To do or not to do

[Ldude916]

I am currently listed for transplant, but I do not have any children (just a hubby and doggies!), but making this decision is hard! My advice is to meet with the transplant team ASAP and find out what it's all about. Research forums, the internet, success stories, go to a support group meeting and get INFORMED!! Knowledge is your best defense to ward off fear and make a good decision for you!! Transplant programs have free social work/psychologists to work with you and your family.
<br />
<br />I believe the statistics of patients that come through the surgery itself is very high (> 95%) so I think your fears of your son seeing you for the last time on a vent is HIGHLY unlikely. Once you get down to FEV of 25% or less, it will become apparent how hard life is when you cannot breathe and suddenly your life of familiarity will become unfamiliar and scary. When this happens, and the doctors tell you that you probably have a year or so left to live, something incredible happens - you welcome the chance for life and to breathe again - no matter what the risks are! To be able live and see your son blossom and participate in life is what you want to remember and what you want your son to experience. All I've ever heard from transplant patients (no matter what struggles they experience post-transplant) is that they'd do it 1000 times over again!
<br />
<br />There are so many scary questions and so many what ifs - but I would recommend getting informed starting now and learning about the process and the tools available to help you and your family through this. Unfortunately, your son may eventually have to deal with loss, but YOU can do EVERYTHING in your power to NOT GIVE UP and show your son your dedication to life! So many transplant are successful for many, many years and people are participating in life! Unfortunately, lung transplant is currently the only way to extend the life of CF patients whose lungs are failing them, so while it's a hard decision, I believe once you become informed about it, the decision will become clear =) Best of luck to you!

 

[Lex]

Ldude....nicely said.

When my FEV1 got into the 20's, my denial was snapped when I couldn't even pick up my one year old son. Life wasn't fun anymore. I was glad I was well into the TX evaluations/education/listing process.

PS. Dying from end stage lung disease SUCKS. Like I said, I was about 3 weeks away from that. Post TX recovery, for me, was SO much easier than dying slowly.

Luckycharm, please feel free to ask any questions of us...we're here to help and share our stories.

 

[Lex]

Ldude....nicely said.

When my FEV1 got into the 20's, my denial was snapped when I couldn't even pick up my one year old son. Life wasn't fun anymore. I was glad I was well into the TX evaluations/education/listing process.

PS. Dying from end stage lung disease SUCKS. Like I said, I was about 3 weeks away from that. Post TX recovery, for me, was SO much easier than dying slowly.

Luckycharm, please feel free to ask any questions of us...we're here to help and share our stories.

 

[Lex]

Ldude....nicely said.
<br />
<br />When my FEV1 got into the 20's, my denial was snapped when I couldn't even pick up my one year old son. Life wasn't fun anymore. I was glad I was well into the TX evaluations/education/listing process.
<br />
<br />PS. Dying from end stage lung disease SUCKS. Like I said, I was about 3 weeks away from that. Post TX recovery, for me, was SO much easier than dying slowly.
<br />
<br />Luckycharm, please feel free to ask any questions of us...we're here to help and share our stories.

 

[Ldude916]

Lex - I think that the fact you were transplanted in 2009 and ran a marathon in 2010 (wow! the whole 26 miles?!) speaks volumes to the quality of life that can potentially result from transplant.

Thanks for sharing your thoughts about PFT's in the 20's. It is a total shock when suddenly you cannot do anything anymore and life isn't fun (I agree!!). You're right that you will be happy that you started the transplant education/listing process before this shock hits. Well said!

Again, good luck Luckycharm!! Get informed and keep asking questions =)

P.S. Lex- sent you a PM with a question after reading one of your news articles from your website.

 

[Ldude916]

Lex - I think that the fact you were transplanted in 2009 and ran a marathon in 2010 (wow! the whole 26 miles?!) speaks volumes to the quality of life that can potentially result from transplant.

Thanks for sharing your thoughts about PFT's in the 20's. It is a total shock when suddenly you cannot do anything anymore and life isn't fun (I agree!!). You're right that you will be happy that you started the transplant education/listing process before this shock hits. Well said!

Again, good luck Luckycharm!! Get informed and keep asking questions =)

P.S. Lex- sent you a PM with a question after reading one of your news articles from your website.

