patient, a transplant is more urgent than others like maybe the waiting kidney or pancreas transplant patient.

And so the journey continues, albeit slowly. And my thanks to you for coming along also continues. So please, stay tuned.

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)

Step 3a…The Journey Continues

April 16, 2018Michael 16 Comments

We stepped off the elevator and I was sure we turned the wrong way in the garage. I read the directions off to my daughter and we were both certain that we had selected the correct garage entrance and floor and entered the building at the door indicated on those directions. It was a little difficult with the construction going on in the parking structure. Much of the signage was obscured and it lent enough of an air of uncertainty that the only thing I was certain of was that I wasn’t certain. When we went from the brightly lit elevator into the dim hallway I thought this wasn’t going to be my day. That’s when the neighboring elevator pinged and a young lady rushed out, saw us and said, “I am so sorry. I’m late. Let me get this opened up and check you in.” I breathed a sigh of relief that I hadn’t gone completely crazy. Yet.

Welcome to the continuing story of As the Kidney Turns. Last week I finally had my in person evaluation appointment and initial round of tests for a potential kidney transplant. I’m calling this Step 3a because there are more tests to come before we get to Step 4, the (hopefully) acceptance.

Step 3 Day started early. Apparently too early. I’ve never been one to be fashionably late. If told to be somewhere at 8, I show up at 7:45 so when I was told to be somewhere at 7:45…well. But I used to worked right down the street from where we were and I knew that if the stars weren’t lined up just right, and the traffic lights were working against you, it could take 20 minutes to go 3 blocks in that part of town. My daughter was with me for the appointment and we didn’t have to be concerned that we were a couple minutes late getting started. We would end up spending the next 7 hours there.

The day started like any doctor appointment. Height, weight, and insurance. Not necessarily in that order. I was checked in which amounted to verifying insurance and demographics, signing various authorizations and releases, and being led to a combination office/exam room. Then things got different in a hurry. There we spent the next four hours meeting with an insurance specialist, two doctors, a pharmacist, a social worker, and my personal transplant coordinator who would be my contact throughout the process all the way to the surgery if that would be the (again hopefully) ultimate end. (I then would be transferred to a post-transplant coordinator who would stay with me presumably until my ultimate end.)

We talked about the actual procedure, that a my own kidneys are not removed but a new location is prepared for the transplanted organ and the how the blood, nerve and fluid connections are made, where that space might be, and the physical recovery from the operation. Most people recover in the hospital for 5 to 7 days then at home for another month or so before resuming regular activities.

We talked how with a transplant the recovery process never really ends. The initial follow-up requires twice weekly visits to the transplant center for 4 to 6 weeks, then weekly visits, then twice a month, then monthly, and so on until I would stabilize at life time annual visits. Post-transplant specific medications are used for life to lessen the chance of rejection and infection.

We talked how if accepted into the program while awaiting a transplant there will be the need for ongoing tests and examinations to continually affirm my suitability. In the absence of a living donor that wait could be 4 to 5 years. Those tests include specific blood tests drawn every month and because I have Wegener’s Granulomatosis which is treated with an immunosuppressant, I would have to be re-cleared by those physicians every 6 months confirming I have no exacerbation of that disease or confounding effects of the drugs used to treat it.

We discussed the differences in recovery and results between living and deceased donated kidneys. If you’re wondering, kidneys from living donors tend to begin working shortly after implantation and can last for 15 years or longer. Those from deceased donors may take several days to begin working and can be expected to keep on working for 8 to 10 years. Also, again if you’re wondering and because I always had, a living donor who should someday need his or her own kidney transplant will receive priority in their own journey.

We also talked about what all this means to me and my family. Pre-transplant for me means continuing with dialysis and some more frequent doctor visits to insure I remain suitable for the procedure (if it’s determined that I am to begin with). The additional blood test can be drawn at the dialysis clinic so that would be one less trip I’d have to make each week. Speaking of trips, if I feel like taking one I’d have to notify my coordinator where and for how long I’d be. Because I live alone, after transplant for those first few weeks I’d need someone to stay with me or I to stay with someone. I would also need assistance getting around initially and getting around would be necessary having to make the trips into town for those checkups at the clinic. Fortunately, those will be short trips. Family gets involved right away. One of the requirements is attending a patient and family education class that goes over in more detail all that was discussed at last week’s appointment.

After all the meetings with all the people and a physical exam from both doctors (there were two doctors because one was the medical specialist and one the surgeon), I was set loose in the hospital for various tests. Those included to the lab for blood test (17 tubes, yikes!) and a urine sample (only one, thankfully), to cardiology for an EKG, and to xray for chest xrays and a sonogram of the kidney and one of what I have been given to replace the bladder. Still to come are a stress test, an echocardiogram, a cystogram, and (my favorite) (yeah, right), a colonoscopy.

Early returns seem to indicate I might be able to pull this off. Nothing came up at the initial exams that would have immediately disqualified me and the test results that have come back are more or less normal, for me. The remaining tests are scheduled over the next several weeks and I hope to have a definite answer by June. Then we can start thinking about possible donors and a whole new step.

DLA Again, thank you for staying on the journey with me. Coincidence continues. This month my transplant evaluation coincides with National Donate Life Month. Every April, Donate Life America celebrates National Donate Life Month, focusing national attention on every individual’s power to make life possible by registering as an organ, eye, and tissue donor, and learning more about living donation. Many years ago I registered to be a donor. That was long before I ever suspected I would someday be looking at transplants from a recipient’s perspective. If you’d like to explore becoming an organ or tissue donor, check with your local transplant center, your personal physician or the Donate Life America website, or register at RegisterMe.org.

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)

The Next Step

March 15, 2018Michael 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.

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)