CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

I had my bi-monthly appointment with the Transplant Surgeon last week, and everything is status quo. Dr. Varma even kiddingly said “everything is TOO perfect”. I hope he didn’t jinx me. I do have a cold this week, but no fever, and I haven’t missed any work.  I did have some problems on Sunday and Monday, as Jackie used a powdered carpet cleaner last weekend, and my airway tightened up, but that’s better now.

My labs continue to be excellent. Dr. Varma did mention that my HDL could be higher; that’s done by exercising. I did start back to walking again, so the next one should be higher. He asked me what the number 1 cause of chronic rejection is at 5-6 years. I guessed non-compliance with meds. Wrong-it’s cardiovascular disease. Hence, the gentle reminder that my HDL should be a little higher.  My Prograf level (not yet back at appointment time) is a little lower than the 6-8 range they shoot for, but I didn’t get any calls to change the dose, so it must be OK. I also had an Immune Cell Function test (Cylex); not sure what those results are yet as well.

I did ask about that test. It does a level of ATP, which the immune cells use as “energy”. The higher the number, the less immunosuppression; the lower the number, the more immunosuppression.  They shoot for about 300 at this point (probably lower target in the first 6 months). Mine was 200 last month, but they didn’t change anything.  This test also can detect cheating, or non-compliance with meds (not an issue with me). I guess some people “cheat” and only take their meds prior to labs. WHY anyone would do this is beyond me, but it’s done.

My sister had a close call 2 weeks ago. She does dialysis on M-W-F, and when she went to dialysis on Monday, her graft was clotted (her dialysis access). They couldn’t get her in to the Interventional Radiology department until the next day, so she went 4 days without dialysis. When she got to IR on Tuesday, her heart rate was 30, and she wasn’t looking too good (surprise surprise).  They took her right to the ER (right around the corner), put an IV line in her groin, and did emergency dialysis. It turns out that her Potassium was 7.1! This is a potential lethal level. Potassium regulates muscle function. Too low leads to muscle weakness, too high, and the muscles go into spasm (more or less). The heart is a muscle, so you can imagine the implications. She is fine now, but spent over 14 hours in the ER. Someone dropped the ball, as she was never given Kayexelate at dialysis on Monday; this med lowers potassium, and is used in such situations.

Jackie is doing well in her new job; she loves it!  She has been stressed lately, as she has an IEP due (her first one), midterm exams at college as well as some papers, etc., but she says it’s a “good” stress. 

I handed in my 2 week notice at my weekend job. Since Jackie’s pay has increased above what I make on the weekend, and I’ve been working just about every weekend for the past 11 years, I decided it’s time for a well-deserved break. 

Labs:

Nothing new on the kidney transplant/health front.

I did finally get back to walking every day. Between recovering from a month of sickness before and after the holidays, and the extremely cold weather, I stopped walking. But now, I’ve walked every day at work for the past week, and yesterday, I’m back to the distance I was walking last fall before getting sick. I feel the difference (for the better) already.

The highlight of the week is that my wife Jackie got a teaching job! She had been teaching in the local school district for the past 3 years, and lost her job at the end of the last school year (bumped for a political appointee, as her position was non-contract, and there is a lot of corruption in PA with teaching positions). She started working at a private school for special needs students. She worked in a classroom with an autistic adolescent as a professional assistant (for lack of a better term), and started back to school for her Special Ed. certification.  One of the teachers just left his position in the middle school-aged Emotional Support classroom, and she was hired yesterday for the job. It’s been a long time coming, and we are all thrilled.

Digger, our GoldenDoodle, has decided that he likes meat. He never was that interested in food before; he ate when he needed to. Last week, Kevin cooked sausage for supper on the night Jackie had class. I wrapped the leftovers in foil, as Kevin wanted to take them to his friend for him to try. Well, we forgot to take them, and when we got home, there was nothing but foil on the floor.

Today, Kevin came home from school to find that Digger had reached up on the counter, and got a hold of Kevin’s almost full 1 lb bag of Sweet and Spicy (VERY spicy) beef jerky. Needless to say, the only thing left was the empty bag (I’m sure Kelsea was right there eating as well). No adverse GI effects yet.

Digger is mischievous, but he’s the type of dog who is easy to forgive.  He’s actually quite smart,and some of the things he does are funny.

Suprisingly, the intestinal virus that I had back in December seems to STILL be making the rounds. At work, we are also starting to see influenza, and I think I heard on the local news that a strain of influenza that closed down a school north of here was different than the strains in the vaccine.

This is the first year in about 18 years that I haven’t gotten a flu shot; the Transplant Surgeons’ policy is that I need to be at least 1 year out from my surgery. I’m not at all worried, as there are far worse infections with the immunosuppression than flu, although I’m more likely to get influenza than, say, pneumocystiis or a fungal infection.

Not much going on from a transplant perspective. I feel so good, that sometimes I have to remind myself that I’ve even had one! I have labs and appointments on February 16.

I was doing so well exercising prior to December, but then I was sick for a few weeks, and between that and the weather, I haven’t been walking. Today, I started again, as I feel a difference not walking. Other than slippery or snowy conditions, I plan on walking every day.

I mentioned a little girl in a previous post, who is a patient in our clinic, who recently received a kidney transplant. The local paper did a feature story on her (not available online) a week or so ago. She is 6 years old and received a kidney from a relative (aunt?). She has Nephrophtisis. I don’t know a whole lot about this disease, but the article said that she would drink anything in sight (which is a symptom of the disease called polydipsia). She is reportedly doing great at this point. Prior to that, she was on peritoneal dialysis for a few months. (all information is from the newspaper).

In other news, surgeons have performed what is thought to be the first kidney harvest of a donor’s kidney through her vagina. Sounds rough, but the pain is more than likely a lot less, and recovery time a lot quicker.

I no longer blog at MyKidney; Krissi  has (or will shortly) take down the site. I can understand; a lot of the noteworthy posting is BEFORE and immediately after transplant. After that, you feel so much better and life from a medical perspective becomes fortunately boring.

On the home front, Jackie just went back to grad school. She already has a M.S. in Elementary Ed, and is going back now for Special Ed certification.  Her classes are Monday and Tuesday nights, which makes for a long day, in addition to the work she has such as reading, papers, etc. She was doubly busy these past 2 weekends, because a teacher where she works is out sick, and Jackie is filling in for him. Since the other teacher didn’t have anything done, she’s had to do lesson plans, establish a structured routine (it’s a middle school emotional support classroom), etc.

As for me, I’m still working weekends in the same home. There is another child that Brian’s family has that is in similar condition (trach, CPAP, feeding tube, numerous meds,etc). I did have a weekend off last month, but am working all this month. I’ll have to take a weekend or 2 off next month. I also have a vacation from my full time job in April.
In the meantime, I’ll be working so that the government will have enough to fund $100,000 worth of doorbells for a housing program in Mississippi.

For those of you who like Celtic Rock, check out some of the MP3′s of Stand Easy (with John Allan McLean). I now have all of his albums; awesome stuff!

Until next time….