| Author |
Message |
ivy
Member
Username: Norman1
Post Number: 69
Registered: 02-2012
| | Posted on Sunday, April 15, 2012 - 10:56 am: | 
|
well recently i can sleep for 13 hours get up and have to go back to bed after being awake for 4 hours....not sure really what to do anymore..i will be back to work tomorrow i can forsee that lasting about a day or tow before i have to phone in sick.
Am just tired of Drs not listening to me when i tell them how tired i am.
Suggestions please. |
keith elliott
Member
Username: Keith_elliott
Post Number: 249
Registered: 11-2010
| | Posted on Monday, April 16, 2012 - 04:02 am: |
|
It might be that the docs don't know what to do to help tbh.
I was told a story fairly early on about my then neph at Exeter and his cycling friend. His friend was always better at him at cycling, quicker times etc, until about 5 years after tx when his times started to reduce. My neph explained that it was only then (when he could beat his friend easily) and in the following years that he really started to understand the way it goes for us in terms of reduced stamina over time and the toll that the drugs take from us.
My renal psychologist told me to take afternoon naps when I could and to read about spoon theory :
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
I'm only at 8 years but I now can't play two rounds of golf in a day ..whereas immediately post tx I could easily. Now I get pretty tired after about 12 holes.
My guess is that reduced stamina is just the way it goes for us all over time. Maybe some folks are luckier than others and maybe there is stuff we can do that helps ... but if there is I'd love to know too!
sorry .. not much help really.
take care
Keith |
ivy
Member
Username: Norman1
Post Number: 70
Registered: 02-2012
| | Posted on Monday, April 16, 2012 - 12:30 pm: |
|
i agree with pretty much everything you have said keith only four years ago i was walking 3 hours a time over the hills, and going to the pub with friends now i am a pretty pathetic shadow of my former self.....my grandad runs circles around me he is 85.
from talking to some of the transplant nurses this seems pretty much the normal state of a transplantee this far out i am glad i partied hard after my transplant otherwise i would have felt pretty much cheated by life whereas i had a fabulous life and great group of compadres during my 20's and early 30's no regrets in that department.
Now it is an effort going to the shops and getting out of bed...i have asked the nephs to do something but there seems to be no answer.
to be honest i am thinking maybe i should just switch to sirolimus to stop the gout and then not have to take the allopurinol? |
BD
Member
Username: Bd1
Post Number: 124
Registered: 03-2009
| | Posted on Monday, April 16, 2012 - 04:26 pm: |
|
You have to rebuild your stamnia. I would get winded after walking a min in beginning. But I kept pushing on and on. Keep exercising and keep at it. Best of luck.
What medications are you taking to making you nap so much?
Kidney Transplant 3/08, 21 yrs old
IgA Nephropathy |
|
Rob C
Member
Username: Rob_c
Post Number: 283
Registered: 09-2007
| | Posted on Tuesday, April 24, 2012 - 10:20 pm: |
|
I seem to have less stamina than I used to have too. Not sure if it is because of my two kidney transplants or because I am going to turn 40 in a few months. I paddled my sea kayak about 12 miles the other day though. |
vince
Member
Username: Saintly1
Post Number: 10
Registered: 03-2012
| | Posted on Thursday, May 09, 2013 - 08:53 am: |
|
I have to kindly disagree with Rico Leech, I m 52 years old I received a kidney transplant on July 5, 2010 i Feel great, feel like 25 years old i exercise daily,
I believe transplant patients must slowly build there stamina back up,
there is Nothing holding US back but our old beliefs about what we can do
God bless everyone. |
cruizin
Member
Username: Cruizin
Post Number: 316
Registered: 09-2010
| | Posted on Saturday, May 11, 2013 - 09:41 am: |
|
Encouraging post Vince!
If I happen to be alive at 52, I hope I'll be able to say the same thing!
Received kidney Mar 16, 2011, from my brother! 3/6 match
St. Joe's, Hamilton, ON
Peritoneal dialysis Nov '08 - Mar '11
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008 |
|
Rita
Forum Leader
Username: Rita
Post Number: 920
Registered: 06-2003
| | Posted on Friday, May 24, 2013 - 08:39 pm: |
|
Hi Ivy, It has been a month since you posted your concern about your energy level in going back to work. How is it going?
|
Fred
Member
Username: Derf1958
Post Number: 3
Registered: 10-2013
| | Posted on Tuesday, October 15, 2013 - 01:18 am: |
|
My legs are heavy I’m aloof light headed. My physical medial issues from my kidney/pancreas transplant works fine and I’m grateful. However, at times I feel achy, weighted down, bloated. Joined a gym and work out not as much as I should. Sometimes its so bad I stay in the bed. I’m 55 and it scares me what’s down the road. |
Alaskagal
Member
Username: Cheathers
Post Number: 168
Registered: 06-2011
| | Posted on Tuesday, October 15, 2013 - 02:29 pm: |
|
Yes, I see this is being revisited. Same here. I am 65, and my favorite thing to do is just hike through the mountains and trails of Alaska. But honestly, my stamina just gets lower and lower. I keep hoping that I will be able to pull myself up, but I keep falling back down. I am SO GRATEFUL, but not very strong.
