after transplant questions

TwistedTanya · Jun 20, 2010

I had a very tough transplant with some setbacks and extra surgeries. Some of my problems are rare and was the first time my hospital had ever come across the problem. So it was tough in the beginning and took a lot of work to get to where I could breathe well and not have to get stuff sucked out of me but most people who went there see to be out before 2 weeks. I was in 52 days and ended up returning after a month too. However, I'm 10 months out and things have greatly improved. I never FEEL like I need a treatment but my docs have me on inhaled Colistin 2 times a day. I think it lowers after a year. Recently I've gone back on Xopenx and HyperTonic Saline b/c I get a little bit of junk and actually can't cough it up most of the time so they want me to do those to help me cough it up or lossen it. Still don't cough much and can't usually tell there is anything in there. It's amazing how much more I can do! In the beginning when we were out and about, I felt like I was supposed to go home and do a treatment. Now I'm getting more used to not having to do one and enjoying spending the day out and not having to go home b/c I need to do a treatment or b/c I feel sick. It's a wonderful thing! I'm saving loads in kleenex now too, hehe. No more big gross phlegm balls or coghing your head off. Just want you to know that when you get a transplant, if things don't go as smoothly as you hoped and you get worried, give it time. I thought I was never gonna make it to a good spot and felt like giving up b/c I kept having problems. I got reopened 2 times!!!! But I hung in and now I am enjoying my new life with new lungs! You have to stay strong! Most likely you'll have it way easier then me though so don't worry too much. It's worth it!

jipleary · Aug 11, 2010

so........ basically a transplant cures all lung symptoms associated with CF?? No mucus, no tune-ups, no shortness of breath, no coughing?

correct me if I'm wrong but that basically seeems like a cure to me.

jipleary · Aug 11, 2010

so........ basically a transplant cures all lung symptoms associated with CF?? No mucus, no tune-ups, no shortness of breath, no coughing?

correct me if I'm wrong but that basically seeems like a cure to me.

jipleary · Aug 11, 2010

so........ basically a transplant cures all lung symptoms associated with CF?? No mucus, no tune-ups, no shortness of breath, no coughing?
 
 correct me if I'm wrong but that basically seeems like a cure to me.

Liza · Aug 11, 2010

You could say that. For your lungs anyway. But remember you are trading one set of issues for another. Although in many cases, the transplant issues can be easier to manage. The small meal of meds you take to keep rejection at bay and the ones to counteract the side effects (side affects?) of those anti-rejection meds. What's a handful of meds compared to the coughing and repeated tune-ups and all all inability to breathe well? My daughter says it's a trade she'd make all over again.

Just remember you still have CF in the rest of your body.

Liza · Aug 11, 2010

You could say that. For your lungs anyway. But remember you are trading one set of issues for another. Although in many cases, the transplant issues can be easier to manage. The small meal of meds you take to keep rejection at bay and the ones to counteract the side effects (side affects?) of those anti-rejection meds. What's a handful of meds compared to the coughing and repeated tune-ups and all all inability to breathe well? My daughter says it's a trade she'd make all over again.

Just remember you still have CF in the rest of your body.

Liza · Aug 11, 2010

You could say that. For your lungs anyway. But remember you are trading one set of issues for another. Although in many cases, the transplant issues can be easier to manage. The small meal of meds you take to keep rejection at bay and the ones to counteract the side effects (side affects?) of those anti-rejection meds. What's a handful of meds compared to the coughing and repeated tune-ups and all all inability to breathe well? My daughter says it's a trade she'd make all over again.
 
 Just remember you still have CF in the rest of your body.

Lex · Aug 11, 2010

It is a cure....for your lungs. Your new lungs have someone else's DNA. CF free. Not bad, huh?

Too bad we have an immune system. UHG! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lex · Aug 11, 2010

It is a cure....for your lungs. Your new lungs have someone else's DNA. CF free. Not bad, huh?

Too bad we have an immune system. UHG! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lex · Aug 11, 2010

It is a cure....for your lungs. Your new lungs have someone else's DNA. CF free. Not bad, huh?
 
 Too bad we have an immune system. UHG! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lex · Aug 11, 2010

It is a cure....for your lungs. Your new lungs have someone else's DNA. CF free. Not bad, huh?

Too bad we have an immune system. UHG! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lex · Aug 11, 2010

It is a cure....for your lungs. Your new lungs have someone else's DNA. CF free. Not bad, huh?

Too bad we have an immune system. UHG! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lex · Aug 11, 2010

It is a cure....for your lungs. Your new lungs have someone else's DNA. CF free. Not bad, huh?
 