 

[Ldude916]

Lex - I think that the fact you were transplanted in 2009 and ran a marathon in 2010 (wow! the whole 26 miles?!) speaks volumes to the quality of life that can potentially result from transplant.
<br />
<br />Thanks for sharing your thoughts about PFT's in the 20's. It is a total shock when suddenly you cannot do anything anymore and life isn't fun (I agree!!). You're right that you will be happy that you started the transplant education/listing process before this shock hits. Well said!
<br />
<br />Again, good luck Luckycharm!! Get informed and keep asking questions =)
<br />
<br />P.S. Lex- sent you a PM with a question after reading one of your news articles from your website.

 

[coltsfan715]

Lucky,

I am sorry that you are in this position. I have had a transplant, will be 4 years post in May, but I do not have children.

I am going to offer some points that helped me make my decision and some things that I just personally feel each person should consider when it comes to making this decision. My opinions come from my experience, which quite honestly has been nearly perfect, and the experiences I have witnessed first hand, which run the gamut of great to horrific.

I think that basing your decision on statistics as to whether or not you have a transplant is a bad idea overall. You can't go in to this with the idea of yourself being a statistic. Much like having CF each person's transplant experience is different. We all have the same possible outcome and the same possible problems that can arise, but the actual things we each experience is vastly different in some cases.

I think you should at least make an appointment with a transplant center to gather information. The best place to get the info is directly from the horses mouth. I made an appointment at my now center when I was riding the fence about the decision, but more leaning towards no. I made a list of every question that came to my mind, which I highly recommend, and I left space to write the answers, which I also recommend as you will likely not remember everything you are told if you make the appointment.

Take time if you want to weigh the pros and cons, but realize that those may have no real effect on your decision. I weighed the pros and cons for 3 weeks before calling to set up my evaluation. I was still undecided and when I asked my ex what he would do - his response was I am not telling you what I want you to do, but I will ask you - would you be happy if you only got 6 months. My response to that was if I could have 1 amazing day without coughing, wheezing, aerosol treatments, without being on oxygen and so on I would do it. All I want is one wonderful day, just one. That is what made my decision for me.

Talk to a counselor or therapist. I know it may seem like it makes you weak, but it was the best thing I did for myself. I did my research and I found a therapist that specialized in end of life therapy and terminal illness. I loved her and she was what I needed to keep my head on straight.

Realize also that it is normal to be scared - if you weren't scared you wouldn't be normal. I don't care what anyone says at first everyone is scared. Also regardless of what your decision is it is yours and truly yours alone. Yes the decision will affect others, but you are the only one that has to be with you every minute of everyday for the rest of your life. You have to be committed to all the possible triumphs and failures that this transplant may bring, things may happen that are no ones fault, but you have to be committed to making it through and carrying on the path. It is a hard thing to go through BUT it is wonderfully worth it.

Also something to consider and being totally sincere and not trying to pressure you. If you do not have a transplant your outcome will be death. Likely it will be something that you try to fight and you end upon a vent or at some semi incapacitated state for a brief period. If you try for a transplant you may die yes this is true, you may be on a vent or incapacitated for a period of time there is no way to tell, but you may also have a wonderful outcome and many more years with your family. It is a catch 22. Without it death is inevitable, with it death is a possibility but so is living.

If you go to a center for an introductory visit I would try to see if they have a support group where you could talk to other parents maybe - about how they made the decision.

The only drawback I have to asking questions like this - how to decide questions is that you normally get very swayed answers of why wouldn't you or God no I would never.

To me I chose to have a transplant - though 5 years prior to my being listed I was highly opposed to transplant. I had some dear friends that opted not to have a transplant because they didn't feel it was right for them. They gave no real reason other than I don't think it is right for me. Disappointing yes but it was their decision and they are greatly missed to this day. I think the important thing before any decision is made is to have a talk with your support system and make sure they are willing to support you regardless of your decision.

Good luck with making the decision I know it isn't easy but I am sure you will come to the realization of what is right for you and your family.

Best of Luck
Lindsey

 

[coltsfan715]

Lucky,

I am sorry that you are in this position. I have had a transplant, will be 4 years post in May, but I do not have children.

I am going to offer some points that helped me make my decision and some things that I just personally feel each person should consider when it comes to making this decision. My opinions come from my experience, which quite honestly has been nearly perfect, and the experiences I have witnessed first hand, which run the gamut of great to horrific.

I think that basing your decision on statistics as to whether or not you have a transplant is a bad idea overall. You can't go in to this with the idea of yourself being a statistic. Much like having CF each person's transplant experience is different. We all have the same possible outcome and the same possible problems that can arise, but the actual things we each experience is vastly different in some cases.

