Tag Wegeners

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)

Figuring It Out

Michael 2 Comments

You haven’t read anything from me since early last week. It’s not because I got sick and ended up I the hospital or anything dramatic like that. I just haven’t been feeling me lately. I’ve not had a bad week but I’ve not had a great one. Sometimes that happens. To look at me you’d probably not notice much, if any difference. Most of the time I look neither disabled nor chronically ill, yet both of those I am.

Neither of those necessarily has anything to do with the other of those. I, you, or anyone else can be one, the other, both, or neither, and it would all be perfectly normal. Except for those who are not perfectly normal.

If I had to pick which to be I’d go with the neither option. Being chronically ill is a little easier in society. There are lots of support groups for almost any chronic illness you can name, from “basic” high blood pressure to the more exotic diseases and conditions of which two have taken residence in me. Most chronic illnesses do not result in a disability but the ones that do quite make up for that vast silent majority of those that don’t. Even those leave most people looking like there is little, if any wrong goings on under an otherwise fairly healthy looking skin.

Being disabled is also no picnic. I’m lucky that I still have most of my abilities available. I might be able to imagine a world where I am dependent on others for daily functions that you take for granted like washing behind your ears or making a cup of tea. But I can’t imagine what it’s like to be dependent on people’s foresight and planning to permit me to do those other things you take for granted like opening a door or stepping up onto a curb.

Whether overtly disabled, like a paraplegic in a wheelchair, or with a hidden disability that doesn’t affect mobility until you’ve taking the first 30 steps then can go no farther, there isn’t a whole lot of acceptance and accommodation going on out there. Wearing ribbons and outlining parking spaces in blue just don’t add that much to my quality of life. Sorry.

If you don’t read “Help Codi Heal” you should. Codi is a young wife and mother of three who was living her life when she was injured in a fall two years ago and now is living her life in a wheelchair. Because she is seen differently now, in a recent post she wondered how she would teach her children to accept life’s differences. Her dilemma came as she wondered how you teach acceptance of differences without pointing out the differences. Her not quite 4 year old taught her children don’t have to be taught acceptance. They are naturally accepting. So then, the new dilemma is how do you get them to stay that way?

NoHPaccessI think the answer is, you don’t. Leave it alone and let the children grow into being accepting adults organically. They won’t turn out to be ogres. I’m certain the amount of non-acceptance is directly proportional to a society’s extent of sensitivity training. The more we try to “teach” acceptance, diversity, inclusion, and affirmation, the more we turn away, divide, exclude, and deny.

Our attempts at equal rights for anything have never really succeeded. We manage to call so much attention to the inequalities and attempting to right past wrongs we never get around to actually addressing the actions that made the thing wrong.

Let me tell you a true story. In 1972, I applied for a summer job at the local steel mill. That was when many companies were feeling pressure from regulators to comply with what was then called affirmative action, ten years after the regulations went into effect. I went through all the necessary applications and tests and was in an interview with the personnel manager who told me that he’d love to hire me but he really needed “a black or female student to even things up” for that summer. No discussion of my ability or inability to do the job, just what he needed to do to “even things up.” That phrase stayed with me and at every job I ever applied for in the next 40 years I heard it in my head. I always wondered if I’d be competing against any minorities and would I be unfairly dismissed because I wasn’t one. Real or no, that was a perception that stayed with me for a lifetime.

Forty years later when I was the hiring manager, I was required to give each applicant a form to voluntarily complete after the interview. It asked the applicant’s sex (male, female, other), race (optional), ethnic background (of a select handful), and veteran status. This was sealed and sent to a third party to tabulate to determine if we were interviewing from a pool of applicants representative of our local population. No question of the job we were interviewing for, education or experiential requirements for the job, or if the applicants who responded were representative of the population. Real or no, pressure was felt every time I had to make a decision among applicants of diverse backgrounds, even if their professional backgrounds were also quite diverse.

How do we address the elephant in the room? If you ask a roomful of 3 year olds they would probably say, “Look, an elephant! Let’s play.” How do we get the three year old grow up to be 23 with that same innocence and acceptance? Just leave them alone.

They’ll figure it out.

 

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?

 

 

 

 

 

Those Who Should Know Better

Michael 14 Comments

Ok, you’re going to need a little background for this. At times I’ve written about having kidney disease and going through dialysis. You might recall other times I’ve mentioned some unspecified rare disease. And then once or twice I talked about cancer. So if you sometimes get confused I can understand that. Some of my best friends get confused regarding what’s going on with me. Apparently so are some “experts.”

