Tag Kidney Transplant

And The Wait Goes On

Michael 6 Comments

It’s been 6 months since I wrote the first post about the kidney transplant journey I’m on. Since then a lot of tests have been performed, a lot of blood and urine analyzed, a lot of x-rays and scans shot. Three months after that first post I reported I was officially placed in the list to await a transplant and if any willing and available volunteers could be evaluated for a potential live donor transplant.

Right now we’re still waiting for donor evaluations to be completed. It seems a long time but it really isn’t. Maybe to a chameleon but not to a human type person. Not even to a human type person waiting for a kidney transplant. With the possibility of waiting up to 5 years, 6 months is nothing, just 10% actually.

But it is long enough that now I’m thinking. Not good stuff all the time. Some of it is good. It’s amazing that of my 3 closest living relatives all three are willing to put themselves through this process. Then that gets me thinking would I for them? I’m sure. What about for a more distant relative…a cousin or cousin’s offspring,? How about a really, really close friend or child of a friend? What about a not so close friend? An acquaintance? A fellow church member or coworker? Stranger? Some people have said yes to all. Altruistically, I’d like to say sure I’d say yes to all. Realistically I know I wouldn’t. But where would the line be drawn? We know intentions are always better than actions but how close are the two when the reality is losing a major organ.

My driver’s license says “Yes I’m a donor. Feel free to use me. Um, but please wait till I’m gone and the only voice I have is this little plastic card.” Would I be willing to say “yes I’m a donor” while I can still speak those words? I suppose I already have. I mean, I’ve donated blood. Does that count? Does it count if I’m a true trypanophobe, which one has to get over if one is going to survive dialysis. (By the way, numbing creams and sprays really do help if you should be interested.) But donating blood isn’t like losing a body part. Blood grows back. Sort of. Kidneys don’t. No way.

Another thought that sporadically pops into my brain is a biblical question. God fearers learn that God not man determines life, thus the opposition to euthanasia and capital punishment. But the converse never seems to be debate. Churches are a main provider of support to transplant recipients even to the point of holding fundraisers to provide financial assistance. If God, not man determines life, is a transplant a means of man extending life? Or is it maintaining life to get the recipient to what would have been the natural ultimate endpoint?

I hope all these thoughts are just my mind doing its thing to fill the void left by the manic pace I underwent doing my evaluation and testing phase and it will quiet itself as it gets used to the waiting period. Maybe after it’s had its fill of playing ‘what if’ games it will settle down and think more productive thoughts like why shouldn’t Seattle get an NHL franchise.

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If you’d like to re-read all the posts in this thread as well as other related posts, I’ve put links to all of them on one page. Go here, to join the journey.

Related posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective

Step 1 Again…The Donor Perspective

Michael 12 Comments

Now that I’ve been added to the kidney transplant waiting list the hard work begins. Finding a donor. On one hand you can sit around, stay healthy, make sure the transplant center has your current contact information, and just wait. On the other hand, you can try to find a living donor and go through all new sorts of levels of stress.

My immediate family has dwindled to a pair of sisters and a daughter. That would not be a good hand to hold in poker. But all three have expressed interest in donating and that closes the odds. They decided they would go through the donor evaluation process before we would ask if we should look to others. All three are currently in the process but at different stages. Two have been determined to be acceptable matches, one still awaits those results, and none is anywhere near completing the battery of tests donor candidates face.

You remember all the examinations and tests I had to go through? If you don’t, type “kidney transplant” in the site search bar and refresh your memory. We’ll wait. … Ok, ready? Well, as the saying goes, you ain’t seen nothing yet!

Like mine, their first appointment was a phone interview, a few basic questions designed to screen for obvious exclusions like diabetes, untreated high blood pressure, or various cancers. Also like mine, their first on site appointment meant lots of tubes of blood, a chest x-ray, an EKG, and face to face interviews with a nephrologist, surgeon, nurse, social worker, and transplant coordinator. Unlike mine, theirs also includes a donor advocate who is also a previous donor.