I think you should at least make an appointment with a transplant center to gather information. The best place to get the info is directly from the horses mouth. I made an appointment at my now center when I was riding the fence about the decision, but more leaning towards no. I made a list of every question that came to my mind, which I highly recommend, and I left space to write the answers, which I also recommend as you will likely not remember everything you are told if you make the appointment.

Take time if you want to weigh the pros and cons, but realize that those may have no real effect on your decision. I weighed the pros and cons for 3 weeks before calling to set up my evaluation. I was still undecided and when I asked my ex what he would do - his response was I am not telling you what I want you to do, but I will ask you - would you be happy if you only got 6 months. My response to that was if I could have 1 amazing day without coughing, wheezing, aerosol treatments, without being on oxygen and so on I would do it. All I want is one wonderful day, just one. That is what made my decision for me.

Talk to a counselor or therapist. I know it may seem like it makes you weak, but it was the best thing I did for myself. I did my research and I found a therapist that specialized in end of life therapy and terminal illness. I loved her and she was what I needed to keep my head on straight.

Realize also that it is normal to be scared - if you weren't scared you wouldn't be normal. I don't care what anyone says at first everyone is scared. Also regardless of what your decision is it is yours and truly yours alone. Yes the decision will affect others, but you are the only one that has to be with you every minute of everyday for the rest of your life. You have to be committed to all the possible triumphs and failures that this transplant may bring, things may happen that are no ones fault, but you have to be committed to making it through and carrying on the path. It is a hard thing to go through BUT it is wonderfully worth it.

Also something to consider and being totally sincere and not trying to pressure you. If you do not have a transplant your outcome will be death. Likely it will be something that you try to fight and you end upon a vent or at some semi incapacitated state for a brief period. If you try for a transplant you may die yes this is true, you may be on a vent or incapacitated for a period of time there is no way to tell, but you may also have a wonderful outcome and many more years with your family. It is a catch 22. Without it death is inevitable, with it death is a possibility but so is living.

If you go to a center for an introductory visit I would try to see if they have a support group where you could talk to other parents maybe - about how they made the decision.

The only drawback I have to asking questions like this - how to decide questions is that you normally get very swayed answers of why wouldn't you or God no I would never.

To me I chose to have a transplant - though 5 years prior to my being listed I was highly opposed to transplant. I had some dear friends that opted not to have a transplant because they didn't feel it was right for them. They gave no real reason other than I don't think it is right for me. Disappointing yes but it was their decision and they are greatly missed to this day. I think the important thing before any decision is made is to have a talk with your support system and make sure they are willing to support you regardless of your decision.

Good luck with making the decision I know it isn't easy but I am sure you will come to the realization of what is right for you and your family.

Best of Luck
Lindsey

 

[coltsfan715]

Lucky,
<br />
<br />I am sorry that you are in this position. I have had a transplant, will be 4 years post in May, but I do not have children.
<br />
<br />I am going to offer some points that helped me make my decision and some things that I just personally feel each person should consider when it comes to making this decision. My opinions come from my experience, which quite honestly has been nearly perfect, and the experiences I have witnessed first hand, which run the gamut of great to horrific.
<br />
<br />I think that basing your decision on statistics as to whether or not you have a transplant is a bad idea overall. You can't go in to this with the idea of yourself being a statistic. Much like having CF each person's transplant experience is different. We all have the same possible outcome and the same possible problems that can arise, but the actual things we each experience is vastly different in some cases.
<br />
<br />I think you should at least make an appointment with a transplant center to gather information. The best place to get the info is directly from the horses mouth. I made an appointment at my now center when I was riding the fence about the decision, but more leaning towards no. I made a list of every question that came to my mind, which I highly recommend, and I left space to write the answers, which I also recommend as you will likely not remember everything you are told if you make the appointment.
<br />
<br />Take time if you want to weigh the pros and cons, but realize that those may have no real effect on your decision. I weighed the pros and cons for 3 weeks before calling to set up my evaluation. I was still undecided and when I asked my ex what he would do - his response was I am not telling you what I want you to do, but I will ask you - would you be happy if you only got 6 months. My response to that was if I could have 1 amazing day without coughing, wheezing, aerosol treatments, without being on oxygen and so on I would do it. All I want is one wonderful day, just one. That is what made my decision for me.
<br />
<br />Talk to a counselor or therapist. I know it may seem like it makes you weak, but it was the best thing I did for myself. I did my research and I found a therapist that specialized in end of life therapy and terminal illness. I loved her and she was what I needed to keep my head on straight.
<br />
<br />Realize also that it is normal to be scared - if you weren't scared you wouldn't be normal. I don't care what anyone says at first everyone is scared. Also regardless of what your decision is it is yours and truly yours alone. Yes the decision will affect others, but you are the only one that has to be with you every minute of everyday for the rest of your life. You have to be committed to all the possible triumphs and failures that this transplant may bring, things may happen that are no ones fault, but you have to be committed to making it through and carrying on the path. It is a hard thing to go through BUT it is wonderfully worth it.
<br />
<br />Also something to consider and being totally sincere and not trying to pressure you. If you do not have a transplant your outcome will be death. Likely it will be something that you try to fight and you end upon a vent or at some semi incapacitated state for a brief period. If you try for a transplant you may die yes this is true, you may be on a vent or incapacitated for a period of time there is no way to tell, but you may also have a wonderful outcome and many more years with your family. It is a catch 22. Without it death is inevitable, with it death is a possibility but so is living.
<br />
<br />If you go to a center for an introductory visit I would try to see if they have a support group where you could talk to other parents maybe - about how they made the decision.
<br />
<br />The only drawback I have to asking questions like this - how to decide questions is that you normally get very swayed answers of why wouldn't you or God no I would never.
<br />
<br />To me I chose to have a transplant - though 5 years prior to my being listed I was highly opposed to transplant. I had some dear friends that opted not to have a transplant because they didn't feel it was right for them. They gave no real reason other than I don't think it is right for me. Disappointing yes but it was their decision and they are greatly missed to this day. I think the important thing before any decision is made is to have a talk with your support system and make sure they are willing to support you regardless of your decision.
<br />
<br />Good luck with making the decision I know it isn't easy but I am sure you will come to the realization of what is right for you and your family.
<br />
<br />Best of Luck
<br />Lindsey

