Replies to This Discussion

Permalink Reply by Steve on December 1, 2011 at 2:00am

Hi, is this Joyce?

My name is Steve....I too am in Chronic Rejection. As I explained in a previous post, I had a Double Lung Transplant in Oct. '08 followed by too many complications to mention here. I hope that your progression is not as significant ans severe as mine has been? I was doing seemingly OK as of Feb of 2011, though I was having my usual 3 to 4 bouts of Pneumonia a year....despite my bi-weekly Infusions of IVIG for the Immunoglobulin Deficiency I have suffered for over 10 years......I am sure in hindsight,I probably would never have been given the lungs had they realized just how weak my immune system was, as I have said, my Primary Disease is Sarcoidosis...which has since attacked and claimed my Spleen, and combined with the meds is wreaking havoc with my Kidneys and Liver.

Anyway....as a result, my prognosis is not good. As of August, I was told I likely have only about 6 to 12 months left to live. So far, unfortunately, the description of the anticipated course of my illness has pretty much followed the expected track. I have always worked hard to over-achieve and try to beat out the expectations I am given. But this time, while I try to plan my projects around the house, I just can't muster enough energy to get to them....

I am finding the chronic fatigue is overwhelming. Do you or does anyone else have to deal with this. I realize I may just be shutting down, though I refuse to accept that and look for a way to cope just a little longer.

If anyone has any thought or ideas, please share your thoughts, I would really appreciate it.

Steve D

Permalink Reply by Rachel on December 1, 2011 at 12:25pm

Hello, Steve

I'm very sorry you're going thru this.  Do you believe in group prayer?  I asked because in 2010 before my tx I was in the hospital,  not realizing I was that sick.  One month earlier I had an appointment with the TX group and I was told I wasn't ready, I was still functional and stable. Well I ended up in the micu....I had alot of people praying.  My good friend (one of my support group) went to churches asking for prayer and on one of the last days before I came out of it she stopped by a church who was having noon prayer......they asked her to stay and they prayed for me.  I honestly believe without a doubt these many prayers saved my life.  I was in the hospital for one 28 days.  It took one year before the tx team would even evaluate me again.  They  wanted me to regain some strength back.  Exactly one year later they evaluated me and listed me.  I will pray for you. 

Permalink Reply by Steve on December 1, 2011 at 12:56pm

Hi Rachel,
Yes, I absolutely believe in group prayer. Following my transplant surgery in 2008 I immediately crashed and bled out, forcing me back to emergency surgery to reconnect my aorta...but they were not able to totally stop the bleeding so they left me in a coma without closing my chest......for a week! Anyway, my wife and family was told I was unlikely to make it....so my wife got on the Internet on a program they had showed her called, Caringbridge.com. This allowed her to broadcast to family and friends and even some who previously didn't know me.......and they organized Prayer Groups all over the country.
I was unconscious for 2 weeks that time and to the doctors surprise, I began to come out of it.

My wife and I know that there is no way I would have survived that and several emergencies since without the incredible power of Prayer!

I thank you for your comments, but especially for your concern and your Prayers.
Please know you will be in my prayers as well.

Sincerely,
Steve Durand

Permalink Reply by Steve on January 16, 2012 at 12:50am

Hi all

Well I hope everyone had a safe and happy holiday season.  I feel blessed to still be here....but still declining.....

Right now, one of the most difficult things to deal with is this overwhelming fatigue.  Some days, I have all I can do to manage to get out of bed to take my pills and clean up, have a little breakfast and then back in my recliner and I'm out again!

It gets so frustrating because, even though I know what my reality is....I was brought up with a strong work ethic...so I make my list of things to do every nite.....or morning.....check it twice.....knowing it's more than I could do in 10 days! but they are goals......things to achieve........but lately, I have all I can do to make my list....and then if I am lucky, I might get one minor thing done all week..........(I should put sleep on my list, I would succeed every day!)......but really, I use the computer for most everything....and lately, even early in the morning, I find myself typing and as I type, my head is dropping, my eyes are drooping, I'm falling asleep sitting up.....I just want to finish that email, or letter or whatever....but there I go.....back to sleep.

This is happening more and more......I just wondered if anyone else suffering Chronic Rejection is having such difficulty with severe fatigue.....my biggest problem is I can't stay focused long enough to even read one page of a book or magazine.  Please, if you are familiar with these symptoms or are going through the same or similar things, please write back......

Regards,

Steve D

Permalink Reply by joyceg on January 16, 2012 at 11:58pm

Hi, Steve, I am sure glad to know you are still around. I have really had an interesting time with this Chronic Rejection. At first, I figured that was it for me, then I got fed up with being back on O2, so I would just take it off until finally I was able to go out and work in my garden and plant a few little trees, with my Awesome Auger, which I love and has really let me work for awhile in the yard. and have to sit while I am doing it.       But since winter has arrived here in sunny N. Calif. its cold and very windy where we live, and my lungs just cannot deal with all that at the same time. So I have been able to work a little in the house. I have redone my closet which was my winter project. It has taken some weeks to get thru it all and I am still not done. but I just keep on plugging along.

