Hi, I found these forums and figured it's the best place to come to ask a question. I don't have CF, but a 19 year old woman I'm in a relationship with does, and what we've had has gone on for several months, I knew about the CF early on and was certainly willing to deal with it. My major concern about it has always been lifespan. We're both pretty sure that we will be together for the rest of our lives, and both wish to get married someday. I've done a lot of research on CF, probably too much, but have trouble finding examples of how long people lived for for individual cases, and how one can tell the end may be nearing. I realize she'll have a shorter lifespan, and I'd even be happy if she could live to the median lifespan of the average CF sufferer. But after reading many posts here, it seems hers is worse than normal, when I had originally thought it moderate or even less severe than average. Right now she's in the hospital and I worry about her all the time, I know I shouldn't worry so much about the future, but I can't help it. I don't know that much about her past CF, but know her first hospitalization was around six or seven. Her highest lung function numbers recently were 44% a few months ago, then they dropped to 30% about a month ago, and then finally to 25% a week ago, causing hospitilization, I think she has some sort of bacterial infection right now. Her oxygen saturation is usually around 95%, but sometimes drops down to 92-93%, although I'm not sure how important that number is. She doesn't have high blood pressure, which I think is a good sign, and she's not underweight or overweight, which I also think is good. She exercises every other day for thirty minutes, takes all her pills and medications, does all those breathing machines, etc, so she definitely does what she can to be healthy and fight the disease. Every 4-6 months or so she has oral antibiotics, and gets hospitilized 2-3 times a year, sometimes less, and sometimes a year between the hospitilizations. It seems when I read these forums, most people have better numbers and less hospitilizations. I read that people below 30% can consider lung transplants, yet she's never even fathomed the thought, nor have any of her doctors mentioned it to her. I don't know what sort of answers I can find here, but any information or speculation about a situation like this would be much appreciated. I want to be realistic about the future, but do hope she can live til her 30s, maybe more and better treatments could be developed by then. I wish to be optimistic, but sometimes it seems difficult.
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Question about severity
- Thread starter anonymous
- Start date
Oh, Hon. I'm not even sure how to answer your questions, because it's all so hard to take in. Yes. there is such a thing as doing too much research lol. Been there, done that.
No one can ever really tell the fate of another. That's the thing about CF, is it seems so capricious sometimes. People you'd think wouldn't have made it live for many more years, and people you don't expect to survive, don't. Ry had a friend that he fully expected to have outlive him, but he didn't. It was sort of shaking for the both of us.
Is she thinking about a transplant now? Not even to get on the list, but in hypotheticals, as in would she want one or not? That could change her lifespan dramatically. 44% isn't the best of places, but it's not the worst either. No one can really say what it means in terms of years, though.
What I CAN tell you, is hold her while you have her. Love her with reckless abandon. You won't regret it.
If I can help you in any way, either PM me here or email me at RyAllieAhava@Yahoo.com
No one can ever really tell the fate of another. That's the thing about CF, is it seems so capricious sometimes. People you'd think wouldn't have made it live for many more years, and people you don't expect to survive, don't. Ry had a friend that he fully expected to have outlive him, but he didn't. It was sort of shaking for the both of us.
Is she thinking about a transplant now? Not even to get on the list, but in hypotheticals, as in would she want one or not? That could change her lifespan dramatically. 44% isn't the best of places, but it's not the worst either. No one can really say what it means in terms of years, though.
What I CAN tell you, is hold her while you have her. Love her with reckless abandon. You won't regret it.
If I can help you in any way, either PM me here or email me at RyAllieAhava@Yahoo.com
She would be willing to get one, if there were no other options and it was clear she just had a year or two left to live, but not anytime soon, especially given the mortality rate after getting them. I haven't read much about them yet, but I plan to. Right now she just looks forward to new medications and such, and tries to keep her numbers around 40%, although at this moment she's going through a tougher time due to the fact this is the lowest they've ever been for her. I hope that lung transplantation improves a good deal before she'd have to get one. She doesn't even think about that stuff very often, which I think is good for her mental well-being, but not very realistic about the future. I rarely wish to bring up lifespan with her as it's a difficult topic. I think she expects to live about as long as the median, but it seems like those chances aren't very high, and sometimes I wonder if she'll even make it through her 20s, which is a sad thing to think about, yet seemingly impossible to put out of my mind.
I know it's impossible to get out of mind. It's like some obnoxious little twit talking in your ear all the time, even in your happiest moments.