 

[CountryGirl]

You definitely need to make your choice sooner wrather than later. I don't regret getting my transplant one bit!! When you are considered for tx you are expected to only have two more years to live and I wanted more, I was not done living.

You dont wake up with that 'Aaah I can breathe" moment. Instead you have to learn how to breathe all over again and your body has to learn how to work with your new lungs, and yes parts are painful and hard but its completely worth it!

I'm in chronic rejection right now and have been in it for over two years, they're the two words you dont want to hear, but I'm waiting again for my 2nd tx. Even if I knew my second would go exactly like my first, I would still do it again. I have accomplished so much since I got my tx almost 4 yrs ago!! I've been to Australia, I've finally gotten through a semester in college, I've seen my friends get married and my friend give birth, and even talked to my donor's mother...I could go on! Without Mark's lungs I would never have experienced this, I would have died.

There are pros and cons but all I see are pros!

 

[CountryGirl]

You definitely need to make your choice sooner wrather than later. I don't regret getting my transplant one bit!! When you are considered for tx you are expected to only have two more years to live and I wanted more, I was not done living.

You dont wake up with that 'Aaah I can breathe" moment. Instead you have to learn how to breathe all over again and your body has to learn how to work with your new lungs, and yes parts are painful and hard but its completely worth it!

I'm in chronic rejection right now and have been in it for over two years, they're the two words you dont want to hear, but I'm waiting again for my 2nd tx. Even if I knew my second would go exactly like my first, I would still do it again. I have accomplished so much since I got my tx almost 4 yrs ago!! I've been to Australia, I've finally gotten through a semester in college, I've seen my friends get married and my friend give birth, and even talked to my donor's mother...I could go on! Without Mark's lungs I would never have experienced this, I would have died.

There are pros and cons but all I see are pros!

 

[CountryGirl]

You definitely need to make your choice sooner wrather than later. I don't regret getting my transplant one bit!! When you are considered for tx you are expected to only have two more years to live and I wanted more, I was not done living.
<br />
<br />You dont wake up with that 'Aaah I can breathe" moment. Instead you have to learn how to breathe all over again and your body has to learn how to work with your new lungs, and yes parts are painful and hard but its completely worth it!
<br />
<br />I'm in chronic rejection right now and have been in it for over two years, they're the two words you dont want to hear, but I'm waiting again for my 2nd tx. Even if I knew my second would go exactly like my first, I would still do it again. I have accomplished so much since I got my tx almost 4 yrs ago!! I've been to Australia, I've finally gotten through a semester in college, I've seen my friends get married and my friend give birth, and even talked to my donor's mother...I could go on! Without Mark's lungs I would never have experienced this, I would have died.
<br />
<br />There are pros and cons but all I see are pros!