On August 8th, it was 8 months. Things are still going well. My kidney is functioning well. I have made some additional observations that I thought I would share.
First, don't be surprised if you become depressed after surgery. I was depressed, but not until about 3 weeks out. After my family left and my husband went back to work. At the time, I thought I was just "enjoying" my time alone and away from work. But now I realize I was depressed and avoiding most all tasks...cleaning, fixing meals, bathing, doing laundry, returning phone calls, sending birthdday cards/presents and so on. My biggest regret is not returning the phone calls. thus far, people have been very understanding, but one person did take it personally. I wish I had known this could have happened.
Second, my hair has thinned. I see new 1.5" growth at the top of my head now so I think it's growing back. I have no clue why it thinned, but it wasn't severe. Nobody noticed except me and my hairdresser.
Finally, my ankles swell when I eat too much salty food or when I am on my feet a long time. Also, if I sit in a hard chair a long time...of course my legs are short so there is a lot more pressure on my legs since my feet often don't support my legs rather they hang from the chair. Does that make sense. Anyhow, there is a significant difference in the leg swelling when I make an effort to avoid salty food.
I think I mentioned before that I get shaky sometimes. I *think* it's from the prograf, but I'm not sure. Obviously, it's worse after some caffeine, but I'm not giving up coffee. Cola I can give up though. It's only bothersome when I am at work trying to type or when I am doing some fine work, like, say, plucking my eyebrows. :-)
The doctors have had to reduce my myfortic dosage from 720 to 360 twice per day and then to 180 twice per day. They did this because my white blood cell count was getting too low. It went as low as 2.5. The Nephrologist said this is a bad side-effect of the myfortic. I go in tomorrow morning for my labs so we'll see what the latest numbers indicate.
Today is my donor's birthday so my kidney is also celebrating! It's processing a celebratory beer right now! Happy Birthday Connie!
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5 comments:
my mom had a very similar experience post transplant. she was depressed, she didn't feel like herself because all the meds were really screwing with her body. most of all, between the prograf and prednisone, she shook ALL THE TIME. and was anxious.
they eventually switched the prograf to rapamune and downed her dosage of steroids a bit. it helped IMMENSELY.
so hang in there. it will get better. pretty much her only problem now is "prednisone skin."
good luck!
It's so good to read something from you. My dad is having his transplant in 3 weeks! He's getting nervous...and so am I.
Heather,
I've been bad at blogging for the past couple of months. I hope you had a good beer. One of my "side effects" is that I crave beer. I blame that on you! LMFAO What a great problem to have!
Love you!
Connie
Hi Heather,
I just found your blog tonight. I have a hereditary kidney disease that I inherited from my mother's side of the family. It is a nephritis that they thought would manifest only in males (Alports Syndrome). My twin brother had a kidney transplant 11 1/2 years ago from my father. He is still doing very well thank goodness. They tell me that mine is FSGS that resulted from a hereditary nephritis.
I have just begun the process for being placed upon a list for a transplant. My creatinine is at 3.2 (has gone up quite a bit over the last two years) and my GFR is at 17. I am fatigued a lot of the time and it is extremely frustrating. I am struggling quite a bit.. worrying that friends and family will start to avoid me because they don't want to deal with this type of situation. I know that sounds funny and people are plenty nice to me right now, but they just don't "get it" and I know I shouldn't expect them to. In the past, friends have told me that they would help me and give me a kidney, but I know they are relieved when they know they are not a potential match because of blood type... etc. I also don't want to ask as it is a HUGE sacrifice. The doctors tell me (and I know that you know) that a live donor is much better.. I am also trying to avoid dialysis for obvious reasons. Anyhow... I am usually a pretty patient person who does not anger easily.. and it ticked me off when a friend of mine from work (after mentioning that I was trying to avoid dialysis) said... oh ya.. my friend is going the dialysis route.. as if it was "no big deal". I know that people should not have to understand.. Why does that anger me? Dialysis is a huge procedure and scary.. I watched my brother go through it for 9 months and it really SUCKED.
Anyhow.. what I really wanted to say was that I appreciate your honest and up front blogs... they ring very true.. I am happy that your transplant went well and you are doing so well. I know it is a big life change.
Warmest Regards,
Tracy
Hi Heather ~ just noticed on Feedjit that you checked my blog yesterday and traversed back thru time to this post of yours from last year...
And a serendipitous read it is for me, since I am about to return to work at a job I love (at least part time) and feeling down about the whole transplant recovery, things I had hoped to do while recovering at home by myself... and just generally not wanting to do anything but veg out.
I think you hit the nail on the head, feeling depressed and not wanting to do anything... this is, I think, the letdown phase... we've been so psychically stressed for ages now and the hope for a life with less problems looms ahead of us, hopefully.
I am 6 weeks post transplant and this same sort of "depressed" thing is happening to me... and just last night my wife and I had a talk about her corresponding "care-taker burnout" and she is about to start directing me to do specific things during the day...
So, how did that phase of healing word out for you... since it has been so long now... if you don't mind sharing? JN
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