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”.

The level of BK virus in my urine has gone done considerably since last month-9600 copies in February , and now just 2600 copies!   It will be 2 years in July that BK was first discovered, and at that point, the number of viral copies was greater than 39 MILLION. It’s taken almost 2 years, but there is a light at the end of the tunnel (although once in remission, it can still pop back up).

My other labs aren’t available for me to look at, but I don’t anticipate any major changes.

I once again have a cellulitis in my foot (I had it last month in the foot, extending half way up my lower leg; this time, it’s just the top of my foot).  I have chronic issues with my feet due to the neuropathy, and my PCP thinks I have have an infection under a callus on the side of my foot.  I’ve been on Keflex once again for 2 days now, and will see the Podiatrist on Monday (2 more days).  Hopefully, he’ll be able to get to the bottom of this, so that it doesn’t recur.

Short post this month.  Happy Spring to all of my readers!

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.

I had my labs this week, and although my blood work isn’t yet available to view on MyGeisinger, I received a message that my BK urine PCR is up to 77,500 copies of BK virus from last month’s 41,200 copies.  I’m not too worried about it, as it does sometimes fluctuate, and it’s much better than the >39 million copies when I was first diagnosed with BK. 

My feet are in much better shape than a year ago.  I have the pressure ulcer on my left foot under control, and have a new orthotic on that leg (the other one broke).  I plan on getting a new one for the right as well, as the new one offers better comfort and support.  It’s made of a different material, and is higher up on my lower leg.  It took a few weeks of adjustments and getting used to, but overall it is much better than the one I had. 

I received an email today with a link to a site that looks to be a dialysis activism site.  It contains a link to a database that allows dialysis patients to compare dialysis clinics on 15 key measures, ranging from mortality and hospitalization to transplant rates and infection control. I looked up the dialysis clinic that I went to, and it got very good “grades”. 

Next month I have my quarterly appointments with the Transplant Surgeon and Transplant Nephrologist.  Not much else to report, but when talking about my transplant, boring is good.  Merry Christmas and Happy Holidays!

Busy end of summer, so I missed posting last month. I’ve had 2 straight months of negative BK in my blood, so next month, they will just  check the BK level in my urine.  I’m still on the Leflunomide; not sure how long I’ll be on that.

I had my quarterly appointment with the Transplant Surgeon and Transplant Nephrologist 2 weeks ago, and everything else is fine.

I did discuss the surgery to revise my dialysis fistula, and I decided to not go through with it yet, as it’s not causing any problems; it’s just huge, bumpy, and curvy-I can live with that.

My creatinine is holding stable at 1.1, and my blood counts are fine.  My urine protein and creatinine are still slightly elevated, but the Nephrologist wasn’t at all worried about it.  See the image below.

In other news, I’ve been walking without my AFO’s (ankle foot orthoses),and that’s been rough. I was stepping over something, came down on the forefoot, and my orthotic cracked.  I went to the Orthotist, and he temporarily fixed it, and fitted me for a new one.  The new orthotic won’t be ready until next week or the week after, and being that I’ll be on my feet a lot at work this weekend, I’m not wearing the AFO’s in case the fix doesn’t hold.  I can get by without them, but I’m likely to trip, and without them, my knees are starting to bother me as I don’t have the support of the AFO’s, and thus my knees are in a different position than when I wear them.

We live in a rural area, so we tend to put a lot of miles on our vehicles.  My wife only drives about 3 miles each way to work, but I drive 23 miles each way.  Thus, I tend to keep our vehicles until they die.  My 17 year old Chevy Astro (with 206k miles) finally went to it’s eternal rest, so we just bought a 2008 Chevy TrailBlazer with 18k miles on it.  It’s nice to once again ride in style.  In addition, it has 4 wheel drive, which will be useful when I have to go to work in the snow.

‘Til next month……

I’ve stopped putting “BK Virus” in my blog post titles, as it’s apparently something that’s not going away soon.  The BK is still in my blood; my level went from 1000 viral copies to 1400, despite the Leflunomide. These levels are still low, but I have to wonder if they are doing any damage to my kidney.  I’ve been off CellCept for a year now, but I’m still on Prograf.

