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Overcoming “Chronic Disease Persona”

June 25, 2013 Leave a comment

In a few short weeks, I reach another milestone-my 50th birthday. I’m a firm believer that age is just a number. I’ve seen people younger than me who look like they are older, and elderly people who look much younger than their age.

That belief hasn’t been so firm over the past month.

I’ve had hereditary neuropathy (Charcot Marie Tooth or CMT) all of my life, but it wasn’t until around 1996 that I found out about my PKD (Polycystic Kidney Disease).  Around 2003, my kidney function went below 60% (the magic cutoff for Stage III CKD, or Chronic Kidney Disease).  It was probably at that point that I started with, as I call it, the “Chronic Disease Persona”.

Having been a nurse for 24 years, I’ve seen a wide spectrum of how people react to their chronic illness.  This includes denial, anger, acceptance, and the other extreme of letting it consume their life either to the point of becoming so fixated that they try whatever they can to fix it, or they become depressed and hopeless.  For me, I was more towards the acceptance part of the spectrum, with a brief period of looking for fixes that just aren’t there.

I’m a very analytical person; my mind works constantly to figure out specific problems (not the math type either), and come up with plans and solutions.  I’ve been through a fair amount since 2005, when my GFR hit the magic 20%; you know, the time they tell you that you need a dialysis fistula, and “let’s get you evaluated for the transplant list”.  In August 2005, I had surgery to “create” my dialysis fistula, and less than a month later, emergency brain surgery for a subdural hematoma, followed several days later with seizures, and a hospitalization.  Since then, I’ve had my transplant, major surgery on both feet to “reconstruct them” (by far the most painful of the 8 surgeries, but worth it), and several other “speed bumps” along the way.

It probably wasn’t until around 2005 that my “Chronic Disease Persona” was at full bore.   But it took my upcoming birthday to realize that the birthday isn’t what is affecting me.  It’s the fact that I have been looking at myself as someone who has a lot of medical issues.  And that just isn’t me. I try to live the phrase “it is what it is”, and I think I have been doing that fairly well.  Overall, I’ve done my best not to let my illnesses consume my life, but ironically, they’ve been doing that lately, even though I’m in MUCH better shape now than in 2005!  So with that realization, I’ve decided it’s time to drop the CDP and think of myself as normal (although that’s a relative term).  Back to enjoying life-playing practical jokes at work (which I was famous for), laughing more, enjoying family and friends once again.

It’s easy to slip into CDP.  Those of us with chronic illnesses have more contact with the healthcare system; labs, doctor visits, procedures, tests, none of which we really have any control over. But it’s how we react to all of this that really matters.  Although we may do our best to deal with it, I think that without realizing it, it affects us.

Now that I have realized this, I’ve decided to return to how I was (at least mentally/emotionally) before the rollercoaster ride began in 2005. I’ve had fixed what needed to be fixed, and there are FINALLY no upcoming surgeries on the horizon.

Under the guise of the “crisis” of turning 50, I had my ear repierced this past weekend.  I had it pierced back in the mid 90′s, and kept the earring in until around 2005, when a lot of this started.  So for me, it’s really symbolic-it’s my way of becoming “normal” again.  My initial thought on doing it was that I was turning 50 soon, and was a way of fighting this.  But now that I think of it, I really think it’s more of a fight against how I was living, thinking of myself as a “chronic”.

So take some time to think about how YOU are dealing with your chronic disease.  Make changes; it’s easy to get “stuck” in all that we must deal with.  Small changes can make a big difference.

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Slip up

May 31, 2013 Leave a comment

“Chronic disease with a positive attitude”.  While I came up with that on my own, there is a definite basis for it.

In the 15 years and 8 months of MY life that my mother was alive, that is how she lived. I never knew my mother to be healthy.  She walked in to my Middle School band concert using a cane (she was in her early 30’s at the time), it was not unusual for her to spend a month at a time in the hospital, and she’d be nauseated and tired between dialysis treatments up until it was the morning of dialysis, when she would then start the vicious cycle all over after her dialysis treatment.

