They are putting my girlfriend on the transplant list

[ajmc87]

Hello all,

My girlfriend (31) and I (25) have been officially together for over 6 months now, and we would like to get married one day. However, recently her health has been in a state of decline. Yesterday, at her once-per-3-month lung check-up at the hospital, her doctor said it was time to put her on the list for a transplant.

At this hospital, the wait time for a transplant is almost never longer than 2 months. It is frequently much quicker than that. The success (survival) rate for double-lung transplants at this hospital is %80, which is encouraging. Even with the high success rate, I am still nervous about the potential outcome.

Before I officially asked to begin courting her, I did my research on CF to make sure I knew what I was getting into, so I have known for quite some time that a transplant is in her future. However, it still feels like reality needs to sink in.

Is there anyone out there who has watched their loved ones undergo such a procedure and could give me advice on how to handle this as it moves forward? I am very hopeful for the surgery, but very scared at the same time. I was hoping I could enlist the help of some folks to get some advice, support, and encouragement.

Blessings,
Alex

 

[azdesertrat]

I underwent a double-lung tranplant on 6-16-05. The surgery went as planned; it was performed at University of AZ Medical Center. It is no picnic, but it is very 'do-able'.
I'm very fortunate to have a beautiful Wife who has stuck by me through it all. Believe me, a person can't do this on his/her own.
If you'd like, I'll give you my e-mail address & I can answer any of your questions.
I'm sure my Wife would talk to you & give you her perspective.
Best of luck, 'Pat'.

 

[welshwitch]

Hi! I'm 32 (going to be 33 this month) and no where needing a transplant, but bravo to you for sticking with your girlfriend through this frightening time. Not everyone can handle dating someone w. CF. (I know--I've been dumped before because of it!) But I digress.

Being scared is totally normal. However, it is fantastic that she has transplant as an option. 20 years ago, that was not possible for people with CF. It is a brand new door for many CFers.

I know several people w. CF who have had successful lung transplants and they are LOVING LIFE now!

I would look at this as something to be nervous about, but also a fantastic opportunity.

Good luck to her!

 

[coltsfan715]

I can't speak to what it is like to be in your position, but can say what it is like from the point of view of your girlfriend. I had my transplant about 5.5 yrs ago and am doing great considering. I was diagnosed with chronic rejection shortly before my 5 yr mark, but am stable and maintaining. At this point I do no need another transplant, as people sometimes do with development of chronic rejection. That is a totally different story, however, and we don't need to get into that right now.

As for me I was engaged when I had my transplant. My fiance and I had been dating about 4 years when I was transplanted. Fortunately or unfortunately, however you want to view it (I say fortunately), he and I are no longer together. We split about 2 yrs after my transplant. For us it boiled down to him having issue with my newfound independence.

I bring this up because you say you have only been dating about 6 months. I am assuming with this that for the length of your relationship your girlfriend has been fairly limited in her ability to truly live life the way she would like too. Though I was with my ex for a while before my transplant I was fairly limited in my life for the years that we dated before my transplant. I couldn't work because I always ended up sick and in the hospital. I was limited as to my energy level and my life just kind of revolved around trying to maintain my health. Post transplant I had so much time and energy that I began to pursue all of the things I had always wanted to pursue, but never had the energy to do. My ex had a problem with this, though he always denied it. When we split one of his big complaints was that I wasn't making enough time for him, which wasn't true. I made time for him but I wasn't as available as I had been pre transplant to do whatever HE wanted all the time because I was out pursuing MY dreams and doing what I wanted to do.

I bring this up because though I realize now that I am better off without my ex than I ever was with him, I think that information like what I mentioned needs to be put out there for people. CF is hard to cope with for people that aren't used to it, transplant is too. You are probably just getting accustomed to CF life and now you are having to consider transplant living as well. It is hard - one of the hardest things I have ever done, but worth it. She will have to be committed to herself on a level that many people won't understand. Transplant kind of gives you a trump card to be selfish when considering what you do with life because you have to put your health first in order to maintain and stay healthy and continue living the wonderful life you deserve to live. Not to mention that so much focus is put on all the "health stuff" and "caregiver" stuff that I think people sometimes overlook the mental aspect of transplant. I am not talking about the meds making you crazy or emotional or people having survivors guilt because though that happens, all of those things are addressed pre transplant (most of the time). I am talking about people - especially CFers - who have lived limited lifestyles for much if not all of their lives finally getting the opportunity to live and be healthy, have energy and be able to go out and pursue their dreams. It is hard to get people to slow down once they get started and for good cause.