Most of my other labs are good:  Creatinine 1.1 and Prograf level 7.  Interestingly, my Prograf levels have been fluctuating.  The last 5 readings (latest to oldest):  7.0, 6.0, 8.7 (first level after starting the generic Tacrolimus), 7.7, and 9.0.  The target range is 6.0-8.0, so they are still in range.

One lab value that may be concerning is my Protein/Creatinine ratio.  Normal range is 0-0.14.  This month it’s 0.2, on 7/13 it was 0.24 (it went down at least from then), on 4/28 it was 0.1, on 11/10/08 it was 0.11, and on 8/12/08 (3 months post-transplant) it was 0.17.  Not sure what to make of it.  Could it be that my hydration status is not as good, given that it’s so hot out? Is there something going on with the kidney? Is the Prograf damaging the kidney? The BK causing damage?  Hopefully it’s my hydration.  My hydration is good when I get my labs done, as I usually have 45 oz of fluid in each morning before 8am, but my urine has been more concentrated overall this summer.  Have to do a better job keeping up with the fluids. Keith, my PCP, told me it’s probably nothing to worry about, and just to drink more.

I had a problem with my foot again.  We were on vacation 3 weeks ago, and the padding in my orthotic wore down, causing the infamous foot to become irritated and calloused.  It’s just now feeling better, but it was quite painful when it happened.

I never cease to be amazed by some people’s perspective.  I was talking to a person 20 years older than me, who’s only problem is a little bit of osteoporosis.  She is on no meds (other than supplements and vitamins), and yet was complaining about her stomach problems, which apparently are self induced (she eats too much dairy).  She went on and on about how terrible it was.  And yet she doesn’t have heart problems, she’s not on any meds, she’s able to walk without any problems, her kidneys work, etc.  Those of us with kidney problems would only wish to have that as our only hurdle  I’m certainly not one to complain; I deal with what I have, and yet what I have is small, in comparison to the child with cancer, the adult with Lou Gehrig’s disease, the baby born premature who’s lungs and eyes are crappy.  It’s all about perspective, people.

I have most of my labs back from last week, and they’re a bit perplexing.  My past 2 monthly serum BK virus levels were negative, yet last week, I had 1,000 copies of virus in my blood. My urine BK virus levels were only 17,000; when I was first diagnosed with BK Virus, I had over 39 million copies in my urine.  Overall, this is good; I just can’t figure out why it is back in my blood.  The only lab that isn’t back is a drug level for Leflunomide, which I’m taking to inhibit the BK virus.

My other labs were great.  Creatinine 1.1, Prograf level 8.7, Hemglobin 13.6.  Also, my BUN was 15; it has been YEARS since it’s been under 20!

I had a big hassle with my labs this month.  Since I draw my own blood (through my dialysis fistula), the phlebotomist in my clinic processes it as far as ordering it in the lab computer system.  I find out from the Transplant Coordinator (RN) the month before which labs are needed, I tell the phlebotomist the day before, and she places the order, as long as there is an order in my chart for that specific lab.  Apparently, one of the orders expired, and she had to call the Transplant Surgeon’s office to find out if that particular lab was needed.  Unfortunately, she gets this information from the secretary, who looks in my chart, and then passes on which labs are needed.  Well, she got it all screwed up, and sent lab slips over for labs I had in April, which weren’t needed.  It turns out, the labs I told the phlebotomist to order were correct.

I ended up emailing the doctor through internal email (I usually email through my chart, as the health system I work for and am also a patient of has an electronic medical record).  I mentioned the “scare” I had before related to wrong labs being ordered, and told him I wanted to avoid it happening again.

I ended up getting an apology from the Transplant Coordinator (I don’t need an apology; I just need the right labs ordered), and I hope that I won’t go through this again.

Back to the Podiatrist in another 2 weeks, as I think I’m getting another pressure ulcer on the outside of my foot.  It’s manageable now, but I don’t want to let it get out of hand.  The new padding in my orthotic is working great, though; the ulcer would probably be noticeably worse without the padding.

Tomorrow, it’s off to the dentist for a root canal.

That’s all for now.

I had my labs 2 weeks ago, and another negative BK level in my blood. Yea!