Lately though, I haven’t exactly been following this example.  The first part of the subtitle is one which I have no control over-“chronic disease”, but the last part, “with a positive attitude”,  I one which I do have a LOT of control.  Without going into too much detail, work and life stressors consumed me, and anxiety and sleeplessness were my way of life for the past few months.  But that has resolved; I’m now able to sleep the entire night, and the anxiety is pretty much gone.  A much needed vacation from my full time job did the trick (amongst other things).  I have tons of vacation time, but I try to keep a “cushion” for any unforeseen health crisis, of which I’ve had several since 2005.  I learned my lesson (we continue to learn until the day we die, I suspect).  With 50 vacation days (which remain after last weeks vacation), I can afford to take more than what I’ve been taking, and taking 4 weeks off to recover from major surgery does NOT count as vacation. I’ve also had some job disappointments lately, but I can attest to the fact that when one door closes, another opens.  It’s happened once, and as of today, will probably be happening again in the very near future.

Getting back to my Mom, she was truly my inspiration.  I didn’t realize that at the time, but I do now. And I’ve tried my best to set the same example for my son, who may some day face some of the hurdles I have faced.

I accept the fact that I’ll never be able to do the physical things I’d like to do, like be able to jog, play baseball, or be able to go up and down steps without holding on to a railing. But that doesn’t mean I can’t do other things.  From the time I was young, I’ve compensated for this by developing my mind, and I think I’ve done a pretty good job at that.

I’m fortunate to have made the career change from teacher to nursing, because over the past 27 years in healthcare (24 as a nurse), I’ve seen a lot worse than I’ve had to deal with, which has given me a unique perspective, something that not all people with a chronic illness have had the opportunity to experience.

The point of all of this is, that in dealing with chronic illness (or even the sudden onset of an acute illness), either as the “patient” or as a family member, it’s important to stay positive, while being realistic.  I firmly believe that in order to maintain a stable state of health, much of the “battle” is to maintain a positive state of mind.  Another point is that there may be things you can’t do, but there are things you CAN do.  Take a chance.  Sure, it’s scary making a major life change-as humans, change is difficult. But don’t look at the negatives; rather, think of the positives.  You’re comfortable in your job, but will you regret it later on if you end up in the same job 20 years from now, when you could have made a potential change for the better?  And finally, the last point is that we all slip from time to time, just as I have done.  But when you do, kick yourself in the butt, and get right back up and keep on going.  I hope this post is helpful to someone.

Categories: Health Tags: ,

Decisions

March 13, 2013 2 comments

Decisions. We all make them from the time we get out of bed until the end of the day when we go to sleep. Which shirt should I wear to work? What are we going to eat for supper? iPhone or Android? Cable or satellite? Do I drive an extra 5 miles to save a penny a gallon on gas?

For those of us with chronic illness, decisions are even more complex and the stakes are higher. I was pondering this on the way home from my 3 doctor appointments today (my mind never seems to stop, which is probably why I need Trazodone to help me sleep).

My first 2 appointments today were with the Transplant Surgeon and Transplant Nephrologist. Everything is going well with my kidney. My creatinine is still rock stable at 1.2, and although I again have BK Virus in my urine after 2 negatives, there were only less than 6000 copies in my last urine specimen 2 weeks ago, far below the 2 million copies that my Transplant Surgeon said is the level that he would be “worried” about. It was my last appointment, with the Neuromuscular Neurologist, that got me thinking about the topic of decisions.

