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lotuspetal
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« on: September 19, 2019, 10:20:33 AM »

Hi all, I've been a bit of a lurker because I haven't had a lot of questions that I couldn't find answers to here.  Now, I am 2 yr 9 months post transplant and have a question.  I find that exercise always makes me feel better, and I am part of a local cycling club.  I ride maybe 50-80 mile a week, which isn't that much if one rides regularly.  For about the past 6 months I have also had some kind of illness.  It generally starts with stuffiness below my eye area (no runny nose) a feeling of irritation in my throat, a low grade fever/chills and fatigue and some gut issues.  I can tell when I'm getting it because i am very cranky for no apparent reason when it is starting.  I had some immune issues and was hospitalized the first year due to an overly suppressed immune system.  I have had blood tests whenever this happens, and the neph says that everything is good and my numbers are normal for someone who is immunosuppressed.  No BK, active CMV, EBV --once I was even tested for parvo!  This is now happening almost every week, and I'm not even riding all that hard. 

Has anyone experienced this?  Could it have something to do with exercise?  I've read that the idea that exercise suppresses the immune system has been debunked
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: September 19, 2019, 12:57:29 PM »

Maybe you’ve developed an allergy?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
iolaire
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« Reply #2 on: September 19, 2019, 01:28:33 PM »

Maybe you’ve developed an allergy?
Good suggestion Cassandra. 

Pre dialysis I was getting yearly colds in the fall and spring that would not go away.  Finally I went to a minute clinic at CVS and they said they say allergy stripes in my mouth.  Since then I've been on the once per day generic Claritin offered by Costco under the name AllerClear -  https://www.costco.com/Kirkland-Signature-AllerClear%2c-365-Tablets.product.11602332.html - its about $11 for a years supply, three dollars off right now.   Sometime later I told my primary care doctor and she ran blood tests that claim I have no common allergies but I know its stopped those annual colds that don't go away.  I'm happy to be free of the congestion...
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
lotuspetal
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« Reply #3 on: October 11, 2019, 04:19:18 PM »

Hi friends, thanks so much for the comments.  I don't think I have an allergy exactly, although I think histamine is involved.  If you google "flu like symptoms after exercise" there are a lot of people who report flu like symptoms after exercise, and not particularly strenuous exercise.  I have had histamine related issues in the past, before the transplant, and I think that is what is going on.  I have trouble with high histamine food and drink and now am being very careful to avoid those.  It got worse after my doctor increased my tacrolimus by 50%. It was to the point that I was getting it evert 3 to 4 days, for several days.  I have been taking antihistamines, vitamin C, lysine and a couple of other things, and maintaining a strong mental attitude and though I have still been getting the fatigue,  nasal congestion, digestion issues and fatigue, it seems to be better with this regime. This week it only lasted a day.   I saw an infectious disease doctor, but, really, these kinds of things kind of fall between the cracks for most western trained doctors, and seeing a naturopath involves a lot of time and money, unfortunately, as nothing really shows up in blood work or other tests. 
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PrimeTimer
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« Reply #4 on: October 12, 2019, 03:34:53 PM »

I haven't had a transplant and not on dialysis but I do have Asthma and Pulmonary Sarcoidosis and any physical activity, including exercise definitely affects my sinuses. It all goes hand-in-hand, acting as if I've got a bad cold or having an attack from allergies. And it doesn't matter if I'm indoors or out. I'm on Prednisone but if I have to, I use an anti-histamine or my Asthma inhaler. A hot wet cloth over my face will also help. Some people wear masks when they go out and I certainly understand that. For me, windy days can be the worst.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
kristina
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« Reply #5 on: October 14, 2019, 06:52:46 AM »

Hi all, I've been a bit of a lurker because I haven't had a lot of questions that I couldn't find answers to here.  Now, I am 2 yr 9 months post transplant and have a question.  I find that exercise always makes me feel better, and I am part of a local cycling club.  I ride maybe 50-80 mile a week, which isn't that much if one rides regularly.  For about the past 6 months I have also had some kind of illness.  It generally starts with stuffiness below my eye area (no runny nose) a feeling of irritation in my throat, a low grade fever/chills and fatigue and some gut issues.  I can tell when I'm getting it because i am very cranky for no apparent reason when it is starting.  I had some immune issues and was hospitalized the first year due to an overly suppressed immune system.  I have had blood tests whenever this happens, and the neph says that everything is good and my numbers are normal for someone who is immunosuppressed.  No BK, active CMV, EBV --once I was even tested for parvo!  This is now happening almost every week, and I'm not even riding all that hard. 

Has anyone experienced this?  Could it have something to do with exercise?  I've read that the idea that exercise suppresses the immune system has been debunked

Hello lotuspetal (what a lovely name!),

I have not experienced any of the symptoms you describe and since your blood tests appear to be alright, I wonder :
Where exactly are you cycling? Does it happen to be near an industrialist site, where the air you breath in is not exactly as clean as it should be? Are you near a hillside where cycling becomes sometimes a bit difficult and you are "working and breathing hard" whilst cycling?
Do you have any air-conditioning at home and has anything changed there within in the past few months?
Those are my thoughts and I do wish you all the best from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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