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post T never know what to do when I'm sick... ideas?
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Topic: post T never know what to do when I'm sick... ideas? (Read 3566 times)
WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12
post T never know what to do when I'm sick... ideas?
«
on:
March 17, 2013, 08:11:33 AM »
It's me again with my usual question. I have a cold and don't know what to do.
Back story. My 15 year old son has been sick for 6 weeks with an upper respiratory/cough/ear infection/sore throat/low grade fever on and off. He's seen his doctor three times. Gets an antibiotic, feels mostly better, finishes the antibiotic, gets worse again. He's missed 12 days of school and gone to school sick a lot of days... He seems better now, but just finished his antibiotics so we'll see.
Two weeks ago my husband got it. He was really sick, same symptoms as my son plus really light headed and bad sinus pressure. He saw his doctor last week and is feeling better.
Now it's my turn. I got sick last Thursday night. All the usual cold symptoms. I seem to have a wheeze I did not notice in the others.
Do I
A: Medicate with over the counter stuff my transplant team has recommended for a past cold and wait and see?
B: Go to our family doctor for an antibiotic?
C: Call the transplant team and risk an admit?
I know, I'm so stupid. I'm just absolutely terrified of starting something with the transplant team that could become something bigger and.... We all know how quickly a little thing can become a big long nasty hospital stay with complication after complication and.... Oh the fear... You understand, right?
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KarenInWA
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Re: post T never know what to do when I'm sick... ideas?
«
Reply #1 on:
March 17, 2013, 09:49:56 AM »
I went through this in October, and on a lesser note, am going through it again right now. Go to the Dr!!! In October, I had a cough and wheezing. Went to my PCP/walk-in clinic (they have ALL my records!) and ended up w/a z-pack and an inhaler. You don't want this to turn into pneumonia, which is always a possibility. I was dx with bronchitis. The antibiotics worked. Right now I have a cough and occasionally have to blow my nose. More annoying than anything. I went to the PCP again, have another z-pack, and will go from there if needed. If it lingers for a long time, this is the normal course of action for anyone, not just a tx patient.
When I had my issue in Oct, I brought it up to my tx team. They recommended I go to my PCP. I think a big deal would have been made if my PCP was concerned, or if the antiobiotics didn't work. I do remember getting a chest x-ray, which showed some "spots", but no pneumonia. That was a relief!
KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011 - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
MooseMom
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Re: post T never know what to do when I'm sick... ideas?
«
Reply #2 on:
March 17, 2013, 12:39:15 PM »
WIK, I don't think self-medicating with OTC stuff is going to help you because it is apparent that what your son has had is not a mere cold. If you are getting what he has had, OTC meds are not going to help, so I think a trip to the doc will be in order. I don't see why your tx team has to be dragged into this right off the bat. I'd start with your family doctor; he knows you're a tx patient and will prescribe accordingly. If he feels your tx team should be contacted, then he/you can contact them.
And yes, we understand.
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
cariad
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Re: post T never know what to do when I'm sick... ideas?
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Reply #3 on:
March 17, 2013, 02:13:07 PM »
Colds are viral, so if this were a cold, antibiotics would be useless, and actually damaging to your system and the rest of us. Still, it *is* standard practice to give antibiotics to transplant recipients when they show cold symptoms, because infections are triggered more easily in you, and your system is further weakened by a virus. I don't know that a GP would actually know what to do. I would call the transplant clinic just because they may choose to give you an antiviral like Tamiflu which I have found to be a miracle drug. If it is a cold, it will get rid of it long before the six weeks that your family went through. Honestly, it sounds like mono to me, but it could be one of those conditions like CMV that are a much bigger danger for transplant patients. Not trying to scare you, I tended to just ride these things out myself and not bother with doctors, but if you want to be a good little transplantee, call your centre. If they say we need to admit you, just say no. You are allowed to do that, remember? It's still your body, even the transplanted part.