As I posted last Spring, I was on Leflunomide, which was used to keep the BK Virus at bay. Not an FDA approved use of the drug, but then again, there IS no standard treatment for BKV. I agreed with the decision by the Surgeon to start Leflumonide. But when my hands were so weak and shaky that I couldn’t get a key into the door, it dawned on me that something was terribly wrong. I figured out that it was not progression of my neuropathy (Charcot Marie Tooth), but rather, was the Leflunomide ravaging my peripheral nerves (and yes, ravaging is an appropriate term). At the time, I phoned my Transplant Coordinator, and was told to stay on Leflunomide, and to see a Neurologist. The referral was made, but 2 months later, I still hadn’t even been contacted about an appointment. As the neurotoxicity worsened, I stopped taking the Leflunomide, and contacted the Transplant Department. The Transplant Coordinator covering for my regular Transplant Coordinator spoke with the doctor, and called me back. When I told her that I stopped the Leflunomide, she asked me if I wanted to lose my kidney. Sheesh, another decision. My first reaction was that she had a helluva lot of nerve putting it that way (I still think that), and being that she is not living with the effects of the med, it wasn’t too professional of her to put it in those terms. Putting the cart before the horse, she continued on by telling me that I may have to receive a last ditch treatment, intravenous Cidofovir, to get rid of the BK virus, since I had stopped the Leflunomide. The problem would be that Cidofovir is VERY toxic to kidneys, and would put my transplant at great risk. Damn, another potential decision. When she went back to the doctor, it turns out the plan was watchful waiting. It obviously turned out well, as my kidney is doing just fine.

Just last Fall, I had a reconstruction done on my right foot. Of the 8 surgeries I’ve had in my life, this was by far THE most painful surgery I have ever had. I was literally screaming in pain when I got to my room after the surgery, but today, for the first time in years, I am walking without a hard plastic orthotic bracing my leg, and my foot is straight. That was a good decision, although during the recovery period, it would have been easy to argue that it wasn’t.

Which brings me to my Neurology visit today. The Neurologist and I had a long talk (my first visit with this doctor), and a good portion of that was on the topic of medications. It turns out that the drug I take to suppress my immune system to prevent my body from rejecting my kidney, Tacrolimus, is a known toxin to peripheral nerves. It’s not likely to cause the damage that the the Leflunomide did, as it’s a “lesser” toxin, but over time, it most likely will cause SOME damage. Risk vs benefit. Progressive damage over decades vs dialysis within months if I don’t take the Tacrolimus and reject my kidney. I’ll take the former. It all boils down to risk vs. benefit.

But being a glass half full kind of guy when it comes to health, there are people far worse off than me. Like the 7 year old local girl who recently lost her life to cancer (Neuroblastoma). Or many of my patients who have disease such as heart failure, cirrhosis, or COPD whose diseases will progress to end stage within a matter of months or several years. I see it every day in my job as a Case Manager.

A doctor will oftentimes make decisions for you – here’s a pill that I’m going to prescribe to help with your blood pressure or cholesterol. A GOOD doctor will explain the risks and the benefits and then ask for your input and decision. Life is full of risks. Too many people today are under the illusion that risks were something we face “in the old day”. Surely, with all of the advancements in science, we shouldn’t have to take risks…. Sorry to burst those people’s bubble, but that’s not the way it works. In fact, with advancements come even MORE risks and more complex decisions. Science and medicine can fix a blockage in the arteries of your heart, and you’ll live longer, as long as you follow the Cardiologist’s instructions. But as we live longer, there is an increased risk that other problems will pop up. And this leads to more decisions.

Unless you are a child, you’ve probably made a decision in the past which you have come to regret. Last year, I had surgery to “tie off” my dialysis fistula. I was told that I would get inflammation in the vein of my upper arm, and it would become red and painful. It did, but when I had a fever of 102, along with the fact that my immune system is suppressed, I made the decision to seek treatment in the Emergency Department (it was a weekend). The doctor decided to admit me to the hospital, and the pharmacist recommended a specific antibiotic. The nurse that was working was a friend of mine, and looked a little nervous when she brought the antibiotic in. It was Vancomycin, which is known for it’s potential to cause kidney damage. Not only that, but the dose was very high-3 grams, followed by 1,750 mg (1.75 grams) every 12 hours after that. I knew it was a high dose, but the facts were that I had a potentially life-threatening infection. Do I risk not treating that and saving my kidney, or risk my kidney to decrease the risk of death or potential problems of an untreated infection? I chose to get the antibiotic, and ended up with Acute Renal Failure from both the med and dehydration. Did I make the right decision? Well, probably not, because they could have used a lower dose or a different antibiotic, but in the end, everything turned out ok, other than the fact that I was in the hospital a few extra days. Hindsight is 20/20. I learned from that one…

