Still waiting for lungs...

[farbeyond1]

It's been months since I've logged onto the site, or since I've kept up with my emails. I guess my motivation has been slowly decreasing with each passing week that I'm not called in for transplant. Currenly my FEV1 is 24%, the transplant clinic (Brigham and Womens in Boston) tells me that I'm "high" on the list. As of March 29th there was 2 people that fit my criteria "size, blood type" ahead of me on the list. I'm assuming that I won't be called in until the end of this year.

What an interesting change of lifestyle. I've lived with CF for 28 years now, it's all I know. As a child I was sick, I have been to the hospital countless times from birth till now. Although I was sick, I did graduate high school attend the community college for a few years and work full time as a tax analyst for a life insurance company. Roughly 2 years ago I quit my job because of my health decline. I was going to just go back to college full time and find something meaningful to strive towards. College didn't go well, as I coudn't make it through a full semester without needing over a month out due to sickness. Since then I was able to find something I am passionate about. Helping others and finding ways to reach out brings me a sence of satisfaction that I've never had before. Before my health declined to this degree I started doing some work for the CF community to try and make our lives more understood to those who take care of us. I'm grateful to have been able to find something that gives me joy, but my life is now on pause until I am transplanted.

How are you all doing out there? Life brings us down at times, but we've gained a lot of strength from our experiences.

I hope you're all well,
Mike 28wCF/awaiting a lung transplant

 

[anonymous]

Dear Mike
I am so sorry to hear that your wait has been long. How long have you been on the transplant list? I am glad to see that you have motivated yourself to visit the forum again and i hope that you will recieve lots of inspiration from others and know that you will be in my thoughts and prayers for your transplant, as i am sure you are aware... try to stay positive and take care of yourself until you get your call.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[sarabeth87]

I know it's easier said than done, but STAY MOTIVATED!!! Motivation is what keeps us going. You'll be in my thoughts and prayers.

 

[Landy]

Thanks for sharing & keep the faith! Please keep us updated on how the wait/transplant goes.

 

[EnergyGal]

Hi Mike

Waiting for the transplant is the hardest part. When you get your lungs a new life is worth living for. I went through two transplants both ten years a part and each the waiting for the lungs was the hardest part. I can say that exercise when you can even it is walking slowly is the best that you can do for yourself. Especially light weight training. The more movements you make through the day the stronger you will be. After the transplant they get you moving quickly so the stronger you are going into the process the better you will do.

We have some Cf post transplant folks on transplantbuddies.org check us out if you have time.

Be well
Risa

 

[Jem]

Reading your post Mike gives me inspiration and strength. I really love how you reach out beyond your limitations due to CF and give of yourself to help others understand what CF is all about. I have been doing volunteer work for the past 7 years and you are right that it does bring a joy, satisfaction and for me a peace that I have never known before. I can't imagine giving up these activities but realistically one day I may have to. But I just take one day at a time and until then I will keep going. Even though you are unable to do the type o f reaching out that you have done in the past you are still helping by educating and inspiring others through your words like you did in this post. Keep writing. I hope and pray that you are graced with many more joyful years through the gift of a transplant so that you may continue on inspiring and helping those whose lives cross your path on this awesome journey of life. <img src="i/expressions/heart.gif" border="0">

 

[Diane]

Hi Mike,
I have always read the hardest part of a transplant is the waiting as Risa said. Just keep as busy as you can and also as Risa said, as active as you can. I wish you the best and will say a prayer for you that the wait isnt too long. Please update us as to how you are....we all care <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hang in there and yes stay motivated and think good thoughts!!!! Good luck and I pray you get your new lungs real soon!!!!!



Jennifer 34 years old with CF and CFRD

 

[kayleesgrandma]

Dear mike,
Well, guuess what, you're on another list--my prayer list!! Hope you're feeling well right now. Know we're all pulling for you.<img src="i/expressions/rose.gif" border="0">

 

[Emily65Roses]

Hey you know I'm a fan of you (and Katy, for that matter)... If you don't get lungs, I'll start cursing the world until things go my way. I'm evil, I have powers like that. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

 

[JohnnaMarie]

Mike:

Thank you for taking the time to share some about yourself on here. You have done so much in your life so far and I am sure you have much to do after you get your new lungs. Keep taking excellent care of your body so that when you get your new lungs they will have a great home to enjoy for many years to come! I wish I had the power to bump you up to the very top of the list, so you could get your new lungs tomorrow! Hang out with us here. We will help you pass the time until you get them and start feeling much better.

 

[skh]

Mike, thank you for the update. It's easy for me to say but please keep your body healthy for those new lungs that I just know you are going to get. I will be keeping you in my thoughts and prayers.

 

[AmyKins]

Hey Mike- Im going to Brigham's too for a transplant- I actually didn't even get evaluated yet (thats coming real soon)..can you tell me what its like @ that center?
what is criteria...like blood type? and body type? Well good luck to you!!!