CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

My sister is still in the rehab hospital.  Her face is moderately swollen (from the excess fluids in her tissues), but she is still not drinking enough, which is EXTREMELY important with a transplant.  Her kidney is working well, but she’s still having difficulty walking.

Due to not drinking well, she bought herself another NG feeding tube, and they are giving her water boluses for her to keep hydrated.  She said she would “try” to drink,  but I told her that she HAD to drink, and that if she didn’t, she’d end up with another surgery to put a G tube in (a tube placed in the stomach, which is more long-term than a NG tube).

Her hemoglobin is very low (7-8), so she’s getting 2 units of blood right now.  The anemia could be from the meds she’s on, and it could also explain her weakness.   Her breathing isn’t great; I counted her respiratory rate at 36 when we went to see her. Unfortunately, there’s nothing they can do for that.

I had a nice relaxing weekend.  I worked OT in the hospital on Friday night shift; I enjoy working there. It’s a nice change from working in the clinic.

Saturday, the 3 of us went to Knoebel’s for supper.  It was nice, but I’m glad we live close, as I w0uldn’t want to spend an entire day there.  We’re going back next month for Geisinger’s Transplant Picnic.

Sunday was a do-nothing day, and yesterday, we had a cook out for Memorial Day.

I did have an injury on Sunday.  I was walking out of the bakery with the cake for yesterday, didn’t see that there was a step, and went down on my knee.  It’s swollen, bruised (I’m on aspirin daily), and painful, but I’ll live.

We did see a great movie this weekend: Taken.  I highly recommend it if you like action/suspense movies.

Today, Kevin got home from school, and found foil on the floor, and the cake that was under it on the counter gone.  It most likely is travelling through our GoldenDoodle’s intestines by now.

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 is still in the hospital (she’s 2 weeks post-transplant today), and awaiting placement in rehab (physical rehab).  The Rehab Hospital on campus can’t take her, because she needs a private room, so the plan now is a local Rehab/Nursing Home until she is able to walk.  In addition to the weakness brought on by 2 weeks of being in bed, her feet are swollen at least 3 times the normal size, so she can’t get her Orthotic on her foot, and thus can’t walk well.

She’s also not eating and drinking very well, and still has the central line (IJ line) in her neck.  They were going to put a PICC line in, but the nurse didn’t do it, due to it being in a vein that formerly was a fistula site (that didn’t “mature”).  The doctor cleared her for that, so the plan is apparently to remove the IJ line and insert a PICC for intermittent IV fluids, blood draws,  and to give IV Lasix (to get rid of excess fluid).  Her creatinine is still in the 7 range, but the docs apparently are confident that the kidney is working, and just needs to “wake up”.

The chronic constipation that she had (that most, if not ALL dialysis patients have, including me) is now the opposite, thanks to good ole’ CellCept (one of the drugs used to suppress the immune system).  The fluid retention and diarrhea are both things that happened to me, and I assume are normal.

Since she isn’t drinking well, she had a NG tube (Feeding tube) put in from her nose to her stomach, and they are giving her water every 4 hours through it).  I was there to visit today, and she is urinating more than before, so that’s good.

I had my last of 3 weekly labs last week, and just found out the results of my Immune Cell Function; it was 243, which is right where it should be.  They cut my CellCept dose in half when it hit 71 back in April, so that apparently did the trick.

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….

I just got off of the phone with my sister. She’s still weak, has “terrible” heartburn, and is having difficulty eating and drinking enough.
Her Foley Catheter and central IV line were removed (hospital policy is that they are taken out as soon as possible, to prevent infection). On the plus side, her incision is less painful. She has hearing difficulty, so I don’t think that she hears everything that the doctor says.

The heartburn could be from the meds, but also could be from when she got a pill stuck in her throat the day after the surgery (pill esophagitis).

The doctors are considering a discharge to the Rehab hospital to help restore her muscle strength; he’s still having difficulty walking, even with a walker.

My sister’s kidney is still “sleepy”, her urine output is down, and yesterday they gave her a boatload of IV Lasix yesterday (160 mg). I spoke with the nurse, and she told me that the kidney is perfusing well with blood (that’s a good thing), but it just has to kick in to filter the fluids and toxins.

She sounded a little better today.  She was up walking 3 times yesterday, but is weak. The Physical Therapist took her for a walk today, and she apparently will be discharged to the Rehab hospital until she’s able to walk better (her Charcot Marie Tooth causes muscle shrinkage, and I think it may take her a little bit to regain her muscle strength).

She’s still not eating very well, nor drinking, but does have IV fluids running, as she’s still nauseated and doesn’t have an appetite.

BTW, I’m using “she” rather than her name for privacy.

It’s hard to believe, but it was exactly 1 year ago that I received my kidney transplant!

I’ve been very fortunate. The only “issue” I had was anemia for the first 6 months, which turned out to be drug induced (either the Valcyte or the Dapsone), but once I stopped those in November, my blood counts returned to my baseline.  Oh, and of course there was the dreaded HIV scare, but that was nothing more than a “scare” (all because someone ordered the wrong lab work).

Through all of those years of gradually going into kidney failure, and then dialysis, the difference is striking. The mental fog of kidney failure is a memory (pun intended), I’m off all blood pressure meds for the first time in almost 20 years, I can drink an many fluids as I want now, I can eat foods with phosphorous and potassium without having to worry about limiting them or taking pills to prevent absorption,  I don’t need naps anymore, and I haven’t had severe muscle cramps since being on dialysis (muscle cramps from dialysis are one of only 2 types of pain that has ever brought tears to my eyes; the other was when I had ruptured kidney cysts).

Of course, nothing is guaranteed, and someday I may very well return to going back on dialysis,  but for now, I’m enjoying my new life.  And again, many thanks to the family of my deceased donor for choosing to donate her organs upon her death.

My sister is doing better.  The kidney is still “asleep” (a term coined by the doctors to explain to laypeople), as her creatinine is 5.1, but the same thing happened to me, and within a few days, mine “woke up”. For those with a medical background, this is a temporary ATN (Acute Tubular Necrosis).

The Nephrologist cut back her IV fluid rate, which is a good sign. She’s having difficulty drinking, both due to nausea, and the fact that she’s been on a fluid restriction for the past 3+ years while on dialysis.  She’s also been out of bed, but I don’t think she’s doing a lot of walking yet.

I’ll post another update in a day or two.