CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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.

As many of you transplantees may already know, CellCept is now available in generic, and Prograf has lost patent protection (although I’m not aware of any generic versions yet; correct me if I’m wrong).

I discussed this with my transplant surgeon at my last appointment (BEFORE I found out I had BK virus and was taken off CellCept). He said he preferred me to take brand CellCept, but that if my insurance didn’t cover it, I’d have to take generic.  I pressed him as to whether there is an appreciable difference between brand and generic, and he eventually said “no”, but that he preferred I’d take the brand.  (huh?)

I discussed this with a pharmacist I work with, and he explained that in some drugs, if there’s a narrow therapuetic index (the difference between therapuetic and toxic), then it may be an issue, but with CellCept, it shouldn’t be an issue.  (I hope I got that right)

Anyway, I had read somewhere on an internet forum that there may be up to 15% variability between brand and generic as allowed by the FDA, but this is apparently FALSE. Given that there is only a low single digit difference between the 2, it’s not a concern, especially as there are OTHER factors with absorption, such as interference from foods and minerals. In other words, your drug levels will be pretty close each time you take a med, but never exactly the same.

I plan on taking generic when I’m back on CellCept.  My rationale:

• My insurance has a “lifetime limit” of drug coverage. By taking the lower priced med, I will reach that later rather than sooner
• I have periodic ICF’s (Immune Cell Function) done; this should pick up on any problems

For those who will stay on brand CellCept, here is a link to some help with co-pays (unless you are on Medicare or Medicaid):  click on “Click here for details” at the CellCept for Living website.

For those on Prograf, check out the Prograf Value Card program.

Thoughts on this?

The Transplant Coordinator called me today with the results of my urine test for BK virus from last week; I have greater than 39 million copies of the virus in my urine. (they only test up to 39 million, so I don’t know the actual number; whatever it is, it’s a lot).  Anyway, I drew blood today (I still have my fistula and still draw my own blood from it) to check if it’s in the bloodstream (it most likely is).

The plan for now is to totally stop my CellCept, and continue on my current Prograf dose of 3mg in the am and 2 mg in the pm (my Prograf level last week was 7.9, and the desired range is 6-8). Depending on the blood result, I will probably be put on a 10 day course of Cipro, which inhibits the virus.  Hopefully, going off the CellCept will once again allow my immune system enough “power” to prevent further replication of the BK virii (I think that’s plural for virus), and once it is not detected, to go back on CellCept.  There will be a monthly urine indefinitely to monitor the level of BK in my urine, along with my monthly routine lab work to monitor my Prograf level, blood count, and kidney function (Basic Metabolic Panel).

I’m still not worried.  The advantage I have is that I’ve been monitored for BK  since my transplant, and 3 months ago it was negative, so it hasn’t apparently had time to do any major damage, as my creatinine is still 1.2, which is where it has been since getting the new kidney.

I’ll have the results of today’s blood work by early next week, and will post again when I find anything out.

I had my quarterly visit to the Transplant Surgeon on Monday, and everything at the visit was good. My creatinine is 1.2, hemoglobin is stable, and blood sugar normal (sometimes Prograf can cause elevated blood sugars).

However, I received a call today from the Transplant Nurse, and my urine tested positive for BK virus.

For those unfamiliar with this, BK virus is present in 80% of humans, but remains “latent” due to the immune system keeping it at bay. In those like me who are immunosuppressed, BK can “reactivate”. The problem is that BK can cause damage to the kidney.

So, I just gave a urine sample which will be a quantitative test for BK (they will count the amount of the virus present in my urine). If the number is over 2,000,000, they will then check to see if it’s in my blood. The treatment is usually to decrease the CellCept dose. However, since mine was just decreased from 2 capsule every 12 hours to 1 capsule every 12 hours, they may stop mine for now, and I’ll just be on Prograf.

