CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

I had labs last week (my first BK urine in a while, as the last 2 serum tests were negative), and I have 41,200 copies in my urine.  Not bad, considering that I had over 39 million when first diagnosed.

My other labs are great-creatinine of 1.1, BUN normal (it had been in the high 20′s up until the past few months, although BUN isn’t a specifically reliable kidney function indicator) and a stable hemoglobin.

Since I’ve been getting emails and posts here with questions on BK (which I welcome), I’ve decided to start a discussion group on BK Virus at Yahoo.  If you would like to join, the address is http://health.groups.yahoo.com/group/bk_virus/

In other non-kidney news, the ongoing saga of my neuropathy continues (Charcot Marie Tooth).  I was working outside, and my left orthotic cracked.  I heavily depend on my orthotics to be able to walk somewhat normally, although I can go without  them (with increased risk of tripping, and my gait is very tentative).  The Orthotist did a temporary repair, and fitted me for a new one.  Although it took a few trip back for adjustments, my new orthotic is great!  He made it so it covers most of my lower left leg, thus giving me more support.  My left orthotic I say is a “Cadillac” while my right now feels like a “Yugo”.  I plan on replacing that sometime next year (they are almost $700, although insurance covers a good chunk of that).  The new one is on the foot that I had a pressure ulcer previously, and the design is much better at relieving the pressure at the pressure point where the ulcer is, and I’m thus taking a lot less Tylenol now, so that’s good.

For my US readers, Happy Thanksgiving!

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….

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.

Good news. The level of BK virus in my blood is finally undetectable!  it’s been since July that the BK was first detected; I’ve been off CellCept the whole time, and only taking Prograf.

My creatinine is still stable at 1.1, and my Immune Cell Function is right in the ideal range at 222.  My Prograf level dropped from 8.6 on 1/6/10 to 6.7 on 1/20/10.  Not sure why that happened, but it’s still in the desired range.  I have labs in another few weeks, and they’ll check for BK in my blood again, as well as my urine.  It usually shows up first in the urine, so I wouldn’t be surprised if there are detectable levels in the urine, but that will hopefully become undetectable soon as well.

The pressure ulcer on my foot is just about healed.  I had my orthotic adjusted, and the Podiatrist debrided the callus on my foot twice, so I think I can hold off on surgery.  I’ll be going to the Podiatrist on a regular basis, so that should help as well.

My sister is now 9 months post transplant, and has been having a rough time lately.  Her GI system is wreaking havoc on her.  She has lost quite a bit of weight since the Fall due to diarrhea and nausea.  She was hospitalized for a few days, had an endoscopy and colonoscopy, as well as a lot of lab work, but they couldn’t find a cause.  2 weeks ago, she developed jaundice.  It turns out that they found the reason for her jaundice (and hopefully the cause of the diarrhea and nausea); she has sludge in her gall bladder that is most likely causing a slowdown or blockage in her bile duct.  They weren’t able to fully visualize what they needed, as the cysts from her kidneys occluded part of the view of her gall bladder.  But the symptoms certainly are consistent with her symptoms, and fits with her history of rapid weight loss (right after the transplant).  Hopefully, another endoscopy (ERCP) will solve the problem; they can clear out the sludge with with this procedure.

As many of my readers know, I work in a large Pediatric clinic, and we share space with a Family Practice clinic.

Yesterday, one of my Family Practice co-workers asked me to speak to a 70 year old gentleman who has many health problems, who is “considering” getting a fistula for dialysis.  He’s ruled out getting a transplant, although he tells me his Nephrologist is encouraging him to do so.

I say considering, because he’s very down and discouraged over his overall situation.  He tells me that he had a quadruple bypass 2 years ago, and told me he will no longer shoot his shotgun because he’s afraid his sternum will rip open at the surgical site from 2 years ago (it won’t; they wire it shut, and the bones are already healed).  He has vision problems, and nerve damage to his non-dominant arm from the surgery.  His wife of 52 years was with him, and her eyes were red (I assume from crying).

I explained what a fistula is and why he needs one; a catheter is a poor choice for dialysis and only used as a temporary fix or as a last resort.  Of course, I was upbeat about the process,  as I truly believe that he will feel so much better once he starts dialysis (he didn’t say at what point he is at with his kidney failure). Compared to my other surgeries, fistula surgery was not that big a deal, as it didn’t even require general anesthesia for me; I stopped at McDonalds for lunch on the way home from the hospital.

Granted, dialysis is no walk in the park, but it sure beats the alternative.  During my 9 months on dialysis, I saw a wide spectrum of reactions to dialysis, just as there is a spectrum of how people deal with day to day life. For me, dialysis allowed me to feel SO much better, so it helped me greatly (and the transplant had exponentially even more of an effect).

I’ve had my share of medical “speed bumps”, but as you know, I’ve used my attitude and determination to overcome them. I have pain every day from neuropathy (hereditary), but don’t even think about, and rarely take pain meds (unless it gets bad)

But I could tell he’s a long way off from “believing”.   I do think that our talk did help his wife somewhat, and told both of them not to hesitate to contact me if they had any questions or needed to talk.
So for those of you who tend to have a bleak outlook, just remind yourself,  as I always do:  there is always someone worse off than yourself.  If I were this gentleman, I would be thinking of the people who go through life paralyzed, who have terminal cancer, who have mental illness that makes them outcasts in society through no fault of their own…

The key to dealing with chronic illness, enjoyment of day to day living, and survival is to be positive.  It’s an attitude that’s sometimes difficult to maintain at times, but one worth striving for.

Note: I met this gentleman not in the course of work, (I was never involved in his care, as I work in Pediatrics) and am not disclosing his name, so I feel comfortable that I am not breaching confidentiality, and only know the details above based on what he and his wife told me. I wish them both well.