I just want to put it out there. Talk to your girlfriend ask her what she wants to do after she has a transplant - the list will likely range from simple (laughing) to in depth (go to college, buy a house, travel, do non profit work, etc.) I would make sure that you are prepared for her future goals to become a part of your relationship, if all goes well with the transplant she will likely start pursuing all the dreams she has and she will want you to be there with her for that. For me I wanted my ex to take part, but he wasn't interested in my dreams I just didn't realize that until I started pursuing my dreams and realized he was fighting it every step of the way. Now I have a boyfriend (2 years now) that supports me and encourages me to pursue my dreams, even when I don't really want too .

I will stop now. I just wanted to put that out there because like I said I think sometimes the relationship aspect of transplant gets overlooked. Having supportive relationships are important but it is also important that your family, friends and loved ones understand that transplant won't change you but it will change what you are able to do, it will make you more independent and that is sometimes just as big of an adjustment for the loved ones as it is for the person who had the transplant .

Good luck and I wish you and your lady all the best.
Lindsey

 

[bcl0328]

sorry to hijack, but at what point do they put you on the list? a certain FEV1 %? also, when you are on the anti-rejection meds, do you get sick easily?

 

[lilmac1177]

bcl0328, i've always been told usually around 30% FEV1 they start talking transplant...

 

[MeasureInLove]

Thank you Lindsey for that post! I'm currently on the transplant list and in a serious relationship. I had a relationship end (after a year) because of my CF and having to leave work. It was really hard because obviously I blamed myself and my CF. My partner at the time never communicated to me until we broke up that it bothered him that I didn't work and he felt he had to spend all his time with me. I felt so guilty for putting him in that caregiver role. But now I've been in a great relationship for a year (I was listed five months ago). I've learned from that past relationship and now my partner and I talk about everything. Like you said, it's important to share your goals and dreams for post transplant, but also I'm sure to ask my partner where he sees his career and personal goals in the next couple of years. It's made our relationship so much stronger. It's hard with the uncertainties, like how long we'll have to wait, how long my recovery will be. And of course CF itself provides no shortage of ups and downs. I've also dealt with the whole caretaker thing. I realized that it's something that I have to accept as someone who lives with a chronic illness. And I've realized that my partner wants to be there for support and care for me when needed.
Transplant was mentioned to me when my FEV1 was consistantly in the low 30's. Honestly, when I was listed I thought I was too healthy, but my lung function keeps declining (I'm in the low 20's) so I'm glad I was listed when I was.

 

[BreathinSteven]

sorry to hijack, but at what point do they put you on the list? a certain FEV1 %? also, when you are on the anti-rejection meds, do you get sick easily?

Hi bcl! I think that different centers might have slightly different standards -- FEV1 is probably one component in the decision to list... And, different diseases might be listed at different FEV1 numbers... I think that, in general, the listing consideration and process begins when the FEV1 gets around 25% or less... They shoot for a window where a patient is sick enough to need a transplant, and will not live much longer without -- and the patient, at the time of surgery, also needs to be healthy/strong enough to survive the procedure...

Many of us travel different routes with the anti-rejection meds... The likelihood is that we will get sick easily, more easily because our immune systems are suppressed (not gone, just suppressed...) We are most highly suppressed in the months and possibly year immediately after our transplant, and most vulnerable at that time. After several months, depending on whether we've dealt with rejection or other problems, they may start reducing our immuno-suppression slightly, which makes us less vulnerable to easily getting sick. We're generally always dealing with a substantially weaker immune system than the general public -- but, we also learn to safeguard ourselves -- we're more careful about what we eat, particularly as it applies to sanitation -- we're more careful around crowds and sick/hacking people -- we're more careful about washing our hands and avoiding contact bugs... Sometimes it seems that the reduction to our immune systems is a little offset by the paranoia that keeps us away from the things that might get us sick... I've been on the anti-rejection drugs for 12 years now and I've been VERY lucky -- I've had very few colds or infections, and never been hospitalized for anything like that... (And breathing with "real" lungs blows my freaking mind...)

Hope this helps -- hope anyone else chimes in...