Please let us know what you find, if anything. These conditions tend to sweep through the country, so chances are, sooner or later, someone else here will be going through this, too. Take care of yourself!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria
People have hope in me. - John Bul Dau, Sudanese Lost Boy
jbeany
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Re: post T never know what to do when I'm sick... ideas?
«
Reply #4 on:
March 17, 2013, 02:23:53 PM »
I haven't called my team yet for anything - but, I do make liberal use of my thermometer, and watch the fever and symptoms carefully. So far, nothing has been bad enough for me to call any doc. However - if you think this is exactly what your family has already suffered through, I'd contact the transplant team first, before it gets bad enough for an admission. Head it off before it gets to that point, and while you can logically and sensibly refuse an admission without them pitching a fit. If you wait until you are really and truly in bad shape, it's going to be harder to avoid.
I'm in full agreement with you on not wanting to be put in the hospital - every time I go near the place, I have complications!
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality.
SugarBear
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Re: post T never know what to do when I'm sick... ideas?
«
Reply #5 on:
March 17, 2013, 03:13:39 PM »
Quote from: WishIKnew on March 17, 2013, 08:11:33 AM
an upper respiratory/cough/ear infection/sore throat/low grade fever on and off
I have had these symptoms for what I have been calling "the never-ending cold" since Christmas and am now in the recover phase from last week. My transplant nephrologist is calling it a noro-virus that is going around and since I am also fighting the BK virus, my body hasn't been able to beat. Oddly enough, he has not given me anything for it and just suggested over the counter relief.
Be well!
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Xbox GT: ShonumShogun
CKD due to FSGS 1999
Drop from Stage 4 to Stage 2 ESRD 2000
ESRD 2005
Started Dialysis September 13, 2006
Short Daily Home Hemo March 2009
Back to In-Center Hemo August 2009 (Too Many Hours)
Nocturnal Home Hemo with Remote Viewers May 2010
Received Transplant March 1, 2012
Transplant Failed in October 2017
Nocturnal Home Hemo with Remote Viewers December 2017
jeannea
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Re: post T never know what to do when I'm sick... ideas?
«
Reply #6 on:
March 17, 2013, 03:54:13 PM »
Definitely go to see your family doctor. You need to have him listen to your lungs and look in your ears. Then I always listen to what he says about needing or not needing an antibiotic and that's what I do. Also, you should call your transplant coordinator with an update. It's important to keep them in the loop.
I hope you feel better soon.
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MooseMom
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Re: post T never know what to do when I'm sick... ideas?
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Reply #7 on:
March 17, 2013, 04:45:24 PM »
LOL! WIK, you certainly have received plenty of ideas and suggestions, few of which seem to be in agreement.
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12
Re: post T never know what to do when I'm sick... ideas?
«
Reply #8 on:
March 17, 2013, 06:07:07 PM »
MM, I noticed that. D: all of the above. LOL
But, seriously, what you all have done for me is heard my fear and shared your way of dealing with these things, which are all different. In that you've set me free from feeling like whatever I do is decidedly wrong. You've heard me and set me free. Thank you as always.
Wish
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MooseMom
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Re: post T never know what to do when I'm sick... ideas?
«
Reply #9 on:
March 17, 2013, 09:05:37 PM »
WIK, the worst thing for you to do is to do nothing just because you are afraid. None of us can let fear result in inertia.
I think we all agree that if you start displaying the same symptoms as your son and your husband, you would probably be wise to consult a doctor just like they had to do. This germ sounds rather serious. Now, whether that doctor is your family doc or your tx neph, well, I'm not sure which would be best. I understand, though, how you'd be afraid of things spiralling out of control!
Let us know what you decide to do. I sure hope you don't get ill.
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
WishIKnew
Sr. Member
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Posts: 635
Alports, dialysis '07-'12,cancer'11,transplant '12
Re: post T never know what to do when I'm sick... ideas?
«
Reply #10 on:
March 20, 2013, 07:45:59 AM »
Called my transplant coordinator today because my husband "encouraged" me to. He's concerned about pneumonia. I'll keep you posted.
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