CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

Good news on both fronts.

I recently had labs done (although it seems like I am ALWAYS having labs done).  I’m on an every-other month schedule for blood work, but still get monthly checks on the level of BK virus in my urine. My creatinine is rock stable at 1.1, and my BK virus levels went down quite a bit since October; from 9200 to 1200, which is great! Hopefully, I’ll soon be seeing negatives. If/when that happens, it will be interesting to see if they want to put me back on CellCept. I haven’t taken it since July 2009, and there are no signs of rejection in my labs (I’ve never had a biopsy), so I’m hoping they’ll just keep me on “monotherapy” (Tacrolimus/Prograf). My Tacrolimus level is holding steady as well; 7.5 last month and 7.2 in November.

This past week, I went for my final Orthopaedics follow up from my April foot surgery. I’m walking great,and all I wear know on the left is a hard plastic shoe insert. I have to go for a slight adjustment for that, but it’s working out fine. It is a little weird being able for my ankle to bend while I’m walking, but I’m used to that now. I still wear the orthotic on my right, which keeps my foot in a set position, but I’ve been wearing that for 5 years now, so I don’t even notice that.

They did x-rays of my left foot before my appointment this week, and I was able to get a copy of before and after films, which I’ve posted below. (clickable thumbnails)

The doctor was a little disappointed that my left foot isn’t fully corrected, but I’m ecstatic with the result. He was only able to correct the first 2 foot bones, as I had an infected ulcer on the outside of my foot; doing so would have risked infection of the hardware.

I just finished a course of antibiotics.  Several weeks back, the day after the “big” Nor’easter, I was on my way into the house where I work as a nurse, and slipped on some black ice.  I landed on my back, and my elbow came down pretty hard on the road.  I had a superficial laceration of my elbow, and it hurt, but I just cleaned it out and went on my way.  2 weeks later, I went to my doctor, and was diagnosed with cellulitis of the elbow and bursitis.  The pain is finally gone, but it’s still a bit red, so I’ll have to keep an eye on it for now.

I am also going less frequently for transplant follow up; every 4 months, rather than 3, so my next appointment is January. I’m hoping that there won’t be any more repeats next year as I had this past year (unplanned surgery, acute renal failure).

On the work front, I’m switching positions within the same job. Rather than being a “float”, I’ll be working permanently at a clinic near my home.  It will be nice to have a set caseload of patients, rather than covering different offices each week.  I was supposed to also be doing case management in West Virginia (via phone), and even received licensure in that state, but that went by the wayside when I took the new position.  Ironically, I used to be a teacher in West Virginia, in the same area as the setting for the movie “October Sky”.

There is a delicate balance involved with a  kidney transplant, as proven by my recent “medical adventure”.

As my readers know from last month’s post, I recently had foot surgery that involved removing part of the outside bone of my left foot due to infection (along with major reconstruction of my foot).  Having been on antibiotics for close to a month, I developed a yeast superinfection in the deep tissue of my foot.  The Orthopedic Physician’s Assistant consulted with an Infectious Disease physician, and the recommendation was to place me on Fluconazole 200 mg daily for a month.  It turns out that there is a major interaction between that drug and Tacrolimus (Prograf), and I was hospitalized for Acute Renal Failure from Prograf toxicity.  When the 2 drugs are used together, a dose adjustment may need to be made on the Prograf. (after my transplant, I was on Fluconazole 150 mg  once weekly for 4 doses; in this case, a dose adjustment was not necessary)

Everything is returning to normal: my last creatinine was 1.3 (my baseline is 1.1-1.2), my Prograf level is 5.2 on 2 mg/2 mg (previous dose 3 mg/2 mg), and the BK virus is once again out of my bloodstream and a level of 11,000 copies in my urine (it had been 912,000 copies in my urine and 1,000 copies in my blood last month when I was hospitalized).  The only physical residual effect that may be related to the Prograf toxicity is that I’m still having burning and numbness in my hands (although that could also be from my peripheral neuropathy, Charcot-Marie-Tooth disease).

There are some lessons to be learned from what happened to me.

First, TRUST NO ONE.  I had emailed my transplant coordinator the day I was placed on Fluconazole, and she replied back that she would tell the surgeon.  She did not do that.  The PA who had prescribed the Fluconazole apparently failed to heed the interaction warning, and despite me asking, also had not touched base with the transplant surgeon before prescribing it.

