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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo
Replies to "My name is Christa, I have a child's glee about life, so I am a Unicorn...."
Well now I am just tearing up. Thanks again, this is definitely the most comprehensive site. I will ask about the blood, They took about10 vials!! The infectious disease doc in Boston wants me on the pills everyday! But at 5'11" I got down to 122 pounds, I looked like a praying mantis, when i took them! hah My UCLA doc said 2 scary things to me, Failure to Thrive, and Enjoy your life, which is why i now fly to Boston. Yes second opinion are crucial!!!
@unicorn .. Christa I know well what you mean .. I initially lost 18% of my body weight .. I now kind of feel I am "skin and bones" .. not the attractive woman I feel I have always been .. BUT what is .. IS. I say my 3 "gratitudes" every morning and every night! ALL you have to do is look around you to be VERY clear how blessed we really are! Focus on what we HAVE AND ARE .. NOT what is not!! Keep up your good work and keep coming back .. we are here for you! Hugs! Katherine
Katherine, you said the blood comes and goes. all my docs say to go in the hospital when i bleed, but when i did, they just put me on an IV and gave me TB antibiotics until they ruled out TB then I went home. This morning I did not go in, I just dont want to . I don't think there is anything they can do. Do you always go in the hospital? or do you wait it out? I'm not asking what to do, just what others do. thanks xo
@unicorn .. Christa all I can say is YOU must be the judge. When I say MY blood comes and goes .. that is BECAUSE MINE is minor .. blood clots the size of say a nickle .. blood fresh and old colored sputum .. I am NOT talking about excessive blood! Mine frightened me in the beginning until I was told it was merely a symptom of the Bronchiectasis .. Dr. Aksamit asked me to DEFINE it .. a teaspoon .. etc. I have NEVER had even a teaspoon of blood .. so YOU must be the judge. Hope that helps you .. BUT I have to run to the ER enough with my husband .. I don't have ANY desire to run there for myself unless really NEEDED! When we DO go to ER .. the automatic procedure IS IV and antibiotics .. typical procedure!! You be your own best judge! Hugs! Katherine
Ok Katherine, mine wasn't much of a bleed this morning, but if it is a lot, I might go in. I will ask my docs if it is due to bronchiectasis or MAC. Not sure if the pills help the bronch but I feel better taking them if I bleed. I will try pills til I see the docs again. thanks xo
@unicorn .. Christa ONLY YOU know your body as well as you .. NOT me .. not your doctors .. YOU follow your own best instincts .. YOUR gut feeling! We will support you every step of the way .. we're rooting for you! Hugs! Katherine
Hello Christa, So glad you are feeling a little less fearful. I see you
have been conversing with Katherine; she is a wealth of knowledge and comfort. I
remember the first time I coughed up blood. I was terrified! All I could think
of was Doc Holiday in the movie 'Tombstone'! I have not had that happen in
several years now. I live near the ocean too. I feel like it has greatly
improved my health. I moved here five yrs ago and I feel so much better.
Hugs - Terri M.
Me too! I thought of Doc Holliday, the lunger, we are lungers. haha Why do you not bleed anymore? Did you do something? did it stop on it's own?? xo
It stopped on it's own probably due to being on monthly maintenance
antibiotics. For example, I am on my 10 day cycle of 500 mg Cipro. Next, I will
be on a 28 day run of Tobramycin. I take these two drugs alternately. Prior to
these two, I alternately took Cipro & Doxycycline. I caught pseudomonas last
fall, so that is why they switched me to tobramycin. Honestly, I feel better now
than I have in the last ten yrs. Still have fatigue, but at least I am not
hacking all of the time.
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@unicorn, Christa, so glad we can help! As you read you will learn the questions you need to ask to become your own best advocate .. testing done by Jewish is a good idea! Ask about the blood .. but I know for me it is my Bronchiectasis and after I knew that I quit worrying about it when it happened .. the blood just comes and goes. Also remember .. FEAR is lack of knowledge .. continue to read the back pages .. KNOWLEDGE IS POWER!! The fear will go away when you gain that knowledge over your journey .. that we ALL share with you! Sending you a Big Hug! Katherine