My creatinine is 1.1, and all of my other labs are stable.  My Prograf level went from 9 in April,  to 7.7 in May. Not worrisome, as the goal is 6-8.  Still on Leflunomide, and they will be checking a Leflunomide level in June.  (Leflunomide has anti-viral properties for BK virus). I will also start getting urine BK virus levels next month, which should be interesting.  When I was diagnosed last July with BK virus, I had >39 MILLION copies of the virus in my urine.  I last had it checked this past winter, and it was down to 229,000 copies.  That major drop was most likely from not taking CellCept, which is notorious for causing the immunosuppression leading to BK virus.

Since my last post, I had to go back to the Podiatrist, and I had another pressure ulcer on my foot.  It was only pinpoint, so I caught it early.  He debrided the callus on my foot, which has helped.  That day, I also went back to Susquehanna Valley Prosthetics and Orthotics (the company that molded my orthotics and whom I HIGHLY recommend), and at the suggestion of the Podiatrist, they added a material called Plastizote to the area of the orthotic that was causing problems with my foot.  It has greatly helped the problem, and I now have minimal to no pain!  I think this is the answer to the problem.

My sister is in the hospital again.  Over the weekend, she had vomiting, severe back pain, and chills.  They don’t know the source of the infection, but were apparently worried that it was either a gall bladder or kidney infection.  She had pain in her right side, which is the side of her transplant, thus the worry of an infection in her transplanted kidney. It’s also possible that she has an infected cyst in one of her native kidneys.  Cyst infections are difficult to diagnose.  The infection is within the cyst, so a urine culture wouldn’t necessarily show an infection.  I probably had a cyst infection prior to my transplant when I was on dialysis, and was on Cipro for almost 2 months.

She did have a nuclear scan today, and the gall bladder apparently is not infected (although she has stones again). Not sure what the plan is, but they are holding off on antibiotics until they know the source of the infection.  Her temp was only 100.2 today, but her white blood cell count is elevated.  She’s had a rough year since her transplant, so I hope they can figure out what is wrong.

I’m back working weekends with the home nursing agency I worked for before. I’m happy with the case I’m on; the family is very nice, and the client is a pleasant little girl.  This case is different, as the client is a family member; the previous case, the clients were adopted.  It makes a big difference.  I’ve been doing home care as a side job for a total of 11 years now, and do enjoy it; it’s a different kind of nursing from my full time job.

Hard to believe it’s been this long, but Saturday was the 21st anniversary of my job as a nurse with my current employer; I started the job right out of nursing school.

Happy Kidney-versary to me; it will be my 2 year anniversary of my transplant on Monday!

I had my quarterly Transplant follow up today with the Surgeon (Dr. Maloo) and Nephrologist (Dr. Schultz).

Dr Maloo was a bit miffed that I hadn’t been treated yet for the BK virus (other than the course of Cipro last Fall).  I’ve been BK + since last July, and have been off CellCept since then.

So, today I start Leflunomide. This is a drug used for Rheumatoid Arthritis, but also has anti-viral properties.  It’s also starting to be used for BK Nephropathy (damage to the kidney from BK virus).  While it’s not know if or how much damage I have from BK, I think that Dr. Maloo is using this since the virus is remaining in my blood, although at a low level (with higher viral levels in the blood, they treat with IV Cidofovir).  For those following my blog that are interested in more detail, the dose is 100 mg for 3 days, then 20 mg daily.  I had a BK level done today, but it’s not back yet from the lab. I also have an ImmuKnow Immune Cell Function pending as well.  This is done in order to get an idea of the level of immunosuppression. Much like a Hemoglobin A1C for diabetics, this test gives an overall idea of my level of immunosuppression over the past few months.  From what I gather, it’s a way for the docs to also monitor those who aren’t compliant with their medication (some will start taking their meds a few days before labs and then stop for awhile).