 Too bad we have an immune system. UHG! <img src="i/expressions/face-icon-small-smile.gif" border="0">

coltsfan715 · Aug 12, 2010

1. Do you still have a hoarse throat voice that is really annoying?
I don't get the hoarse scratchy thing that much at all anymore, but I have always had a raspy deep sounding voice at times - so sometimes I do but it isn't a CF related or transplant related thing.

2. Do you still get exhausted after one errand....?
No I have people telling me all the time to slow down and not overdo things. For me I am currently working full time, attending college full time, taking care of a dog (walks, going to the park, etc) hitting the gym a few times a week, along with having an active social life. The only thing I have to keep an eye on is to make sure I get enough sleep. For me if I don't get sleep my health suffers and always has.

3. Do you still wake up in the middle of the night out of breath....?
I did this for about a week post transplant because I was afraid I wasn't going to breath on my own without forcing my body to do it post transplant. Now I have had nights like this but only once or twice and at the time had an upper respiratory infection working, and some plugs and things of that nature. I have only had to do one course of neb treatments since my transplant and that came just at 3 years post - I had developed a pretty decent chest infection caused by Psuedo - did a months worth of TOBI and Albuterol and was rebronched and it was gone.

4. Do you still wake up feeling congested ...?
No - I wake up and have to clear my throat due to post nasal drip but I do not cough and such.

I will say to those that say that transplant is like a cure for your lungs - yes in many ways this is true BUT you can still get sick and are still more likely to get sick in comparison to the norm. The major difference is IF you catch the problem quickly it is relatively easy to get rid of - if however you do not pay attention to your body or you do not take an infection seriously and you think oh it will go away in a few days then you could end up killing yourself. I say this because I have seen it happen. You have to be much more diligent about docs visits and calling if you are sick than we are at times Pre transplant. I say this because most all of my CF friends have done this - myself included - oh I don't feel that good but I've got this blah blah blah planned so I'll wait until next week to call the doc. No that isn't a doable thing. If you wake up sick and still feel sick later that day or early the next you call the doc then. I had a friend wait because he didn't see the harm when he got sick about 4 months post transplant. He waited a week ... he died the next. It was something that had he called when he started feeling badly he would have been fine but he waited and by the time the docs found out anything was wrong they tried as hard as they could but the bacteria just took him down.

So yeah - it makes life ten thousand times easier in many many ways - but there are other issues that you need to consider, mostly changes in how we approach our health.

Linds

4.

coltsfan715 · Aug 12, 2010

1. Do you still have a hoarse throat voice that is really annoying?
I don't get the hoarse scratchy thing that much at all anymore, but I have always had a raspy deep sounding voice at times - so sometimes I do but it isn't a CF related or transplant related thing.

2. Do you still get exhausted after one errand....?
No I have people telling me all the time to slow down and not overdo things. For me I am currently working full time, attending college full time, taking care of a dog (walks, going to the park, etc) hitting the gym a few times a week, along with having an active social life. The only thing I have to keep an eye on is to make sure I get enough sleep. For me if I don't get sleep my health suffers and always has.

3. Do you still wake up in the middle of the night out of breath....?
I did this for about a week post transplant because I was afraid I wasn't going to breath on my own without forcing my body to do it post transplant. Now I have had nights like this but only once or twice and at the time had an upper respiratory infection working, and some plugs and things of that nature. I have only had to do one course of neb treatments since my transplant and that came just at 3 years post - I had developed a pretty decent chest infection caused by Psuedo - did a months worth of TOBI and Albuterol and was rebronched and it was gone.

4. Do you still wake up feeling congested ...?
No - I wake up and have to clear my throat due to post nasal drip but I do not cough and such.

I will say to those that say that transplant is like a cure for your lungs - yes in many ways this is true BUT you can still get sick and are still more likely to get sick in comparison to the norm. The major difference is IF you catch the problem quickly it is relatively easy to get rid of - if however you do not pay attention to your body or you do not take an infection seriously and you think oh it will go away in a few days then you could end up killing yourself. I say this because I have seen it happen. You have to be much more diligent about docs visits and calling if you are sick than we are at times Pre transplant. I say this because most all of my CF friends have done this - myself included - oh I don't feel that good but I've got this blah blah blah planned so I'll wait until next week to call the doc. No that isn't a doable thing. If you wake up sick and still feel sick later that day or early the next you call the doc then. I had a friend wait because he didn't see the harm when he got sick about 4 months post transplant. He waited a week ... he died the next. It was something that had he called when he started feeling badly he would have been fine but he waited and by the time the docs found out anything was wrong they tried as hard as they could but the bacteria just took him down.

