transplants and death
- Thread starter anonymous
- Start date
I
IG
Guest
yeah Barry the freak ::cough:: <img src="i/expressions/face-icon-small-wink.gif" border="0">
Anyway the scar doesn't go up very far, I really should take another picture and post it but since I'm currently in transit, moving up to Pennsylvania and don't have my camera cord I'm unable to. When I wear a bra you can't even see it. I'm sure for some people it changes, as for height and width of the scar but still, it's not bad.
Anyway the scar doesn't go up very far, I really should take another picture and post it but since I'm currently in transit, moving up to Pennsylvania and don't have my camera cord I'm unable to. When I wear a bra you can't even see it. I'm sure for some people it changes, as for height and width of the scar but still, it's not bad.
Martha,
First off don't listen to her, shes the freak.. lol anyways shes a great friend, and agree on MOST things.
What doctors are you seeing at UPMC? I started seeing Dr Pilewski just this past year after seeing Iacona for years. Will you be staying at one of the Family Houses? I was at Shadyside one this past month when I had my 6 month check up. As you can tell I really like UPMC and would recomend it to everyone.
Barry
ps .. let me know if you have other tx questions... on here or email bdchevy@yahoo.com
First off don't listen to her, shes the freak.. lol anyways shes a great friend, and agree on MOST things.
What doctors are you seeing at UPMC? I started seeing Dr Pilewski just this past year after seeing Iacona for years. Will you be staying at one of the Family Houses? I was at Shadyside one this past month when I had my 6 month check up. As you can tell I really like UPMC and would recomend it to everyone.
Barry
ps .. let me know if you have other tx questions... on here or email bdchevy@yahoo.com
I
IG
Guest
k I lied.
Bad me.
<a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/view/22710898/">A pic of the scar with my bra on, side view</a>
<a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/view/22711106/">Scar pic 2, side view with no bra on</a>
<a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/view/22711174/">Scar pic 3, frontal</a>
Bad me.
<a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/view/22710898/">A pic of the scar with my bra on, side view</a>
<a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/view/22711106/">Scar pic 2, side view with no bra on</a>
<a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/view/22711174/">Scar pic 3, frontal</a>
C
christyisnutz
Guest
Definitely dont' be sorry for the question. CFers face their own mortality every single day. I think that is why we are so passionate about certain things in our life. I am post-tx, and even though I usually feel healthy, it does cross my mind often that I might not see my daughter grow up. Immediately post-tx, I was really worried about getting an infection, and I almost became a homebody... even doing my shopping online, but as time went on, I realized that hey.. I still have to live a life here, and being scared of every little bug out there will drive a person crazy. I know that I could get an infection, or have rejection, or yeah.... even get hit by a bus, LOL, anyday, but i refuse to live a sheltered life b/c of it. I am def more careful now, have even made my daughter into a strict handwasher.
Immediately post-tx, you are more immunosuppressed than someone a year or so out. They won't even allow plants or fresh fruit or veggies in your room, but after they lower or take away some of your anti-rejection meds, you aren't as high risk anymore. Obviously, you have to be more careful than joe blow out there, but you don't have to go to Walmart with a mask on anymore. (remembering my first trip shopping after tx, and my mask, ughh) The good thing is that now when I get a cold or other virus, I know it won't likely land me in the hosp on IV's like it would pre-tx. Post-tx life is so wonderful in so many ways. There are risks, but I really can't comprehend anyone not opting for it when it's their only option other than death. Yeah, it may be unsuccessful, but the odds are for you instead of against you for sure.
I applaud you for asking these questions though, b/c I was so uninformed pre-tx. I didn't ask that many questions and I only talked to one post-tx patient a month before tx. I was shocked at a lot of things immediately post-tx, b/c I didn't know what to expect. So now, when people ask if it was painful.. I say heck yeah it was painful, but well worth it. I wish someone had told me that pre-tx. What a dork I was. Anyway, I've rambled sorry.