Just yesterday, I spoke with the adult child of one of my patients who has had a steady decline in her health over the past year. Her chronic diseases have been well managed up until recently, prolonging both her life and QUALITY of life, but recently, she’s had one problem after another. She made the decision to not get out of bed yesterday, and to not go for her endoscopy today because she has “given up”. She’s not tolerating the medicines that for so long have kept her illnesses at bay; they “come right back up”, probably due to a newly diagnosed disease that may be a result of one of the medicines used to fix an abnormal heart rhythm. Her decision is probably due to her thinking that things just aren’t going to get better no matter what she does, and she’s probably tired of all of the appointments, procedures, and drugs she has to take just to stay alive, and yet still live with her health declining. It’s her decision, and we’ll respect that.

I guess the point of all of this is that if you are faced with a decision, get all of the information you can so that you can make an INFORMED decision, consider risk vs benefit, and don’t beat yourself up when you make a wrong decision.

 

It’s always darkest before the dawn

September 11, 2009 5 comments

My wife Jackie and I were talking about the past 10 years and what has happened to her career-wise.

We met in a Psychiatric Hospital (we worked there), and at the time, she had an undergrad degree in Psychology, and was completing a graduate degree in Elementary Education.  She completed it, but in our area, teaching jobs are difficult to obtain based on one’s merits and abilities.  If you are willing to pay a bribe, or are politically “connected”, it’s possible to get a job, but otherwise, it’s not likely to get a full time position.

We got married, eventually moved to our current home, and she got a position as a Mobile Therapist and then as a counselor working with children.  That job led to another position as a quasi-Social Worker in our school district.  After 8 years, the school cancelled the contract of her employer, in order to hire more guidance counselors to do the work she and her co-workers had done. As an aside, and keeping with the rampant nepotism of the area, the guidance counselors were all in one way or another related to school district administrators, and costing the district much more than the contract they cancelled.

From there, she began substitute teaching.  The work wasn’t steady, and it was far from the ideal job, but she did what she had to, in hopes of somehow getting a full time teaching job.

She did this for 2 years, and then landed a job in the district teaching Alternative Education.  For those unfamiliar with this, Alternative Ed is a fancy name for a classroom used to place students that were simply unmanageable in a regular classroom.  She was experienced enough to handle this well, as she had worked with these types of students at the Psych Hospital we worked at.  Of course, while the “contracted” teachers received full pay and benefits, she was hired without a contract, and at a daily rate that was slightly higher than that of a contracted teacher, and didn’t receive any benefits. On top of that, the classroom was in a trailer, and the administrators had the attitude “out of sight, out of mind”.

It wasn’t the safest job, as the students were sometimes physically aggressive. She was subpoened to court twice because of arrests of her students related to things they did in the classroom that ended up in charges, and the school district wasn’t even going to pay her for the court appearances.

After 3 years, the district pulled another fast one, changed the job description in order to hire someone who apparently had “connections” (she lasted a year), and she was once again unemployed.

After 2 job losses within 5 years, she was very disheartened.  In addition to this, she was also dealing with me going through my kidney failure, dialysis, and eventual transplant.  I’m sure my readers who have experienced this with themselves or a family member can fully appreciate this stress.  But she was fortunate to get a summer job for a private provider of Mental Health and Special Education services, and that lead to a position as an assistant in an autism classroom (it was a position above an aide but below a teacher).  That was a year ago, and late last Fall, a teaching position opened.  She doesn’t have Special Education certification, but her supervisor hired her with the understanding that she would get certification.

