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Message |
Niki
Member
Username: Niki
Post Number: 3
Registered: 12-2010
| | Posted on Saturday, February 05, 2011 - 05:55 pm: | 
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Hi I am wondering if anyone has had trouble with fatigue? I had a bilateral lung transplant in 2006 and have been dealing with chronic rejection. Unfortunately I also have only 23% of my lung function left. However, I am determined to try all I can get the most out of my body. I have a really poor appetite and have always had trouble eating. So I do struggle with good nutrition. Has anyone had similar problems? The fatigue that I experience is crushing. I don't know what else to do. Can anyone help?
Niki
Bilateral Lung Tx
Colorado |
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Hostess Rise'
Board Administrator
Username: Rise
Post Number: 15654
Registered: 05-2003
| | Posted on Saturday, February 05, 2011 - 07:41 pm: |
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Hi Niki
You are a pretty young lady.
Check out this thread that I created a long time ago. If you can buy the book Energy medicine and practice the daily routine, You will feel more energy or shall I say you will not feel nearly as drained.
http://www.transplantbuddies.org/tbx/messages/29187/11510.html?1291319087
there is a whole lot of reading. If you like what you read, I would buy the book. Call the number at the top of the page and mention Transplantbuddies and they will give you a discount.
Eating well balanced mini meals might help boost your appetite. I was born to eat LOL
I love healthy food. My junk food consists of only healthy carbs.
I hope to answer all your questions regarding the book. If I cannot answer your questions, I know who I can ask if I cannot help you.
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 5225
Registered: 07-2007
| | Posted on Tuesday, February 08, 2011 - 11:03 pm: |
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Hi Nikki:
I had Bronchiolitis Obliterans pre transplant which is just like BOS or chronic rejection post transplant. I was one of those lucky 3-5% that get this disease prior to lung transplant.
I remember the fatigue very well. I would get so tired (not sleepy tired) that I would fall asleep at my computer or in a chair in the middle of a conversation. I also had a lot of trouble triggering the portable O2 canister conserving unit because I got so tired of working that hard to get the air to come out. It got so much for me that I hardly went anywhere. If we had to take a trip, my husband loaded the BIG tank into the car so that I could use continuous flow.
The things that I did to help the fatigue: I exercised everyday. I would sit on the floor and use my weights and dyna bands. I would take 2-3 hour nap in the afternoon. I would take a shower after dinner so I would have more energy and then go to bed early. I used a supplement drink called Benecalorie. It helped with my caloric needs since I was burning so many calories just breathing. I also had appetite issues, but the Benecalorie really helped. I also took a nutrition shake twice a day.
I hope some of this helps. I hope that you can stay stable or possible get listed for another transplant.
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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