So yeah - it makes life ten thousand times easier in many many ways - but there are other issues that you need to consider, mostly changes in how we approach our health.

Linds

4.

coltsfan715 · Aug 12, 2010

1. Do you still have a hoarse throat voice that is really annoying?
 I don't get the hoarse scratchy thing that much at all anymore, but I have always had a raspy deep sounding voice at times - so sometimes I do but it isn't a CF related or transplant related thing.
 
 2. Do you still get exhausted after one errand....?
 No I have people telling me all the time to slow down and not overdo things. For me I am currently working full time, attending college full time, taking care of a dog (walks, going to the park, etc) hitting the gym a few times a week, along with having an active social life. The only thing I have to keep an eye on is to make sure I get enough sleep. For me if I don't get sleep my health suffers and always has.
 
 3. Do you still wake up in the middle of the night out of breath....?
 I did this for about a week post transplant because I was afraid I wasn't going to breath on my own without forcing my body to do it post transplant. Now I have had nights like this but only once or twice and at the time had an upper respiratory infection working, and some plugs and things of that nature. I have only had to do one course of neb treatments since my transplant and that came just at 3 years post - I had developed a pretty decent chest infection caused by Psuedo - did a months worth of TOBI and Albuterol and was rebronched and it was gone.
 
 4. Do you still wake up feeling congested ...?
 No - I wake up and have to clear my throat due to post nasal drip but I do not cough and such.
 
 I will say to those that say that transplant is like a cure for your lungs - yes in many ways this is true BUT you can still get sick and are still more likely to get sick in comparison to the norm. The major difference is IF you catch the problem quickly it is relatively easy to get rid of - if however you do not pay attention to your body or you do not take an infection seriously and you think oh it will go away in a few days then you could end up killing yourself. I say this because I have seen it happen. You have to be much more diligent about docs visits and calling if you are sick than we are at times Pre transplant. I say this because most all of my CF friends have done this - myself included - oh I don't feel that good but I've got this blah blah blah planned so I'll wait until next week to call the doc. No that isn't a doable thing. If you wake up sick and still feel sick later that day or early the next you call the doc then. I had a friend wait because he didn't see the harm when he got sick about 4 months post transplant. He waited a week ... he died the next. It was something that had he called when he started feeling badly he would have been fine but he waited and by the time the docs found out anything was wrong they tried as hard as they could but the bacteria just took him down.
 
 So yeah - it makes life ten thousand times easier in many many ways - but there are other issues that you need to consider, mostly changes in how we approach our health.
 
 
 Linds
 
 4.

Transplantmommy · Aug 12, 2010

My voice is still kind of deep and people tell me that I still have the "CF voice" but it's not raspy like it used to be and I don't clear my throat anymore.

I get exhausted like any "healthy" person would. I can definitely do a lot more than I used to, but if I have a really busy day, of course I'm still tired.

I think that there was a month or so where I still had to do treatments to clear my chest. There was no mucus in my lungs, but there was still mucus in/above the connection site that needed to be cleared. Since then, I do not wake up with a tight chest, felling like I need to do a treatment.

I am 3.5 years post bilateral lung and liver transplant and I never feel the urge to grab a neb and do a treatment.

As for the "cure," as someone else said, it really is a trade for a whole new set of problems. I never had diabetes and I do now, my digestive issues are more noticable, and about 4.5 months after my transplant, I got c-diff so badly that meds would not clear it up. I had to have emergency surgery to have my large intestine removed and had a colostomy bag for 9 months. Then, in November last year, I was diagnosed with Bells Palsy (a paralyzation of the face). It can be linked to a virus, stress, and I'm the third post tx person at my clinic that had it within a few weeks of each other. Fortunately, mine went away after about 2 weeks.

Things have been great for 2 years now, but there is always that worry of rejection and not getting another transplant in time. It's really just a personal choice if someone wants transplant or not and I went ahead with the process because I felt like I had more to give...and that is being proven time and time again. I have been honored to receive the Heroes of Hope award for this month, I was just informed that the USACFA (United States Adult CF Association) wants to feature me in their upcoming newsletter, and my transplant story will be in a book compiled of other transplant stories in the near future.

I'm here for my husband and son and I couldn't have asked for anything more than that.

Transplantmommy · Aug 12, 2010

My voice is still kind of deep and people tell me that I still have the "CF voice" but it's not raspy like it used to be and I don't clear my throat anymore.