So, in January, she started graduate classes to get her Special Ed certification, and was hired for the middle school Emotional Support class.

The certification will only require 6 classes (since she already has a M.S. in Education), and she’ll be certified at the beginning of the 2010-11 school year.

Now, she’s working at a private school, she’ll have her Special Ed certification at this time next year, and the salary she is making is the same as a teaching job in the school district that axed her job twice.

We were talking about this last night, and in retrospect, the best thing that happened to her was losing her job.  She persisted, and ended up landing a job that she loves.

The lesson here is the title of this post; it’s always darkest before the dawn.

Remembering back to when I was first diagnosed with Polycystic Kidney Disease, I experienced similar despair to what  Jackie did when she lost her jobs.  Based on what I saw my mother go through 30 years ago when she was on dialysis, my mood at the time was doom and gloom.  My mom was on dialysis for 3-1/2 years, had a very rough time throughout those years, and died of peritonitis related to surgery to remove her spleen as well as her kidneys (from what I can gather, the splenectomy was due to a problem with aplastic anemia, and the kidney removal was to prepare her for an eventual kidney transplant).  In addition, dialysis wasn’t nearly as advanced as today, and she would be in bed sick with nausea the day after dialysis, and “perk up” right before the next treatment.  This was probably due to the fact that back then, they only used an “acid bath” with dialysis treatments, causing acidosis; today, modern dialysis uses an acid and a base bath, which does away with this problem.

And yet as my kidney failure progressed, I kept on going, continued working full time even through dialysis, and although I had some rough periods, I persisted as well.  I put off dialysis until I had a kidney cyst rupture, causing my BUN to shoot up to 118, and was forced to start dialysis at this point.  My BUN was 80-90 for about a year prior to dialysis, and my GFR (percentage of kidney function) during that time was 8-10%.

And here I am today, living life with a kidney transplant, and having to remind myself that I actually had a transplant.  The reason I say this is that today, I feel 10 years younger than I did at the point I went on dialysis. When I was going through all of this, I was fortunate enough to be able to block out my initial apprehensions, and today, I’m thankful for treatment I received that allowed me to do so.

I probably will have more speed bumps along the way, but I’ve handled those that were thrown in front of me, and will likely be able to drive over those as I’ve done in the past.

Some readers of this blog are probably newly diagnosed with kidney disease, some are facing dialysis, some have chosen to remain on dialysis rather than transplant, some are awaiting a transplant, and others have gone through a transplant.  In my opinion, attitude and persistance can overcome a lot of what we have thrown at us, and I hope that for all of those that are in a position of facing challenges, that they do their best to look at the good, and do your best to overcome the bad.

Transplant Day 61, Neutropenia

July 3, 2008 2 comments

I’ve been fairly busy this week, with going back to work, finishing some odds and ends, etc., so I haven’t been updating my “Daily Vital Signs” page. I did do that today. My BP has been decent, weight is stable, and no fever. That last one is extremely important, as my blood work yesterday showed Neutropenia (my ANC is 0.88, which would indicate moderate Neutropenia).

I did speak to the Transplant Nurse, and the surgeon is decreasing my Valcyte to 450 mg once a day (it had been twice a day). It will take a little while for my white count to rebound, but if it doesn’t, they will probably start me on Neupogen.

I feel great, except last night, the fact that I’m now back to work full-time apparently caught up to me, because I was asleep by 8pm, and didn’t get up until 6 am today (except for some bathroom breaks).

Another thing I’m not used to is that I make about 4 trips to the bathroom while at work. Of course, I hardly ever used the work bathroom when I was on dialysis.

I can tell a BIG difference in my brain function since returning. I’m no longer “clouded” mentally. Prior to surgery, it was definitely noticeable, and made me frustrated.  Now, I can think so much more clearly.

