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Thread: More Hope

  1. #1
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    More Hope

    I had a talk with the Nurse that is handling my case with Tracleer and she has given me some more hope about my lung disease , she has told me the DR> I am going to see is 1 of 3 Dr's in the country that their specialist is working strictly with people with this lung disease , but she has told me there are 2 other drugs that they use that are used by I.V. 1. is FLOLAN and the othere one is REMODULIN , so I have to think positive and not just give up ,I have to grand sons that I really would like to watch grow up. Now knowing this I just have to realize until I see this DR. I have to fight and take it 1 day at a time and wait until I meet with him and see what he has to say before saying I'm going to give up. So all I need are some Prayers that I know my friends are giving me them around me all I'm asking is that I could get some here at carecure thanks for backing me up in the past .LBUSH49 Have either the Nurses or Wise Young ever heard of either of these Drugs before FLOLAN or
    REMODULIN ?
    Last edited by LBUSH49; 02-08-2009 at 02:59 PM.

  2. #2
    Moderator jody's Avatar
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    praying. where two or more are gathered.

  3. #3
    Larry, you are in my prayers as well.

    Please stay strong. You have come such a long way! I am proud of you!

    Take care and God bless...

    Teena

  4. #4
    I have not heard of either of the drugs - so I am sorry that I can not give you any advice or information on them. Hopefully, you will get answers when you see this new doc. I would strongly encourage you to keep track of your questions and make sure that you take them with you when you go to see him.

    Good luck. You are in my thoughts and prayers.

    CKF

  5. #5
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    Right now I'm very confused noe of the DR.'s or Nurses or , Pharmacist have ever heard of any of these drugs , and they all are very expensive , are they taking advantage of me and my Insurance Company , when the DR. first told me I had this Lung dusease he got right to the point , which I was glad he did , he told me I have a Lung disease that therer is no cure for it all we can do is give you medication to keep from having as little pain as pssable and I would Die from this disease ,this is why when I told him about my plan a of going to the hospital and having my primary DR. gime me Morphine Coma and stopping all my other medications , my primary DR agreed too. I think he is sending me to see this other Dr. just to set my mind at ease , he knows nothing can be done the local DR is a very smart DR. and also is on the board of directors at the hospital , my family don't want to beleave3 this , but right now they got me all medicatned again , I sleep 10 hours a night and take 3 hour naps too. I can't go on living aa life like this, If they could only walk in my shoes for just one day , one of my medications is Coumadin it's a blood thinner and I have to watch what I eat and if there are any medications stopped or added they hav to be notified like right now I have another U.T.I. and I haven't even started any new medications and last week your numers are supossed to be between 2 - 3 last week i was great 2.5 you can't get any better but now knowing I have this infection in my body my Number yesterday was 7.3, I ended up staying at the hoppspital fo almost 2 hours. A person can only take so much of this here . My wife doesn't want to believe this . any advise ? my thoughts on this is go to plan B I getr these chest pains it feel like I'm having a heart attack this is when I go and takke that liquid Morphine , I Take 12 medications a day again I'm so tired so popping pills I just want to go flush them all down the toilet and go to sleep and go to aa peaceful place no wars all love and peace and quiel Lbush49

  6. #6
    Senior Member skippy13's Avatar
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    He may be sending you to the new doctor because there is perhaps some new hope for treatment. Just after you posted last time I got an e-mail from a journal that had info about a new treatment for pulmonary hypertension. I read it and it sounded promising where there was previously no hope. I think it as from E-med now that I think about it. Try looking it up, and take care Larry. I will light the candle again for you.

  7. #7
    Larry, I'll send prayers your way too.

    I totally understand being just so tired of it all, but might I suggest that you seek out counseling for you and your wife? It sounds like you're both facing a whole lot -- having a good counselor could help you through this unimaginably hard time you face together.

    You both are in my thoughts.

    --THC

  8. #8
    Sorry for all of this. What kind of lung disease do you have? I know being in the hospital is so frightening and hard but don't give up.
    Mary
    I want to Rock you Gypsy soul and together we will flow into the Mystic.
    Van Morrison

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