Have you thought about broaching the topic with her? It's not fun to talk about, for sure. But when Ry got to that point it was something we started really talking about, just because I needed to. It most likely won't be a fun conversation, but if you need to get it out there, do.
Ry didn't go for a transplant at all, because we would have had to move so far. But I don't blame you for being discouraged on the statistics of transplants. Hopefully they get better.
Have you thought about broaching the topic with her? It's not fun to talk about, for sure. But when Ry got to that point it was something we started really talking about, just because I needed to. It most likely won't be a fun conversation, but if you need to get it out there, do.
Ry didn't go for a transplant at all, because we would have had to move so far. But I don't blame you for being discouraged on the statistics of transplants. Hopefully they get better.
hello!!!
I am a 20 year old female that has cystic fibrosis!! I am not sure that I can answer any of your questions but i can tell you my story! I really understand where your girlfriend is comming from~! Umm before I met my now husband I NEVER wanted to have a transplant! And i never wanted to talk about it!... about a year and a half ago my husband found me at home barely breathing... I had told him that I had a little cold but I was ok and I would get checked out tomorrow!!! ( we had only been married for two months, been together for two years.. But he is in the service so i didnt see him alot but we wrote and talked on the phone, and had only been living together for about two weeks...) So my husband went to work and told me that he would see me after he got off work... Well, somethin told him to go home for lunch and thank God he did cause when he came home he found me in bed, sweating and barely breathing... I had never really felr that bad before in my life.. and I really didnt think I was that sick... I couldnt catch my breath and i couldnt even get my cloths on let alone walk to the car... So he rushed me the the hospital where they got me in asap... they hooked me up to an O2 sat and it red 50%... They wanted to bag me right then and there in the er... My new hubby at the time couldnt even be in the room cause there was so many people in the room... Thank god they didnt bag me but I had full oxygen on and was only satting low 80's%... So i was put in the ICU where i stayed there for 5 days... My body had been soo sick that I had no nutrition, me being 5'3" had only weighed 82lbs... They told me that if my husband had waited till after he was off of work to come home he would hve found me dead in our bed... So after the ICU i was transfered into the peds floor where i was for 3 1/2 more weeks... My husband and I and my family which had flown over here to hawaii cause my doctor listed me in critical condition and really didnt expect me to live... We got the best information on CF that I had ever had.. I have the best doctor now,... I really would have died if it wasnt for her!!! Anyways, so my husband had known about cf but was no where near knowing alot about stuff... So from then on we learned so much stuff... We then talked about transplant which from that hospitilization I realized that I was so close to dying and for some strange reason God didnt want me to die... He had giving me another chance at life and that people get second chances and even more to live... So if the technology is there( and it has come sooo far since i was little) might as well take all you can get... Life is too short, even without a disease and I realized my husband which is the love of my life had saved my life and i really wanted to be with him for as long as possible... So my pfts are around 35% which is pretty close to needing a transplant... So with the strength of myself taht i have gained and the strength and support and love from my husband who is there for me and my family... I am going to go through with a transplant. So for me to see the light at the end of the tunnel for transplants, it took me to hit very rock bottom.. And im not saying that she is gonna hit rock bottom but that is what it took for me to realize the price of my life!!! Anyways, All i can say is to really watch her and read her.. When she says she is feeling good, make sure she is... And when she is sick take her to the doctors... And really hold her and support her in her every needs... I can tell you that my husband is the only person adn the first person in my whole life that I have ever wanted to live for... He has made such a difference in my life... So just live life with her... If you love her and you understand her... life will take its course... Have fun and dont give up on her... Believe me she is probably doing everything to be alive!!! and with you loveing her is probably a huge source of strength.... Anyways, if you ever need to talk with anyone of if she would like to talk with anyone you can write to me... Cariann2005rob@excite.com I hope this has kinda helped you out!!!
