| Author |
Message |
Alinds
Member
Username: Alinds
Post Number: 39
Registered: 09-2010
| | Posted on Wednesday, October 20, 2010 - 10:45 am: | 
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I am 12 weeks post-kidney transplant and have been having some strange symptoms. It is really hard to describe. I feel as though I have an electric , vibrating, shaky pulse that runs through my body from time to time. I feel it mostly in my torso and it seems to start in my back and then "wrap" around me. It only lasts for a second at most, but it can occur frequently when I am active.
I also feel physically drained from almost all activity...like my muscles have become very weak. I can do one activity (took my son to pre-school this morning) and then I need to rest. I am wondering if this is usual or if most people have felt stronger sooner. |
sslgot5
Member
Username: Sslgot5
Post Number: 19
Registered: 10-2010
| | Posted on Wednesday, October 20, 2010 - 10:59 am: |
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"the shakes" as I call them, that I get, are due to the prograf. Are you on prograf? I know my shakes feel like that.. Like they start in my back down my arms and sometimes my head starts trembling ever so slightly, it doesn't last long and comes and goes. Mine come mostly in the morning, although I've had them happen in the middle of the day or night. I am six months post kidney transplant. I know the times I've felt physically drained like I couldn't even lift my arms or stand up, was due to my blood pressure dropping.. How's your blood pressure, are you on new meds for blood pressure?. Maybe look into that.. Those are my two cents anyway.. Good luck, God bless.. It does get better; at six months I'm feeling better than ever (if I could get rid of these UTI's then I'd be at 100%)...
| Come celebrate with me that every day something has tried to kill me and failed. |
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Alinds
Member
Username: Alinds
Post Number: 40
Registered: 09-2010
| | Posted on Wednesday, October 20, 2010 - 05:38 pm: |
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Thanks for your reply. Yup, I'm on prograf. That describes my symptoms perfectly.
I am no longer on BP meds (after 15 years of being on them). My BP is pretty low, which might be why I sometimes get dizzy when I stand too.
Good to know that it keeps getting better! |
Morley905
Member
Username: Morley905
Post Number: 58
Registered: 07-2009
| | Posted on Thursday, October 21, 2010 - 01:16 pm: |
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The "shakes" are very normal shortly after Tx. As you progress post TX, the Prograf dosage will be lowered as you are most vulnerable to rejecting the new organ in the first three months. The shakes are as a result of high prograf dose. I started with 5 - 1mg caps twice daily and I'm now down to 3 - 1mg caps and my Prograf levels are between 6 - 8 which is where my transplant doctors want the trough to be.
Stopping the BP meds will cause the dizziness when standing at first and that too will go away. Try eating salty foods which should help. When the dizziness happens to me, I eat pretzels and it fixes the problem until the next episode. Good luck!!
| Simultaneous Kidney/Pancreas Transplant |
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Alinds
Member
Username: Alinds
Post Number: 41
Registered: 09-2010
| | Posted on Thursday, October 21, 2010 - 01:55 pm: |
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Thanks Morley. I think I am just someone who feels a lot of reactions to drugs. I only take 4 mgs of prograf daily and my trough is at 11. I also did an experimental stem cell transplant form my donor and am expected to be able to go off meds completely after one year. It was a risky procedure but I decided to do it because I have always reacted very strongly to meds, and generally feel lots of symptoms.
I also have some stiffness in the joints in my hands and tons of symptoms of neuropathy...burning and tingling in my hands and legs and feet. I experienced NONE of these things before, and have no other health problems other than kidney disease. I think the porgraf is really doing a number on me, but I am getting used to it and feeling better week by wekk. So glad I can ask questions here. It is very helpful. |
Morley905
Member
Username: Morley905
Post Number: 59
Registered: 07-2009
| | Posted on Thursday, October 21, 2010 - 08:11 pm: |
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Alinds, its sure sounds like you are very sensitive to Prograf with a trough of 11 and only taking what I take and I'm 2 yrs post Tx. A trough of 11 is high and when my trough was 10, I felt the tremors. If I'm not mistaken, neuropathy is another great thing that goes along with Prograf. It took me two years after my transplant for my body to adjust to the meds.
The stem cell transplant sounds really interesting and good luck with that. I've read about research that is going on where the bone marrow of the donor organs is transplanted at the same time. The theory is that there would be no need for immune supressant (sp?) drugs, I discussed this research with my transplant Drs and they indicated that the possibility of this actually happening is along way off.
Hope the meds are not too ruff on you and the stem cells let you get off them soon.
| Simultaneous Kidney/Pancreas Transplant |
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Alinds
Member
Username: Alinds
Post Number: 43
Registered: 09-2010
| | Posted on Thursday, October 21, 2010 - 10:26 pm: |
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Hi Morley, yup, that's exactly what I did...the bone marrow (stem cells) and kidney of my donor were transplanted at the same time. I'm only the 8th non-related recipient to do this under this particular protocol. The study has expanded to add 30 more people, and they are now doing it with 2nd transplants too. My trough is high to avoid the possiblilty of GVHD, and they have a new protocol for plasmapheresis to help prevent GVHD as well so hopefully it will be safe enough to become standard of care one day. I'll keep you updated on my progress...but I have to say I am doing well. All my blood tests have shown that my body is making my donor immune sustem along with my own, so I hope to be off all meds by next July! |
Morley905
Member
Username: Morley905
Post Number: 60
Registered: 07-2009
| | Posted on Friday, October 22, 2010 - 10:44 am: |
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Wow!! This is fascinating. As it was explained to me GVHD is the real problem. There are no protocols for doses of immune suppressant drugs to prevent GVHD and save the grafts. I guess once the balancing act is determined, all transplants will be done this way.
Yes, please keep me posted on your progress. Lets hope that soon drugs like prograf will not be necessary. Isn't it funny, I asked about this exact thing two years ago and things are progressing that fast. Good luck Alinds.
| Simultaneous Kidney/Pancreas Transplant |
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Alinds
Member
Username: Alinds
Post Number: 44
Registered: 09-2010
| | Posted on Friday, October 22, 2010 - 11:43 am: |
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Maybe I misunderstood why my trough is high right now. I knew it had to do with both the protocols, but sometimes I assume things that might not be exactly right. I do know that the plasmapheresis protocol that was developed seperates the "facilitator" cells from the other blood cells, lessening the chance of GVHD (although not eliminating it). |