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
|
Cora
Member
Username: Cora
Post Number: 536
Registered: 06-2007
| | Posted on Tuesday, October 15, 2013 - 02:37 pm: |
|
I don't think I agree with Vince. Every transplant patient is different, especially in how we react to the drugs. I have tremendous issues with stamina and while I can improve with a huge amount of work, I am definitely not ever going to be again one of those people that can just hop on my bike and go all day. I have to figure out how to work within my limitations.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008 |
|
Boop
Member
Username: Betty
Post Number: 128
Registered: 08-2008
| | Posted on Saturday, October 19, 2013 - 10:49 am: |
|
I've just happened on these comments today, First let me say what are your labs like? I was feeling run down too, realized that my hemoglobin had been gradually dropping over the years from a 14 to 9! Believe me I "hit the wall" when it fell below 10! Also my sodium was very low due to diuretic MY blood pressure meds -losartan and chlorthalidone were causing some problems still making some adjustment but YOU need express that you don't like the way you feel . I was refered to a hematologist because of the dreaded fear of any immunosupressed patient -lymphoma. Relieved to find out it was not by a catsan. Now off the diuretic sodium now at a low normal, and 3/4 the dose of losartan.. My beta- blocker changed to coreg and my number are improving now working back from my deconditioning it's a process now about 15 months since the lowest point Hopeing this helps in your journey to an abundant life!
Boop
polycystic kidney disease
living organ recipient 9/30/04
Lifelink/ Tampa General Hospital |
|
Hostess Risé
Board Administrator
Username: Rise
Post Number: 17893
Registered: 05-2003
| | Posted on Saturday, October 19, 2013 - 02:20 pm: |
|
Just read this thread and noticed that there was a spammer involved named Rico Leech.
His post was deleted.
sorry
|
bill s
Member
Username: Bill_s
Post Number: 170
Registered: 08-2011
| | Posted on Thursday, November 06, 2014 - 08:09 pm: |
|
I just came across an article on the study of veterans with Gulf War Syndrome where their symptoms included fatigue, muscle pain and weakness as well as decreased cognitive function and gastrointestinal and skin problems. They were given coenzyme Q10 which helped about 80% of them with these symptoms. I'm experiencing the first 3 of these. My blood tests are all normal although no one has tested me for my CoQ10 level. Has anyone tried taking this? It affects levels of some other drugs so it should be taken with your TX teams knowledge so those levels could be adjusted. |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18104
Registered: 05-2003
| | Posted on Friday, November 07, 2014 - 11:04 am: |
|
Interesting! I recently bought Coq10 from Swansons - a trusted company and on certain days I muscle test strong and other days test weak -meaning I should not take it. So I do not take this supplement. This does not mean it is not good but for me it could mean several things- perhaps my body makes enough naturally or perhaps I am already taking other supplements and my body cannot process another supplement meaning it could be overwhelming my system. Whatever the case is, if I test myself and I get a no response I do not take a new supplement.
I test several times per day whenever I want to take any supplement. I believe my diet is so filled with healthy nutrients that I sometimes do not certain supplements.
I can tell how much magnesium I need within a day and then test for how many I need at that moment so what I do is precise for just me only.
I would talk to your doctor and see what they say. I know of only one person who got permission to take coQ10 but I have lost contact with him. He said it helped him with energy.
|
bill s
Member
Username: Bill_s
Post Number: 171
Registered: 08-2011
| | Posted on Friday, November 07, 2014 - 01:20 pm: |
|
Thanks for your reply. I found that the level of CoQ10 can be measured in the blood so I'll check with my doc to see if this can be done and if so, what the acceptable range is. If you think of any other measurable substances in the blood which are known/suspected of causing fatigue, muscle pain or weakness when not within the normal range of values, please let me know. I will try to get more info on them.
My TX was in Feb 2011 and my pain, fatigue, weakness started about Mar 2013. Since then I've tried a number of antidepressants and "uppers", stopped taking prednisone and permanently switched from tacrolimus to Zortress about 3-4 months ago, all without success. Recently I reduced my lovastatin from 20 to 10 mgs/day with no obvious changes noted yet. |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18105
Registered: 05-2003
| | Posted on Friday, November 07, 2014 - 04:23 pm: |
|
Hi Bill
Ask your doctor if it is ok to take Apple Cider Vinegar (a small amount) into a full glass of water along with some raw honey.