The “theme of the week” for phone calls seemed to be MRSA, which is Staph bacteria that are resistant to certain medications. I must have had at least 1-2 calls on this each day.  Today, I spoke with the mother of an infant who had a cellulitis and abcess of the buttock from MRSA, and was hospitalized 2 months ago for it. Today, they are out of state, and his leg has a lesion exactly as before, but not yet as bad. So, he earned himself a visit to an out-of-state Emergency Department.

We also had a child admitted to ICU today with a heart rate of 270 and symptomatic. She has SVT. Although we have several admissions to the hospital each week, rarely is it to the PICU. Once they get her heart rate down, I’m sure that she’ll do OK.

I did post on MyKidney about Informed Consent with Transplants. Check it out if you have a minute.

Happy Fourth of July everyone!

Transplant Day 50, Random Ramblings

June 22, 2008 8 comments

Hard to believe, but it’s been 7 weeks since my transplant. I never would have even dreamed I would be feeling this well at this point. Some people still have pain at the transplant site for months after, but I can’t even feel that the kidney is there (although I can see the protrusion a little). I’m finally almost fitting into the pants I wore prior to transplant, so the swelling has noticeably gone down.

When it comes to pizza, this guy is clueless. He’s obviously never been to Old Forge.

Speaking of Old Forge pizza, we went to Revello’s last night. Yum!

Not that we do it often, but when we go out for steak, our favorite chain restaurant for that is Texas Roadhouse. The next time we go, I’ll be sure not to send my steak back…

If actions are truly louder than words, then Al Gore has proven that man-made global warming is a bunch of bunk.  His home’s energy use has increased 10% in the last year. Of course, there is ALWAYS an excuse when the hypocrisy of these nanny-staters is brought to light. The response is that he uses “GREEN” power, so that’s OK. But doesn’t he say that we all should cut down our energy use? The average US home uses 11,400 kWh per year, yet his abode uses an average of 17,768 kWh per MONTH. Hey, I don’t care how much he uses, except for the fact that he expects everyone but HIMSELF to decrease their energy usage. Since he is using so much energy, maybe a new nuke plant in his neighborhood is in order; after all, nuclear energy is carbonless, so it’s GREEN energy…

Transplant Day 48, Labs

June 20, 2008 2 comments

I’m doing well this week. It’s killing me that it’s so nice outside, yet I can’t do any yard work (due to mold spores in the soil).  Yesterday, though, I did trim some branches from the tree in our front yard with Kevin’s help.

I got my labs back late yesterday, but I didn’t post until I heard back from the nurse today regarding my Prograf (FK-506) level.  My labs continue to be stable. My Prograf is up to 7.1 (from 5.1 last week; I increased my dose by 1 mg daily). I thought they wanted it up to 8-10, but they are OK with the 7.1. My creatinine is still down to 1.2 (awesome!), my glucose was low at 63, but I hadn’t eaten prior to my labs, and my calcium is up to 9 (I’m now taking Citrical). Speaking of which, my GI/Bariatric doc advises Calcium Citrate over Calcium Carbonate, as it’s more easily absorbed. WonderLabs has decent pricing on Calcium Citrate in various doses and combinations with other vitamins/minerals.

As for my blood count, it’s stable. My white count is still predictably low, my hemoglobin and hematocrit are the same. I’m amazed that with a hemoglobin of 9.5 that I’m not tired. That says a lot for how tired I was from the kidney failure.

When I messaged the nurse yesterday to get my labs, I also asked about my PPD. That’s a shot they do to screen for Tuberculosis. I get one yearly for both my full-time and weekend nursing jobs. The weekend employer is particularly adamant about having this done on time (and rightfully so). Anyway, I wanted to know if I could get a PPD, or if they could use the x-ray done after my IV line was placed in my neck prior to surgery.

The response from the nurse?  “I will check with the docs and get back to you. We do not have many patients as anal as you! ”   I’ll take that as a compliment!

I’ve had several interesting search engine queries that lead to my blog; looks like it’s soon time for another Searches That Pointed To My Blog  post.

For those that want to email me, here is my address (it’s a graphic rather than text so that I can avoid bots snagging my address):