Christy
tx 11/12/01
Immediately post-tx, you are more immunosuppressed than someone a year or so out. They won't even allow plants or fresh fruit or veggies in your room, but after they lower or take away some of your anti-rejection meds, you aren't as high risk anymore. Obviously, you have to be more careful than joe blow out there, but you don't have to go to Walmart with a mask on anymore. (remembering my first trip shopping after tx, and my mask, ughh) The good thing is that now when I get a cold or other virus, I know it won't likely land me in the hosp on IV's like it would pre-tx. Post-tx life is so wonderful in so many ways. There are risks, but I really can't comprehend anyone not opting for it when it's their only option other than death. Yeah, it may be unsuccessful, but the odds are for you instead of against you for sure.
I applaud you for asking these questions though, b/c I was so uninformed pre-tx. I didn't ask that many questions and I only talked to one post-tx patient a month before tx. I was shocked at a lot of things immediately post-tx, b/c I didn't know what to expect. So now, when people ask if it was painful.. I say heck yeah it was painful, but well worth it. I wish someone had told me that pre-tx. What a dork I was. Anyway, I've rambled sorry.
Christy
tx 11/12/01
Barry,
I see Dr. Pilewski - he's great! I've been seeing him for a couple of years now, but have been on the list there for 5 or 6 years. Now I am finally ready, or so they tell me. Some days I'm really excited and so tired of waiting for the next part of my life and other days I practically have a panic attack thinking about what they're gonna do! But it helps talking to you guys and seeing those pics. Thanks everybody!
Martha CF, 30
I see Dr. Pilewski - he's great! I've been seeing him for a couple of years now, but have been on the list there for 5 or 6 years. Now I am finally ready, or so they tell me. Some days I'm really excited and so tired of waiting for the next part of my life and other days I practically have a panic attack thinking about what they're gonna do! But it helps talking to you guys and seeing those pics. Thanks everybody!
Martha CF, 30
Hey I am 10 months post transplant and was wondering if you all who go to UPMC in New York know Dr. Arcasoy. I'm getting sinus surgery in the end of september and my New Orleans transplant team thinks i should meet him in case anything happens that I need a bronch or something. Do you guys like him? I hear he is very strict and I know its going to be an adjustment getting used to someone other than my angel of a doctor in New Orleans. But with everything that is going on down in New Orleans right now i can see why they would want me to have a back up doctor.
And for those of you waiting for a transplant, eventhough Christies was painful doesn't mean yours will be. My transplant was not painful at all. I do have a high pain tolerance (the doctors actually thought I was kind of freakish) and i was very good at my pain management. I learned that the nurses were giving me two percocets every four hours. Beleive me at 10 to the hour I was harrassing the nurses to get my pain meds ready. Also try to time it so that when the nurses come in to give you a bed bath you get the pain meds about an hour before that. But it was more than an uncomfortable feeling for me than anything else. Almost like someone took a belt and tightened it around my chest. And the chest tube stink. Just throwing another experience out there.
Margaret
Double lung 11.11.04
And for those of you waiting for a transplant, eventhough Christies was painful doesn't mean yours will be. My transplant was not painful at all. I do have a high pain tolerance (the doctors actually thought I was kind of freakish) and i was very good at my pain management. I learned that the nurses were giving me two percocets every four hours. Beleive me at 10 to the hour I was harrassing the nurses to get my pain meds ready. Also try to time it so that when the nurses come in to give you a bed bath you get the pain meds about an hour before that. But it was more than an uncomfortable feeling for me than anything else. Almost like someone took a belt and tightened it around my chest. And the chest tube stink. Just throwing another experience out there.
Margaret
Double lung 11.11.04
How do you all afford the TX, beyond insurance? My wife and I are all we have, no other family, and we have a difficult enough time as it is with my CF. How can all of you afford the TX? Also, my wife and I are kinda messy. We are not dirty, but we aren't as good as we would like to be about putting things in their place. However, when it comes to the dishes neither of us enjoy the task of cleaning them, consequently, at least once a month they build up and it gets kinda gross. I suspect this would be unacceptable if I received a tx? I didn't know you couldn't have plants and fruit around due to the risk of molds, etc. That's pretty precautious. What other details must a tx patient regard?