Second, BE VIGILANT WITH ALL OF YOUR CARE.  I failed to look up Fluconazole before taking it.  And while it’s up to the healthcare professionals involved in our care to ensure that these things don’t happen, mistakes and oversights can and do occur.

Third, USE ONE PHARMACY.  I made the mistake of having the Fluconazole filled at a pharmacy closer to my home.  This pharmacy had no record of me being on Prograf, and thus had no reason to warn the doctor  of the interaction.  Had I driven another 15 minutes to my regular pharmacy, the interaction may have been caught.

And while there have been many advancements in the field of kidney transplants, there is, and always will be, the possibility of error.

We all must take ownership of what is done to maintain our transplant if we want to keep our kidney healthy and functional.

I had my quarterly appointments this week with the Transplant Surgeon and Transplant Nephrologist; everything is stable (except I’m up a few pounds since my last visit; have to work on that).
The BK virus level in my urine plummetted down to 11,300 from last month. Yea!
I start a new job on Monday (1/31-ironically, my very first job ever (as a paper carrier), was started on this date in 1974.  I will be an RN Case Manager for an HMO doing disease management over the telephone.  After almost 22 years in Pediatrics, I’m switching to the “adult world”.  Some might ask if I’ll be able to do well with adults, as all of my experience is with children.  However, I have 17 years experience in phone triage; those who take this job may have experience working with the elderly, but no telephone experience, so I consider myself even with them.
My last day (obviously) was Friday, and it was bitter-sweet.  It’s really tough leaving my co-workers (office staff, nurses, and docs), and to be honest, I’ve had pangs of guilt, feeling as though I am abandoning my coworkers.  But to be honest, my Charcot Marie Tooth (peripheral neuropathy) is gradually worsening, leading to more of a loss of fine motor skills.  Being that I sometimes have to draw blood, start IV’s, and other tasks, I felt it was time to look for a position where I don’t have to depend on my physical skills. I rationilzed my decision when explaing to coworkers that it was time to move on, and the new job has more opportunities for advancement (which it does), but when I really thought hard about it, it’s more the fact that I need to depend more on my brain, as my phsical abilities are decompensating (although I was concerned that my job would eventually be eliminated, and still believe that it’s a possibility, although low).
I’ve triaged patients on the phone for almost 17 years now, and I feel that is my forte; this job depends highly on telephone assessment skills; thus, it is a perfect fit for me at this point in my career.  Anyway, it was tough saying “goodbye” to all of my co-workers (even though I’ll be employed by a different “arm” of the health system I work for now).  And there were several times when I almost became “emotional” (i.e. tears) on my last day.  However, I feel that I made the right decision.
My coworkers overwhelmed me on the day before my last day (the “penultimate” day). They had a very nice congratulations/good bye lunch for me.  When I entered the room, there was a single gift in the middle of the table (I honestly didn’t expect a gift).  When I picked it up, I thought it was a large book. When I opened it, it turned out to be a 32 GB 3G iPad!  Needless to say, I was beyond shocked.  On the back, was a very nice inscription, and upon reading it,  I had to hold back tears. I take my work seriously, and try to do the best I can, and it was apparent that I was appreciated more than I ever could imagine.

My sister is doing better, but has been through a lot.  She is coming up on her 1st anniversary of getting her kidney (April 30), but has had problems afterwards.  Her kidney is working well, but she’s had diarrhea to the point of becoming malnourished.  After the “million dollar workup”, she was found to have gall stones and sludge in her bile duct.  They did an ERCP (a scope inserted down past the stomach and into the bile duct of the gall bladder), and removed the stones and sucked out the “sludge”.  Unfortunately, it didn’t help her appetite, and she worsened.  She ended up in the hospital last week for 3 days with dehydration, they changed her meds around, and she now feels betterher appetite is picking up.  They probably will eventually take the gall bladder out, but with her nutritional status, it’s too dangerous now, as she wouldn’t heal properly.

For those who post comments, keep them coming. I’m also a little late approving them, but I did just approve those that were pending.

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.

My sister is still in the rehab hospital.  Her face is moderately swollen (from the excess fluids in her tissues), but she is still not drinking enough, which is EXTREMELY important with a transplant.  Her kidney is working well, but she’s still having difficulty walking.

