CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

Good news; the BK level in my blood went from 7,260 copies last month to 2,257 copies of the virus this month.

A co-worker had BK as well (coincidentally, she has Polycystic Kidney Disease as well), and she was off the CellCept for 7 months, the virus was finally controlled (it never leaves the system), and she’s back on her CellCept.

Everything else is going well.  The episode of phlebitis that I had hasn’t reared it’s ugly head since last month.  I think it happened due to a problem with my orthotics.

The pic above is similar to what I wear.  However, I had a strap put on right above the ankle as well.  I had been doing some intense walking during my lunch hour every day, and the strap was too tight.  It caused the vein in my inner ankle to become inflammed.  I’ve since took the strap off, I’m riding my recumbent bike instead, and no more phlebitis (phleb=vein and itis=inflammation).

Another problem I had in my left foot is some significant pain from an old injury.  About 12 years ago, I fractured the outermost foot bone.  A callous formed on the bone, and juts out of the side of my foot.  It constantly presses against the side of the orthotic.  I’ve dealt with it now for a while, and finally came up with a solution.  I bought a Dr. Scholl’s gel heel pad, cut it to fit, and have it placed so that it cushions the bone.  My pain is much less now (it will never be pain free), and those 12 hour shifts in the hospital should be a lot more tolerable.  I’m stuck as far as pain relievers, as I can only take Tylenol and narcotics.  I don’t like to take narcotics unless I’m desperate, so I was trying to get by with Tylenol Arthritis.  It helped, but the cushion will be much better.

In the kidney patient community, Swine Flu (H1N1) is certainly on our minds. As of now, it is a worldwide pandemic.  Bill Peckham’s blog (Dialysis from the sharp end of the needle) has an interesting post regarding how an overwhelming surge of cases will be handled (basically, who is treated, who is not treated).   Bill’s blog is also a great resource for other issues related to dialysis, and he has a regular listing of blogs in the kidney community.

The Department of Health and Human Services has a website that also may help answer questions at flu.gov.

I must admit that I had a misconception that I cleared up through flu.gov.  I thought that all of the vaccines for Swine Flu were live viruses, therefore making me ineligible for the vaccine. However, it appears that the injectable form will not be live (the same as the vaccine for seasonal flu), and there will also be a live virus vaccine as a nasal spray.

As with any decision, it’s risk vs. benefit.  I’m concerned that although there are clinical trials being carried out on the vaccine, they are not as comprehensive as normally would be done – obviously due to the time factor.  I haven’t decided yet whether I’ll get it, but after finding out that it isn’t a live virus vaccine, I may end up getting it.

I received a call from the Transplant Nurse on my way in to work today.  She called to give me the results of my blood work from Monday regarding the BK virus.

On the surface, the results don’t look good-I have BK virus in my blood. However, I expected that, being that there was over 39 MILLION copies of BK in my urine.

But it was actually good news: there are only 7600 copies of the virus in my blood, and the only treatment is that which I’m already doing-stopping the CellCept.  No need to treat with Cipro or Leflunomide; they are just going to monitor my blood monthly for the number of copies of the virus, and once my blood is clear, they will monitor my urine.  When the urine is clear of the virus, I’ll go back on CellCept.

When they didn’t screen for this, BK killed off a lot of transplanted kidneys.  I’m very fortunate to have been screened, as this will prolong the life of my “new” kidney.

Of course, the week wouldn’t be complete without ANOTHER problem popping up; this time, unrelated to my kidney.

On Tuesday morning, I was awakened at 4:30 out of a sound sleep with pain in my lower leg near my ankle. I’ve had a similar pain in the opposite ankle before, and given the problems I have with the Charcot Marie Tooth disease, I passed it off to a musculo-skeletal pain, assuming it was probably tendonitis (I’m a nurse, not a doctor).  I went to work, and the pain increased. When I took off my orthotic (splint) and sock, the area of pain was BURNING like mad, and was red.  At that point, I thought it might be the start of Shingles, given the quality of the pain, the redness, and the fact that I’m immunocompromised.

Working in the same clinic as my primary doctor has it’s advantages (which I do not abuse), and I got an appointment right away. My self-diagnosis was wrong, and it turns out I have phlebitis (an inflammation of the vein). My theory is that the strap on my orthotic was too tight, along with the fact that I do some intense walking over lunchtime, which caused the phlebitis.

It’s still flared up. When I stand or walk for over 10 minutes, the pain returns. In fact, standing in line 20 minutes today waiting for my picture license was a killer, but I elevated it once I got to work, and it was better.  It worsens then when I’m driving, since it’s putting strain on the vein.  Elevating it for about 30 minutes calms it down, so I’ve been limiting walking.

The problem with medication is that the traditional treatment, Naproxen or other NSAIDS, is a big no-no with having the transplant, as these drugs are notorious for damaging kidneys.  So I’ve gotten by with Tylenol Arthritis (great drug; even better than Extra Strength Tylenol), and an occasional Percocet (3 in the past 2 days).

