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jj_bytes
Member
Username: Jj_bytes
Post Number: 20
Registered: 11-2010
| | Posted on Wednesday, November 02, 2011 - 08:00 am: | 
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Folks,
I've checked the wellness thread and this one and I don't see this topic addressed. I'm 6 months post transplant and have had my bumps in the road. Finally the doctors have determined that many of my issues are due to HepC rather than rejection (they both look similar from testing, only biopsies clear up the cause). I'm now being rapidly removed from prednizone (feeds HepC) and will be around 1.5 on prograf and taking 2 myfortic.
The question is what do you do and what has your experience been with being in public? Do you wear a mask everywhere or stay in the house? I keep hand sanitizer in my pocket, car, etc. and use it to the point my hands stay split and sore. When I go to the clinic at the hospital I always grab a mask from the first desk I can find one at. Doctors haven't really given me good direction here other than, "use common sense" which makes no sense to me as we live in a very uncommon situation.
So, do you go to the office? I work in large company in a Dilbert cube farm so the office is pretty much open. I work from home now, and could probably manage to go in just a couple of days, but in the end I need to go in for some meetings, etc. What about church, parties, weddings, etc? If you do take precautions do you find the demands have lessened with time (I'm 6 months out)? Do you consider the size of the gathering, the place, etc? Am I just being overtly paranoid here?
I would appreciate some of your collective real world experience on this one as this forum of caring and sharing has been a wealth of information for me that you just can't find reading literature or doing internet research. Thanks to all of you for that.
jj_bytes
Loyola Hospital
Liver transplant 06/09/2011 |
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Frank J.
Forum Leader
Username: Txaggie86
Post Number: 268
Registered: 03-2009
| | Posted on Wednesday, November 02, 2011 - 08:41 am: |
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Ah, the days of working in a cube. I don't miss them.
I don't think you are being paranoid at all. Its your health we are talking about.
I think after six months or so, it would be OK to back to the office. (I went to a sci-fi convention six months later). I would keep hand sanitizer and a mask handy. Let co-workers know you are immuno-suppressed so they can steer clear of you if they have a cold.
Good luck
Frank Jones
Liver Transplants at Emory University Hospital, Atlanta, GA April 2005 and April 2006.
I am proud to be an American. Because an American can eat anything on the face of this earth as long as he has two pieces of bread. - Bill Cosby |
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papillonbleu
Forum Leader
Username: Papillonbleu
Post Number: 2109
Registered: 10-2007
| | Posted on Thursday, November 03, 2011 - 12:59 pm: |
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I think it is important to be careful. I always make sure that I have some hand sanitizer handy at all times. When I go out such as to the store or to the zoo, I usually do not feel that I need to wear a mask (I am six years post transplant). I usually do not meet with family or friends if they know someone among them is sick. I have been told to wear a mask if I travel in an airplane. The first year one might want to be a little bit more cautious. I avoid going to buffet type meals. In general though I do not find myself very limited as long as I have plenty of hand sanitizer. Best of wishes to you.
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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Joe Berry
Forum Leader
Username: Joe910
Post Number: 305
Registered: 08-2008
| | Posted on Thursday, November 03, 2011 - 08:31 pm: |
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I heard the "use common sense" from my doctor also. I then asked him to be specific. His words were live life as you did but keep in mind that you are immune suppressed. Wash your hands (the number 1 way to avoid infections) and wear a mask when around sick people. Get a flu shot and a pneumonia shot.
I went back to work at a hospital after 6 weeks, I go out to eat, go to weddings, pretty much live life. I kept a mask handy for the first year. Used it when I was near someone who had a cold, etc. Used hand sanitizer and still do.
In 4+ years I have had one minor cold, one minor stomach virus, and one sinus infection that took over 60 days of antibiotics to clear. The sinus infection was at year 3 and I was having issues with Ulcerative Colitis at the same time. My family doctor seemed to think that the sinus infection was hanging on because of that. I was also working for a family practice clinic at the time and it was flu season.
I tell the folks I work with that I am immune suppressed. They are great. My family is the hardest to convince that a grandchild's "sniffles" should delay their visit.
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Stephanie
Member
Username: Casmr36
Post Number: 12
Registered: 04-2011
| | Posted on Friday, November 04, 2011 - 06:44 pm: |
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My husband and I aren't post-transplant long enough for us to have any input other than what the doctors have told us (keep away from sick people, that he doesn't have to stay locked in a box, even right now (6 days post transplant lol) just to be smart about it) I really just wanted to thank you for posting this thread. I actually have it bookmarked so I can check back and see what other people have to add as we will be 6 months in what seems like no time at all. |
Richard Owens
Member
Username: Richardindy
Post Number: 709
Registered: 07-2007
| | Posted on Saturday, November 05, 2011 - 12:16 am: |
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Like Joe Berry, my doctor told me to "use common sense". I've traveled to Europe four times and have not used a mask or made any other provisions. I've never been ill after any of these plane trip.
I avoid obviously contagious diseases if I know of them. But, so often, one doesn't know about it till it's too late to do anything about it.
