Here is my Facebook update for today (the second update since i came home):
Hey folks time for a kidney transplant update. Sunday will my the month anniversary since my trasplant (and Saturday will be the month anniversary of my last dialysis session) and I’ve been home for three weeks.
I have been feeling very good and have been relatively active around the house. aAter the frist week at home I was able to start doing walks around the area. The incision started to get a bit more painful as the nerves started to grow back but still it was manageable. It was a relief when they pulled off the medical tape over the incision and it started to look like healing scar. I’m still waiting for a hole in my belly for a drain to completely heal and close up at the skin level.
When I left the hospital my lab work numbers on kidney function for creatine and BUN were high. The deceased donor kidney was taking some time to really kick into gear, which is normal for kidney that had been on ice for a while and experienced the trama from death of the donor.
At my twice weekly visits to the transplant clinic I was seeing a steady decrease in creatine, after peaking at 9.1 or so and finally today ended at 1.8 which is right in the expected range of 1.5-2! I hope to see continued change as much slower rate getting it down to 1.6 or maybe a tad lower.
So my kidney is now cleaning my blood at an acceptable level!
Now I’m starting to see low numbers on some minerals as a side effect of the anti rejection medicines, my phosphorus is low at 1.2 and magnesium is low as well. Both of those are minerals that dialysis patients need to avoid. Now I’m told to drink a coke a day to benefit from all the added phosphorus it contains. My potassium is high so I need to avoid the nuts and some other vegetables like tomatoes.
I’m doing ok on the medicines with some minor side effects such as insomnia and increased tremors in my hands. They are starting to taper some of the medicines and the prednisone which will help.
Next week I’ll start visting the transplant clinic once per week and I hope to go back to work on Monday the 21st. They are suggesting that I only go part time at the beginning as I might get more tiered then I expect.
I’ve been on short term disability from work (that is some form of insurance where the insurance provider is paying me a portion of my salary per week) and then I can use FMLA leave when I’m working part time. As always I’m very happy to have a stable employer with access to both health insurance (as secondary since after a period on dialysis you move to Medicare) and the other leave options.
Posted at: http://ihatedialysis.com/forum/index.php?topic=34003.msg516721#msg516721
Here are a few other updates from around then:
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August 04, 2017, 07:53:03 AM »
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Your inflection of your posts speaks volumes! ( if that makes Since ) You absolutely must feel better. Can you describe that ? Thank you!
First off I was doing good on dialysis, I have no other heath issue and still urinated a lot and I think I have some level of residual function helping me on the diet side. So mostly I was good lab wise with the renvela binders. PTH was high and not being resolved via Sensapar over the 8 months or so I was on it. I do think I was getting a bit tiered of the wait and was starting to feel it was getting too long, especially since I was called so often as lower level alternates it felt like something should have come up sooner – I was listed in August 2011. My clearance has been low for quite some time barely making 1.25 cut off and requiring repeatedly tests sometimes. If I was to start feeling poor I would have increase my time. Also given I was in my fourth year of dialysis I did start to think a bit about if I had a do over I’d probably should have done PD or Home Hemo both of which seemed good options during pre dialysis education but I stayed in center since I was receiving calls and it felt like I’d be transplanted sooner.
So post transplant the one physical change I’m noticing is I’m unable to nap as well as I did in the past – which leads my to believe my energy level is much higher. On non working days during dialysis (and for years before starting) I could enjoy a nice hour or so long nap in the afternoons and really good sleep then. Now even though I’m at home all day, and some nights I really don’t get much more then 6-7 hours of sleep I’m not really able to nap good. The few times I have napped it feels like its 15-30 minutes, not a long deep sleep. (At night I’m taking Tylenol PM.) So the plus side is it feels like I have more energy, the downside is a nice deep nap is missed.
Also my weight is down now. On dialysis I was right around 190, in the hospital I peaked at about 220! Now I’m seeming to settle at about 178. So that leads me to wonder if I was carrying more water than I thought, or if I did just loose some fat after the surgery. I’m also happy that on 60, now 50 mg of prednisone I’m not gaining weight. (I have lots of stretch mark scaring from when I was on high levels of prednisone well sick with lupus so I know what prednisone can do to the body.)
I’m up to doing about 4500 steps a day walking around the neighborhood with my wife. Previously well working most days I’d do just around 5000 a day with an occasional weekend over 10k.
I’m really happy that I went into dialysis and transplant with out other major health issues. I think that makes life and recovery much easier. My kidney damage from Lupus was done in the early 1990s and the damage slowly progressed over the years.
