CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

I’m now 8 months post-transplant, and despite a sick December, I’m doing great once again. Appetite back to normal, only sporadic kidney pain (in my “native” kidneys), and my labs are back to what they should be. I don’t have access to them now, but on my labs this past Tuesday, my creatinine is 1.3 (I usually run 1.2 to 1.3), hemoglobin 12.9, white blood cell count 5, CO2 normal at 23 (had been 17), and my Prograf level is 7.7 (they want it 6-8).

Current transplant meds/immunosuppressants: Prograf 3 mg in am, 2mg in pm, and CellCept 500 mg every 12 hours. I’m also back on Prilosec, and take a bunch of vitamins as well as a baby aspirin.

I’ve noticed more hand tremors lately. After talking to someone who works in our building and also had a kidney transplant for PKD (small world), she has tremors as well, and was told it’s from the Prograf, even with it being a normal level. Again, if that’s the worst I have to deal with it, I’ll take tremors over dialysis any day.

I also had an abdominal ultrasound on Tuesday, which was ordered right before Christmas when I was having the kidney pain and abdominal pain. I asked my doc if it was necessary, and he wanted it done, even though I’m feeling fine. The ultrasound showed some semblance of a kidney on the right, and nothing but cysts where my left kidney was. My gallbladder was fine (no stones), and I got to see my transplant on the screen.

This is the first I’ve gone more than a month between doctor visits with the transplant surgeon, but that’s ok; I’m stable enough to do that now.

In other news, the child I take care of on weekends was in the clinic today very briefly, and was leaving via ambulance within 20 minutes. He looked absolutely terrible, as he probably has a bowel obstruction. He’s on a ventilator now, but I haven’t had an update recently. I guess the docs are giving him a 50/50 chance of surviving, but based on when I saw him today, I would say those are very generous odds. I won’t go into too many details, but he is 15, has severe brain damage from “shaken baby syndrome”, but has been well cared for by his adopted family.

I’ve been doing a lot of computer work lately. Kevin sold my computer to a friend, so I had to redo the hard drive on that; I had to get set up Kevin’s computer to access the wireless router, and finally, I had to redo Kevin’s OLD computer for myself, since it had a virus. He lost his Windows disk, and I wasn’t about to spend any more money on it, so I installed OPENSuSE, a Linux operating system. I really like it, but there’s a rather steep learning curve to it. Advantages: it’s free, and so far, there are no viruses to attack it, as you must type in a password before making changes to the system.

I’m actually off this weekend, for the first weekend since late October/early November, and I’m looking forward to it. There is a gun show locally that I’ve always wanted to go to, but never took the time to go, so I plan on going there. I also plan on just relaxing, and possibly going to the movies to see Gran Torino. We saw Marley and Me a week ago, and both thought it was a great movie, except for one part that was sad.

It’s already been 9 weeks since my kidney transplant. The only “issues” I’ve had is the current low white blood cell count (Neutropenia), some arm pain for the first few weeks after the surgery (most likely from the positioning while under anesthesia), and some minor side effects which have all but gone away (hand tremors from the Prograf and diarrhea from the Magnesium and CellCept).

I have noticed that the Prograf hand tremors are much improved. The surgeon told me I could stop my Magnesium, but I have continued it (3 tabs/day), and I think that it has helped. The hand tremors could be mainly from the neuropathy, and worsened by the Prograf. Anyway, they checked my Magnesium level on June 25, and it is normal, but not by much, and that’s even with 1200 mg/day of Magnesium Oxide.

I did cut my Valcyte back to 450 mg once a day (from twice a day), but it may take a while to see how much that will increase my white blood cell count.  The other “culprit” with the white count is CellCept. One of the side effects of that is “severe neutropenia”, which, if it’s going to happen, will occur between days 31-180, and may require a dose adjustment or temporary halt in therapy. My guess is that since my dose of CellCept is already lower than most (from what I’ve seen, 1000 mg twice a day is common, while mine is 500 mg twice a day), they didn’t want to mess with that. Plus, Valcyte is to prevent CMV, and my last test showed that I don’t have it (despite the CMV+ kidney in my CMV- body). 

I added a ClustrMap “widget” to the right hand sidebar. It tracks visits to this blog on a world map, and is updated daily (if you click on it, a larger map will appear, making it easier to see more specifically where visitors are from). So far, after 2 days, people from 3 continents have looked at my blog, although Antarctica is not yet represented

As I mentioned, I’d love to get out and work in the yard. The other day, I found out that I’m not alone in that sentiment. A doctor I work with was recently diagnosed with Lymphoma and is undergoing chemotherapy. We were talking, and he was saying that it’s a tough adjustment, because he feels lousy for the weekend after chemo, the steroids give him insomnia, and he can’t work outside in the yard. So, I’m certainly not alone (chemo suppresses the immune system as well, so he has to be careful about opportunistic infections).

