Transplant, what can I expect?

Hardak

New member
Hello, I'm Keith. I'm 30 years old living with CF, my FEV one has been dipping down around the low 30's and not coming back up over 40 now for a few months. And the doctors told me time to start thinking about the transplant subject of making a choice in the next year or two, provided I don't nose dive.

So.. here is my general questions.
What can I expect prop-oration; A general over view of the screening possesses.
Post op recovery; time spent in hospital, physical therapy, extra.
Daily work/chores on the new lungs.
Potential side effects from, the entire ordeal.

What kind of quality of life can I expect afterwords?


Keith
 

Hardak

New member
Hello, I'm Keith. I'm 30 years old living with CF, my FEV one has been dipping down around the low 30's and not coming back up over 40 now for a few months. And the doctors told me time to start thinking about the transplant subject of making a choice in the next year or two, provided I don't nose dive.

So.. here is my general questions.
What can I expect prop-oration; A general over view of the screening possesses.
Post op recovery; time spent in hospital, physical therapy, extra.
Daily work/chores on the new lungs.
Potential side effects from, the entire ordeal.

What kind of quality of life can I expect afterwords?


Keith
 

Hardak

New member
Hello, I'm Keith. I'm 30 years old living with CF, my FEV one has been dipping down around the low 30's and not coming back up over 40 now for a few months. And the doctors told me time to start thinking about the transplant subject of making a choice in the next year or two, provided I don't nose dive.
<br />
<br />So.. here is my general questions.
<br />What can I expect prop-oration; A general over view of the screening possesses.
<br />Post op recovery; time spent in hospital, physical therapy, extra.
<br />Daily work/chores on the new lungs.
<br />Potential side effects from, the entire ordeal.
<br />
<br />What kind of quality of life can I expect afterwords?
<br />
<br />
<br />Keith
 

summer732

New member
Keith, I'm sorry to hear that you are nearing the transplant stage, but happy that you came here for advice. There are many people who frequent the boards who have gone through this before.

So...my answers to your questions below!

What can I expect prop-oration; A general over view of the screening possesses.

My transplant screening was three days of non-stop tests. Various blood tests, a cardiac catheter, CT Scan of the chest, PFTs, etc. They test you for everything under the sun. After you go through the testing, your case is compiled with the team and basically goes to the transplant board meeting. They review your results and then decide if you are a good candidate for transplant.

Post op recovery; time spent in hospital, physical therapy, extra.

Everyone is different when it comes to this question. I was in the hospital for 9 days after my transplant. I then was able to go home and live in an apartment fairly close to my center. I had doctor appointments on Tuesdays and Thursdays (blood work, PFTS, doc visit, etc.) and rehab on Monday, Wednesday, and Friday. Recovery is literally a full time job! You will need help from family members afterwards to do certain things that might be hard as first. As the days went in, my doctor appointments became less frequent. I was encouraged to excercise often and get blood work every 6 weeks. Currently, I'm 6+ years out of my transplant. I see my doctors once every three months (as long as I'm not sick) and still get blood work every 6 to 8 weeks.


Daily work/chores on the new lungs.

There is not much daily work that needs to be done. I take medicine and 9 AM and 9 PM. I care for my blood sugar from my diabetes. I exercise 4 to 6 days a week, depending on what I have going on. I walk to work every day so this also helps as I am never sedentary. I would say, singlehandedly, exercise is the absolute most important part of your care post-transplant (aside from taking your meds). This will determine your long term success with your transplant.

Potential side effects from, the entire ordeal.

Diabetes was the major side effect that I experienced and still have 6 years later. In the beginning, the tips of my fingers were numb, I had trouble sleeping, and I had moon face from the predinisone (and prednisone stomach). Besides the diabetes, and the occassional sleepless night, I really do not notice any side effects at all. Again for this one, you will get different experiences from everyone. Everyone's bodies react differently to medications.

What kind of quality of life can I expect afterwords?

My quality of life is absolutely 100 percent amazing. I have been very lucky with my transplant and I find the entire experience very humbling. I work full time and live in the best city in the world. I am able to keep up with other people my age and do what I please. I can travel. Ski. love. Swim. Run. Jump. Skip. Laugh. And do this all without coughing!!

With that being said, transplant does have the same "roller coaster" feeling that CF does. I have run into various issues over the last 6 years that have to be dealt with immediately when they arise. One day I am fine and the next day I have something wrong that needs to be addressed. Some people may argue that you are trading one set of problems for another. In a sense that is true, however, you are getting a much better quality of life if all goes well. If I kept my old lungs and didn't go through with my transplant, I wouldn't have been trading a set of problems...I would have one big problem...I wouldn't be alive!!