My guess is that when I was over-immunosuppressed this past spring (my immune cell function was in the 70′s, which is very low, and an indicator of over-suppression), and that is how it reactivated; my last immune cell function was in the 200′s, which is where they want it. It is what it is, and I’ll just deal with what I have to. However, I’m not too worried, as I’ve talked to patients who this happened to, and they did fine.

Last week, my ICF (Immune Cell Function) test came back low, meaning over suppression of my immune system, so they cut my CellCept dose.

I just had my weekly labs done today, and my creatinine is stable at 1.2, my hemoglobin went from 11.8 t0 11.9, and my glucose was normal at 98. My Prograf level went from 5.9 to 8.1; not sure why that happened, but I don’t think they’ll mess with that dose just yet, as they want it between 6-8. 

I can’t remember if I already posted this, but my fistula is getting bigger. I have to be careful with using my left arm, as it gets a little sore if I lift too much. I suspect it will have to be tied off at some point in the near future, but once I get 2 more weeks of labs done, my labs will go to every 3 months, so I can handle a handful of blood draws without the fistula. 

My 1st anniversary with my new kidney is rapidly approaching (May 3).

As I mentioned in my previous post, my Immune Cell Function test was low 2 months ago, with low equating a higher level of immunosuppression, and I just had another done this week.

I emailed my doctor, and today, his nurse told me that it was lower than the last time (it’s 71, and IIRC, they want it around 2o0), so they cut my CellCept dose in half to 250 mg every 12 hours.

A lower dose means less chance for problems. Too much immunosuppression (low ICF) can lead to nasty fungal infections that could be fatal, viruses that can cause failure of or damage to the transplant, as well as an increased risk of cancer.  CellCept also has a potentially nasty adverse reaction called progressive multifocal leukoencephalopathy, so a decreased dose is fine with me.

I’ll be getting “regular labs” (which includes a CBC, BMP, and Prograf level) weekly for the next 3 weeks, and another Immune Cell Function test  the 3rd week.  My Prograf level is fine at 5.9 (they want it 6-8).

I was also retested with my “high risk labs”, and my Hepatitis B and C are negative, as well as my HIV (remember the HIV scare?).

So everything is going well; now if I could shed about 10-15 lbs, I’ll be doing even better!

I’m about 50 weeks out from transplant now, and it’s hard to believe, but I actually feel better and younger now than I did 10 years ago!

I had my appointment today with the Transplant Surgeon, and he was very pleased. You may remember back to shortly after my transplant, and I posted that my new kidney was a 3 out of 6 antigen match. However, today they told me it’s a 1 out of 6 match (or a 5 mismatch). Dr. Varma told me that it’s inconsequential, because the immunosuppression is so effective, the only thing that really matters is the blood type. Dr. Varma remembered that my kidney was from a 16 year old, and once again said that I got a great kidney.

My kidney labs are rock stable; my creatinine is 1.2 and BUN 25.  My hemoglobin dropped a bit. It’s down to 11.8; not sure what’s going on there, but I’m not too worried.  My weight is stable as well; I lost 2 lbs since my last appointment 2 months ago. Not a great loss, but better than a gain.

My last Immune Cell Function was low, meaning that I may be over immunosuppressed. Depending on how today’s is, he may cut my CellCept dosage down to 250 mg every 12 hours (it’s currently 500 mg every 12 hours). My Prograf level isn’t back yet either; my current dose on that is 3 mg in am, 2 mg in pm.  My BP was 132/72, and they are pleased with that as well (and that’s without ANY anti-hypertensive meds!).

I continue to walk several days a week. In fact, I’m now consciously trying to park further, rather than closer, so that I get as much walking in as possible.

Jackie and Kevin tell me my fistula is getting larger. I’m afraid that I may have to have it tied off soon, and the vein removed. I’m hesitant to do so, because I don’t really want to mess with it unless it’s giving me problems.  But I will call the surgeon if it does start causing pain or circulation problems.

