Please help me (husband needs transplant)

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Cbegley

New member
I'm going through a really hard time right now & my husband is too. He is the one with CF. We went to the Doctor today and he wasn't feeling well in the first place, but his lung function is 19%. We are both really scared, I sometimes think I am more so than him, but I don't think he wants to show he is scared. He isn't on an transplant list. About a year and a half ago he was, and they called him telling him they had a pair of lungs for him and he declined them...he said he wasn't ready. His doctor felt at that time, that he made the right choice. His lung function has been about 26% for almost 2 years but it hasn't gotten down to around 22, now he is at 19 (because he is a little sick) He was prescribed cipro and we are due back in a week to tell the Dr. how he is feeling and re-check his lung function. But this time his Doctor really wants him to consider being put back on the list.

I want him to be on the list as scary and heart wrenching as it is, I think it is the best. He really has no reserve if he was too get hit with a bad case of something <img src="i/expressions/face-icon-small-sad.gif" border="0"> I don't know how to push him to decide that and to accept that getting an transplant would be best at this point. I will support him in whatever he does but can someone give me some advice on this whole subject. Someone who has had a transplant, their experience, how they feel-are they happy? How was recovery? Just EVERYTHING. He needs to talk to someone to see how theirs was like. And any advice on how to go about taking care of him once he does have the surgery (if he does) <img src="i/expressions/face-icon-small-sad.gif" border="0"> Please, and thank you so much...

22..married to a wonderful guy (23) who has had CF all his life.
 
C

Cbegley

New member
I'm going through a really hard time right now & my husband is too. He is the one with CF. We went to the Doctor today and he wasn't feeling well in the first place, but his lung function is 19%. We are both really scared, I sometimes think I am more so than him, but I don't think he wants to show he is scared. He isn't on an transplant list. About a year and a half ago he was, and they called him telling him they had a pair of lungs for him and he declined them...he said he wasn't ready. His doctor felt at that time, that he made the right choice. His lung function has been about 26% for almost 2 years but it hasn't gotten down to around 22, now he is at 19 (because he is a little sick) He was prescribed cipro and we are due back in a week to tell the Dr. how he is feeling and re-check his lung function. But this time his Doctor really wants him to consider being put back on the list.

I want him to be on the list as scary and heart wrenching as it is, I think it is the best. He really has no reserve if he was too get hit with a bad case of something <img src="i/expressions/face-icon-small-sad.gif" border="0"> I don't know how to push him to decide that and to accept that getting an transplant would be best at this point. I will support him in whatever he does but can someone give me some advice on this whole subject. Someone who has had a transplant, their experience, how they feel-are they happy? How was recovery? Just EVERYTHING. He needs to talk to someone to see how theirs was like. And any advice on how to go about taking care of him once he does have the surgery (if he does) <img src="i/expressions/face-icon-small-sad.gif" border="0"> Please, and thank you so much...

22..married to a wonderful guy (23) who has had CF all his life.
 
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summer732

New member
Hi,

If you want to send me a PM and I will give you my e-mail address. That way, your husband can feel free to ask any questions that come to mind and I can answer them for him (according to my experiences).

I'm 7 years out of my transplant so I can shed some light on the process for you both.

Marge
 
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summer732

New member
Hi,

If you want to send me a PM and I will give you my e-mail address. That way, your husband can feel free to ask any questions that come to mind and I can answer them for him (according to my experiences).

I'm 7 years out of my transplant so I can shed some light on the process for you both.

Marge
 
C

CrisDopher

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cbegley</b></i> now he is at 19 (because he is a little sick) He was prescribed cipro and we are due back in a week to tell the Dr. how he is feeling and re-check his lung function. </end quote>

Cipro? That's it?? Does your doctor expect significant improvement in a mere week? Something is amiss here. Isn't it standard to put people like us on a cocktail of antibiotics all at once? Personally, I'm finishing up a two-week IVs + orals stint. Counting my inhaled, I've been on five antibiotics all at once. I've never been on less than two for an exacerbation.
 
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CrisDopher

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cbegley</b></i> now he is at 19 (because he is a little sick) He was prescribed cipro and we are due back in a week to tell the Dr. how he is feeling and re-check his lung function. </end quote>

Cipro? That's it?? Does your doctor expect significant improvement in a mere week? Something is amiss here. Isn't it standard to put people like us on a cocktail of antibiotics all at once? Personally, I'm finishing up a two-week IVs + orals stint. Counting my inhaled, I've been on five antibiotics all at once. I've never been on less than two for an exacerbation.
 