I was the last appointment of the morning, so Dr. Maloo was sort of rushed.  I discussed my dialysis fistula with him, because lately, it’s gotten much larger, and I get some intermittent pain with it.  At the time of my transplant, I was scheduled to have a balloon fistuloplasty/stenting done, because there are areas of stenosis (narrowing) along the fistula.  This causes other areas behind the stenosis to get larger.  Dr. Maloo was in full agreement that I should keep the fistula, in case I need it in the future; fistulas are usually good for 20-30 years if properly cared for (his colleague wanted to “tie it off” when it became a problem).  Another reason I want to keep it is because I am able to draw my own labs from the fistula.  This is very important, because the veins in the other arm suck, and with getting monthly labs, that will quickly turn into 1 big monthly ordeal.  I’m hoping my kidney lasts my lifetime (or at least until retirement), but there is always the possibility it won’t.  If I had to do dialysis again, there wouldn’t be many more options for another fistula site (other then my thighs), so keeping this is best.  I had asked him to have it fixed, thinking the Interventional Radiologist would balloon and stent (similar to what they do with people whose heart arteries are blocked), but he thought I meant surgery.  He said my idea was ok, but after thinking about it, I’m going to wait until my next appointment in July to discuss my options; surgery to fix it may be better in the long run.  Having it stented in IR would run the risk of an infection at the stent, so I’m leaning more towards surgical repair.

I also had my first appointment with the new dentist today.  I had a filling that fell out and broke part of my tooth, and will probably need a root canal.  That will be done this summer (unless I have problems beforehand) and he also prescribed a prescription toothpaste with a higher concentration of fluoride to use once at night (and use regular toothpaste in the morning).

Despite the BK, everything is going well, and hopefully the Leflunomide with put the BK virus in remission.

For those whose immune systems aren’t suppressed, you probably have BK virus dormant in your kidney as well (it’s a respiratory virus that most get as a child). The difference is that a non-suppressed immune system will keep it dormant.  This is similar to chicken pox-once you have it, it’s dormant in the nerve tracts (reactivation of chicken pox virus is called Shingles).

Labs:

Creatinine         1.1
Prograf            9
PTH                72
Hemoglobin         13.4
Immune Cell Function:     Pending
Serum BK Virus        Pending

I had my monthly labs last week, and overall they were good.

My creatinine is still 1.2, my blood counts are stable (my hemoglobin will never be in the normal range due to my Thalassemia; it’s in the high 12 range), and my Prograf level is 8.2 (right at where the docs want it to be, although at the high end of normal)

The level of BK virus in my blood dropped a bit, from 800 copies to 500 copies. It’s obviously still a concern, as I’ve been off my CellCept since last Summer, and I still have BK virus in my blood and urine, but it’s a low level of virus.  I’ll discuss this with the Transplant Surgeon at my appt later this month, but I’m sure that if they were concerned, they would be more aggressive with this.

Despite the immunosuppression, I am able to stay free of most infections, despite working as a RN in Pediatrics.  It’s not the common infections that are worrisome though, such as colds and stomach viruses, but rather the opportunistic infections like fungal infections or unusual viral infections (such as BK virus).  But I don’t worry about those; whatever happens happens, and I just do my best to avoid the ones I can, and keep on keepin’ on.

The only remotely recurrent problem I have is with my sinuses, and even that isn’t too bad.  I take a nasal steroid daily, and that helps.  However, I end up on antibiotics once or twice a year.  I recently read a report that many sinus infections are of fungal origin, and not bacteria. Unfortunately, I can’t find the link to the article.  When I find the article,  I’ll post it to the comments below.

I have a new online friend (Nancy), who donated one of her kidneys to her father.  She’s a regular reader of my blog, and found me doing a search on BK virus.  Her father just had a kidney biopsy, and they found BK in his kidney.  He’s thankfully doing better; please send out your prayers and/or positive thoughts for him.

BK is becoming a hot topic in the Transplant Community, but not a lot is known about it.  I think we’ll be hearing more about it.  Knowledge is power, and we need to be aware of this issue to be better informed, so that if/when it happens, we can deal with it better.

My foot continues to be a small problem (pain every day), but I’m now able to go for my daily walk.  I feel better doing so, and the benefits of walking outweigh the daily pain.  I still have a small superficial pressure ulcer, but it’s not worsening.  I just have to monitor it, and if it worsens, I’ll be back to the Podiatrist.  Just a speed bump along the way….