Due to not drinking well, she bought herself another NG feeding tube, and they are giving her water boluses for her to keep hydrated.  She said she would “try” to drink,  but I told her that she HAD to drink, and that if she didn’t, she’d end up with another surgery to put a G tube in (a tube placed in the stomach, which is more long-term than a NG tube).

Her hemoglobin is very low (7-8), so she’s getting 2 units of blood right now.  The anemia could be from the meds she’s on, and it could also explain her weakness.   Her breathing isn’t great; I counted her respiratory rate at 36 when we went to see her. Unfortunately, there’s nothing they can do for that.

I had a nice relaxing weekend.  I worked OT in the hospital on Friday night shift; I enjoy working there. It’s a nice change from working in the clinic.

Saturday, the 3 of us went to Knoebel’s for supper.  It was nice, but I’m glad we live close, as I w0uldn’t want to spend an entire day there.  We’re going back next month for Geisinger’s Transplant Picnic.

Sunday was a do-nothing day, and yesterday, we had a cook out for Memorial Day.

I did have an injury on Sunday.  I was walking out of the bakery with the cake for yesterday, didn’t see that there was a step, and went down on my knee.  It’s swollen, bruised (I’m on aspirin daily), and painful, but I’ll live.

We did see a great movie this weekend: Taken.  I highly recommend it if you like action/suspense movies.

Today, Kevin got home from school, and found foil on the floor, and the cake that was under it on the counter gone.  It most likely is travelling through our GoldenDoodle’s intestines by now.

My sister’s kidney is still “sleepy”, her urine output is down, and yesterday they gave her a boatload of IV Lasix yesterday (160 mg). I spoke with the nurse, and she told me that the kidney is perfusing well with blood (that’s a good thing), but it just has to kick in to filter the fluids and toxins.

She sounded a little better today.  She was up walking 3 times yesterday, but is weak. The Physical Therapist took her for a walk today, and she apparently will be discharged to the Rehab hospital until she’s able to walk better (her Charcot Marie Tooth causes muscle shrinkage, and I think it may take her a little bit to regain her muscle strength).

She’s still not eating very well, nor drinking, but does have IV fluids running, as she’s still nauseated and doesn’t have an appetite.

BTW, I’m using “she” rather than her name for privacy.

My sister was in the Emergency Department again today, but this visit was not an emergency. She got a call for a kidney, and was told to go to the ED.

As it turns out, the kidney was a no-go. The potential donor was a 50 year old with a head injury, but the surgeons apparently would not take the kidney, as it wasn’t suitable. 

I know that my sister is disappointed, but a transplant is not something to rush in to (I know, easy for me to say, but it’s true). It’s worth waiting for an optimal kidney, not only to prevent problems, but also, if you are transplanted once and it fails, it’s harder to match subsequent kidneys for transplant due to antibodies from the first transplant. Better to get a good one initially so that it will hopefully last longer.

She has been on the list for almost 3 years now, and has had several calls, but on a positive note, the calls are getting closer, and she was “1st in line” for this kidney. So it should be soon…

As for me, I had my monthly labs this week, and my creatinine is 1.1, which is the lowest ever since transplant.  My glucose was high, but it was non-fasting, so I’m not too worried about that yet.  My blood counts are good, although my lymphocytes are high-probably because of the bronchitis I’ve had this week (increased lymphs indicates a viral infection).

The only other issue is that I have what appears to be a blister on the top of my 2nd toe.  I had my doctor eyeball it, and he just told me to soak it in Epsom salts. I have to be careful due to my neuropathy; I have minimal sensation in my feet, along with decreased sensation to pain.  I held off on walking the past 2 days, and it is improving.

Have a great weekend. The weather here will be picture-perfect sunny and mid 50′s.

It’s been a while since I posted, and I didn’t get a chance to update my last post. My sister is fine. She was admitted overnight after dialysis in the Emergency Dept, and then had dialysis the next day. The potassium problem was dietary.

I had my biannual check up with my PCP on Thursday (the “easy one”, where I got to keep my clothes on ) . Other than a need to lose 12 lbs, everything is GREAT.  I’ve had a cold for the past 2-3 weeks off and on, and the past 2 days, I think I have touch of bronchitis. Most cases of bronchitis are viral, so I’ll just tough it out.

