Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi all, Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. Leanne uip 1/03 still living in Bears town.Leanne Storch Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 www.pulmonaryfibrosis.org P F It takes your breath away __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Dear Leanne. You don't know me, but I have read your recent message about a lung transplant. I can understand your fear and anxiety. I don't know what to say except I am thinking about you and praying for you. Praying God will lead you in the right decisions and provide peace of mind for you. Sincerely Lynda McFall, Dayton, OHLeanne Storch wrote: Hi all, Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. Leanne uip 1/03 still living in Bears town. Leanne Storch Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 www.pulmonaryfibrosis.org P F It takes your breath away __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Dear Lynda, Thank you. It is in God's hands, isn't it? That is what I have to remember. I did get some good news about the transplant financials, my Cigna transplant coordinator already spoke to the University of Chicago and they are going to work up a letter of agreement. My contention is that I can't afford to pay out of network, but I'm willing to pay something towards it and can't all three of us work it out? We shall see. I'll start the workup next month. LeanneLynda McFall wrote: Dear Leanne. You don't know me, but I have read your recent message about a lung transplant. I can understand your fear and anxiety. I don't know what to say except I am thinking about you and praying for you. Praying God will lead you in the right decisions and provide peace of mind for you. Sincerely Lynda McFall, Dayton, OHLeanne Storch wrote: Hi all, Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. Leanne uip 1/03 still living in Bears town. Leanne Storch Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 www.pulmonaryfibrosis.org P F It takes your breath away __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Leanna, I just recently was diagnosed with pulmonary hypertension and had to have a heart cath. I was scared to death. The first attempt was not good as I could not lay flat but three days later and lots of lasix, I was able and my fears were unfounded. The heart cath was very easy for me. In fact, it was over before I even realized it happened. A little bruise where the needle was inserted, stayed in bed for four hours, but didnt have to lay completely flat. They needed to do the heart cath to know exactly how much damage was done to my heart because of the hypertension. Anyway, there is a new medecine for pulmonary hypertension. It cost $4,000 per month but after some negotiation with Cigna, was able to come to an amiable agreement. So, I take it (Trecleer) but have not seen any results as yet. I was told that the hypertension can be more dangerous than our disease because it does not run a course...you just die suddenly. So, if you have it, I am sure they will suggest this new medecine and just know that Cigna will negotiate. Try not to be too apprehensive about the heart cath. To me, I was so scared and found out it was not so bad. Good luck to you, news Hi all, Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. Leanne uip 1/03 still living in Bears town. Leanne Storch Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 www.pulmonaryfibrosis.org P F It takes your breath away __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Leanne...I wish I could say or do something that would make this easier for you! I know the fear you talk about...just went through my own over the idea of OLbio. You know, we talked about it on the phone. All we can do is bite the bullet and walk through what we have to and I know you know that and I know you will do that. I do pray for God to give you extra courage and wisdom right now! Damn this illness. Love to you. Sher "Don't worry about tomorrow, God is already there" news Hi all, Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. Leanne uip 1/03 still living in Bears town. Leanne Storch Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 www.pulmonaryfibrosis.org P F It takes your breath away __________________________________________________D! o You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Leanne...I forgot to ask you: how is Pulmonary Hypertension diagnosed?? Sher "Don't worry about tomorrow, God is already there" news Hi all, Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. Leanne uip 1/03 still living in Bears town. Leanne Storch Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 www.pulmonaryfibrosis.org P F It takes your breath away __________________________________________________D! o You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 I will be praying for you. E IPF 12/05Leanne Storch wrote: Hi all, Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. Leanne uip 1/03 still living in Bears town. Leanne Storch Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 www.pulmonaryfibrosis.org P F It takes your breath away __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Leanne, I know that you know everything that I could possibly say...except that you may not know your own worth. How much do you think you are worth to your kids. How much are you worth to Mike, your life mate. I can tell you that your value to all of us is priceless! You have so much goodness and humanity inside of you. In your own sorrow at the loss of your health, you chose to give of your time and your self to forming this site and encouraging others. I will tell you what the docs told me. Going through the evaluation does not mean you are giving permission to have your lungs cut out on the spot. It just means that you are going forward and the decision is still yours when the time comes. If they find you have PH, they have treatment for that now. You know that having the heart cath at my evaluation saved my life. The docs nor I had any indication that my coronary artery was blocked. That in itself can cause oxygen deprivation. I was so weak and sob. Go forward with a positive attitude and see where it takes you. At least you will have answers and perhaps a chance to survive. I know your fear....I have been there and it is an overwhelming decision to even consider. But, you are so young and have so much living and loving to do. Hugs and many prayers, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> Hi all,> > Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks.> > Leanne uip 1/03 still living in Bears town.> > > Leanne Storch> Executive Assistant & Patient Advocate> Pulmonary Fibrosis Foundation> 1332 N. Halsted, Suite 201> Chicago, IL 60622> www.pulmonaryfibrosis.org> P> F> > It takes your breath away > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Leanne, I know that you know everything that I could possibly say...except that you may not know your own worth. How much do you think you are worth to your kids. How much are you worth to Mike, your life mate. I can tell you that your value to all of us is priceless! You have so much goodness and humanity inside of you. In your own sorrow at the loss of your health, you chose to give of your time and your self to forming this site and encouraging others. I will tell you what the docs told me. Going through the evaluation does not mean you are giving permission to have your lungs cut out on the spot. It just means that you are going forward and the decision is still yours when the time comes. If they find you have PH, they have treatment for that now. You know that having the heart cath at my evaluation saved my life. The docs nor I had any indication that my coronary artery was blocked. That in itself can cause oxygen deprivation. I was so weak and sob. Go forward with a positive attitude and see where it takes you. At least you will have answers and perhaps a chance to survive. I know your fear....I have been there and it is an overwhelming decision to even consider. But, you are so young and have so much living and loving to do. Hugs and many prayers, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> Hi all,> > Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks.> > Leanne uip 1/03 still living in Bears town.> > > Leanne Storch> Executive Assistant & Patient Advocate> Pulmonary Fibrosis Foundation> 1332 N. Halsted, Suite 201> Chicago, IL 60622> www.pulmonaryfibrosis.org> P> F> > It takes your breath away > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Joyce, Thank you so much for your kind words. That is what I'm going to do - go forth with a positive attitude and hope and pray for the best. I love this group. I don't know where I'd be without you all. It's so comforting to know that there is a place to vent everything. I knew that I could share this all with you and you would understand. Thanks for all the support. LeanneJoyce wrote: Leanne, I know that you know everything that I could possibly say...except that you may not know your own worth. How much do you think you are worth to your kids. How much are you worth to Mike, your life mate. I can tell you that your value to all of us is priceless! You have so much goodness and humanity inside of you. In your own sorrow at the loss of your health, you chose to give of your time and your self to forming this site and encouraging others. I will tell you what the docs told me. Going through the evaluation does not mean you are giving permission to have your lungs cut out on the spot. It just means that you are going forward and the decision is still yours when the time comes. If they find you have PH, they have treatment for that now. You know that having the heart cath at my evaluation saved my life. The docs nor I had any indication that my coronary artery was blocked. That in itself can cause oxygen deprivation. I was so weak and sob. Go forward with a positive attitude and see where it takes you. At least you will have answers and perhaps a chance to survive. I know your fear....I have been there and it is an overwhelming decision to even consider. But, you are so young and have so much living and loving to do. Hugs and many prayers, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> Hi all,> > Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks.> > Leanne uip 1/03 still living in Bears town.> > > Leanne Storch> Executive Assistant & Patient Advocate> Pulmonary Fibrosis Foundation> 1332 N. Halsted, Suite 201> Chicago, IL 60622> www.pulmonaryfibrosis.org> P> F> > It takes your breath away > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Leanne: It seems the heart cath is the thing to do these days. Because of my IPF diagnosis in October, I had a heart cath two weeks ago. No horror story from me. They said lay still for 4 hours and I did. A man came in right after I got to the recovery area and stood for 20 minutes putting pressure on the artery in my groin where they had gone in with the cath. The point is, that little plug of a scab in the puncture area must not pop out or there can be severe bleeding. I don't recall any pain with the procedure. I feel like I remember people in the room, like talking and stuff, but I think they gave me something in the IV to make me relax and forget. When you get home, don't lift anything over 5 pounds for several days.. again to protect that little plug. I got good news from my cath. I am 68 yrs old and have very high cholesterol for which I take meds, but the test showed my arteries OK. My husbands trip to the doc (he is diabetic), by golly, the doc sent him in for a heart cath. He is OK too and the test was without incident. It seems that everybody is getting a heart cath these days. What is with that??? PEACE and LOVE; Gale in TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi Leanne I know it is scary, but look at the alternative. I had a heart cath in July as part of the 3 day evaluation and the cath wasn't bad but the lying flat for several hours was the pits. Have you been around people who have had transplants? It is an uplifting experience. Pink Joyce ipf 3/06 > > Hi all, > > Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. > > Leanne uip 1/03 still living in Bears town. > > > Leanne Storch > Executive Assistant & Patient Advocate > Pulmonary Fibrosis Foundation > 1332 N. Halsted, Suite 201 > Chicago, IL 60622 > www.pulmonaryfibrosis.org > P > F > > It takes your breath away > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Leanne, Did the coordinator tell you about the transplant fundraising program? I think it is a national program. It covers post transplant expenses such as prescriptions a place for family to stay if you travel to a transplant center. pink joyce Hi all, > > Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. > > Leanne uip 1/03 still living in Bears town. > > > Leanne Storch > Executive Assistant & Patient Advocate > Pulmonary Fibrosis Foundation > 1332 N. Halsted, Suite 201 > Chicago, IL 60622 > www.pulmonaryfibrosis.org > P > F > > It takes your breath away > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Joyce Wish i could say things as well as you do. pink joyce > > > > Hi all, > > > > Just saw the lung transplant doctor yesterday after having my fun, fun > pulmonary function test and unfortunately, I am decreasing. I went down > about 10% and he wants to start the lung transplant work up. I'm scared > $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even > sure I want this lung transplant and I'm struggling with the physical, > mental and financial hardship that this could put my family through. I > don't like pain. I don't like hospitals. I guess my doc is concerned > about pulmonary hypertension because now it seems as if my heart is > being affected. He's going to do the heart cath and after hearing the > horror stories about that, I don't wanna go. I just so needed to vent. > Thanks. > > > > Leanne uip 1/03 still living in Bears town. > > > > > > Leanne Storch > > Executive Assistant & Patient Advocate > > Pulmonary Fibrosis Foundation > > 1332 N. Halsted, Suite 201 > > Chicago, IL 60622 > > www.pulmonaryfibrosis.org > > P > > F > > > > It takes your breath away > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Thanks, other Joyce. But, you say things just fine. Glad you are on this site. I appreciate you all so much. Joyce > > >> > > Hi all,> > >> > > Just saw the lung transplant doctor yesterday after having my fun,> fun> > pulmonary function test and unfortunately, I am decreasing. I went> down> > about 10% and he wants to start the lung transplant work up. I'm> scared> > $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even> > sure I want this lung transplant and I'm struggling with the physical,> > mental and financial hardship that this could put my family through. I> > don't like pain. I don't like hospitals. I guess my doc is concerned> > about pulmonary hypertension because now it seems as if my heart is> > being affected. He's going to do the heart cath and after hearing the> > horror stories about that, I don't wanna go. I just so needed to vent.> > Thanks.> > >> > > Leanne uip 1/03 still living in Bears town.> > >> > >> > > Leanne Storch> > > Executive Assistant & Patient Advocate> > > Pulmonary Fibrosis Foundation> > > 1332 N. Halsted, Suite 201> > > Chicago, IL 60622> > > www.pulmonaryfibrosis.org> > > P> > > F> > >> > > It takes your breath away> > >> > > __________________________________________________> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Dear Leanne, You must know by now how much all of us love you and how eternally grateful we are that you started this site. I haven't been online for a few days and it took me about 100 posts to get down to your original message about your lung decrease. First of all I am so sorry to hear your news. Like you ( and I am sure most of us) I am terrified of a lung transplant and then alternately feel quilty for complaining because there are so many of us who aren't healthy enough to qualify. It is such a scary choice and one I wish with all my heart you didn't have to make. I , along with the rest of the group, am keeping you in prayer and asking that your stats move back up. I know our prayers work-since I was down to 34% lung volume in June and have miraculously moved up to 64% since September. It may just be a postponement of the inevitable, but it is a postponement I am treasuring for as long as it lasts. May God bless you and keep you safely in the palms of his hands, and may he grant you the wisdom to make the very best decisions for your health and your future. Leanne Storch wrote: Hi all, Just saw the lung transplant doctor yesterday after having my fun, fun pulmonary function test and unfortunately, I am decreasing. I went down about 10% and he wants to start the lung transplant work up. I'm scared $#%^@%/. I'm feeling very overwhelmed. I'm the person that isn't even sure I want this lung transplant and I'm struggling with the physical, mental and financial hardship that this could put my family through. I don't like pain. I don't like hospitals. I guess my doc is concerned about pulmonary hypertension because now it seems as if my heart is being affected. He's going to do the heart cath and after hearing the horror stories about that, I don't wanna go. I just so needed to vent. Thanks. Leanne uip 1/03 still living in Bears town. Leanne Storch Executive Assistant & Patient Advocate Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 www.pulmonaryfibrosis.org P F It takes your breath away __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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