All in all, this is a very manageable life and one that I enjoy so much more than I ever could have imagined.
 

summer732

New member
Keith, I'm sorry to hear that you are nearing the transplant stage, but happy that you came here for advice. There are many people who frequent the boards who have gone through this before.

So...my answers to your questions below!

What can I expect prop-oration; A general over view of the screening possesses.

My transplant screening was three days of non-stop tests. Various blood tests, a cardiac catheter, CT Scan of the chest, PFTs, etc. They test you for everything under the sun. After you go through the testing, your case is compiled with the team and basically goes to the transplant board meeting. They review your results and then decide if you are a good candidate for transplant.

Post op recovery; time spent in hospital, physical therapy, extra.

Everyone is different when it comes to this question. I was in the hospital for 9 days after my transplant. I then was able to go home and live in an apartment fairly close to my center. I had doctor appointments on Tuesdays and Thursdays (blood work, PFTS, doc visit, etc.) and rehab on Monday, Wednesday, and Friday. Recovery is literally a full time job! You will need help from family members afterwards to do certain things that might be hard as first. As the days went in, my doctor appointments became less frequent. I was encouraged to excercise often and get blood work every 6 weeks. Currently, I'm 6+ years out of my transplant. I see my doctors once every three months (as long as I'm not sick) and still get blood work every 6 to 8 weeks.


Daily work/chores on the new lungs.

There is not much daily work that needs to be done. I take medicine and 9 AM and 9 PM. I care for my blood sugar from my diabetes. I exercise 4 to 6 days a week, depending on what I have going on. I walk to work every day so this also helps as I am never sedentary. I would say, singlehandedly, exercise is the absolute most important part of your care post-transplant (aside from taking your meds). This will determine your long term success with your transplant.

Potential side effects from, the entire ordeal.

Diabetes was the major side effect that I experienced and still have 6 years later. In the beginning, the tips of my fingers were numb, I had trouble sleeping, and I had moon face from the predinisone (and prednisone stomach). Besides the diabetes, and the occassional sleepless night, I really do not notice any side effects at all. Again for this one, you will get different experiences from everyone. Everyone's bodies react differently to medications.

What kind of quality of life can I expect afterwords?

My quality of life is absolutely 100 percent amazing. I have been very lucky with my transplant and I find the entire experience very humbling. I work full time and live in the best city in the world. I am able to keep up with other people my age and do what I please. I can travel. Ski. love. Swim. Run. Jump. Skip. Laugh. And do this all without coughing!!

With that being said, transplant does have the same "roller coaster" feeling that CF does. I have run into various issues over the last 6 years that have to be dealt with immediately when they arise. One day I am fine and the next day I have something wrong that needs to be addressed. Some people may argue that you are trading one set of problems for another. In a sense that is true, however, you are getting a much better quality of life if all goes well. If I kept my old lungs and didn't go through with my transplant, I wouldn't have been trading a set of problems...I would have one big problem...I wouldn't be alive!!


All in all, this is a very manageable life and one that I enjoy so much more than I ever could have imagined.
 