Like my first appointment at the hospital they left with a handful of appointments for follow up tests. Unlike mine, theirs were unlike mine. Where mine were targeted to make certain I could sustain the rigors of the operation and maintain the required follow up to prevent rejection, potential donors are tested to make as certain as possible that they are as healthy as possible and will be able to withstand the rigors of life with a single kidney.

Potential organ donors must be at least 18 and not more than 70 years old. That’s quite a range and obviously an 18 year old is going to be and is going to expect a different level of health than a 70 year old. My potential donors are just shy of 29 and a little over 67 years old. The one in between just turned 56. Three different stages of life, three different batteries of tests. Any single test can exclude the person or become the focus of a follow-up test. Surprisingly the youngest has the biggest list of baseline tests. As she explained it, the reviewing nephrologist said a 48 year old who is healthy today has a pretty good chance of still being healthy in 20 years. He has already passed the age when chronic illnesses would have taken hold even if they aren’t obviously obvious. Being healthy today means less to the 28 year old and how she will be at 68, 58, or even 48 so her testing will be more in depth and her expected results more stringent to mitigate missing sign of problems that might develop in the future.

In all cases they are going to get the best physical they’ve ever received. And if they pass all the physical exams they even get to have a go with a psychiatrist.

That’s just in case you thought you were nuts giving away part of your body.

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If you’d like to re-read all the posts in this thread as well as other related posts, I’ve put links to all of them on one page. Go here, to join the journey.

Related posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)

 

Step 4: The List

Michael 12 Comments

We are making progress. Tuesday afternoon I received a call from the transplant center at the hospital that the test results are in, the clearances have been reviewed, the committee has met, and I can now say I am officially sick enough to need a new kidney if one can be found for me. Have a seat, pour your favorite beverage, and I’ll tell you the next chapter of this story.

Saying I am sick enough for a transplant is really not accurate and was not the point of three months of testing. We knew the level of my sickness of those organs the first time they stuck a pair of needles into my arm, attached the other ends to a dialysis machine, and said it will get easier over time. They were, they still are, and it hasn’t yet so it probably won’t. It won’t.

The point of the tests, the examinations, and the reviews was to see if I am healthy and strong enough to withstand the surgery, recovery and follow-up to replace those pieces of mine that zipped right on passed middle age outpacing the rest of me to done for. And we discovered and now have documentation that I am. Er, healthy and strong (sort of), not yet done for.

Now we just have to find a replacement for those pesky, unproductive pods. Unlike other parts of me that have been unceremoniously replaced, there aren’t any replacements for a kidney other than another kidney. That means finding somebody who is done using his or hers or someone who is ready to part with one of the two that come as standard equipment in homo sapiens.

And now we come to the point of Step 4. The List. People, including me (well, I’m people too), refer to The List. There really is no single, all encompassing, first to last list. If you want to think of a list, it would more appropriate to think of each donated organ having its own list. When a person is accepted into the program and begins waiting for an organ, his or her matching criteria is placed into a database. When an organ becomes available, the organ’s criteria is compared to the database and all those people whose needs match the offered organ are retrieved. With some exceptions they are retrieved in the order they were entered into the system. Thus, The List for that organ.

There are exceptions to being positioned on the list from the order a person entered the system. Neonatal and pediatric patients are given some preference and people in need of a transplant who had earlier in their lives donated an organ receive placement preference.

When my blood was drawn in April at that first test in the transplant center, there were already over 114,000 people waiting for an organ transplant in the United States. When I became approved on Tuesday, 143 other people joined me being added to The List. About 95 transplants were performed that day and 20 people died waiting. The List grew by about 3,600 since April.

A recent poll revealed that 95% of people support organ donation but only 54% have ever signed up to be a donor. Unfortunately, only 3% of deaths result in actual available organs appropriate for transplantation. And so, the list grows. I could wait for 3 to 5 years until I make it to the top of an organ’s list.