Not all doctors are ok with healing remedies. If you have issues with potassium then I would not try it because ACV is very high in potassium.
A very healthy diet is so important. Getting the right amount of sleep will help your body to heal as well.
|
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18106
Registered: 05-2003
| | Posted on Friday, November 07, 2014 - 04:40 pm: |
|
Went to google and typed in Apple Cider Vinegar and drug interactions and found this
http://www.webmd.com/vitamins-supplements/ingredientmono-816-apple%20cider%20vinegar.aspx?activeingredientid=816&activeingredientname=apple%20cider%20vinegar
A little bit of something good can be very good but too much of something good can be very bad so always check with your doctor. If you do not feel comfortable with your doctors response find another doctor who will listen to you.
|
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18107
Registered: 05-2003
| | Posted on Friday, November 07, 2014 - 04:57 pm: |
|
Bill
Most tx centers will tell you not to eat raw honey so be careful. Just because I do something does not mean it would be good for you. I only buy organic Manuka honey.
|
bill s
Member
Username: Bill_s
Post Number: 172
Registered: 08-2011
| | Posted on Friday, November 07, 2014 - 07:55 pm: |
|
Thanks Risé, but I'm not a honey type of person - except on Baclava type deserts.
I use different kinds of vinegar as I'm a try various foods kind of guy. Also, as I mentioned above, all my blood levels of the more important vits, mins, nutrients, etc., are normal. I even stopped taking iron supplements as my blood levels were high. I sent my nephr a note and for my next blood and urine tests in about 10 days, he has ordered tests for some muscle enzymes and thyroid functions. I'll keep you advised of what's happening.
Really exciting show today on NPRs "Science Friday". They were talking about the biome and how it affects each person. In particular if you have to spend an extended period in a hospital, your biome can be severely damaged causing you continued problems after your release. Experiments with taking samples of your "poop" and reinserting it into your biome later have shown to be over 90% effective in regenerating ones biome and eliminating those problems.
Thanks again for your responses.
Bill |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18108
Registered: 05-2003
| | Posted on Saturday, November 08, 2014 - 03:36 pm: |
|
Hi Bill
Explain to me what a Biome is. I did not find it on google but I did see microbiome. Is that what you are talking about?
You sound very positive! 
|
bill s
Member
Username: Bill_s
Post Number: 173
Registered: 08-2011
| | Posted on Saturday, November 08, 2014 - 08:37 pm: |
|
Hi Risè,
Yes, micobiome is the more accurate term. I am reading a number of scientific sources and find incredible things are happening - if we don't wipe ourselves out first.
For example, I found this brief history of transplantation:
The first kidney transplant took place in 1947. Immunosuppression (IS) had not yet arrived and grafts made up to 1955 most often failed. IS from whole body radiation and adrenocortical steroids was used from 1955 to 1962 with a number of short term successes. Pharmacological IS began in 1962 using both steroids and the drug 6-mercaptopurine where the kidney functioned for >20 yrs. in the 1960s discoveries led to the system of histocompatability antigens which have been updated and used ever since in matching organs to hosts to minimize rejection. The introduction of cyclosporine-A in 1983 vastly increased the transplantation of hearts, lungs and livers. |
bill s
Member
Username: Bill_s
Post Number: 174
Registered: 08-2011
| | Posted on Saturday, November 08, 2014 - 08:44 pm: |
|
Oh, I forgot. I asked my nephr about additional blood tests and he set me up to measure some muscle enzymes and thyroid functions next week. |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18109
Registered: 05-2003
| | Posted on Saturday, November 08, 2014 - 09:25 pm: |
|
I found this important information regarding ACV
http://www.livestrong.com/article/505712-what-are-the-negatives-of-drinking-apple-cider-vinegar-every-day/
|
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18111
Registered: 05-2003
| | Posted on Sunday, November 09, 2014 - 01:49 pm: |
|
Tell me more about microbiome
I believe if many of us (tx pts) can reduce stress and sleep well along with eating healthy, we will be doing really well. Everything is a balancing act and no day is perfect so keep everything in mind and don't be hard on yourselves.
|
bill s
Member
Username: Bill_s
Post Number: 175
Registered: 08-2011
| | Posted on Sunday, November 09, 2014 - 02:59 pm: |
|
You can go on line to the "Science Friday" web site (I listened on KQED) and listen to their broadcast at
"http://www.sciencefriday.com/segment/11/07/2014/spilling-our-guts-decreased-diversity-in-the-human-microbiome.html"
There's a lot more info which you can find at
Tumblr.com
It's free to join and you can join as many blogs as you want (I prefer to read than listen to the site above but you can do what pleases you more). The ones I like are neurosciencestuff, positivity-in-pain, scinote, currentsinbiology and others. When you join just do a search on microbiome and you'll see some very interesting articles. I like neurosciencestuff especially as they list excerpts of the latest scientific papers published usually within the past few days. Let me know if you have any problems accessing the site. |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18112
Registered: 05-2003
| | Posted on Sunday, November 09, 2014 - 03:45 pm: |
|
Thank y ou Bill
My speakers are not working.
