ever feel like you cant trust your own body sometimes

[Diane]

I dont lay flat anymore after having my 2 embolizations ( 2 years ago), and i had a nightmare of a time coping with the fear of it all happening again. It took almost the whole 2 years till i started feeling comfortable in my own skin again, and the other night last week i was sound asleep, and was once again awakened by hemoptysis. It wasnt an overly large amount, but enough to make me uncomfortable. I wound up staying in the hospital for 4 days on an iv, which i knew i would have, but the doctor wanted to keep an eye on me. My gosh it just feels like i cant ever let my guard down anymore. I was getting back to enjoying life, and doing things i once enjoyed before the embolizations. I know some of you out there can understand my frustration, and i just wish there was a rhyme or reason to this problem. Since it does seem more frequent right around the time of ovulation, and before my period, i will be going back on birth control to see if that helps. Tried it before and it did seem to make some difference. I stopped taking it when i started feeling like the major problems with hemoptysis were worked out. I would love to go back to the days when i could sleep in a bed, and sleep flat , and bend over and not have to worry about bleeding, and just do all the normal things i used to do without having to constantly fear coughing up blood.<img src="i/expressions/brokenheart.gif" border="0">
~Diane 39 / cf / diabetes / b.cepacia

 

[anonymous]

Diane,

I know where you are coming from, I feel awful every morning! I have found that the quicker I get a move on the better I feel. It is stange though, certain positions I lay in seems to cause the blood flow. I had been attempting to run in the morning which makes me feel a whole lot better for the entire day. The problem with that is the more I run the more I bleed, Catch 22. I have had a CT which of course showed bronchectasis was the source of the blood. My life had been really hectic over the holidays and I haven't had an opportunity to run, oddly enough no blood in the last month. I began back to the gym yesterday so we will see. I love it one my body contradicts itself.

I thank the lord I can still run though.....


Luke, 29 looking forward to 30!!!!

 

[anonymous]

Diane,
I'm going to throw something out there that may or may not have any bearing on your situation. I find that when I clean & use chemicals such as toilet bowl cleaner, shower cleaner, windex, 409, etc. that I sometimes cough up blood the next day. Have you used these type of things more than normal lately? It may or may not have anything to do with anything and you may not have the same reaction, but I just thought I'd share my experience.
It may all be coincidence, maybe not? It's so hard to tell. I wish with CF there were more definitive answers<img src="i/expressions/face-icon-small-confused.gif" border="0">
I feel for you, bless your heart & I will be keeping you in my prayers.
Hang in there!
Lynda<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Are any of you who bleed, treated for fungus infections? That seemed to be my problem, too much fungus and the lungs bleed. I know some docs don't treat the fungus, just curious!

As far as trusting your body. I hear you loud and clear. I just spent nearly a month in the hospital, starting with a pneumthorax that requred a chest tube, two weeks later when it wasn't healing I had a small portion of the lung removed in my upper right lobe, had another chest tube that started leaking air around the tube, finally went home to recover and ended up taking the ambulance back to the hospital after passing out and finding I had bleed between my lung and chest wall and had another chest tube and drainage that removed a liter of blood, and a transfusion of 2 liters. I am again home - sixth day and I am still apprehensive. I too have a hard time laying flat for fear of something happening, I am slowly relaxing.

Good luck to all!
Sarah 27 CF

 

[anonymous]

Hi Lynda,

I have the same problem with chemicals. I can't even clean the bathrooms anymore. I have my husband do it now.

Tammy 44wcf

 

[anonymous]

I know what you mean about not being able to let your guard down. As soon as things are going good, they seem to go bad again. I have coughed up blood a few times but not to the point of needing an embolization. Still, it is still very stressful and awful. Last month I was doing a cleanout and I went to the doctor to find out that I had the best PFT's in the past 4 years! I was so psyched and I felt great. The next day I went to lie down and I felt that I was going to cough up blood. Even though I felt great my body was still messing up and I just wanted to cry. Just when I had had such good news, its like my body reminds me that it doesnt know how to work properly and to not get too excited. Its exhausting. but i guess it is the life we lead. at least it makes other problems seem less important.

Caitlin

 

[Diane]

Now it makes me wonder........ i wasnt using any cleaners the day before that i can remember, but i did however wallpaper my bathroom with my friend and the glue did have an odd smell. I also hung a new shower curtain and they always have the cool new smell . I'd hate to think either of them was the culprit, but then again, i dont have any idea what to imagine. My doctor keeps telling me it isnt caused by anything i did, or how i lay, but i do know that most times i have coughed blood in the years i've been doing it, laying flat seems to be the number one culprut. I thought of the fungus issue and forgot to mention that to my doctor, but i will next time i see him. I started taking acidophilus about a month or so ago, since i am on antibiotics all the time. I just wish there were some concrete answers<img src="i/expressions/face-icon-small-confused.gif" border="0">
~Diane 39 / cf / diabetes / b.cepacia

 

[Diane]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Are any of you who bleed, treated for fungus infections? That seemed to be my problem, too much fungus and the lungs bleed. I know some docs don't treat the fungus, just curious!



As far as trusting your body. I hear you loud and clear. I just spent nearly a month in the hospital, starting with a pneumthorax that requred a chest tube, two weeks later when it wasn't healing I had a small portion of the lung removed in my upper right lobe, had another chest tube that started leaking air around the tube, finally went home to recover and ended up taking the ambulance back to the hospital after passing out and finding I had bleed between my lung and chest wall and had another chest tube and drainage that removed a liter of blood, and a transfusion of 2 liters. I am again home - sixth day and I am still apprehensive. I too have a hard time laying flat for fear of something happening, I am slowly relaxing.



Good luck to all!

Sarah 27 CF<hr></blockquote>
O my gosh Sarah, what you went thru sounds very frightening as well. I hope you are doing better now<img src="i/expressions/face-icon-small-smile.gif" border="0">
~Diane 39 / cf / diabetes / b.cepacia