I am a 20 year old female that has cystic fibrosis!! I am not sure that I can answer any of your questions but i can tell you my story! I really understand where your girlfriend is comming from~! Umm before I met my now husband I NEVER wanted to have a transplant! And i never wanted to talk about it!... about a year and a half ago my husband found me at home barely breathing... I had told him that I had a little cold but I was ok and I would get checked out tomorrow!!! ( we had only been married for two months, been together for two years.. But he is in the service so i didnt see him alot but we wrote and talked on the phone, and had only been living together for about two weeks...) So my husband went to work and told me that he would see me after he got off work... Well, somethin told him to go home for lunch and thank God he did cause when he came home he found me in bed, sweating and barely breathing... I had never really felr that bad before in my life.. and I really didnt think I was that sick... I couldnt catch my breath and i couldnt even get my cloths on let alone walk to the car... So he rushed me the the hospital where they got me in asap... they hooked me up to an O2 sat and it red 50%... They wanted to bag me right then and there in the er... My new hubby at the time couldnt even be in the room cause there was so many people in the room... Thank god they didnt bag me but I had full oxygen on and was only satting low 80's%... So i was put in the ICU where i stayed there for 5 days... My body had been soo sick that I had no nutrition, me being 5'3" had only weighed 82lbs... They told me that if my husband had waited till after he was off of work to come home he would hve found me dead in our bed... So after the ICU i was transfered into the peds floor where i was for 3 1/2 more weeks... My husband and I and my family which had flown over here to hawaii cause my doctor listed me in critical condition and really didnt expect me to live... We got the best information on CF that I had ever had.. I have the best doctor now,... I really would have died if it wasnt for her!!! Anyways, so my husband had known about cf but was no where near knowing alot about stuff... So from then on we learned so much stuff... We then talked about transplant which from that hospitilization I realized that I was so close to dying and for some strange reason God didnt want me to die... He had giving me another chance at life and that people get second chances and even more to live... So if the technology is there( and it has come sooo far since i was little) might as well take all you can get... Life is too short, even without a disease and I realized my husband which is the love of my life had saved my life and i really wanted to be with him for as long as possible... So my pfts are around 35% which is pretty close to needing a transplant... So with the strength of myself taht i have gained and the strength and support and love from my husband who is there for me and my family... I am going to go through with a transplant. So for me to see the light at the end of the tunnel for transplants, it took me to hit very rock bottom.. And im not saying that she is gonna hit rock bottom but that is what it took for me to realize the price of my life!!! Anyways, All i can say is to really watch her and read her.. When she says she is feeling good, make sure she is... And when she is sick take her to the doctors... And really hold her and support her in her every needs... I can tell you that my husband is the only person adn the first person in my whole life that I have ever wanted to live for... He has made such a difference in my life... So just live life with her... If you love her and you understand her... life will take its course... Have fun and dont give up on her... Believe me she is probably doing everything to be alive!!! and with you loveing her is probably a huge source of strength.... Anyways, if you ever need to talk with anyone of if she would like to talk with anyone you can write to me... Cariann2005rob@excite.com I hope this has kinda helped you out!!!
maybe you should bring up the topic of transplant. In my experience, some CF doctors can shy away from mentioning transplant because surprisingly they don't know all that much about it. A lot of people are directed to tranpslant centers when it is already to late. As my transplant doctor put it, he is getting patients in the bottom of the seventh with a full count and it is their last swing at the ball. So in any case, it is always better to start thinking about transplant sooner rather than later. Make those important decisions now so that when the time comes you know that she wants to or doenst want to go through with it. If your girl ever has questions about transplants there are many people on this board that has had them and maybe we can help ease her mind.
Margaret
Double lung tx 11.11.04
(Summer732 not signed in)
Margaret
Double lung tx 11.11.04
(Summer732 not signed in)
I talked to her today about transplants, she said she thinks she will get one eventually, but finds it depressing to think about dying either from CF or a lung transplant at a young age. She didn't want me to tell her the mortality rates for lung transplantations so I kept that to myself, but I did mention some people live fifteen years after having it done. I have trouble figuring out when she'd need one and what sort of current state she's in now. Her doctors have never mentioned considering lung transplants, and she's had different doctors at different hospitals, none of them mentioning it. She has never been put on O2 due to CF, she has plenty of energy, doesn't get shortness of breath, etc, even when her lung function numbers dropped down to 25% there weren't really any external signs of it, and she's honest about how she feels. Her oxygen saturations seem to be moderate even with low lung function numbers, and she doesn't have issues with blood pressure, weight, exercise, or any of the other complications like diabetes some CF sufferers get. She's still able to run on a treadmill for 45 minutes or so at 25% without feeling ill. I had read people in the 20s usually feel or seem worse off than she is now, she just seems completely normal to me and doesn't have any problems with breathing. She was very surprised to see the number down that far and cried about it when she was alone. I figured there would be signs, but the only bleh feelings she ever gets are her stomach due to antibiotics. Based on everything else she goes through, I thought she was only affected moderately, so I figured she could live until her 30s without a transplant. The low numbers have made me rethink things and I don't completely understand their significance to mortality and at what point she'd have to consider getting a transplant.