Another co-worker asked me some questions about her father. He’s 2 years older than me, and has diabetes for 28 years (not sure if Type I or II). He has low vision, poor hearing, and his kidney function dropped within a week from 28% to 21%, his Hemoglobin A1C is ~14 (that’s not good), and he was put on a 1 liter a day fluid restriction due to edema. He has a fistula in, but won’t go for a transplant evaluation and is also extremely hesitant about dialysis. I told her that he can call me go talk about it, as I can certainly understand his apprehension about dialysis. The advantage he’ll have is that he will go to the same dialysis unit I went to, and the staff and patients there are all very nice, making it tolerable. Even though his GFR is 21%, he is already building up fluid, so my guess is that he will need dialysis very shortly. He’s stuck in the house, so maybe getting out 3 days a week will actually help his mental status.

Accident update: I was talking to Derek’s step-father this morning, and told me that Derek WASN’T wearing a seatbelt, but that if he was, he would have been decapitated. We drove by this morning, and there were skid marks, and I saw the trailer he hit (no cab attached). It was sort of a “fifth-wheel” type trailer, with the front elevated above the rest of the trailer. Here is a pic in the local paper of the Dodge Nitro that Derek was driving (clickable thumbnail):

My new kidney continues to work flawlessly. I haven’t been as good as before with fluid intake, but WILL be back on track today.

My weight is unchanged, BP and temp are stable,  but my input and output are less.

I did have 3 episodes of diarrhea yesterday (thank you, CellCept), I continue with intermittent hand tremors, and hardly slept last night (Prograf?). But those are minor annoyances that I can live with.

I have routine lab work tomorrow (“the big 3″-blood count, basic metabolic panel, and Prograf level).

On Friday, I have a Urology appointment to remove the stent between my bladder and new kidney. Prior to that, I have a nurse appointment in Nephrology to get an IV infusion of Venofer (Iron).

Going away for the weekend did all of us a lot of good, but it’s time to get back into my routine. I thought that I would have a hard time being away from work, but I’m actually keeping quite busy. I plan on resuming my weekend job when I return to my full time job, except I’ll probably only work Sundays for August, and in September, go back to Saturday and Sunday.

Everything is going well. I have minimal incision pain, I’m getting around even better than over the weekend, and the arm pain is much improved (no Tylenol #3 in over 24 hours). The only issue is diarrhea, and I’ve narrowed that down to the Magnesium. It occurred about 90 minutes after my dose yesterday, so I skipped the evening dose, and I’m fine now. For the long term, I’ll check to make sure that taking fiber is OK, and I’ll start that up. You might be wondering why fiber? Well, fiber works by absorbing fluid in the intestine. If you are constipated, it will soften the stool by absorbing liquid, and if you have diarrhea, it will absorb the excess (think Kaopectate; all that is is fiber).

Vital signs today are decent. BP still good (although systolic a little higher today), ins and outs just about even (although the numbers are deceiving; I had diarrhea 3 times yesterday, and I estimate another 800-1000 cc via that “route”), temp good, and weight down a pound. I notice less leg swelling today.

I will now keep my Daily Vitals spreadsheet as a page that can be access via the link in the upper right corner of the blog.

I got a call from Kim (the Transplant Nurse) and my Prograf level is too high (10.7), so I’m decreasing to 3mg every 12 hours (had been 4mg in am, and 3mg in PM). That explains the tremors in my hands.

The one thing I forgot to mention yesterday: the Transplant Nephrologist was floored when I told him that I had gastric bypass surgery, and weighed 400 lbs. He said “I thought you were a fit person; I never would have guessed that!”. He also was optimistic, saying “it looks like you are getting healthier…your 40′s are healthier than your 30′s”.  I never thought of it that way, but he’s right; I’m off blood pressure meds (at least for now), I’m 200 lbs lighter than I was in my 30′s, I have better kidney function (albeit with a little surgical help ), and I FEEL so much better!

One other thing not mentioned. The nurse who I saw is very talkative (as are Jackie and I); we enjoy our conversations with her, as they are very informative. She was talking about the newer Liver Transplant program at Geisinger. There was a gentleman who received a liver there, yet the need for a transplant came on suddenly. He bought a bottle of Chinese Herbs (she didn’t say which) apparently for erection issues. He got through a portion of the bottle, and started feeling poorly. He went to see his doctor, and was LifeFlighted to Geisinger in liver failure, from just a PORTION of a bottle of an herbal supplement! That is why I DO NOT take any of these herbal supplements. There’s a much greater potential for liver or kidney damage due to them being essentially unregulated. It’s my opinion that anyone taking these is playing Russian Roulette with their body’s filtering organs.