summer732

New member
Keith, I'm sorry to hear that you are nearing the transplant stage, but happy that you came here for advice. There are many people who frequent the boards who have gone through this before.
<br />
<br />So...my answers to your questions below!
<br />
<br />What can I expect prop-oration; A general over view of the screening possesses.
<br />
<br />My transplant screening was three days of non-stop tests. Various blood tests, a cardiac catheter, CT Scan of the chest, PFTs, etc. They test you for everything under the sun. After you go through the testing, your case is compiled with the team and basically goes to the transplant board meeting. They review your results and then decide if you are a good candidate for transplant.
<br />
<br />Post op recovery; time spent in hospital, physical therapy, extra.
<br />
<br />Everyone is different when it comes to this question. I was in the hospital for 9 days after my transplant. I then was able to go home and live in an apartment fairly close to my center. I had doctor appointments on Tuesdays and Thursdays (blood work, PFTS, doc visit, etc.) and rehab on Monday, Wednesday, and Friday. Recovery is literally a full time job! You will need help from family members afterwards to do certain things that might be hard as first. As the days went in, my doctor appointments became less frequent. I was encouraged to excercise often and get blood work every 6 weeks. Currently, I'm 6+ years out of my transplant. I see my doctors once every three months (as long as I'm not sick) and still get blood work every 6 to 8 weeks.
<br />
<br />
<br />Daily work/chores on the new lungs.
<br />
<br />There is not much daily work that needs to be done. I take medicine and 9 AM and 9 PM. I care for my blood sugar from my diabetes. I exercise 4 to 6 days a week, depending on what I have going on. I walk to work every day so this also helps as I am never sedentary. I would say, singlehandedly, exercise is the absolute most important part of your care post-transplant (aside from taking your meds). This will determine your long term success with your transplant.
<br />
<br />Potential side effects from, the entire ordeal.
<br />
<br />Diabetes was the major side effect that I experienced and still have 6 years later. In the beginning, the tips of my fingers were numb, I had trouble sleeping, and I had moon face from the predinisone (and prednisone stomach). Besides the diabetes, and the occassional sleepless night, I really do not notice any side effects at all. Again for this one, you will get different experiences from everyone. Everyone's bodies react differently to medications.
<br />
<br />What kind of quality of life can I expect afterwords?
<br />
<br />My quality of life is absolutely 100 percent amazing. I have been very lucky with my transplant and I find the entire experience very humbling. I work full time and live in the best city in the world. I am able to keep up with other people my age and do what I please. I can travel. Ski. love. Swim. Run. Jump. Skip. Laugh. And do this all without coughing!!
<br />
<br />With that being said, transplant does have the same "roller coaster" feeling that CF does. I have run into various issues over the last 6 years that have to be dealt with immediately when they arise. One day I am fine and the next day I have something wrong that needs to be addressed. Some people may argue that you are trading one set of problems for another. In a sense that is true, however, you are getting a much better quality of life if all goes well. If I kept my old lungs and didn't go through with my transplant, I wouldn't have been trading a set of problems...I would have one big problem...I wouldn't be alive!!
<br />
<br />
<br />All in all, this is a very manageable life and one that I enjoy so much more than I ever could have imagined.
 

Ready2Dance

New member
Sorry to hear that you're facing this decision. I went through all of that 3 years ago and was transplanted on Feb 13, 2009. Here's my blog that starts with the pre-transplant evaluation and goes through transplant to the present day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I don't update it as often now since I'm just sort of busy living, haha, but it's something to look forward to. Glad you came here, it's a great resource!!

Blog:
www.jen-girl.blogspot.com

Best of Luck!!
 

Ready2Dance

New member
Sorry to hear that you're facing this decision. I went through all of that 3 years ago and was transplanted on Feb 13, 2009. Here's my blog that starts with the pre-transplant evaluation and goes through transplant to the present day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I don't update it as often now since I'm just sort of busy living, haha, but it's something to look forward to. Glad you came here, it's a great resource!!

Blog:
www.jen-girl.blogspot.com

Best of Luck!!
 

Ready2Dance

New member
Sorry to hear that you're facing this decision. I went through all of that 3 years ago and was transplanted on Feb 13, 2009. Here's my blog that starts with the pre-transplant evaluation and goes through transplant to the present day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I don't update it as often now since I'm just sort of busy living, haha, but it's something to look forward to. Glad you came here, it's a great resource!!
<br />
<br />Blog:
<br />www.jen-girl.blogspot.com
<br />
<br />Best of Luck!!
 

CountryGirl

New member
I think summer732 covered a lot of sure so I'll just add a few things.

For my eval I spent a week doing diff tests. The main ones are getting your blood drawn for everything, pfts and 6 min walk; a right heart cath; x-rays; CT scan; and you may be ordered to see several specialists. It's time consuming but simple and non invasive stuff...atleast I didnt think so.

Post op I was in ICU for a day and then I went to the step down unit, where I stayed till I was released from the hospital 9 days later. I would have been released sooner but my wound opened up. I did wake up while intubated and since it was in the middle of the night I had to wait till morning before they removed it...it didn't scare me and it wasn't really bothersome. I was just thirsty and hungry!!
-After going home I did pulmonary rehab twice a week for three months. Stuff like walking and lifting a little weight and for three months youre on sternal precautions: cant lift stuff over 30 lbs, can't twist and stuff like that...

-Other stuff you can't do...eat grapefruit, no ibuprofen, & no Pepto-Bismo; both all of which I LOVED pre-tx!! Basically that's it and other choice drugs, mostly the other things differ from center to center, like drinking or eating mushrooms. My center allows both, my drs trust their patients not to overdo it in all the things we do post tx from drinking to scubadiving or sky diving. But really, we can do anything a "normal" person could do.