Also yesterday the clinic nephrologist talked a bit about when to get back to work. He says 4-6 weeks minimum post transplant with no work, or up to 3 months – I think he feels longer time at home is best but if you feel like you must be at work it could be shorter. (I have a computer based job, if in a more physical job the 3 months would be most meaningful.) But most importantly he talked about starting out part time during the first 3 month period prior to when they start taping the immunosuppressants. I hadn’t really thought about part time, but it does seem to make sense to lower the stress and just make sure you don’t overwhelm the body. Its good to have the framework on the clinic who provides guidance because when you are sitting around home it does feel like you could get back to normal with work but jumping in full time might take resources away from healing. I’m on short term disability from my job now which means an insurance company is paying me some portion of my salary and work pays nothing. If I go back to work part time I think that would be under FMLA where my company pays me for the hours worked and I use sick or vacation for hours not worked in an 8 hour day. Except I work in Washington DC which allows me to use unpaid leave if I prefer, in other areas unpaid is only available after you burn through all your leave. I like the idea of being able to use unpaid leave because that would mean I’m not zeroing out all my leave and will still have vacation for Japan! |
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August 07, 2017, 09:18:23 PM »
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Creatine was 2.1 today (down 0.6 since Thursday)! Hopefully we will see that continue to move down more before it flattens too much, the change is slowing from over 1.0 to 0.6 since Thursday. I will start weekly checkins starting next week at the month post transplant date. Phosphorous is low 1.6, need to drink some coke, Potassium is higher at 5.1 so need to cut down on the nuts and potatoes. Magnesium is still low so taking 400 mg *2/day rather than 200, also Bicarbonate is low so moving those to 325 * 2/three times day from /twice day.
I’m starting to have some hand tremors that are more significant the the little tremors I had pre transplant but they think that will resolve itself as they taper the Envarsus (was 10 now 8 mg) and Prednisone (was 50 now 40mg). Tacrolimus had been 9.5-7.2 but now is up to 11.1 which would contribute to the tremors as does the Prednisone.
The drain hole is looking good, in a day or two I should be able to cover it with a bandaid rather than tegaderm and gauze.
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August 11, 2017, 08:15:24 AM »
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August 13, 2017, 05:30:47 PM »
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Walked 10,000 steps today, about 4 miles. That is about the max I can do right now. Went out to Great Falls on the Maryland side to see the rapids and mostly walked along the old tow path.
Pre transplant I walked about 4,000 to 6,000 steps on weekdays as part of my commute and walk to lunch. The most steps I walked in a day recently was 17,300 in Barcelona in June.
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August 16, 2017, 05:57:30 PM »
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Congratulations. Looking forward to your report on the stent removal.
It happened today and was not that bad. I did take a Tylenol and an Oxycodone before hand (they recommended Percocet an hour before). It probably took two hours of waiting and prep and more waiting. When they put in the camera and grabber it went very fast. It was iraitable as it passed through some mussel like closure but that went fast. The documentation described the stent having a clip at each end but instead it was really just a piece of what looked like a green plastic coffee stir stick with twisted end to make some sort of clip.
Yesterday my creatine climbed bit to 1.9 but my Tacrolimus levels (envarsus) were also higher at 12, they had changed that level on Monday of last week so they will wait until next Tuesday to re-adjust it (last Thursday it was down at 8.x). I’m still hoping that creatine will come down bit more. Potassium is down a bit so that is good, I think its not considered high now. I’m now on once per week clinic visits and hope to go back to work six hours per day on Monday.
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August 16, 2017, 10:21:57 PM »
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How long post-transplant do you have to wear a mask in public?
When we asked about masks they were dismissive about it and really promoted not being around risks. No concerts or large gatherings for at least six months but church would be ok if you sat out of the way and moved if someone was coughing (I assumed that was a concession they made feeling people would do better if they had church in their life if they wanted it). Kids are germ factories so stay away from them. Based on that we did go to ikea four days after returning home but that was a nit scary with the various kid dragging families. I’ve done daytime grocery trips and two lunchtime meals out. I’m not going to usher at theaters for at least three months but will go to one show and opening night party in early September. This weekend we will go to a beer festival but I will not be drinking and probably will generally stay out of the crowds.
I think now it’s ok to be around more people but if someone is sick I should remove myself. No public transportation for first three months so I have to drive to work.
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August 29, 2017, 07:37:11 PM »
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Good news today, week before last my creatine had risen from 1.8 to 1.9 with high Envarsus/Tacrolimus at 10.7, that had fallen last week to 9.4 with a creatine of 1.7, but then this week my creatine was 1.4! So thats below the target goal of 1.5 to 2 that someone finally told me at some point! Lets hope it holds.
Otherwise the minerals are poor but they should clear up with time. I’m taking 3 sodium bicarbonate pills at 650 mg three times and thats now increased to 4! Those generate burps when i take them but thats minor. Prednisone was dropped 5 mg to 25 last week, sounds like it will be dropped again next week.
I went back to my desk job last week, starting at six hours a day (with two easy hours of meetings each day) and this week full time. So things are going good…