Protocols and a question?: I am 10 months... - Kidney Transplant

Kidney Transplant
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Protocols and a question?

Transplant314
Transplant314
28 Replies

I am 10 months post transplant. Does anyone have recommendations when going to parties and socializing regarding hugging people and eating food that is laid out buffet style?

Also, I am getting constant canker sores inside my mouth. My nephrologist gave me Triamcinalone Acetonide an oral paste but it does not help. I believe the Tacrolimus is the cause. Does anyone else have this issue?

28 Replies
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Dara3351

I am 10 months post transplant and have been going out with friends to restaurants but really watch what I eat. I stay away from buffets. Don’t know how long food has been out,etc. As for canker sores, your body is stressed. I just had an endoscopy and gallbladder removal and my blood draws 13 vials and woke up with a canker sore and fever blister which I haven’t had like forever.Nurse told me baby oragel would numb the pain. I have bought facials masks as a precaution. I read where canker sores might be a deficiency of Vitamin B. Since your immune system is compromised I wouldn’t do much hugging, instead of shaking hands I use a gist bump. People understand.

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Transplant314

Thanks

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Woodwork1981

39 years post transplantsince then ive been living my life to the fullist until 6months ago when i was told i had SCC skin cancer had half my nose removed and 44 limp knodes removed from my neck my mdes had a hand in it . so make sure you cover up in the sun as well

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Transplant314

So sorry to hear. I have to be much more diligent with the sunscreen. Thank you for sharing and I hope you recover soon

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mhawk123

Hello there,

I really feel for you as I was very reluctant to do much as I had the fear of catching everything. I am 25 months out now, but I can remember my 10 months period very clearly since I was recovering from low WBC and it was wintertime. I was taking Mycelex troches as I was suppressed from both Prograf and Cellcept, which can contribute to development of Canker sores. You must be proactive in your interactions since the influenza is big time now. Stay abreast your lab numbers and make wise decisions. STAY BLESSED.

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Transplant314

Thanks

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Gardner-NY
Gardner-NY
in reply to mhawk123

HI mhawk123, thanks for writing about your ordeal the first year with low WBC due to meds. My spouse is almost 13 months post transplant 12/28, and has low WBC since August due to getting the CMV virus from donated kidney. In Nov, the virus went away due to high doses of valcyte and now that dose of this drug is lessened to take through late Jan2020. The WBC being low is still going on and he wears masks everywhere, never goes where a crowd will be nor do we have people come to our home to visit or go to theirs (well we did 12/24 to see 2 friends and no one sick). It took him almost 8 months to get his low red blood count above 10 and I hope and pray it does not take 8 mos for the wbc to go up. Since FEb. due to blood chemistry serious problems he has not been out of the house except blood labs (often), see his doctor,and on rare occasion a grocery store. Now the meds, his cellcept he was put back on 12/13/19 at low dose is causing the low WBC the dr. think. He was removed from cellcept in August and just went back on it. How long did wbc stay low for you? thanks and I wish you a great healthier New Year.

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mhawk123
mhawk123
in reply to Gardner-NY

For over three months, but I experienced a slow rise upward with reducing the dose of Cellcept. MY WBC finally went above three but I still stayed cautious. Now after my two year mark, I am holding at four and hoping I can make it this winter without any sickness.

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Gardner-NY
Gardner-NY
in reply to mhawk123

HI mhawk123, thanks for writing me back and I also hope you stay 'well' now and all 2020 too. My spouse was on Cellcept normal dose and in Aug when CMV was found, this drug removed totally and he went back on Cellcept 12/13/2019 at lowest dose which appears to doctors is causing his low WBC. From Aug to Nov the lowest WBC of .5 caused him to have two shots that I gave to him at home but they did zero to increase low count. I think the shot was called 'procrit'. So we wait and see if they take him off Cellcept low dose and give him another antirejection med or what. The dr are concerned about him being off cellcept due to my spouse had a low grade rejection late Feb 2019 and that was reversed in 5.5 days on high IV of steroids.

Please stay well! All my best.

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CNeb

If it’s pot luck, be first in line and always carry hand sanitizer.

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Transplant314
Transplant314
in reply to CNeb

That is what I have been doing so far so good. Common sense seems to prevail. Thanks

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WYOAnne
WYOAnneNKF Ambassador

All of us that have had a transplant are all a little different, because of our personal health, the immunosuppressants we are on and other factors. My advice would be to use your own common sense. Attending parties at friends' house - is the food cooled properly, if to be served warm is it being kept warm......lots of appetizer's don't need special care.

As someone said, have hand sanitizer in your pocket, and wash your hands often with soap and water. Did you get the flu shot?

Your canker sores shows that your body is stressed out. Your body is still adjusting to your new meds. It does take awhile. Things should be improving soon.

I am 20 years post transplant. When going out shopping, I still make sure I thoroughly wash my hands when I return home. I think whether you eat buffet food or not, you use your own judgment as any of us would. Some buffet food can be "bad" whether you have had a transplant or not.

Use common sense too when out with others at parties etc. It is flu season. A little over a month after my transplant I wound up back in the hospital with a bad case of the flu. I make sure I get my flu shot every year! You should do everything you can to prevent getting sick, within reason.

Enjoy the party and have fun with your friends!