AJMC -- it's difficult to be in your shoes -- I'm living from your girlfriend's perspective, not yours, so I cannot completely understand... I was with my princess for 10+ years before I needed new lungs -- she stuck by me, cared for me, and really gave me the biggest reason to love... People who love us, whether spouses, significant others, boyfriends or girlfriends, can give us incredible strength and incredible desire to survive... But it can also be incredibly difficult for someone to watch someone they care about deeply, deal with this kind of trouble... Often you might feel that you're watching us struggle, and watching us suffer, and there's absolutely nothing you can do about it -- that there's no way for you to help us. But you're doing more than you ever would imagine -- you're there with us -- we aren't alone -- and that is more help than you can ever imagine...

A two month wait is rather amazing -- I don't know where you are... The wait generally depends on the Lung Allocation Score and the availablility of organs in the region / local area... It's sometimes a major crap-shoot -- we just don't know when or if they'll become available -- it can depend upon blood type and body size availability, and many other factors... I was advised I'd likely wait 9-12 months, give or take a few (but that was back in 1997...) I waited 31 months...

It truly is a combination of hope and fear -- the odds are high that, once she receives the lungs, she will survive and the effect will be drastic, compared to what she was living with as long as you've known her (and possibly in her entire life...) But there's also that chance -- small, but significant -- that she will have trouble, or even not survive... I hope you have the strength to deal with this -- and I hope she gets to draw on that strength when she needs it... Love, Steve

 

[CyrilCrodius]

I will personally postpone lung transplant for as long as I can as there are new drugs coming out like Kalydeco that are going to help a great deal. Lung transplant is not a certainty and once it's done, there is no going back. There are people who die of rejection and once you get a transplant, the new drugs that are going to come out will be of no use to save you if something goes wrong with your new lungs.

So ajmc87, if I were her, I would check the drug pipeline and see if drugs are coming that target her mutations. If there are, I'd wait it out for the longest as possible. It's always better for her to keep her own lungs.

I've seen people saying that they got on the transplant list when they were around 40%. I don't know of their other conditions, but it would seem to me like it's way too early if there aren't other aggravating conditions.

 

[BreathinSteven]

I will personally postpone lung transplant for as long as I can as there are new drugs coming out like Kalydeco that are going to help a great deal. Lung transplant is not a certainty and once it's done, there is no going back. There are people who die of rejection and once you get a transplant, the new drugs that are going to come out will be of no use to save you if something goes wrong with your new lungs.

So ajmc87, if I were her, I would check the drug pipeline and see if drugs are coming that target her mutations. If there are, I'd wait it out for the longest as possible. It's always better for her to keep her own lungs.

I've seen people saying that they got on the transplant list when they were around 40%. I don't know of their other conditions, but it would seem to me like it's way too early if there aren't other aggravating conditions.

I would agree with some of the points Cyril makes -- by default, most responsible centers would and should delay/postpone lung transplant as long as possible. And I agree that 40% lung function is probably way too high to consider. I was listed later than my center would have desired -- I was between 10-15% and in a bit of trouble. Prior to the LAS / Lung Allocation Score system that was started in 2005, it was not uncommon to list CF patients long before they needed transplant, basically to accrue time -- back then, it might have been more common to list at 40%, but I doubt that's the case now. With the LAS, your level of illness and lung function is taken into consideration -- it was not prior to the LAS system...

And yes -- there's no going back with lung transplant, and any new drugs for cystic fibrosis will no longer help your lungs in any way, because your new lungs are not your genetic material and do not, and never will have cystic fibrosis. Rejection is ALWAYS a concern -- I'm over 12 years out and it is still a concern for me. It does not go away.

But -- when our lungs are damaged to the point where it is determined that we need a lung transplant within a few years to survive -- my understanding is that Kalydeco, or any of the other drugs in the pipeline to address various mutations, will NOT actually solve the problem. The damage is done -- the scarring and inelasticity will not be reversed by these drugs -- the cystic fibrosis will cause the damage to progress, and the drugs may stop that -- but if your lung capacity is at 15-20%, that number will not improve more than very marginally. If Alex's girlfriend is at 40% -- you can likely live a long, happy, productive life at 40%. If she's at 25% or below, even if a new drug completely ceases the progression and symptoms of her cystic fibrosis -- a case of the flu, an infection, or some other exacerbation could put her in a world of hurt with the likelihood of a worse outcome than the risks post transplant... Love, Steve