C

Cbegley

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CrisDopher</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cbegley</b></i> now he is at 19 (because he is a little sick) He was prescribed cipro and we are due back in a week to tell the Dr. how he is feeling and re-check his lung function. </end quote> Cipro? That's it?? Does your doctor expect significant improvement in a mere week? Something is amiss here. Isn't it standard to put people like us on a cocktail of antibiotics all at once? Personally, I'm finishing up a two-week IVs + orals stint. Counting my inhaled, I've been on five antibiotics all at once. I've never been on less than two for an exacerbation. </end quote>

Well, he is on Minocycline but he takes that everyday anyway, he just put him on Cipro in addition to the minocycline and azithromycin that he takes. He is begining to feel sick so I guess that is why he only put him on the Cipro. I expect that he will probably be admitted next week when we go in. He goes in for a week normally then goes home on antibiotics (Iv like you,) for 2 weeks.
 
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Cbegley

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CrisDopher</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cbegley</b></i> now he is at 19 (because he is a little sick) He was prescribed cipro and we are due back in a week to tell the Dr. how he is feeling and re-check his lung function. </end quote> Cipro? That's it?? Does your doctor expect significant improvement in a mere week? Something is amiss here. Isn't it standard to put people like us on a cocktail of antibiotics all at once? Personally, I'm finishing up a two-week IVs + orals stint. Counting my inhaled, I've been on five antibiotics all at once. I've never been on less than two for an exacerbation. </end quote>

Well, he is on Minocycline but he takes that everyday anyway, he just put him on Cipro in addition to the minocycline and azithromycin that he takes. He is begining to feel sick so I guess that is why he only put him on the Cipro. I expect that he will probably be admitted next week when we go in. He goes in for a week normally then goes home on antibiotics (Iv like you,) for 2 weeks.
 
C

Cbegley

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i> Hi, If you want to send me a PM and I will give you my e-mail address. That way, your husband can feel free to ask any questions that come to mind and I can answer them for him (according to my experiences). I'm 7 years out of my transplant so I can shed some light on the process for you both. Marge</end quote>

Thanks Marge, I'll do that.
 
C

Cbegley

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i> Hi, If you want to send me a PM and I will give you my e-mail address. That way, your husband can feel free to ask any questions that come to mind and I can answer them for him (according to my experiences). I'm 7 years out of my transplant so I can shed some light on the process for you both. Marge</end quote>

Thanks Marge, I'll do that.
 
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Tracy390

Guest
My daughter had a double-lung transplant followed by a kidney transplant almost 5 years ago. Her FEV1 was also down to 19% & she was just hanging on. I must say it was the best decision she made. Without it she would not be here today. I will admit it was hard to go through but worth every minute of it. Your husband was very lucky to receive a call saying they had lungs for him because Amber waited 2 years for her. The opportunity may not come up again or they may consider him too "sick" for a transplant. I would just suggest you both make a decision & stand by one another. I wish I could say more to help you feel better but ultimately it's up to your husband. Good luck with whatever you decide.
 
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Tracy390

Guest
My daughter had a double-lung transplant followed by a kidney transplant almost 5 years ago. Her FEV1 was also down to 19% & she was just hanging on. I must say it was the best decision she made. Without it she would not be here today. I will admit it was hard to go through but worth every minute of it. Your husband was very lucky to receive a call saying they had lungs for him because Amber waited 2 years for her. The opportunity may not come up again or they may consider him too "sick" for a transplant. I would just suggest you both make a decision & stand by one another. I wish I could say more to help you feel better but ultimately it's up to your husband. Good luck with whatever you decide.
 
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cftransplant

New member
Your husband has to have the drive and will to fight and survive. Not much that anyone can do to give someone this mind set or personality. The will to survive is needed. Those that are tourist and not into epic battles may watch as life passes. Some are driven and willing to dig in the fingernails going over the cliff and try and fight until the last breath. Not much anyone can do to give someone this mindset.

I have talked to many that did not have the "desire" to go through a tough but interesting process. I talked to a fellow who had some friends do poorly post TX and after a long conversation, he is 8 years out and I own the guy a dinner over the sad football game the other day.