My quality of life has been great although right now not so much, as you can see I am waiting for a second tx because of chronic rejection. But that's just it, you can't hang on to all the possible bad things that could happen like chronic rejection or infections. You're taking a chance and personally I think its worth it because feeling the wind in your face and the street flying under your feet AND NOT getting short of breath is totally worth it!!
 

CountryGirl

New member
I think summer732 covered a lot of sure so I'll just add a few things.

For my eval I spent a week doing diff tests. The main ones are getting your blood drawn for everything, pfts and 6 min walk; a right heart cath; x-rays; CT scan; and you may be ordered to see several specialists. It's time consuming but simple and non invasive stuff...atleast I didnt think so.

Post op I was in ICU for a day and then I went to the step down unit, where I stayed till I was released from the hospital 9 days later. I would have been released sooner but my wound opened up. I did wake up while intubated and since it was in the middle of the night I had to wait till morning before they removed it...it didn't scare me and it wasn't really bothersome. I was just thirsty and hungry!!
-After going home I did pulmonary rehab twice a week for three months. Stuff like walking and lifting a little weight and for three months youre on sternal precautions: cant lift stuff over 30 lbs, can't twist and stuff like that...

-Other stuff you can't do...eat grapefruit, no ibuprofen, & no Pepto-Bismo; both all of which I LOVED pre-tx!! Basically that's it and other choice drugs, mostly the other things differ from center to center, like drinking or eating mushrooms. My center allows both, my drs trust their patients not to overdo it in all the things we do post tx from drinking to scubadiving or sky diving. But really, we can do anything a "normal" person could do.

My quality of life has been great although right now not so much, as you can see I am waiting for a second tx because of chronic rejection. But that's just it, you can't hang on to all the possible bad things that could happen like chronic rejection or infections. You're taking a chance and personally I think its worth it because feeling the wind in your face and the street flying under your feet AND NOT getting short of breath is totally worth it!!
 

CountryGirl

New member
I think summer732 covered a lot of sure so I'll just add a few things.
<br />
<br />For my eval I spent a week doing diff tests. The main ones are getting your blood drawn for everything, pfts and 6 min walk; a right heart cath; x-rays; CT scan; and you may be ordered to see several specialists. It's time consuming but simple and non invasive stuff...atleast I didnt think so.
<br />
<br />Post op I was in ICU for a day and then I went to the step down unit, where I stayed till I was released from the hospital 9 days later. I would have been released sooner but my wound opened up. I did wake up while intubated and since it was in the middle of the night I had to wait till morning before they removed it...it didn't scare me and it wasn't really bothersome. I was just thirsty and hungry!!
<br />-After going home I did pulmonary rehab twice a week for three months. Stuff like walking and lifting a little weight and for three months youre on sternal precautions: cant lift stuff over 30 lbs, can't twist and stuff like that...
<br />
<br />-Other stuff you can't do...eat grapefruit, no ibuprofen, & no Pepto-Bismo; both all of which I LOVED pre-tx!! Basically that's it and other choice drugs, mostly the other things differ from center to center, like drinking or eating mushrooms. My center allows both, my drs trust their patients not to overdo it in all the things we do post tx from drinking to scubadiving or sky diving. But really, we can do anything a "normal" person could do.
<br />
<br />My quality of life has been great although right now not so much, as you can see I am waiting for a second tx because of chronic rejection. But that's just it, you can't hang on to all the possible bad things that could happen like chronic rejection or infections. You're taking a chance and personally I think its worth it because feeling the wind in your face and the street flying under your feet AND NOT getting short of breath is totally worth it!!
 