There is a way off the list without dying or becoming too sick that a transplant’s benefits no longer outweigh the risks. The living donor. Kidneys and portions of livers can be donated by live individuals directed for a specific recipient. (Some people actually make altruistic donations that enter the general pool and are designated to a recipient as a deceased donor organ would be.) Under very rare circumstances, lung, pancreas and intestine live donations may be possible. Living uterus donations are undergoing clinical trials.

Living donors account for about a third of kidneys transplanted in the United States. Kidneys from live donors not only mean a faster transplant for the recipient but a more successful transplant.

Already four people have stepped forward and asked about making a living donation of a kidney for me. Their evaluations will begin next month and can take two to six months to complete. I’ll take you along that side trip as we make this stop on my journey. That way you’ll know what a potential living organ has to go through.

Just in case.

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Related posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)

 

Step 3B – More Tests

Michael 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.

Related posts

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

Cramming for Finals

Michael 9 Comments

I have a test next week. I haven’t taken a test for years and frankly I’m a little concerned. I have just over a week to study up as much as I can for my stress test next Friday.

Yes, you read that right. A stress test. Go ahead and laugh. Here, I’ll even help. A guy asks his friend’s wife where he is. “At the bar. Studying.” “Studying? What kind of test can you study for at the bar?” “His urine test of course.” Ha. Ha.

But this is different. I think I really do have to study for this stress test. Stay with me for a while. There are two basic types of stress tests. One is an EKG/exercise test and one is a exercise/rest/perfusion test. The common factor between the two is the exercise part. Walk on a treadmill until your heart rate is elevated to some specific level or you fall over, whichever comes first. Maybe it’s not put quite so cavalierly by those administering them but that’s basically how the stress is induced during stress tests.

I’m not worried about getting my heart rate up. I know I can walk far enough to get my heart pumping. I’ve been walking again these past few days now that it is nice again here in the until recently frozen northeast. But the problem is I’ve only done that recently and only outside. I might be a bit out of shape from not taking advantage of the treadmills in the exercise room but that doesn’t concern me either. No, what has me wondering about how I’m going to do with this test is that darn treadmill.

Treadmill

Image: Freepik

I can’t work treadmills. That’s why I hadn’t taken advantage of them during the cold weather months. I can’t walk on them. How, you ask, does one say he can’t walk on a treadmill? Because I fall over. I walk with a cane. The reasons don’t really matter but what happens if I don’t is that I tend to tip over. Really. I also wobble and waver. Walking in a straight line is not one of my talents. And yes, I was once stopped at a random sobriety checkpoint, and no, the nice officer didn’t understand that either so don’t feel bad if it’s not making sense to you. On a treadmill I won’t have my cane so I’ll have to hold on to the rails and when I do that I can’t swing my arms and when I do that I lose my balance and when I do that I fall over. (The only person I ever knew who actually fell over during a stress test was a friend of mine who ended up being prepped for coronary bypass surgery minutes after hitting the floor.) (His problem had nothing to do with not being able to work a treadmill. He just had a bad heart.) (True story.)

So, that’s why I think I should study and put a few miles on my sneakers on a treadmill. So I don’t fall over. I’m not worried they might mistake me for one needing emergency open heart surgery. I’m worried they might say they can’t get any useful information out of my test and either a) chemically induce the stress (not pleasant), or b) give up (not an option). Since this is part of my ongoing kidney transplant evaluation you see why Option b) is not an option but Option a) is still not on my “things I’d love to be doing instead of falling over” list.

This is one test I really cannot afford to fail. But I’d be just fine with a C. So I’m thinking I have to study.

 

Step 3a…The Journey Continues

Michael 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.

DLAAgain, 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.

Related posts

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

 

 

 

First Steps

Michael 24 Comments

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?