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Transplant314

Thanks. I am pretty cautious. Should by stock in Purell as I use it constantly. The buffet style is more at people’s houses or a private part at in a restaurant setting. I usually try to go first or ask to have a plate set aside. Had my flu, shingle and pneumonia shots. Just trying to lead as normal a life as possible but I am adjusting to my new normal

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WYOAnne
WYOAnneNKF Ambassador
in reply to Transplant314

Just something I found put from my own doctor, with this seasons' flu, hand sanitizer DOES NOT kill the flu germs. Said the only way is to wash your hands with soap and water. Enjoy the parties and relax!

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AndrewT

Dear Transplant314,

First of all...Congratulations, on your Transplant. I had mine in July 2013.

Secondly, as said above, by a number of 'Others'....Yes DO go 'Out' but be careful. Do eat Cooked meat but avoid Raw meats and, to be safe, avoid 'things' like Ham (unless it is Freshly cut), Yoghurt- particularly 'Live'- and ESPECIALLY Raw Fish....so Sushi is a TOTAL No No. Also (Never, Ever, EVER Start a sentence with 'Also') it is Advisable to avoid Taramusalata (I'm Not sure of the spelling here, but Cod Roe.) Other 'Advisable Avoids', as it were, include Trifle- unless you Know that it is Freshly Made- i.e. Hasn't been Alternating 'In and out' of the fridge ALL morning and 'Gone Off' milk, additionally Soft- especially unpasteurized Cheese. Indeed treat ANY 'Raw', or unprocessed, Food with care.....Other than that 'Go Ahead' enjoy yourself. You can even, I'm sure- but check-, have a Little 'Drink' with it too!

One last thought, 'Touched On' above, Do make sure that you keep your hands Washed. Alcohol gels are, just about, OK....In an Emergency. However, 'Good Old' soap, and water, is best. Is 'Anti-bacterial' soap better? Well, the evidence says 'Probably' NOT actually. Washing Your Hands Is Important however What you, choice to USE, isn't. So YES that old bar, of Lifebuoy Soap 'Grandma' left you......

Just one final 'Word Of Warning' which I don't imagine, for one moment, WILL happen but IF.....You start to feel, in ANY way, unwell after a 'Suspect' meal then See Your Doctor.

Finally have a Happy New year 2020 and Have Fun, you Deserve it.

AndrewT

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Transplant314

Andrew: Thanks for the tips. I am pretty cautious about what I eat although going to parties or events where food is left out or touched by others seems to leave me with few options but a small price to pay.

I have always been a hand washer but I have come to like Purel when I am out and about. Hope you have a happy and healthy new year.

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anne627

Congratulations on your transplant! I have my transplant over 25 years and am cautious about salad bars and buffets. As others have said, warm foods should be warm and cold foods cold. If you see someone using hands to take food off a platter, don’t eat that dish. Don’t eat food left out more than two hours. Salad foods should be cold. Don’t eat romaine lettuce or hard boiled eggs right now. Take the food first if possible. Have fun.

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Transplant314

Thank you

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anne627

You’re welcome.

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wind00

I've never commented on this message board, but I really enjoy reading about other transplant recipients experiences. I do want to add my view on this question of contact with people and food outside the house though.

First I will say that I really agree with WYOanne in her statement that we are all very different, in our health status, level of suppression, transplant match, etc. and should act from that place. I am 20 years out from my transplant and while I have had ups and downs, I would like to offer a bit of a different viewpoint.

From a year after my transplant to today I have touched friends and strangers and don't experience it as an issue. I get the flu or colds from time to time but not much more or less that my family members and friends, and while they may last a little longer, I get over them. When it comes to eating out, I try to eat healthy foods but I have never avoided buffets or even sushi when I know the restaurant well. Again, I've gotten sick from food once or twice, but always have gotten over it.

I'm not advocating for reckless behavior, especially if you're not even a year post transplant and are still on a high level of suppression. What I would like to offer is a view that once you are stabilized and have a good feel for your health and your body's response to threats, trying to live a life that is as normal as possible has huge benefits. As we all know happiness is good for our health and stress is not. For me, the fact that I might get a few more colds than my peers is well worth the risk and has had a positive impact. My doctor has often commented that my emphasis on living a "normal" life has in some ways helped support the longevity of my transplant. I hope offering my experience is taken for what it is, simply one person's experience with what life can be like with a successful transplant. This is something I never imagined would be possible 20 years ago so hopefully that is helpful to others.

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Transplant314

Thank you for offering to comment on my post. My surgeon is a big proponent of living a normal life post transplant. I am striving for this and trying to use commons sense and wise judgement. I appreciate your advice.

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Gotthecall_123

Hi um Dave 19 months post💪Blessed as well 🙏 as long as your feeling good it should be no prob use common sense if someone is oviously got something avoid hugs and kisses i rather hug someone that shake their hand oh ya wash wash wash you hands allwayx 💪🙏😝

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Transplant314

Thanks. I wash my hands constantly. Purell is my best friend

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Gotthecall_123

Oh ya i was a clean freak for the first few months now still clean but not as bad when in public I get paranoid 😬 but i know im healthy now not taking any chances can you access your labs online?

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Transplant314

I can access my lab results online

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Gotthecall_123

Thats great do you know what they all mean yet?

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Transplant314

I know what many of the results mean, not all. My nephrologist is my surgical nephrologist and she is a force of nature. She is very thorough in her testing and they report back the critical information.

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Gotthecall_123

Yes my team i the same the call me for the smallest things which i like i can manage manage most of ,y levels with diet

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