For the record, it all started about 15 years ago when I was diagnosed with Wegener’s Granulomatosis. Wegener’s is an autoimmune vasculitis that affects the smallest of blood vessels and the organs they occupy – most notably the kidneys, lungs, liver, and sinuses, in my case the kidneys. There is no cure but it can sometimes be controlled with combinations of chemotherapy, immunosuppressant, and steroid medications.

After 10 years of treatment with methotrexate and prednisone, the working parts of my body decided they wanted some attention and got together to vote on who would revolt. My bladder either won or lost depending on your point of view and grew cancer.  One year and four operations later I was pronounced cancer, and bladder, free and the proud owner of rebuilt body parts fashioned from other body parts that to this point had done not much more than the jobs they were originally intended.

In the process of trying to create a recoverable environment for my post-operatively rebuilt body I had to replace the drug therapy that was so far managing to keep the ravages of the Wegener’s at bay but now not such a good choice in a body now equally desperate to keep other cancers at the same bay. While that search was underway the dastardly disease took advantage of the temporary unprotected kidneys and put them into a (hopefully but who are we kidding) temporary shut down and put me in a chair at the local dialysis clinic.

And that’s how I came to be an unplanned early retiree with a handicap placard hanging from my rear view mirror. But “who are those who should know better?” you asked. Good question.  Why, the health care “experts” of course. I’m allowed to speak of them with disdain because I was a health care expert for close to 40 years before my unplanned early retirement. And those years included years when experts in health care were the ones educated in and actually providing health care.

Recently I had to complete some paperwork for the government’s end stage kidney disease program including what led me to be on dialysis. As in the past I check “other” after not finding in among the pages of pre-selected options and entered Wegener’s. It was rejected because there is no such condition in their database of diseases. Since I have it know for sure there is but I also know for sure it’s also known by another name, Granulomatosis with Polyangiitis, I questioned the explanation. Even if you’re being paid by the letter you have to agree that Wegener’s is an easier fit for a government form. And that’s why I had always fit it. So I called the help number for some help and asked what I had done wrong. I was told we’re not allowed to call it Wegener’s anymore because that doctor who discovered it “was a Nazi you know.” So all traces of his name have been removed and it is disallowed from official use. I wouldn’t have minded if at least they would have matched the funds it took to rename everything for “official use” with perhaps some official research.

But those are government people who are used to doing stupid things. Or things stupidly. But…there actually are others who should know even better even. Those are ones who bring me my tri-weekly adventures in artificial kidney function replacement. Or dialysis if you prefer,although personally I don’t prefer dialysis.

At the corner kidney clinic they posted a new “let’s raise everyone’s spirit” poster. On it is a classic pie chart with the legend, “ONLY 7%!” It goes on to explain that “You spend only 7% of your week in dialysis. The other 148 hours are yours to do the things you like!” Really. That sounds like something that someone who doesn’t know what dialysis does to a body wrote. Not a national organization responsible for 290,000 dialysis patients. (Source: that company’s website). That 7 percent might account for the time that you are actually having your blood circulate through the machine taking up the 10 square feet next to your chair. Not the time it takes for a nurse to do a pre-dialysis assessment and then physically connect you to the machine by way of two needles about the size and diameter of a Bic pen stuck into your arm. Not the time for a nurse to physically remove you from the machine by withdrawing the Bic pen like needles from your arm, for the bleeding one would expect for two holes the size of Bic pens in your arm to stop bleeding, and then to go through a post-dialysis assessment (all about another hour). Not the time it takes to get to and from the dialysis clinic (roughly another hour for me). Not the time it takes to physically recover from the actual process (in my case 10 to 12 hours).

So if we consider the time to get on dialysis, get off dialysis, go to dialysis, and recover from dialysis I actually have 10 hours a week to do what I like. I like to sleep about 8 hours a night and I like to eat at least 2 meals a day so I’m down to around 33 hours a week I can call my own. Almost a whole day and a half! I wonder if they would notice if I would “edit” their poster at the clinic.

PieChartHD

My revised pie chart

Well now you know who those are who should know better. A government who is more concerned with what to call diseases than what to do with the people who actually have the disease and the people who are supposed to be minimizing the effect of a disease on the body but are clueless about how to minimize the effect of the disease on the person.

Boy I feel bad for the poor soul who I might run in to today and says “Hey, how ya doing?” I might actually tell him.