I’ll be sure to post an update with my labs in a few weeks, and will probably have a kidney-related post as well.

Tonight will be 3 weeks that my sister had her kidney transplant; it’s been a rough time for her.

She still is not drinking well due to nausea, although she is putting out a decent amount of urine.  She was transferred to HealthSouth Rehab Hospital (on the Geisinger campus) on Saturday, and is having physical therapy to help her get up and moving again.  One of the problems is that her feet are still very swollen (although the left foot is less than the right), that she still can’t get her leg orthotic on, and it’s difficult to walk.

Last weekend, they found that she had a kidney infection that went into her bloodstream. It apparently was caught early, as she is only on oral Cipro.

Another issue for her is breathing.  She had fluid in her lungs, and also as an underlying respiratory issue. Her Charcot Marie Tooth, which is a peripheral neuropathy usually affecting the extremities, has affected a central nerve, the phrenic nerve.  This is the nerve which stimulates the diaphragm to get air into the lungs.  So that, coupled with the fluid, as well as anxiety over the breathing difficulty led to even more difficulty, but this has improved over the past few days.  The Pulmonologist was in at her request, and he told her there was nothing that he could do.

Fortunately, the kidney seems to be working well.

My sister’s new kidney is apparently doing well.  She has a ton of extra fluid “on board” (I had 22 lbs of fluid after my transplant), so she’s having difficulty getting her lower leg orthotic on, and she’s still week.

She rang the call bell Friday night for the nurse to help her to the bathroom.  The nurse wouldn’t listen, and put the slipper socks on her, and of course, she slipped and fell in the bathroom.  She still has the catheter in, but the central IV line in her neck was taken out previously (I thought the Foley was out, but she told me yesterday it wasn’t).  The plan is for her to go to the HealthSouth Rehab Hospital, which is on the same campus as Geisinger.  Hopefully, she’ll be able to bring back some of her leg function (she has Charcot-Marie-Tooth, the same as me, but more severe than mine.

For those who live in Luzerne County, please consider voting for my cousin, Jennifer Rogers. In light of all of the judges who admitted to felonies in that county,  she would not be one to be involved in the Luzerne County tradition of crooked politics.  She is honest and fair, and would be a change from those who are on their way to jail.

We just had work done in our house, and other than some minor touch-ups, it’s completed. We had our bathroom re-done with new tile on the floor and walls, a new tub and surround, fresh paint, a new hand-made cabinet on the way, new baseboard heater, etc.  We also replaced the 8′ x 5′ front picture window with a bay window.  It was messy (demolition of the old tile and cutting of the new tile created a lot of dust), but it was worth it.  Kevin helped Ken (the guy who did the work) put our 40-some year old cast-iron tub in the truck yesterday; all 300-400 lbs of it!

My bronchitis is pretty much resolved, so I’ll finally be able to visit my sister tomorrow.  I’ve been very fortunate the past year since my transplant.  The only semi-serious infection was that over Christmas when I probably had an infected kidney cyst, and rather severe diarrhea.  But there’s far worse out there for someone whose immune system is suppressed, so I’m not complaining….

Busy, busy busy, which is why I haven’t posted in a while.  Last week, I had a few hours of overtime at work, and yesterday, I worked a 10 hour shift. We’ll probably have a lull at my full time job for the next 2-3 weeks, but since school is back this week, the kids will once again be sharing their germs, and we’ll start to see more strep and asthma towards the middle to end of September. I’m at a desk still, so I will have minimal exposure, and am not worried.

Nothing to report transplant-wise this week. I haven’t had labs since my last post, although I’m getting some done on Wednesday.

I’m still walking 5 days/week, although not this week. I have some skin breakdown on my right ankle from rubbing against my AFO (“splint” that helps support my ankle and foot when walking, due to problems related to my CMT).  I did put some Duoderm over it, but will have to forego walking for now. I’ll probably just do my recumbent bike for the rest of the week, since I usually don’t wear my AFO’s around the house.

Today, I have my regular follow up with the Bariatric doctor. Speaking of which, I had started seeing the doctors for Obesity in 1996 or 1997 (back in the Phen-Fen days). One of the doctors who I saw back then left our hospital for a job in Boston. I found out recently that she has written a book on the weigh-loss drug Alli that is now on Amazon.

We ended up not going to the School Board meeting 2 weeks ago.  It was a very hectic day, as I was tired from working 10 hours the day before, and Jackie had to go to see her mother, after she ended up in the Emergency Department for a fall. (she’s OK, but was pretty banged up; broken nose, broken finger, rib injuries, and bruising all over). I don’t think it would have done much good anyway. The only consolation is that the taxpayers are beginning to see how out of control the school board and administration are, and are beginning to confront them on their practices. 

Jackie started her new job at the end of last week (orientation) and will start in the classroom on Wednesday. She’ll be working in a classroom for autistic children at a privately-run school as a para-professional. The position is above that of an aide, but since she isn’t certified in Special Education, she can’t teach at this point. She has been in contact with her alma mater to look into getting certification in Special Ed, and it will only be 6 classes plus an internship. She hopes that her current job will count for at least some of her internship, and possibly even her 3 years as an Alternative Education teacher counting towards it.