Hammer

New member
Well I am almost just 4 months out of my transplant. I am exercising everyday. Walking the dog, jogging a little bit, lifting weights. The exercise does make a huge difference. I think the hardest part is trying to adjust your life style to just taking care of you! I was working full time up until Oct. 1 and than got really sick. I than found out that I would need a transplant and was not able to go home till that happened. I finally came home Jan. 14th. I had a lot of muscle loss so my hold back is really just muscle weakness right now. My lungs are great! I am volunteering when I can, at least 1x a week. For the first 2 months you will not be able to drive or be alone for that matter. They really want someone with you 24/7. Doctor's appt. are 2x a week once you get home. Than blood draws weekly for the first 2-3 months. You will also be getting monthly bronchosopies for the first 3 months as well. They are really not that bad as they make you very sleepy before they do them. I am now just seeing the doctors monthly. Expect pain. They will do their best to manage your pain in the hospital and than send you home on oral pain meds. you will feel like you have a tight rubberband around your chest for about 3 months and than it starts to get better. You will most likely experience acid reflux, stomach achs, but those seem to get better with time. I have a friend who just had a transplant as well and she has the effect of one sided diaphrame peralyisis. It is slowing her recovery a bit. ( my spelling is horrible) This can happen when nerves are cut during surgery. Speaking of.. You will have to force yoruself to cough. Those nerves are cut and you will actually not be able to cough unless you make yourself! This is very important as you want to keep your new lungs clear! They will also have you up and walking at the hospital almost the next day after they take you off the vent. I am very pleased how my recovery is going. I don't cough anymore. I don't have to do vest treatments anymore. I don't even take inhalers. But this is all individual. Everyones recovery is different. I was on a vent 2 weeks before transplant and than left the hospital just 10 days later! good luck to you. I know it is a scary thought but go for it! If you are a candidate for transplant do the test while you feel good and be ready. you don't want to be so sick like I was and than get the transplant. Life is giving you a second chance! Live it up!
 

Hammer

New member
Well I am almost just 4 months out of my transplant. I am exercising everyday. Walking the dog, jogging a little bit, lifting weights. The exercise does make a huge difference. I think the hardest part is trying to adjust your life style to just taking care of you! I was working full time up until Oct. 1 and than got really sick. I than found out that I would need a transplant and was not able to go home till that happened. I finally came home Jan. 14th. I had a lot of muscle loss so my hold back is really just muscle weakness right now. My lungs are great! I am volunteering when I can, at least 1x a week. For the first 2 months you will not be able to drive or be alone for that matter. They really want someone with you 24/7. Doctor's appt. are 2x a week once you get home. Than blood draws weekly for the first 2-3 months. You will also be getting monthly bronchosopies for the first 3 months as well. They are really not that bad as they make you very sleepy before they do them. I am now just seeing the doctors monthly. Expect pain. They will do their best to manage your pain in the hospital and than send you home on oral pain meds. you will feel like you have a tight rubberband around your chest for about 3 months and than it starts to get better. You will most likely experience acid reflux, stomach achs, but those seem to get better with time. I have a friend who just had a transplant as well and she has the effect of one sided diaphrame peralyisis. It is slowing her recovery a bit. ( my spelling is horrible) This can happen when nerves are cut during surgery. Speaking of.. You will have to force yoruself to cough. Those nerves are cut and you will actually not be able to cough unless you make yourself! This is very important as you want to keep your new lungs clear! They will also have you up and walking at the hospital almost the next day after they take you off the vent. I am very pleased how my recovery is going. I don't cough anymore. I don't have to do vest treatments anymore. I don't even take inhalers. But this is all individual. Everyones recovery is different. I was on a vent 2 weeks before transplant and than left the hospital just 10 days later! good luck to you. I know it is a scary thought but go for it! If you are a candidate for transplant do the test while you feel good and be ready. you don't want to be so sick like I was and than get the transplant. Life is giving you a second chance! Live it up!
 

Hammer

New member
Well I am almost just 4 months out of my transplant. I am exercising everyday. Walking the dog, jogging a little bit, lifting weights. The exercise does make a huge difference. I think the hardest part is trying to adjust your life style to just taking care of you! I was working full time up until Oct. 1 and than got really sick. I than found out that I would need a transplant and was not able to go home till that happened. I finally came home Jan. 14th. I had a lot of muscle loss so my hold back is really just muscle weakness right now. My lungs are great! I am volunteering when I can, at least 1x a week. For the first 2 months you will not be able to drive or be alone for that matter. They really want someone with you 24/7. Doctor's appt. are 2x a week once you get home. Than blood draws weekly for the first 2-3 months. You will also be getting monthly bronchosopies for the first 3 months as well. They are really not that bad as they make you very sleepy before they do them. I am now just seeing the doctors monthly. Expect pain. They will do their best to manage your pain in the hospital and than send you home on oral pain meds. you will feel like you have a tight rubberband around your chest for about 3 months and than it starts to get better. You will most likely experience acid reflux, stomach achs, but those seem to get better with time. I have a friend who just had a transplant as well and she has the effect of one sided diaphrame peralyisis. It is slowing her recovery a bit. ( my spelling is horrible) This can happen when nerves are cut during surgery. Speaking of.. You will have to force yoruself to cough. Those nerves are cut and you will actually not be able to cough unless you make yourself! This is very important as you want to keep your new lungs clear! They will also have you up and walking at the hospital almost the next day after they take you off the vent. I am very pleased how my recovery is going. I don't cough anymore. I don't have to do vest treatments anymore. I don't even take inhalers. But this is all individual. Everyones recovery is different. I was on a vent 2 weeks before transplant and than left the hospital just 10 days later! good luck to you. I know it is a scary thought but go for it! If you are a candidate for transplant do the test while you feel good and be ready. you don't want to be so sick like I was and than get the transplant. Life is giving you a second chance! Live it up!
 

