CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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.

I spoke with Kim today, my Transplant Coordinator, and my BK Virus levels have come down!

I just finished a 10 day course of Cipro, due to my BK levels rising (my CellCept has been on “hold” since July(?),  and I’m only on Prograf for now). Cipro is believed to reduce viral replication, so it is being used by some Transplant Centers for BK reactivation. (BK virus is a virus found in 80% of the population, and only “flares up” with immunosuppression)

Last month, my serum (blood) level of BK Virus had increased to 2500.  Now, I’m down to 800 copies of virus, and 226,o00 in my urine.  I haven’t had a urine BK done in several months, and at the time, I was told it was >39 million copies.  The nurse today told me it had been 739 million copies.  Anyway, it’s decreased, and that’s all that matters.  I’m getting another level in a month (blood only, since it’s in the urine first, and then the blood), so hopefully it will go down further.

I must admit that I got a little freaked this week, because I started reading too much.  Keeping it in perspective, most of the articles are on patients who already have Nephropathy (kidney damage) from the virus; as far as I know, I don’t have any damage from it.  I believe it was caught early; thank God that my Transplant Surgeons are compulsive, and screen for it every few months.

My Transplant Coordinator said that any of the treatments are pretty much guess work; some docs feel that the Cipro doesn’t do anything, and some feel it helps.  Apparently,  it worked for me, since this is the first month in the past 3 that the levels went down, and that was significantly (close to 70% reduction of the virus in my blood).

My creatinine remains at 1.2 (my baseline since transplant), and everything else looks good as well.

I had my yearly skin cancer screening with the Dermatologist, and didn’t have to have any moles removed.  She did freak out a little when she saw my foot, though.  My hereditary neuropathy (Charcot Marie Tooth) causes degeneration of the muscles and nerves in my arms and legs.  I wear hard plastic orthotics that keep my foot from dropping, and allow me to walk with confidence.  When I don’t wear them, I’m very tentative with walking, as my foot will drop without me knowing, and I’ll trip and end up on the floor.  Years ago, I fractured the outside bone on my left foot, and there is a protrusion from the healed callous on the bone.  Since my foot tends to have a lot of pressure on the outsides, I have a thick skin callous there on top of the bone callous.  The problem is that I have no sensation in the foot, and am at risk for an ulcer (similar to a diabetic).  She wants me to see the Orthopedic Surgeon to fix this, but after talking to my PCP, I decided I don’t want foot surgery.  So I’ll call the guy who made my orthotics, and see if he can come up with a solution.

Keeping with the “Chronic Positivity” theme of this blog, I want to congratulate a young woman named Tedesha, who will graduate from college this month. I met her at our clinic 7+ years ago, when she came from outside the country to get treated for the first time for a devastating Dermatologic illness called Epidermolysis  Bullosa. She’s blind from the disease, so she deserves a lot of credit for overcoming a lot of adversity.  (I had an update by the staff Dermatologist at my appointment)

Merry Christmas and Happy Holidays!

I had my monthly labs this week, and the level of BK virus in my blood has increased the past 2 times.  It started out at a level of 7200 this summer, reached it’s lowest in September at 961, was 1200 last month, and on Tuesday it is 2500.

The Transplant Nurse called me today, and I’ll start on a 10 day course of Cipro.  Even though Cipro is an antibacterial, and BK is a virus, the Cipro has the effect of inhibiting viral replication (the process of a virus making copies of itself).  I will have both my blood and urine levels checked in 2 weeks again, and hopefully, the level of virus will decrease.

My other labs are good. My creatinine is still 1.2, and my Prograf level is 9.5 (expected range 6-9).  Even though it’s a bit high, it’s acceptable, and they probably are keeping me on the high side, since I’m temporarily off CellCept.

If the Cipro doesn’t work, my guess is that I will then be put on Leflunomide.

The BK isn’t a major problem at this point, as it was caught early, and my kidney function (creatinine) is unchanged. I haven’t had a renal biopsy yet, and am not sure if that’s in my near future; it hasn’t been mentioned.

I’ve managed to survive Swine Flu season without getting the flu.  The only infection I’ve had is a mild cold, and didn’t even get a fever.