I was in a debate with my wife and doctors with an FEV-1 of around 19% on my chances to live more than a month or so. In my mind, my quality of life was gone, with only one chance to spend more time with my wife. The surgery with cepacia at 50 years of age was tough, the pneumonia post TX and many interesting complications was quite a story. Today my risk is becoming senile. Post TX I have had many fantastic adventures and memory's with friends and my wife. Just got in from XC skiing with my dogs. Tomorrow, in for blood work and a PFT and another fun activity I can't mention because my TX doctors would recall my lungs. Should be downhill skiing in a couple of weeks after my knee heals up from some surgery, some river running this summer. My PT is varied, constant, and my feeling is exercise or die. Yes there are many issues post TX, but not being around to struggle and deal with them would have resulted in a much more boring life, in my opinion.

I have lived with cepacia since 1995. I have shot up IV drugs on a chairlift. I have rafted whitewater on oxygen. All prior to my TX. Some days are more fun than others, yet I do not regret my decision for a nano second. To have my adventure continue is priceless and winning the biggest LOTO in America, a chance at more life with loved ones.

If you have any questions, send me a telephone number and I will give you a call, you can talk to my wife on her tough time with the drama of the TX.

CF TX 61 cepacia, 11 years out double lung TX
 
C

cftransplant

New member
Your husband has to have the drive and will to fight and survive. Not much that anyone can do to give someone this mind set or personality. The will to survive is needed. Those that are tourist and not into epic battles may watch as life passes. Some are driven and willing to dig in the fingernails going over the cliff and try and fight until the last breath. Not much anyone can do to give someone this mindset.

I have talked to many that did not have the "desire" to go through a tough but interesting process. I talked to a fellow who had some friends do poorly post TX and after a long conversation, he is 8 years out and I own the guy a dinner over the sad football game the other day.

I was in a debate with my wife and doctors with an FEV-1 of around 19% on my chances to live more than a month or so. In my mind, my quality of life was gone, with only one chance to spend more time with my wife. The surgery with cepacia at 50 years of age was tough, the pneumonia post TX and many interesting complications was quite a story. Today my risk is becoming senile. Post TX I have had many fantastic adventures and memory's with friends and my wife. Just got in from XC skiing with my dogs. Tomorrow, in for blood work and a PFT and another fun activity I can't mention because my TX doctors would recall my lungs. Should be downhill skiing in a couple of weeks after my knee heals up from some surgery, some river running this summer. My PT is varied, constant, and my feeling is exercise or die. Yes there are many issues post TX, but not being around to struggle and deal with them would have resulted in a much more boring life, in my opinion.

I have lived with cepacia since 1995. I have shot up IV drugs on a chairlift. I have rafted whitewater on oxygen. All prior to my TX. Some days are more fun than others, yet I do not regret my decision for a nano second. To have my adventure continue is priceless and winning the biggest LOTO in America, a chance at more life with loved ones.

If you have any questions, send me a telephone number and I will give you a call, you can talk to my wife on her tough time with the drama of the TX.

CF TX 61 cepacia, 11 years out double lung TX
 
A

azdesertrat

New member
My FEV was 13% when I was transplanted.
Transplant isn't as bad as it seems.
If you have the will to live you JUST DO IT! When you don't have a choice than you go through with it.
Please tell him if he wants to talk with someone who has been through it I will be more than happy to talk with him.
If you want, I'll give you my e-mail & after that, my phone number. I would like to help.
Best of luck, you're in my prayers, 'Pat'.
 
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azdesertrat

New member
My FEV was 13% when I was transplanted.
Transplant isn't as bad as it seems.
If you have the will to live you JUST DO IT! When you don't have a choice than you go through with it.
Please tell him if he wants to talk with someone who has been through it I will be more than happy to talk with him.
If you want, I'll give you my e-mail & after that, my phone number. I would like to help.
Best of luck, you're in my prayers, 'Pat'.
 
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mackenziesmom

New member
My son received his double lung transplant in May, 2011. He has done very well and is now running, going to school and busy all the time. His recovery went more quickly than I thought it would. BTW, he was 21 at the time of the operation with lung function at 19 %.
I understand your anxiety but the whole process was not as bad (for patient and caregiver) as I thought. If you need more information, send me a message.
Talking to other people who have been through this helps--a lot.
joan
 
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mackenziesmom

New member
My son received his double lung transplant in May, 2011. He has done very well and is now running, going to school and busy all the time. His recovery went more quickly than I thought it would. BTW, he was 21 at the time of the operation with lung function at 19 %.
I understand your anxiety but the whole process was not as bad (for patient and caregiver) as I thought. If you need more information, send me a message.
Talking to other people who have been through this helps--a lot.
joan
 
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