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”.

It’s been a busy end of the summer, and I haven’t posted in a while, so here goes.

Everything is going well-uneventful is good.

My BK virus levels have been variable, but overall are low.  The latest is 9200 copies in my urine.  The previous had been 25,700 (August 31), 36,600 (August 3), 80,300 (July 5), and 1100 (May 31).  My last Prograf (Tacrolimus) was 7.5, and creatinine 1.1.  My Acute Renal Failure from May has totally resolved, and hopefully did minimal damage to my kidney.  I’m over 3 years out from my transplant (May 3, 2008) and have yet to have had a biopsy.

I had my quarterly follow up in Transplant clinic at the end of August, and now only have to have labs for blood work every other month; they still check a BK Urine monthly, as they want to keep close tabs on that.  Another plus is that my transplant follow ups will be every 4 months rather than every 3.

My BP is trending slightly higher (I haven’t had any BP meds since I was on dialysis over 3 years ago).  I attribute most of that to stress, as I’ve started a new job in January, and it’s very intense.  Now that my foot is better, I will be able to start exercising (walking), so that should help.  I had my yearly exam with my PCP today, and my weight is 8 lbs less than this time last year, so I’m on the right track with that.

I had an appointment with the Vascular Surgeon back in July, and he recommends that I have my fistula tied off.  Not sure when I’ll do that, but probably will have it done in the upcoming months.  It’s a simple procedure, and the anesthesia will be conscious sedation (no general anesthesia unless they run into a problem).

I’m thrilled with my new Transplant Coordinator (similar to a Case Manager). She is your typical anal retentive RN, and does an excellent job. I have complete faith in her judgement, and she is able to answer my questions (my previous TC oftentimes either didn’t have a clue, or didn’t bother to find out the answers to the questions I had).

I’m thrilled with the repair on my left foot.  I saw an x-ray after the surgery, and have a bunch of hardware, including a 3-4 inch threaded bolt going straight up into my heel, as well as some plates and screws below my 1st and 2nd toes at the metatarsals (foot bones).  With my neuropathy, I have “hammer toes”; these were corrected on the first 2 toes, and they are now straight.  I no longer have to wear an AFO; I just have a solid plastic insert that I wear in my shoe.

I continue to receive messages from people with PKD and/or BK virus, and am happy to answer any questions posted for me.

As for my (fairly new) job, I love it!  I’m a RN Case Manager for a large health insurer dealing in disease management.  In addition to my knowledge base, I’ve also been able to put my personal health experience to good use.  I’m very open with my personal health issues, and this has helped immensely in several ways: understanding what my patients with chronic medical problems are going through, assessing potential problems with their meds and kidney status, and making suggestions that are helpful.  Case Management is a burgeoning field, and I plan on working on Case Management certification over the next 2 years, and possibly going on for a Master’s Degree in Case Management.  I’m 48 years old, and will probably be working another 20 years or more, so it’s not too late in my career to do this.

For those who are interested, I’m now on Twitter.  My posts are for the most part links to articles related to medical studies and discoveries related to renal, transplant, heart failure, respiratory, osteoporosis, and others.  I’m still working on figuring out Twitter, but hope to be posting more as time goes on.

I had my monthly labs this past week, and my creatinine of 1.2 is now back to normal!

The BK virus is another story.  Although still low at 84k copies in my urine, it is up from last months 1,100 copies.  At that time , they had lowered my Prograf dosage to 2mg/1mg (every 12 hours).  At the beginning of June, they resumed the dose of 3mg/2mg that I had been on prior to my hospitalization for the Prograf toxicity/Acute Renal Failure.  This current 84k reading reflects the current dosage, and illustrates how reducing immunosuppression will reduce BK virus.  But balancing immunosuppression and BK virus levels is a tightrope.  Too high a dose of Prograf means elevated BK levels; too low a dose risks rejection of the kidney.  So, as long as my levels of BK stay low, and don’t cause any kidney damage,  I’ll be ok with that.