 Now I have good days that I can do things and bad days that I just cannot do any thing. Those are the days that I would like to take a nap about 10 minutes after I get up.

 Do you take any vitamins of any kind? I have had fatigue problems for years, from my COPD and pulm. fibrosis

days, also it was back then that I finally gave up trying to read as I could not concentrate on anything and I still

cannot concentrate on reading, except the newspaper, I haven't a clue why the newspaper, but thats okay with me.  I do take a LOT of vitamins and I do believe they help me. I am sorry you aren't doing well. I do get tired a lot but nothing to what you are going thru. Does all this depress you? I went thru that for a while after I was told that I was dying, but I got mad and made a few goals for myself, made BIG efforts to get them done, physical stuff, no sitting around, if I am moving I don't get sleepy. I will be praying for you  to feel some

strength and motivation and less sleepy feeling. God bless you, Joyce

Steve said:

Hi all

Well I hope everyone had a safe and happy holiday season.  I feel blessed to still be here....but still declining.....

Right now, one of the most difficult things to deal with is this overwhelming fatigue.  Some days, I have all I can do to manage to get out of bed to take my pills and clean up, have a little breakfast and then back in my recliner and I'm out again!

It gets so frustrating because, even though I know what my reality is....I was brought up with a strong work ethic...so I make my list of things to do every nite.....or morning.....check it twice.....knowing it's more than I could do in 10 days! but they are goals......things to achieve........but lately, I have all I can do to make my list....and then if I am lucky, I might get one minor thing done all week..........(I should put sleep on my list, I would succeed every day!)......but really, I use the computer for most everything....and lately, even early in the morning, I find myself typing and as I type, my head is dropping, my eyes are drooping, I'm falling asleep sitting up.....I just want to finish that email, or letter or whatever....but there I go.....back to sleep.

This is happening more and more......I just wondered if anyone else suffering Chronic Rejection is having such difficulty with severe fatigue.....my biggest problem is I can't stay focused long enough to even read one page of a book or magazine.  Please, if you are familiar with these symptoms or are going through the same or similar things, please write back......

Regards,

Steve D

Permalink Reply by Sherry on February 8, 2012 at 5:36pm

     Hi  my name is Sherry. I was transplanted in 1998 at BWH in Boston for CF.  I have had chronic rejection for about 5 years. I can relate to what others have said about the debilitating chronic fatigue. Like Steve had mentioned, I am a very positive person.  I have overcome many obsdtacles to still be alive at 47 and have CF. But this fatigue whips my butt.  It can be so crushing to be too tired to do normal, simple everyday activities.

My family calls me "the queen of cancel" because I frequently back out of plans.  But, sometimes, I am so tired, I close my eyes to save energy for my lungs. ( Sounds crazy and dramatic, but it works!) I know ahead of time that too many things planned in one day will not work out.

    I have learned some energy-conversation ideas, like not toweling off after a bath or shower, just put on a fluffy robe and lay on the bed until you dry. Pushing a cart at the grocery store is easier than just carrying your O2.  Eating foods that do not require lots of chewing is great when you are exhausted. Puzzle- making can be fun and it requires almost no energy.  We make lots of puzzles at my house.  These are just a few pearls of wisdom I have learned in the last years.

I would love to hear suggestions about how othyers deal with this.

Permalink Reply by nicole on May 24, 2012 at 11:41pm

Ohhh My goodness! I am so sorry to have missed this discussion! I would love to hear any other suggestions about dealing with this chronic fatigue and rejection. One of the things that I have tried and found to help a little is juicing raw vegtables. (kinda like homemade V8). If anyone is interested in receipes, just let me know. Veggie juice is MUCH more tasty fresh. It is worlds away from canned or even bottled juices. And I mean WORLDS away. I hope you all are keeping your spirits up, I know I am struggling. Prayer is SO healing I have found. I just wish I had the energy to attend services! 

Permalink Reply by Mary Jo Lovely on July 7, 2012 at 11:05am

Hello, 

My name is Mary Jo Lovely, I feel like I am reading my story too. I had a single tx 07-01-07 and went into chronic rejection Sept. 2009 I have been on the waiting list since last Aug. Like everyone else I suffer the fatigue and no motivation. I did this week have my check up and discuss this with my Dr. he decided to do another blood gas test to see if my numbers have changed any. Waiting on results now. Hopefully if we haven't been transplanted yet ,that our wait won't be much longer.

MJ