I added a new blog to my Blogroll, Because I Can.  It’s the ongoing story of Ashley Baltazar, a 19 year old with Polycystic Kidney Disease who developed a brain aneurysm near her brain stem. It’s written by Lori Schneider, a features editor for a local community newspaper.  Lori is chronicling Ashley’s long journey through this devastating struggle via the blog, and she is also in the process of writing a book about Ashley.

For those who aren’t aware of the various complications with PKD, brain aneurysm is one of them.  They are usually familial and occur in up to 10% of PKD patients.  Other issues include diverticulosis, kidney stones, hypertension, abnormal heart valves, and liver and pancreatic cysts.

I had my quarterly appointments with the Transplant Surgeon and Transplant Nephrologist this past week.

The Surgeon was pleased overall.  My creatinine is rock stable at 1.1, my hemoglobin, although still low (I don’t think it will ever be normal), is up from 12.7 to 13.5, and my Prograf level is at 9.5 (still on the high side, but lower than last month’s 9.9).

He also noticed my dialysis fistula, as it’s quite huge.  The other Transplant Surgeon is the one who “specializes” in these, and told me that as long as it isn’t bothering me, he wouldn’t do anything with it, as I asked to keep it for as long as I could.  Not because I plan on going back on dialysis, but because I use it to draw my own blood each month, as the veins in the other arm are crappy. When I do get it “tied off” (it is created by joining an artery and a vein side by side; the arterial pressure enlargens the vein, allowing a large needle to be used for dialysis), I will need to have the vein removed.

The only downside in my labs is the level of BK virus in my blood.  It rose from the 900 level to 1200 this month.  Still not bad, and like anything, there could be fluctuations from time to time.  In conjunction with that, my ICF (Immune Cell Function) is up to expected range of 250.  3 months ago it was 112, which is low, and indicates over-suppression (which allows opportunistic infections such as BK virus to potentially worsen).  Labs again next month; we’ll see than.

The appointment with the Transplant Nephrologist was just a “hi, how are you doing, everything looks good,  see you in 3 months” visit. (although we did chat about non-medical things)

I’ve made the decision to get the Swine Flu vaccine.   I did ask the Transplant Coordinator (RN) what the recommendation is, and the answer she gave me was non-committal.  The bottom line is that whatever we do is our decision.  For me, that’s no problem, but I think they should provide better guidance, as many patients don’t have the knowledge base to make an informed decision on it (I don’t say that demeaningly)

Judging from the phone calls I take at work from worried and confused parents, not only is there an overwhelming amount of information on Swine Flu vaccine, and quite a bit is misinformation.  I do my best to give them the information available, and help them to sort things out.

Back to my decision, if I were to get Swine Flu, it could be more serious due to being immunocompromised, as well as having a chronic neuromuscular disorder.  I have a higher probability of infection as well, given that I work as a nurse and am thus exposed to it more  (although I’m diligent with handwashing and using a mask when needed).

The Swine Flu infection has thus far proven to be fairly benign, based on what I see clinically in our outpatient Pediatric Clinic, but the virus can always mutate, and become more virulent.  Granted, the vaccine wouldn’t be composed of the mutated strain, but there’s a possibility (theoretically)  that it could provide some cross protection.  The Swine Flu virus is comp0sed of 3 different influenzas: swine (pig flu), human, and avian (bird flu). It’s that last one that’s particularly scary.

As I understand it, the Swine Flu vaccine is the same base vaccine as that for Seasonal Flu (there is now a Seasonal Flu vaccine shortage as they had to suspend production to switch over to producing Swine Flu vaccine).  I’ve gotten Seasonal Flu vaccine for years now, and never had a problem. The difference between the 2 is strictly the difference in strains of influenza that it contains. If you do decide to get it and have a chronic illness, be sure to get the injectable vaccine;   the nasal spray vaccine (FluMist) contains a live virus.

Last weekend, I worked a double shift in the hospital; it took 2 days to recover!  Anyway, one of my patients was an infant who had congenital blindness, but also newly diagnosed chronic renal failure.   Amazingly, she survived a potassium level of 9.2!  It was found on a routine screening lab by an eye doctor. When Jackie and I took my sister to the Emergency Department for weakness, she had a potassium of 7.3, and was in complete heart block (the electrical signals to the heart weren’t able to fire right due to the high potassium), and probably almost coded.  They had the external pacer pads attached to her, the code cart in the room, and she had to have emergency dialysis.   That just goes to show how resilient kids can be.