Despite the problems afterwards, the foot surgery was a definite success.  I finish physical therapy, and although it’s still swollen, I can walk on it without the pain I had prior to surgery (and even prior to the infection).  I saw 6 sthe Orthopedic surgeon this past week, and he is pleased with how it turned out. I did get a peek at the x-ray, and I have 6 screws and 2 plates at the first toe foot bones on the top of my foot, and a 3-4″ threaded bolt going straight up through my heel and (presumably) into either the tibia or fibula (leg bones).  I sure would have liked to see a video of THAT surgery.

I’m still wearing the Bledsoe boot, but was fitted for a shoe insert on Wednesday.  I’m fairly sure that this will be enough support, so that I will no longer need the AFO that goes up to just below my knee, as I used to wear prior to surgery.

Well, I’m almost 6 months into my new job, and I’m just now able to do things without asking questions every 5 minutes. I was very comfortable in my previous job, having done it for 17 years, but this job is definitely more intense.  In addition to the volume of work, I’m also having to learn the adult disease processes, as well how to do case management. There were several nights this week where I came home from work, and after supper, did another 1-2 hours.  But it’s not bad when you have a job that you love.

My kidney transplant has now temporarily taken a backseat to another chronic problem-my foot.

Within the last 2 months, I’ve had 2 bouts of foot and leg cellulitis (infection) that just wouldn’t clear up.  Due to the peripheral neuropathy (Charcot Marie Tooth disease) and a pressure point on the outside of my left foot from a protruding bone callus after a fracture from 15 years ago, I developed a pressure ulcer on the bottom of my foot.  It turns out that the cause of the cellulitis’ was an infection of the foot ulcer, which turned out to be a superficial infection (Osteomyelitis) on the 5th metatarsal (foot bone).
I had gone to my PCP for initial treatment, and he thought the infection was due to an open are of skin on my shin.  I was on Keflex, and it seemed to resolve, but within a day or 2 off of it, the infection was back.  I went in for 2 days of IV antibiotics (Ceftriaxone) to the clinic, and it didn’t really do much.  I had then gone to the Podiatrist, and he debrided the ulcer, noting that it was fairly deep, and was draining amber colored fluid. He switched my to Doxycycline, and it was 90% improved from Friday to Monday. He debrided it and then packed it, and it was back to where it was before within 2 days.  I was then sent to the Orthopaedic Surgeon, who immediately diagnosed it as Osteomyelitis, and planned surgery.  But first, I was casted, and made non-weight bearing until the surgery (10 days).

In addition to debridement of the infection, he felt that I would need some reconstructive surgery as well. He brought in a colleague, who felt that it should be a 2 stage procedure, so as to avoid infection of the reconstructive aspect of the surgery.  The surgeon (Dr. Cush), felt that I should get it all at the same time, to avoid pressure on the original site of infection.  I opted for a single stage surgery, but for a different reason. The Transplant Surgeons always told me to avoid unnecessary surgeries.  Dr. Cush assured me that the reconstruction would be away from the infection site.

So on Tuesday, I had debridement of the pressure ulcer and bone, removal of part of my 5th metatarsal, shaving down of the protruding bone callus, osteotomies (bone removal) of toes 1 and 2 along with placement of screws and plates to straighten them out, a screw (and maybe a plate-can’t remember) up into my heel, lenghthening of the Achilles Tendon, and transfer of the Peroneal Longus tendon to the Peroneal Brevus tendon to straighten out/strenghten my foot.

The pain (and nausea) after the surgery were severe; I didn’t have a PCA pump (patient controlled analgesia), and I think that would have made a difference).  By Wednesday, I was feeling better, although still on rather frequent Oxycodone and IV Morphine, and by Thursday, I was ready to go home.  I’m doing well now that I’m home. It’s difficult not being able to bear weight on my left foot at all. We take our 2 legs for granted until we can’t use them.  Getting out of a chair is not easy, nor are steps.  I’m fortunate that there is a device called a knee walker-much easier to get around than crutches.

I just received a call today from the surgeon’s office, and the culture grew out yeast.  So, I will now be on fluconazole for the next few weeks.

As for my labs, my creatinine is stable at 1.1-1.2 (it was 1.2 this week, but my hydration status wasn’t the best).  My BK virus is up slightly from last month to 7700 copies in my urine.

Till next month….

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!

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 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!