I’m enjoying my weekends off. I did fill in at my old weekend job last Sunday, and they sent me calendars to fill in for available shifts for May, but I doubt I’ll be working for the nursing agency much in the future.

The Pediatric Rheumatologist I work with has a patient that he had on his service in the hospital who was diagnosed last fall with an extremely rare disease called Pansclerotic Morphea. She’s not even adolescent-aged, and is dealing with a disease that is potentially fatal.  She’s going to another medical center for a procedure that will hopefully at least arrest the disease.  But since there are so few cases, everything that is done is guess work.  Another reminder of perspective; my medical issues are miniscule in relation to this….

I have so many books to read, and I’m trying to go through them now.  I’ve been reading Ayn Rand’s Atlas Shrugged, but the type is so small, I don’t think I could get through the almost 1100 pages.  So I got the audiobook, and am listening to it on my MP3 player in my spare time.

With spring comes a lot of rabbits. I think of them as a nuisance, especially when they dig up the yard, or burrow under our fence. Our GoldenDoodle, Digger, thinks of them as toys. So far, he’s gotten three of them within the past 2 months. He’s very proud of his catches, and when we go out to try to get them off of him, he thinks we’re playing, and proudly and playfully runs around the yard with the dead rabbit hanging out of his mouth.  The only good thing is that unlike our first dog, a cocker spaniel, Digger isn’t interested in eating them.

My sister hasn’t had any more episodes of life-threatening potassium levels. She came close to getting a kidney, but the surgeons refused it. They did say to me today that she is close, as her name is now coming first on the list when an available kidney is her blood type.

I was in the Emergency Department last Tuesday with Jackie. She had excruciating lower abdominal pain. Entering the ED in a wheelchair crying loudly and saying that you can’t stand the pain is one sure way of getting a room ahead of the other 20 patients waiting for one.  Once they gave her 10 mg of IV Morphine (a HUGE dose), her pain went from a 10+ to a 4.  A dose of Dilaudid an hour later did the trick to totally relieve the pain. A CT scan showed a 1mm kidney stone in the ureter, and she passed it last Thursday, but not after a fair amount of vomiting, constant sleeping, and intermittent severe pain. She’s fine now, but hopes she NEVER has to go through that again; she says it was worse than labor.

I’m now 8 months post-transplant, and despite a sick December, I’m doing great once again. Appetite back to normal, only sporadic kidney pain (in my “native” kidneys), and my labs are back to what they should be. I don’t have access to them now, but on my labs this past Tuesday, my creatinine is 1.3 (I usually run 1.2 to 1.3), hemoglobin 12.9, white blood cell count 5, CO2 normal at 23 (had been 17), and my Prograf level is 7.7 (they want it 6-8).

Current transplant meds/immunosuppressants: Prograf 3 mg in am, 2mg in pm, and CellCept 500 mg every 12 hours. I’m also back on Prilosec, and take a bunch of vitamins as well as a baby aspirin.

I’ve noticed more hand tremors lately. After talking to someone who works in our building and also had a kidney transplant for PKD (small world), she has tremors as well, and was told it’s from the Prograf, even with it being a normal level. Again, if that’s the worst I have to deal with it, I’ll take tremors over dialysis any day.

I also had an abdominal ultrasound on Tuesday, which was ordered right before Christmas when I was having the kidney pain and abdominal pain. I asked my doc if it was necessary, and he wanted it done, even though I’m feeling fine. The ultrasound showed some semblance of a kidney on the right, and nothing but cysts where my left kidney was. My gallbladder was fine (no stones), and I got to see my transplant on the screen.

This is the first I’ve gone more than a month between doctor visits with the transplant surgeon, but that’s ok; I’m stable enough to do that now.

In other news, the child I take care of on weekends was in the clinic today very briefly, and was leaving via ambulance within 20 minutes. He looked absolutely terrible, as he probably has a bowel obstruction. He’s on a ventilator now, but I haven’t had an update recently. I guess the docs are giving him a 50/50 chance of surviving, but based on when I saw him today, I would say those are very generous odds. I won’t go into too many details, but he is 15, has severe brain damage from “shaken baby syndrome”, but has been well cared for by his adopted family.

