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Mary Queenie
Member
Username: Haydenmm
Post Number: 1
Registered: 07-2013
| | Posted on Monday, July 15, 2013 - 10:44 am: | 
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This topic may have been covered before, however I am new to this forum and I am looking for some people that feel like I do.
I never have days where I feel great. I have good days and bad days, but most days I feel very tired, weak, sluggish, sleepy, kind of down, and just bad in general. Does anyone else ever feel like this?
I am very grateful for my kidney, but I hate feeling like this all of the time. I have mulitple health issues and it's just no fun. I am post transplant since 2006. |
Cora
Member
Username: Cora
Post Number: 502
Registered: 06-2007
| | Posted on Monday, July 15, 2013 - 02:07 pm: |
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I've been up and down too with many other health issues too. If you don't mind sharing, what are some of your other issues? I had diabetes until my pancreas tx 5 years ago. I also have stomach problems and anemia. I think the anemia and associated lack of conditioning have made me feel the worst. Although the barfing from the tummy trouble isn't fun either.
Believe me, I know it's hard. You almost feel guilty because you somehow feel that you should be feeling better. If only to honor the donation. I did find that vitamin C helped with some of the diabetes issues and made me a bit more energetic.
I do hope you feel better. If you give a few more details, some of us may be able to give some ideas as to what you might do.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008 |
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papillonbleu
Forum Leader
Username: Papillonbleu
Post Number: 2251
Registered: 10-2007
| | Posted on Monday, July 15, 2013 - 06:22 pm: |
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I have had some similar issues post-transplant mainly due to digestive problems and a trouble with remaining below a good weight. I have slowly redeveloped gastroparesis which means the stomach empties more slowly than a normal one would. It can make getting and keeping down the proper amount of nutrition hard. I am fortunate to have had a motility specialist move into my city who specializes in the temporary gastric neurostimulator which has helped me some with my symptoms as well as with weight gain although I need to still gain more. I have had some better days but can still have some bad ones, but I do have more hope now. I find that listening to certain music can uplift me and give me more energy than I thought I had. I also try to do some exercise even though I need to gain as not doing so could let me become weaker and possibly thus more tired. I hope you and your doctors are able to find some ways to help you feel better. As Cora said, if you tell more about your situation, hopefully someone can offer more helpful advice. You can always find a shoulder on which to lean here. I will keep you in my thoughts and prayers. Many hugs.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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Gene
Member
Username: Gene2x
Post Number: 38
Registered: 11-2011
| | Posted on Monday, July 15, 2013 - 09:11 pm: |
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I'm just about 2 years post transplant and honestly I've never felt as good as I hoped I would after the transplant. I eat well and exercise, but like you my good days are when I feel just plain lousy. Bad days I feel tired down to my bones and everything I pick up feels twice as heavy as it should and all I want to do is go lie down. Bad days are outnumbering good lately. None of my docs can give me a reason. I'm not anemic but my hemoglobin and hematocrit are at the very low end of the normal range. Maybe some of it's age related. I've given up wondering what's wrong, but do hope at some point it may get a bit better.
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match |
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Cora
Member
Username: Cora
Post Number: 503
Registered: 06-2007
| | Posted on Monday, July 15, 2013 - 09:15 pm: |
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Gene, in your case you may still have some room for improvement. I didn't find that I hit my stride until I hit about the 3 year mark after my kidney transplant. Between anemia and sleep issues and the prograf which made me depressed, I didn't feel so hot. I got off the prograf (toxicity to t he kidney) and things improved. I took some meds for the depression and the sleep issues and things improved. I hope things go better for you.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008 |
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bill s
Member
Username: Bill_s
Post Number: 114
Registered: 08-2011
| | Posted on Monday, July 15, 2013 - 11:22 pm: |
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Gene, you took the words right out of my mouth! I have the exact same symptoms! I have been seeing a psychiatrist to try to get back to where I was the day before my kidney transplant. I am unaffected by caffeine and drugs that act similarly (Ritalin, adderall) so they didnt work and will try Provigil along with venlafaxine in the next week. I am also just getting off Tacrolimus(Prograf) and replacing it with Zortress with no change in my feelings, strength or fatigue thus far. I'm 76 so I don't want to wait longer for my body to adjust so I'm being aggressive in looking for a possible solution. I'll post any changes I notice. My rear muscles are giving me grief and from reading it seems that it may be from sitting too much, even though I force myself to walk 4+ miles, 3-4 days/week on a treadmill. Hope we are able to overcome our common ailments. Please keep us posted on your experiences. Best wishes |
Rita
Forum Leader
Username: Rita
Post Number: 939
Registered: 06-2003
| | Posted on Tuesday, July 30, 2013 - 06:30 pm: |
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It is very frustrating, I hear you. We say what am I doing wrong yesterday I felt this way and today I feel this way. Am I getting sick, is it this medical issue or is it that one.........on and on.....one can make themselves nuts trying to figure out with our bodies. I think for me a lot of it is the comparison I do in my head, I had a high bar and if I didnt do the things I was able to do a year ago, a week ago or a month ago I would question.....what is going on.....why... Now I learned with age to accept the bar of each day and to ask for help and not expect to have this high bar, and the days that I do great. So I take them as they come now and do less analizing. I know this doesnt help you be less tired or etc but sometimes it helps to accept and not fight. But this is what works for me and I am not you. Wishing you the best
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Alaskagal
Member
Username: Cheathers
Post Number: 150
Registered: 06-2011
| | Posted on Wednesday, July 31, 2013 - 02:32 pm: |
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Well shoot, I guess I had better weigh in on this, if for no other reason than to say, thanks all for sharing, because a transplant patient alone out there in the world (I also have PKD) can feel pretty much alone, and like "I guess I am just not doing enough"... And honestly, I don't know how much MORE I could clean up my diet, and I do as best I can to exercise, getting outside, walking and (trying) hiking, gardening.
Yes, and you start thinking that it might "all be in your head" because "normal" people can't, or won't listen because they don't have any context to understand.
I don't take any bp meds because I am so careful with my diet, but finally after trying EVERYthing, I am doing Ambien. Sleep is a wonderful thing.
Still waiting for that slow boat from China for results of the CMV test. Honestly, I have been waiting on and off for a month.
I am doing a lot of "Mindfulness" meditation. Trying the best I can to be "present" rather than longing for the healthy days, or dreading tomorrow. It DOES help, but yes, it's hard to not be distracted by all the ailments, huh?
Blessings all, here's to hope and life, one day at a time.
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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