Today is the first Saturday morning in a LONG time that I didn’t have to go to work. It was interesting seeing how crowded the hardware store and Dunkin Donuts drive thru were at 11am today…

Last Sunday was my last day with the nursing agency that I’ve been working for. I’ve been with this particular case for over 6 years, and a prior case for 5 years. Yes, in addition to my full time job, I worked weekends for 11 years now, and it’s nice to take a break from that. Besides, the more money I make now, the more the government will confiscate from me…

I’ve been busy at my full-time job lately; we’ve been seeing a lot of sick children lately (in addition to the “well children” we always see). In addition, it’s that time of year when the school-avoiders have used up their absences, and are required by state law to have a doctor’s excuse for any further absences. It’s the same people calling for these all of the time. The Family Practice dept that we share space with have their drug seekers, we have our school excuse seekers…

What a difference a year makes. Last year at this time, Jackie was an Alternative Ed teacher in the local public school. Her pay was a little more than what she would make as a substitute, she had no benefits, no paid days off. Now, she is teaching Special Ed (Middle School Emotional Support) at a private school which specializes in Special Education, she has benefits, she gets paid time off, a paycheck in the summer, and was just given Employee of the Month! At the public school, they stuck her in a classroom in the basement and gave her no support whatsoever. Out of sight, out of mind.  She is much happier in her current job.

Digger decided to find himself a new toy Thursday night. We thought he was prancing around the back yard with one of the toys we bought him, but when he wouldn’t come in, I went out to check: he killed an adult rabbit, and was proudly running around the back yard with it in his mouth. We had a tough time getting him to put it down, but Jackie threatened him with a walking stick, he dropped it, and I tossed it over the fence into the tree line behind our back yard.

I’m originally from Luzerne County in Pennsylvania.  Politically, it’s always been a VERY corrupt county, but the Feds are on an arresting spree lately, including 2 judges, one of whom is an unindicted co-conspirator in a Federal cocaine case.  My cousin, an attorney in Luzerne County, who is in private practice and works for Children and Youth part time, is running for one of the open positions of Judge. For those of you living in Luzerne County, please consider voting for her. Although I’m biased, she is honest, and would do a great job (no risk of following in the footsteps of the admitted felons Ciavarella and Conahan). Here website is here.

Nothing new on the kidney transplant/health front.

I did finally get back to walking every day. Between recovering from a month of sickness before and after the holidays, and the extremely cold weather, I stopped walking. But now, I’ve walked every day at work for the past week, and yesterday, I’m back to the distance I was walking last fall before getting sick. I feel the difference (for the better) already.

The highlight of the week is that my wife Jackie got a teaching job! She had been teaching in the local school district for the past 3 years, and lost her job at the end of the last school year (bumped for a political appointee, as her position was non-contract, and there is a lot of corruption in PA with teaching positions). She started working at a private school for special needs students. She worked in a classroom with an autistic adolescent as a professional assistant (for lack of a better term), and started back to school for her Special Ed. certification.  One of the teachers just left his position in the middle school-aged Emotional Support classroom, and she was hired yesterday for the job. It’s been a long time coming, and we are all thrilled.

Digger, our GoldenDoodle, has decided that he likes meat. He never was that interested in food before; he ate when he needed to. Last week, Kevin cooked sausage for supper on the night Jackie had class. I wrapped the leftovers in foil, as Kevin wanted to take them to his friend for him to try. Well, we forgot to take them, and when we got home, there was nothing but foil on the floor.

Today, Kevin came home from school to find that Digger had reached up on the counter, and got a hold of Kevin’s almost full 1 lb bag of Sweet and Spicy (VERY spicy) beef jerky. Needless to say, the only thing left was the empty bag (I’m sure Kelsea was right there eating as well). No adverse GI effects yet.

Digger is mischievous, but he’s the type of dog who is easy to forgive.  He’s actually quite smart,and some of the things he does are funny.

Suprisingly, the intestinal virus that I had back in December seems to STILL be making the rounds. At work, we are also starting to see influenza, and I think I heard on the local news that a strain of influenza that closed down a school north of here was different than the strains in the vaccine.

This is the first year in about 18 years that I haven’t gotten a flu shot; the Transplant Surgeons’ policy is that I need to be at least 1 year out from my surgery. I’m not at all worried, as there are far worse infections with the immunosuppression than flu, although I’m more likely to get influenza than, say, pneumocystiis or a fungal infection.