Thanks,
Lance
33/w/CF
Thanks,
Lance
33/w/CF
Lance
Do you have an employee sponsored health insurance?
I do and also am on disability, so I have Medicare (you have to wait 2 years and 5 months after getting disability to get Medicare) so I feel that I am covered pretty well should I need a transplant. I plan to fundraise for any other expenses that may come up such as meds, co pays, living expenses, etc.
Disability may be something you want to think of if you qualify. I can't remember the website for Social Security Disabity, but you could sure google it & find it and then look at the requirements to see if you qualify due to your FEV1 and some other conditions. I will try to find a link for SSDI and post it below.
As for the cleanliness issue, if you ever had a transplant, I wonder if you could hire someone to come in bi-weekly or something. Also I think when you and your wife understand how important it is for you to be in a cleaner environment, I think you will be willing to sacrifice to make sure that happens.
Do you have an employee sponsored health insurance?
I do and also am on disability, so I have Medicare (you have to wait 2 years and 5 months after getting disability to get Medicare) so I feel that I am covered pretty well should I need a transplant. I plan to fundraise for any other expenses that may come up such as meds, co pays, living expenses, etc.
Disability may be something you want to think of if you qualify. I can't remember the website for Social Security Disabity, but you could sure google it & find it and then look at the requirements to see if you qualify due to your FEV1 and some other conditions. I will try to find a link for SSDI and post it below.
As for the cleanliness issue, if you ever had a transplant, I wonder if you could hire someone to come in bi-weekly or something. Also I think when you and your wife understand how important it is for you to be in a cleaner environment, I think you will be willing to sacrifice to make sure that happens.
Here is the website that should help you determine if you qualify:
<a target=new class=ftalternatingbarlinklarge href="http://www.socialsecurity.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm
">http://www.socialsecurity.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm
</a>
<a target=new class=ftalternatingbarlinklarge href="http://www.socialsecurity.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm
">http://www.socialsecurity.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm
</a>
WOW! I am new to this site, and was going to keep to myself, but you broke my silence and thank you VERY much. I am 29 and have just moved up to #1 one on the"list" for my hospital for a double lung tx. I've been waiting "patiently" since being #3 as of May. I've convinced myself that I'm no longer scared for the actual procedure, but still very curious about what to expect after. I am SHOCKED at how great that looks! You really dont notice it unless you were standing like you are in that pic! 
it amazes me that those docs can rip open our chests, and in the chaos of the most important factor, that being, getting some new, strong healthy lungs hooked up correctly and the old ones out, that they are still that sensitive to the "beauty" aspect of it when all is said and done. I have a wonderful, supportive husband...we've been married 15 months and have yet to go on our honeymoon because I have been too sick, and really with all the equipment I need, would need to rent a private jet to get anywhere and back! Our "celebration" of my successful transplant to come, will be our long awaited honeymoon to a beach somewhere.......now I know a bikini will not be a problem at all! how exciting! not to make this sound catty, because that little battle scar will be a small price to pay and I dont care......but, I am still a girly girl and cant wait to feel "normal" again! thanks for sharing that pic and congratulations to you! waiting in minnesota.....
it amazes me that those docs can rip open our chests, and in the chaos of the most important factor, that being, getting some new, strong healthy lungs hooked up correctly and the old ones out, that they are still that sensitive to the "beauty" aspect of it when all is said and done. I have a wonderful, supportive husband...we've been married 15 months and have yet to go on our honeymoon because I have been too sick, and really with all the equipment I need, would need to rent a private jet to get anywhere and back! Our "celebration" of my successful transplant to come, will be our long awaited honeymoon to a beach somewhere.......now I know a bikini will not be a problem at all! how exciting! not to make this sound catty, because that little battle scar will be a small price to pay and I dont care......but, I am still a girly girl and cant wait to feel "normal" again! thanks for sharing that pic and congratulations to you! waiting in minnesota.....