Are they talking about probiotics and gut flora and how that affects your biome?
|
bill s
Member
Username: Bill_s
Post Number: 176
Registered: 08-2011
| | Posted on Sunday, November 09, 2014 - 08:57 pm: |
|
Probiotics, gut flora and the effect on the microbiome are small bits of the info available.
ive done additional research. Please Google "microbiome" and read the Wikepedia explanation. It provides enough of a definition to whet ones appetite, but lacks the scientific attribution that tumblr and other science journals provide. But please try tumblr and do a search on "microbiome". The info is staggering and incredible and most interesting. I could write about it but it would take considerable space and time. |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18113
Registered: 05-2003
| | Posted on Monday, November 10, 2014 - 07:43 am: |
|
Hi Bill
Thank you for sharing your thoughts with us. Please post whatever article you like as I see you often give credit to the source which is great.
I am a BIG believer in Probiotics but it is important to take them on an empty stomach.
Thankfully, my wonderful Transplant Doctor gave me probiotics (JARROW) in the ICU. I think if she gave me a higher dose I would have been better off. Doctors are still learning.
Since I practice muscle testing and totally believe in what I do I do not need Probiotics daily. It is probably due to my healthy diet and the fact that I have been taking them for years. Currently, I am taking one every other day or when I am tired I need more. It all depends but I always muscle test on an empty stomach as probiotics are more effective taken this way.
This is the latest news that I heard about Probiotics from the Dr. Oz show. He said if you take them with food you are not absorbing them.
My favorite brand of Probiotics is from Renew Life. First I took the Critical Formula and now I just take the standard formula.
|
bill s
Member
Username: Bill_s
Post Number: 180
Registered: 08-2011
| | Posted on Saturday, November 22, 2014 - 07:49 pm: |
|
Hi Risè,
I got my blood results back and all were in the normal range. I did not see a test for CoQ10 and my doc is out until 11/26 so I don't know what happened there. With regard to posting microbiome articles, is this the best place? After all it is titled "No Stamina".
Perhaps you might want them in "Nutritious Food and Wellness? |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18114
Registered: 05-2003
| | Posted on Sunday, November 23, 2014 - 01:54 pm: |
|
Hi Bill
Don't worry about placement but if you have time it would not hurt to share the subject in question in another forum.
I took some anti-depressants when i was waiting for my transplant and from what I remember, I felt very tired from Paxil. I feel it kept me in a very calm state and I am normally always up so if I am not ill, I choose not to take them (I remember I was instructed to slowly wean from the pill).
If you are still taking anti depressants it is very possible that there are side effects to those drugs which might be causing the fatigue you are experiencing.
Did your doctor tell you this?
|
bill s
Member
Username: Bill_s
Post Number: 181
Registered: 08-2011
| | Posted on Sunday, November 23, 2014 - 02:46 pm: |
|
Hi Risè, I was thinking of placement to make it easy for those who might be interested to find the info. Were you thinking I should put info in several places at the same time? Also, I'm not familiar with all the forums so I thought you might suggest the more pertinent ones.
I'm not taking any antidepressants now although my wife thinks I should be. My docs are stymied since my body doesn't react to drugs (uppers, downers, antidepressants, caffeine and even common salt) the way they're advertised to do. That's one reason I'm reading things like about the microbiome, hoping to find something that might have an impact. The only drugs I'm on now are immunosuppressants, BP control and anti gout. Marihuana has been suggested, but since it's not a FDA controlled substance the purity and efficacy of that available in Ca is totally unreliable - I could go to Holland which would be a nice vacation but not for a cure. |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 18115
Registered: 05-2003
| | Posted on Wednesday, November 26, 2014 - 09:05 pm: |
|
Hi Bill
Sorry for not answering you sooner These two sites are filled with so much information that to successfully organize each topic, I would have to build another website but that is why we have search bars on the top of the pages.
If you want to bring up this discussion you could post in the nutrition forum or create a new topic on Transplant Friends.com
Do you exercise? Are you able to get enough sunshine- not too much of course but perhaps maybe ten minutes a day?
Have you tried Mediation? Have you seen my posts on Energy Medicine?
How about EFT
Emotional Freedom Technique.
I am a big believer in Diet so that goes back to what you are talking about the Biome. It really helps to eat healthy.
Sending you a Big HUG for this Holiday Season
Please know that you are appreciated by ME!
|