I get exhausted like any "healthy" person would. I can definitely do a lot more than I used to, but if I have a really busy day, of course I'm still tired.

I think that there was a month or so where I still had to do treatments to clear my chest. There was no mucus in my lungs, but there was still mucus in/above the connection site that needed to be cleared. Since then, I do not wake up with a tight chest, felling like I need to do a treatment.

I am 3.5 years post bilateral lung and liver transplant and I never feel the urge to grab a neb and do a treatment.

As for the "cure," as someone else said, it really is a trade for a whole new set of problems. I never had diabetes and I do now, my digestive issues are more noticable, and about 4.5 months after my transplant, I got c-diff so badly that meds would not clear it up. I had to have emergency surgery to have my large intestine removed and had a colostomy bag for 9 months. Then, in November last year, I was diagnosed with Bells Palsy (a paralyzation of the face). It can be linked to a virus, stress, and I'm the third post tx person at my clinic that had it within a few weeks of each other. Fortunately, mine went away after about 2 weeks.

Things have been great for 2 years now, but there is always that worry of rejection and not getting another transplant in time. It's really just a personal choice if someone wants transplant or not and I went ahead with the process because I felt like I had more to give...and that is being proven time and time again. I have been honored to receive the Heroes of Hope award for this month, I was just informed that the USACFA (United States Adult CF Association) wants to feature me in their upcoming newsletter, and my transplant story will be in a book compiled of other transplant stories in the near future.

I'm here for my husband and son and I couldn't have asked for anything more than that.

Transplantmommy · Aug 12, 2010

My voice is still kind of deep and people tell me that I still have the "CF voice" but it's not raspy like it used to be and I don't clear my throat anymore.
 
 I get exhausted like any "healthy" person would. I can definitely do a lot more than I used to, but if I have a really busy day, of course I'm still tired.
 
 I think that there was a month or so where I still had to do treatments to clear my chest. There was no mucus in my lungs, but there was still mucus in/above the connection site that needed to be cleared. Since then, I do not wake up with a tight chest, felling like I need to do a treatment.
 
 I am 3.5 years post bilateral lung and liver transplant and I never feel the urge to grab a neb and do a treatment.
 
 As for the "cure," as someone else said, it really is a trade for a whole new set of problems. I never had diabetes and I do now, my digestive issues are more noticable, and about 4.5 months after my transplant, I got c-diff so badly that meds would not clear it up. I had to have emergency surgery to have my large intestine removed and had a colostomy bag for 9 months. Then, in November last year, I was diagnosed with Bells Palsy (a paralyzation of the face). It can be linked to a virus, stress, and I'm the third post tx person at my clinic that had it within a few weeks of each other. Fortunately, mine went away after about 2 weeks.
 
 Things have been great for 2 years now, but there is always that worry of rejection and not getting another transplant in time. It's really just a personal choice if someone wants transplant or not and I went ahead with the process because I felt like I had more to give...and that is being proven time and time again. I have been honored to receive the Heroes of Hope award for this month, I was just informed that the USACFA (United States Adult CF Association) wants to feature me in their upcoming newsletter, and my transplant story will be in a book compiled of other transplant stories in the near future.
 
 I'm here for my husband and son and I couldn't have asked for anything more than that.

Dottie · Aug 29, 2010

WOW. I just want to say how proud I am to be reading these posts right now. This is what matters and what works-everyone working together for Knowledge and Strength,Inspiration and Hope.

I LOVE that these questions are asked (Great Job Musclemania 70!) <img src="i/expressions/face-icon-small-smile.gif" border="0">
AND I LOVE that recipients are sharing there story and experience to help overcome the fears and concerns of the ones waiting. THIS is what a Team does and what will create a "win" <img src="i/expressions/face-icon-small-smile.gif" border="0">

I feel extremely blessed to be living the life that I am at age 43 (yikes! But a young 43) and living with my lung transplant for 16 years. Yes, there have been little bumps in the road but the MOUNTAINS I have been able to climb, the HILLS I have been able to run over-has made the little bumps well worth it.

There is so much to look forward to living with CF today as apposed to when I was young and I know it is only going to get better and better. Anything is indeed possible, for I have lived the unimaginable

Live on guys, Dream, Create, Do, Soar and Believe!

Much Love, Dottie
Diagnosed with CF 6 wks, Bi Lateral Lung Tx 1994, Kidney Tx 02, Diabetes. MOM and ATHLETE
Author of Seven Letters That Saved my Life
Founder of Whole-Body Wellbeing
www.dottielessard.com

after transplant questions

New member

jipleary

Guest

jipleary

Guest

jipleary

Guest

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member