azdesertrat

New member
Man, I can't believe so many of you went home from the hosp only 9-10 days out! I had my trans on 6/16/05. I was in ICU for 6 days post trans and total hospitalization was a full month! Since I live 150 mi. from trans clininc we had to stay in an apt for 2 more months afterward. One thing I would warn you; should you become short of breath or your daily home FEV tests show you're losing function tell your coordinator IMMEDIATELY! If they blow you off, tell you 'dont' worry about it' be insistant they do something. When my FEV went down slightly 3 weeks post-op I told my coordiantor and I was ignored,. End result, horrible 'scar-tissue issues'. I endured many (we lost count after 21) outpatient surgeries for scar tissue removal. I wound up having over half of my donated rt lung removed on 10/19/09 because of the scar tissue problems. My trans was not as successful as we wanted but I am very grateful to still be alive. I'm now diabetic and that sucks. I went from working a full time job pre-trans to being medically retired post-trans because of diabetes and a few other complications. It sucks to still have breathing problems after going through the trans but I am still alive. The worst part is not being able to work. I was a truck driver for over 20 years pre-trans and I loved my job. Now I don't think I'll ever work again. Best of luck to you & I'll pray your trans is more successful than mine. BTW- I think I am an anomaly; I know of no one that has had a trans that has had the problems I have, thank God!
 

azdesertrat

New member
Man, I can't believe so many of you went home from the hosp only 9-10 days out! I had my trans on 6/16/05. I was in ICU for 6 days post trans and total hospitalization was a full month! Since I live 150 mi. from trans clininc we had to stay in an apt for 2 more months afterward. One thing I would warn you; should you become short of breath or your daily home FEV tests show you're losing function tell your coordinator IMMEDIATELY! If they blow you off, tell you 'dont' worry about it' be insistant they do something. When my FEV went down slightly 3 weeks post-op I told my coordiantor and I was ignored,. End result, horrible 'scar-tissue issues'. I endured many (we lost count after 21) outpatient surgeries for scar tissue removal. I wound up having over half of my donated rt lung removed on 10/19/09 because of the scar tissue problems. My trans was not as successful as we wanted but I am very grateful to still be alive. I'm now diabetic and that sucks. I went from working a full time job pre-trans to being medically retired post-trans because of diabetes and a few other complications. It sucks to still have breathing problems after going through the trans but I am still alive. The worst part is not being able to work. I was a truck driver for over 20 years pre-trans and I loved my job. Now I don't think I'll ever work again. Best of luck to you & I'll pray your trans is more successful than mine. BTW- I think I am an anomaly; I know of no one that has had a trans that has had the problems I have, thank God!
 

azdesertrat

New member
Man, I can't believe so many of you went home from the hosp only 9-10 days out! I had my trans on 6/16/05. I was in ICU for 6 days post trans and total hospitalization was a full month! Since I live 150 mi. from trans clininc we had to stay in an apt for 2 more months afterward. One thing I would warn you; should you become short of breath or your daily home FEV tests show you're losing function tell your coordinator IMMEDIATELY! If they blow you off, tell you 'dont' worry about it' be insistant they do something. When my FEV went down slightly 3 weeks post-op I told my coordiantor and I was ignored,. End result, horrible 'scar-tissue issues'. I endured many (we lost count after 21) outpatient surgeries for scar tissue removal. I wound up having over half of my donated rt lung removed on 10/19/09 because of the scar tissue problems. My trans was not as successful as we wanted but I am very grateful to still be alive. I'm now diabetic and that sucks. I went from working a full time job pre-trans to being medically retired post-trans because of diabetes and a few other complications. It sucks to still have breathing problems after going through the trans but I am still alive. The worst part is not being able to work. I was a truck driver for over 20 years pre-trans and I loved my job. Now I don't think I'll ever work again. Best of luck to you & I'll pray your trans is more successful than mine. BTW- I think I am an anomaly; I know of no one that has had a trans that has had the problems I have, thank God!
 
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