CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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.

The main issues since yesterday’s post are arm pain and nausea/vomiting, but from a kidney-standpoint, everything is great.

Today’s vitals: BP 132/68, Temp 97.7, Wt 214, and yesterday’s ins 2960, and outs were 3375.  BP yesterday was 138/78, and wt was 4 lbs higher.

The reason for the changes probably have to do with my stomach. I vomited 3 times yesterday, and hardly ate much at all. Remembering back to my last appointment, the doctor had stopped my Pepcid, because he prefers to use Prilosec (they are from 2 different classes of drugs; Pepcid is an H2 antagonist and Prilosec is a PPI). He said that if I had stomach problems, he would Rx Prilosec. So, last night I picked up some over the counter Prilosec, and away went my stomach problems! I’ve actually had nausea for the past few days, and not coincidentally, it started 2 days after stopping the Pepcid. So I obviously need something. I’ll get a prescription at my appointment tomorrow.

As for the lower BP; not sure if that is from losing weight or the Magnesium kicking in.

My arm continues to hurt, but mainly when I wake up; it wasn’t too bad during the day. Tylenol #3 helps, so I do take that at night.

We had family over for a cookout yesterday. It was a little chilly, but the rain held off until it was over. Our dogs had a blast; especially Digger. Kevin was playing catch with my sister-in-law’s boyfriend’s son, and Digger thought they were playing with him. If one of them didn’t catch the ball, Digger was right there to scoop it up, and proudly ran around the yard with it in his mouth! Chester, despite his arthritis and rotundness, would bark when the ball was thrown, and make a half-hearted attempt to chase it.

Before we got Chester, he lived at the home I work at on weekends (I do private homecare on the side). It’s not unusual for there to be several Amish buggies go by on a Sunday. Chester would run parallel to the buggy as it went down the road, and barked at it the whole way. I’m surprised that the horses were never spooked!

Tomorrow, I have labs at 12:30, so I have to postpone my evening Prograf dose to 12:30 am, so that it is taken 12 hours prior to blood work. After that, I have an appointment with the Transplant Nurse and Surgeon, and then on to the Transplant Nephrologist.

The Transplant Nurse called yesterday with my Prograf level: 6.6. It was 3 when I was discharged last Thursday, so it came up nicely. Dr. Maloo does want it in the 8-10 range for the first 3 months, so I will change my dose to 4mg in am and 3mg in pm (had been 3 and 3). So far, no side effects.

I also called and cancelled my appointment for my fistula stenting for tomorrow. Prior to yesterday’s visit, I was adamant that I would not let the doctors “tie it off”, but after talking to Dr. Maloo, and having the explanation of it being a “high flow fistula”, and potentially causing heart problems down the road, I’m a lot more open to having it tied off in the future. I’m sure my right arm is out for a fistula if I need one in the distant future, but there’s always my legs (my mom had grafts in both legs when she was on dialysis).

One of the nurses in clinic yesterday was telling me of an 80 year old man that had a kidney transplant that lasted 27 years, and for a good number of years, had not taken ANY immunosuppressants! Of course, he’s on dialysis now. If I could get 27 years out of this one, I’ll be thrilled. I’d be in my early 70′s at that point.

My bp is creeping upwards. Last Friday, it was 132/64; today it is 138/78. Something to watch, but not really worry about. I will probably have to start on BP meds again, but what’s one more pill? Besides, if they put me on an ACE Inhibitor, they protect the kidneys, so that won’t be all that bad (e.g. Lisinopril). Up until about 3 months ago, I had been on BP meds for almost 20 years.

Yesterday, for the first time, my output (2900 cc) exceeded my input (2740 cc).

I think I might have had some damage to my shoulder in the OR. Every morning when I wake up, my right shoulder has a significant ache. This is the arm that I had the arterial line in my armpit; did they have my right arm extended out for too long? Rotator cuff injury? I’m not planning on making a big issue of it, but hopefully it will resolve.

Yesterday morning (actually, in the middle of the night), I stumbled into the bathroom, and as I was standing in front of the toilet, I heard a noise, and then saw the shower curtain move. Digger, our GoldenDoodle, was sleeping in the bathtub again, stepped out of the tub, and went into his crate to finish off the night!