Very Discouraged and Need Some Guidence

[baco623]

Tonight I had one of the most discouraging nights I've had in a long time. It's been two and a half years since I had my transplant and it has only been within the last six months that my pulimnary function has majorly dropped and I found out that I am going to need a second transplant sooner rather than later. Despite all of this I still have to work out as much as possible in order to keep my lung functon some what stable so that I don't get into a major life threatening situation again like with the first transplant. I have been told the stronger you are post transplant the better you will be when you get the transplant. So I am trying to work out in order to stay strong.

Tonight I went to my gym and tried my first Zumba class. I heard great things about the effects of the class plus I love music so I wanted to try it. Within 10 minutes of the class it felt like my lungs were on fire and that I was going to pass out. Within 15 minutes of the class I had to stop, I honestly thought I was going to pass out.

Once in my car, I completely lost it, I couldn't help but cry my eyes out at the major once again decline in my health. It felt like all my hard work over the past two and a half years were all for nothing and all of a sudden it became blatently obvious that I do need a second transplant.

I don't know what to do. I feel so discourage about my health, embarressed that I couldn't even keep up with the 70 year olds in the class and honestly that life feels completely pointless cause I will always be sick and there is nothing I could do about it. How do you pick yourself up when it seems like you take one step forward and get pushed two steps back. I know I have to but I am so discouraged that I don't want to go through the embarisment of working out among normal people.

Any guidence or advice would be greatly apperciated.

Annie
CF since I was born/CFRD since I was 13/double lung tx on 9/3/2010

 

[Twistofchaos]

Hi there,

sorry to hear you're in such a rough spot.

It's hard to give worthwhile advice but to listen to what you have to say.
Setbacks are so hard to take when you fight so hard. On the other hand each day that we're around is a won fight on it's own that we can be very proud of.

It's not that because someone's life is longer and healthier that it suddenly has a point. We learn a lot more in a short time than most people ever will and often our lives are more valuable and richer than 98% of the population that just coasts along.

There is absolutely no shame in not being able to keep up in the gym, do it in your own pace, rest and continue. You're there for you not for anyone else. Also no need to be private about CF in such a situation. If people are curious explain that you got your chest flipped open accompanied by zombieslashermovie-esque gestures and soundeffects. For sure they will understand or atleast never ask questions again.
But a homegym can be an option. It's not for everyone, some people really enjoy the social enviroment and encouragement they might experience from working out in a gym with others. Me I'm not such a sociable person and at home I can cough every other breath, use my O2 machine and play loud angry metal music.

Your hard work has made that a transplant didn't get you down and after two and a half years you're still kicking. Maybe angry and the warranty expired but here you are. Anger can be an infinite source of inspiration and hopefully it can be used to go at life as hard as you can.

 

[Liza]

Annie, first I want to say, I tried Zumba on the Wii, I couldn't keep up with the tutorial! Now, I want to say that I hear what you are saying and I know where you're coming from. Not because I've been in your shoes but because I was there every step of the way when my daughter went through it too. You have every right to get sad, discouraged, MAD, !*&%$ MAD, because chronic rejection sucks! I'm assuming you've been diagnosed with chronic rejection if they are talking about needing another tx. Let that be your driving force. A zumba class might have been a little too much if you're pft's are in their 30's. Again, assuming with the need for a second tx. Have you been relisted?

Yes, being in the best physical condition you can be in prior to tx is to your advantage. My daughter took english riding "lessons" prior to her first tx and for as long as she could before her second, it became more challenging once she needed oxygen. English riding specifically strengthens the legs, you get some core breathing going and being around horses made my daughter happy. Anna' was 19 when she was listed for her first tx, 20 when she got her new lungs and walked out of the hospital at 10 days post tx, she'd have been out at 7 if it hadn't been for one side of her wound opening up. You might want to try swimming, it's an amazing work out. You can take it slow and build up. Most of all, you have to decide if it's what you want, if it's worth all the work, and it sounds as if you've already decided that it is. It's ok to give in once in a while, fall apart and cry... then pull yourself together and say, "OK, I can do this, I will do this as best I can"

Think about how the two years post tx have been. Have they been good? Have you been able to do things you've never been able to do or always wanted to do? Is it just the last 6 months that have gotten you down? Not knowing how it has been for you before them deciding you need another tx, makes it difficult to point out the good stuff that's occurred since transplant. She was diagnosed with chronic rejection at 19 months post tx. She crammed in as much as she could after tx and after diagnosis of chronic rejection, she kept on as best she could. My daughter always said that it was all worth it and that she'd do it again...

There aren't a lot of people on here that have gone through a second tx. That was one of Anna's most difficult things, finding people to talk to that have gone through it a second time, because it's not the same... chronic rejection and CF... the waiting is different, the questions are different, the feelings are different. If you're tx center has a tx support group, I'd advise going. Ask your social worker if there are any second transplantees in clinic that might be open to talking. They can't give you their names unless they've specifically been told that it was OK to do so, but they can give your name to them if the social worker thinks they might be open to talk.

I hope I've something good here tonight, something that helps. You can do this. Hugs from a CF mom.