CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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

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

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

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

For my US readers, Happy Thanksgiving!

My sister was in the Emergency Department again today, but this visit was not an emergency. She got a call for a kidney, and was told to go to the ED.

As it turns out, the kidney was a no-go. The potential donor was a 50 year old with a head injury, but the surgeons apparently would not take the kidney, as it wasn’t suitable. 

I know that my sister is disappointed, but a transplant is not something to rush in to (I know, easy for me to say, but it’s true). It’s worth waiting for an optimal kidney, not only to prevent problems, but also, if you are transplanted once and it fails, it’s harder to match subsequent kidneys for transplant due to antibodies from the first transplant. Better to get a good one initially so that it will hopefully last longer.

She has been on the list for almost 3 years now, and has had several calls, but on a positive note, the calls are getting closer, and she was “1st in line” for this kidney. So it should be soon…

As for me, I had my monthly labs this week, and my creatinine is 1.1, which is the lowest ever since transplant.  My glucose was high, but it was non-fasting, so I’m not too worried about that yet.  My blood counts are good, although my lymphocytes are high-probably because of the bronchitis I’ve had this week (increased lymphs indicates a viral infection).

The only other issue is that I have what appears to be a blister on the top of my 2nd toe.  I had my doctor eyeball it, and he just told me to soak it in Epsom salts. I have to be careful due to my neuropathy; I have minimal sensation in my feet, along with decreased sensation to pain.  I held off on walking the past 2 days, and it is improving.

Have a great weekend. The weather here will be picture-perfect sunny and mid 50′s.

Yesterday, I had my labs done. Again, I drew them myself from my fistula, so I didn’t need multiple “sticks”.

My neutropenia is resolved, as my WBC is back up to 2.67 (last week, it was 1.2).  My hemoglobin is now rising (up to 9.9), and my creatinine is rock stable at 1.2. My glucose was up, but I had eaten breakfast before, and rushed to get to work right before drawing my labs. And my Prograf is within desired range of 8-10. I did update my labs on the Vital Signs and Labs page.

I did ask the nurse about my hemoglobin, and she said that it may take a couple of months for the transplanted kidney to “kick in” with erythropoietin production. Apparently, that’s beginning to happen now.

Our “middle” dog, Kelsea (12 year old English Springer Spaniel) had another episode of geriatric vestibular syndrome . She first had this back in April, and it eventually resolved with time, although her head remained slightly tilted to the side. Now, it’s tilted almost completely sideways. We got some Bonine last night, and at least it’s keeping her from vomiting. It doesn’t seem to be as bad this time (no vomiting so far), so I’m hoping it will resolve quickly.

Along the lines of excellent doctors who care about their patients, here is an entry from after my very first dialysis treatment (which was on a Saturday):

My nephrologist, Dr. H., called the dialysis unit to ask how I was doing, and to let me know he was thinking about me-what a guy!

I was also talking to the nurse from the Nephrology clinic today, and she said that Dr. H felt bad about having to start me on dialysis with how good I still look; it’s a much easier decision when the patient is symptomatic. It’s just that my labs got so much worse, that he couldn’t let it go any longer.  I’m just looking at it as being a temporary situation, until a kidney comes along.

For those who weren’t following my blog back then, I had an episode of extreme flank pain, which was most likely a ruptured cyst, followed by a presumed infection of a kidney cyst (they are very difficult to diagnose; my urine culture was negative, but I had a high fever and chills). My creatinine was around 7.7 and  BUN ~90 prior to this, and they went up to ~12 and 118, hence the dialysis.

Today is my 2 week transplant anniversary. Yea! It’s hard to believe it’s been 2 weeks. In one respect, 2 weeks seems like it was long ago, and in another respect, it seems just a short while ago.

My “vitals” are stable. Wt up a 1/2 lb to 218.5, although overall, it’s stable. BP 138/78 (so far, the Magnesium hasn’t helped with that), no fever, and my ins yesterday was 3590 cc and outs 3800. My bladder is finally stretching; 2 days in a row where I had 600 cc out at one time! (previous high was 500 cc). May not seem like a big deal, but the more that comes out at 1 time = more room = less trips to the bathroom!

I got my labs back yesterday afternoon, and everything is stable (posted below). Creatinine and BUN stable, and Prograf at upper end of desired range, so no change in dose. Potassium remains at upper end of normal, yet I’m not overdoing it on high potassium foods. Maybe there’s a diuretic in my future.

I’m doing well GI wise. No more constipation; we’ll leave it at that Occasional nausea, but that may very well be from my gastric bypass; hard to say. I did throw up a tiny bit about 20 minutes after taking my meds, but I took some on an empty stomach, so that’s probably why. I’m figuring that I got most of them in, so I won’t repeat them.

The one thing that sticks out (figuratively speaking) since transplant? NO MORE ITCHING! I used to have itching constantly; increased phosphorous is notorious for doing this. But now, my Phosphorous is below normal, and the itching is gone.

My right arm is still bothersome. I’ve found that a heating pad works well, but I’ve also had to take Tylenol #3 at times to help with the pain. It’s a different kind of pain than I have with kidney cyst ruptures; more like an intense ache. It’s not related to exertion; if fact, it’s worse when I’m sleeping and wake up. Don’t misunderstand; I’m not whining about it, just reporting it. I’m able to “suck it up”; in relation to everything else, this is minor.

LABS

I got home from the hospital this afternoon, and took a nice, long, power nap. 

My creatinine is 2.4 today my GFR (% of kidney function) is up to 28% (hasn’t been that high in probably 5 years), and my BUN is down to 35.

They pulled the central line in my neck this morning, and the worst part was cutting out the stitches; I didn’t even feel the actual line come out.

I was up 3 times during the night to pee, and continue to do so all day.

I have an appointment on Monday with lab work (I’ll be getting frequent labs from here on in), and then every Wednesday for the next month. I was told that everytime I have lab  work, I need my immunosuppressive levels checked. I also will see Urology in 4 weeks to have the stent removed in the ureter (via a cystoscope), and a Dermatology appointment in 3 months, since the risk of skin cancer is a lot higher in transplant recipients due to the immunosuppressants.

I have to say that EVERYONE at Geisinger went out of their way to see that I had a successful transplant; the Surgeons, nurses, Nephrologists, Dialysis staff, etc. In addition, other employees went out of their way to see that my visit was pleasant, from the food service workers who set up my tray (“is there anything else I can do for you”?), to the housekeepers (“you have a good day now”), to the guy at the front door who helped me into the car. 

Here’s a pic of my new pill box and the various pills I have to take. It looks worse than it is; most of these pills will only be taken the first several months.

Yesterday: creatinine was 4.8, and my GFR (% of kidney function) was 14. Today, it’s 3.4 and 21! Also, my BUN today is 39, which is good.

I’ll be going home tomorrow. The docs were in and are very pleased.

Now that the catheter is out, and the iv fluids stopped, I’m able to get around more easily. I did get nauseated at breakfast (med related), causing me to retch, and that was very painful at the surgery site, but I took some Percocet, and that helped.

They did leave in the central line in my neck, because I have such crappy veins, so if I need an IV, I’ll have one in. But I don’t anticipate needing anything more IV, although they can still use it to draw blood from.