I have always healed quickly and that didn't seem to change after my first transplant. If you choose to follow a more liberal route, like mine, I'd monitor it carefully, looking for more frequent colds, worse colds, etc., than you used to have before the transplant. One thing I won't do--I will not let my transplant status keep me from enjoying life as normally as I can.
I might offer an observation: I think transplant doctors are not excited by the question of protection because they see so few cases of illnesses beyond the "normal" in transplant patients, no matter how much or how little protective measures they take.
The best to you, and have a wonderful life.
Richard
Kidney Transplant - Aug 30, 1986 - Type One Diabetes
Liver Transplant - May 15, 2007 - Hepatic Carcinoma due to Hepatitis C |
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Blessed
Member
Username: Saints9
Post Number: 7
Registered: 08-2011
| | Posted on Saturday, November 05, 2011 - 10:16 am: |
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The hand sanitizers also dry my hands. I found Gold Bond sanitizing lotion and it is great. I am 5mos. out and have not caught any colds yet. I don't wear any mask. I avoided church and large gatherings for the first couple of months as everybody wants a hug. My surgeons will not let me get a flu shot until next month when I am 6 mos. post. Will probably do most of my Christmas shopping on line as to avoid the crowded malls. |
jj_bytes
Member
Username: Jj_bytes
Post Number: 23
Registered: 11-2010
| | Posted on Wednesday, November 09, 2011 - 06:38 pm: |
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Thanks to all of you for your input! While my company and supervisors have been nothing but understanding and generous when it comes to working from home, I do find that face to face meetings are valuable in certain situations. There's also the on going paranoia of the economy, continuous corporate layoffs and my keeping my face known, not to mention it's just good for me to interact with other people for sanity reasons.
Blessed, I really appreciate the tip about the Gold Bond sanitizer. The alcohol based products have my hands looking like they did 40 years ago when I did concrete work!
Thanks.
The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly. Buddha
jj_bytes
Loyola Hospital
Liver transplant 06/09/2011 |
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Blessed
Member
Username: Saints9
Post Number: 8
Registered: 08-2011
| | Posted on Friday, November 11, 2011 - 01:23 pm: |
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Glad I could share some beneficial info, being so newly transplanted, I haven't got much advice on the problems we all share. |
Amy Tippins
Member
Username: Amytippins
Post Number: 91
Registered: 06-2009
| | Posted on Tuesday, November 15, 2011 - 07:46 pm: |
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JJ,
Joe is right. Can I give you a little piece of advice? LIVE!!!! If you stay held up in your house a lot then what is the point of having a transplant. I have not worn a mask since my transplant 19 years ago and I have done fairly well. I have not had a temp since the day of transplant so I think this plan is working for me and I only get sick with a cold once a day. I wash my hands, but no more than anyone else I suppose. I do wash them a bit more if I am on public transportation or something like it. I hug on my niece and nephew all the time despite their grubby little hands. I would not say go makeout with anyone with a cold, but with that said I have slept in the bed with old boyfriends when they were sick and survived no worse the wear. The best thing to stay healthy with compromised immune system is eat healthy, work out a lot and enjoy your life. Your mental space has a lot bigger effect on your health than anything else
RockScar Love is where we celebrate the scars of new life! www.Rock Scar Love.com
A portion of sales credited to Transplant Buddies goes to COTA! |
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Diane
Forum Leader
Username: Mary_diane
Post Number: 665
Registered: 02-2009
| | Posted on Wednesday, November 16, 2011 - 12:10 am: |
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Hi JJ,
I agree with Amy. We didn't have our transplants to live in a bubble. Having said that we all come with our own unique risk factors over and above the fact that our immune systems are compromised. I think that it is partially a matter of getting to know our own new norms. (if there is such a thing)
I agree that staying as healthy as possible and preventing things where possible is a big part of it. I DO wear a mask when I am flying, but probably because that is how I got sick in the first place. I picked up a viral infection helping a fellow passenger who was sick.
It sounds like a theme in the responses. Don't let your transplant status interfere with your enjoyment of life.
I've found that the changes that I have made now come automatically to me, and most people would not even notice I am doing anything different.
Diane
PS The other thing that I have really had to work hard on is to keep my hands away from my mouth and face. Amazing how often we touch our mouths with less than clean hands.
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC
“Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.”
Albert Schweitzer
Diane's Blog |
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Happy2Bhere
Forum Leader
Username: Happy2bhere
Post Number: 4359
Registered: 02-2008
| | Posted on Wednesday, November 16, 2011 - 12:35 pm: |
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We heart recipients are a bit more at ease with our immune system being problematic to a certain point. Others may disagree with me but I have not very often been concerned about being in contact with others in my presence directly. Could be that I am almost 21yrs out with my heart transplant and my immune system has grown accustomed to my everyday life. Don't really know.
I did decide several months post transplant, after I had past the dangerous stage of recovery, I positively wasn't gonna' live in a "Glass House" or a Bubble", not with this 2nd chance at life that had been so graciously given to me.
I truly realize others with different types of organ transplants should always be more cautious. I can fully understand their fear of the unknown. God Bless 'em
Ol' Bob Livin' & Lovin' it
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