I was flipping through the channels last night, and came upon the Olympics. it was the first time I had them on; I’m obviously not a big fan (I’m more likely to watch the Winter Olympics). It got me thinking about my cousin Bernie, who I haven’t seen in a long time (our grandparents’ 50th wedding anniversary party in 1985); my father and his father were brothers. Anyway, the last I knew, he was living in Taiwan. I “Googled” him, and after several different search terms, found that he’s now living in Beijing, and apparently has done well. 

It looks as though I’ll be building another computer. Kevin wants a new computer for Christmas, so I gave him the option of a manufactured box or a build-your-own. I’ll be watching Newegg over the next few months to pick up components as they go on sale and have free shipping. It’s not necessarily cheaper doing it this way, but the parts you get for the same money as the cost of a manufactured computer are superior.

Although I went back to work the week before last, this week was my first full 5 day week since before my transplant. Actually, it was my first full 5 day-in-a-row work week since last August. When I was on dialysis, I worked 8 hours on M-W-F, and 4 hours on T-Th (dialysis days). However, I still got in 40 hours, because I also worked 8 hours every Sunday at my weekend job.

Both last night and this morning, I was wiped out. I was in bed by 11 last night, and took a 2 hour nap early this afternoon, and I feel much better. I don’t think it’s indicating anything bad, as I don’t have a fever or any other potentially ominous symptom; I think it’s just that I’m adjusting to getting back into ”the routine”.

I did get letters from one of the Transplant Surgeon’s exempting me from my PPD. That’s the test where they inject a tiny amount of “Purified Protein Derivative” under the skin. If you react, then you may have either latent or active Tuberculosis. In both my full time and weekend jobs, it’s required yearly, but since my immune system is suppressed, I wouldn’t react even if I did have TB. However, I had a chest x-ray in April and May, and there was signs of TB, so I’m not worried. I also got a letter releasing me to go back to work at my weekend job in August. He initially put on that I had a 10 lb lifting limit, which wouldn’t fly with the agency, but I spoke to the nurse, and they decided that at that point it would be 3 months since surgery, he lifted the restriction (3 months is the typical amount of time for that restriction). Even if I did have that, the only heavy lifting is when I transfer the patient from bed to chair, and I use a hydraulic Hoyer lift for that. When I turn him, there is another nurse, so technically, I would still not be lifting much.

My sister, who also has PKD and CMT, and has been on dialysis for over 2 years now, fell when getting out of bed the other day, and hit her head on the nightstand. She was worried, because of my having a subdural hematoma (mine was impressive; I only had a headache for a few days, and one instance of vomiting, but on MRI, it showed that my left ventricle was almost totally occluded and past midline, yet I was relatively asymptomatic). SDH has nothing directly to do with PKD; cerebral aneurysms are what is associated with PKD. However, kidney failure does cause the platelets to sometimes not work right, which, I theorized, may have led to my SDH. The only thing to do is to watch for symptoms. I doubt she’ll have problems, but time will tell.

Kelsea, our Springer Spaniel, is doing better. Her head is still cocked to the side (although not as much), but her balance is much better, and she’s eating and drinking well. 

My computer is 5 years old,  but it does everything I want it to, so I’m going to hold off on buying a new one. My in-laws got a really nice one; a HP with a 22 inch screen, and 3 gigs of memory; we’re probably getting Kevin a similar one for Christmas. But I have my RAM maxed at 2gb, which is fine for me. My hard drive sounds like it’s maybe trying to die, so I backed it up onto a removable drive, and I’ll be ordering a new drive this week. It’s getting harder to get drives that connect via EIDE, so my computer will soon be obsolete.

No more pain from the cystoscopy/stent removal. In regards to med side effects, I’m sleeping OK, the diarrhea is controlled (I increased my fiber, and that seems to help), but the hand tremors (from Prograf) are still somewhat bothersome, especially after my am dose (I take 3mg in the am, and 2mg in the pm). But again, I’ll take the minor annoyances over kidney failure any day. My weight seems to be hanging around 207 lbs, when just last week it was around 209, so that’s an improvement.

Oh, I forgot about another side effect: bruising from aspirin (a.k.a. ASA). Friday, I was walking in our hallway in bare feet, and stubbed my toe on a throw rug (not at all uncommon with CMT). By yesterday, I had a nice bruise (as well as pain and swelling). I posted a pic at the end of this post; you can also see the characteristic “hammer toes” as a result of the neuropathy.

 My blog hit 2000+ hits sometime Saturday afternoon. Not bad for being up less than 2 months (not sure how many my LiveJournal blog has, because  LJ doesn’t offer the blog stats option).

I found an interesting blog entry from Fabius Maximus on the economy: When Did Dude Predict A Recession?

This is a clickable thumbnail; the larger pic isn’t focused very well, because of my hand tremors, but this gives a pretty good indication of the bruise.