I’ve been doing a lot of computer work lately. Kevin sold my computer to a friend, so I had to redo the hard drive on that; I had to get set up Kevin’s computer to access the wireless router, and finally, I had to redo Kevin’s OLD computer for myself, since it had a virus. He lost his Windows disk, and I wasn’t about to spend any more money on it, so I installed OPENSuSE, a Linux operating system. I really like it, but there’s a rather steep learning curve to it. Advantages: it’s free, and so far, there are no viruses to attack it, as you must type in a password before making changes to the system.

I’m actually off this weekend, for the first weekend since late October/early November, and I’m looking forward to it. There is a gun show locally that I’ve always wanted to go to, but never took the time to go, so I plan on going there. I also plan on just relaxing, and possibly going to the movies to see Gran Torino. We saw Marley and Me a week ago, and both thought it was a great movie, except for one part that was sad.

I had my 6 month post-transplant visit with the Surgeon and Transplant Coordinator (Nurse) today.

I had expected to be decreased on my Immunosuppressants (Prograf and CellCept), but that didn’t happen. However, the target blood level for Prograf was slightly decreased, from 8-10 to 7-9; the CellCept is not adjusted according to blood level.  So I guess I was indirectly decreased, although not right now.

I did have 2 medications stopped:  Dapsone, which is for prevention of PCP (Pneumocystis Carinii Pneumonia) and Valcyte, which is for prevention of CMV (I was on a double dose since my donor was CMV + and I’m CMV negative). Apparently, the initial suppression of my T Cells with Campath has worn off, and thus I no longer need those 2 meds. 

As a side note, when I was still on orientation at the hospital I was hired for right out of nursing school, one of my first patients was a 10 year old who was less than 24 hours post-op from a living donor kidney transplant (in 1989, back in the days when Cyclosporine was used because Prograf hadn’t yet been invented). Campath had probably not yet been invented as well, and they were using a brand new class of drugs called “monoclonal antibodies”. This girl was given Orthoclone OKT3.  IIRC, this drug was not given prior or during transplant, but was given if there were initial signs of rejection.

This drug was pretty scary, as the side effects included chest pain, heart dysrhythmias, shortness of breath, wheezing, etc. It turns out that this girl had the chest pain and shortness of breath, and had to be put on oxygen and given several Albuterol treatments. I don’t think that this is used, as Campath or Thymoglobulin are the drugs of choice, and are given mainly to prevent rejection, while the OKT3 was (at least initially) used to TREAT acute rejection. How times have changed….

The other (very minor) issue was that I’ve had intermittent pain in my left abdomen, around where the transplant is. I wasn’t very concerned, but did tell the doctor. He examined me, and felt it was maybe a pulled muscle, or as I suspect, pain from sitting too long with jeans that have a tight waistband.

My labs continue to be stable. My hemoglobin is 11.9, so the Procrit continues, my creatinine is 1.2, my Prograf level is 9, and everything else looks great. I’ll post the labs tomorrow when I’m able to enter them into my spreadsheet.

I  had a split-second panic this morning, when packing my lunch box, I realized I forgot to take my morning meds yesterday. Nothing I could do about it, so I took them a little earlier today (I did take my evening meds last night). Just don’t tell my doctor

My BP continues to be excellent; 124/64. It’s been since last winter when I took my last BP med, which never ceases to amaze me. I was disappointed when I lost weight after gastric bypass, and had to have an INCREASE in BP meds, but now that my “natives” (kidneys) are totally shot, it was probably the kidney failure that caused the hypertension.

My weight is up 5 lbs since last month, so I need to cut down on my intake. I continue to walk daily at work, and Jackie and I started walking nightly. The problem is that I “graze” at work, so I’ll have to cut that out.

‘Til next time….