Natalie's update

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Natalie's update

Postby nycpetit » Tue Aug 31, 2004 2:46 pm

So, I have seemingly settled at a creatinine of 1.0. My urine output seems to have stabilized at about 1500 to 2000 cc a day. Does that sound about right? It was very high post surgery, and when I first got home because I was so full of fluid post-op and they had to give me some Lasix to move it along.

My potassium has gone up a a little from the Prograf, but they lowered it to 3 in the am, and 3 at night from 3 and 4 and that helped. The Prograf level was too high and somewhere like 14.5 in my blood. They did say they feel they'll need to lower it again. And it's not going to be my maintenance. My maintenance will probably be about 1.5 or 2 in the am and evening.

My hg is still too low. It was 9.3 prior to surgery with 10,000 units or EPO a week, and then only 6 post surgery because I lost a lot of blood. They thought to do a blood transfusion, but then decided not to do that, just less risky I guess to avoid it. They figured with my age, and otherwise good overall health to try and avoid it. It's gone back up to nine so far, with 20,000 units a week. I am thinking that some of that will resolve on it's own as I get further out from transplant, no?

I finally settled the biopsy dilemma for all involved (myself, my Mom, and the doctor). If my creatinine goes above 1.4 since I seem to have stabilized at 1.0 then we'll do a biopsy. I am cool with that. In the meantime it means I do not have to do the protocol biopsies. And also, it would be only if we couldn't find a reason for the rise, like medication increase, or dehydration. I felt that was satisifactory, what do you think?

As of next week I only have to go to the clinic once a week, it will already be one month then!! It seems hard to believe, but now I know what people mean by recovery time. It does just take the steam out of you. I haven't had too many side effects from meds, just occasional stomach pain, and sort of like mygalia, like a pain all over in the joints. I am guessing that was partly from meds, and from the Prograf being too high. And the right leg, the side the transplanted kidney was put in, has been very sore, I suppose from compensated walking, and from the fact that my right foot was swollen beyond belief, but of course they still encourage you to walk post-op day one. It literally turned blue from the pressure, even after the swelling was gone, and it's been very throbbing at the end of the day.

Has anyone found they had body aches post transplant? And was any of it medication related? I'm still not quite at three weeks post-op so I assume it's part of the healing process. I've been walking tons, like sometimes four to seven miles a day. By the end of the day, the muscles aches can just sort of make it impossible to sleep. Like I'm drowsy but have insomnia.

Also, I found that hot water makes my skin feel tingly, again I think it might be the Prograf.

The doctors are happy with my function however. I am doing well, things are stabilizing, and I thank my lucky stars everyday that I've been given this gift. Another life. But most of all, I wish it for ALL of you here who are hoping for it. As much as it is an operation, you'll almost welcome the experience, because it's such a gift, and it just changes something in you, in a good way.

So just to make myself clear, I want this for ALL of you. And I think of all of you here each day that are in that "no-man's land." Don't be afraid of the surgury, it's really not that bad, and the time goes quickly where you really feel compromised. It's exciting in an odd way.
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Re: Natalie's update

Postby JMan » Tue Aug 31, 2004 4:09 pm

Hey Natalie...

That all sounds pretty good so far. The Biopsy 'settlement' sounds like a good plan to me. I wish I'd thought of that with my transplant.

Hopefully your kidney will kick in with its own 'EPO' soon and you won't need any, or , if any, not as much as 20 000 (thats a good slug of EPO:D:D)
And yes the hot water, tingly thing is quite weird with some of these drugs.. I had that with MMF (CellCept, which I stopped).

Everything sounds like its going GREAT:D:D

Hope it stays that way.. HUGS
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Postby Anne in Va » Tue Aug 31, 2004 11:09 pm

Hi Natalie,

Sounds like you are coming on very well. Things should resolve even more over the next two to four months.

About fluid, your output should be about the same as what you take in, give or take about 500cc. If you are working up a sweat while walking you will be losing some fluid there also. Just keep pushing fluid because, as you know, it stimulates the kidney and also helps move the meds through your system.

I also had raised K because of the Prograf. Your hgb will most probably resolve in time. I assume you are also taking iron as the epo needs iron to work. Post transplant, I had levels similar to you so I guess we are normal!

Glad you resolved the question of biopsies. Sounds like you have a reasonable plan in place. Well Done!

I remember having some aches but that has resolved pretty much. Think it was from the time the Prograf was higher. My feet and fingers get stiff overnight but age may play a part in that also! I have had some aches on and of on my right side and leg. I had numbness which has improved over the months. It seems as the numbness lessens then I would have discomfort in the area where the feeling came back. Just a case of the nerves regenerating.

I am so happy you are doing so well. You will just keep getting stronger and feeling better over the next few months.

You are blessed, Anne
Anne in Va
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