frankie3
"As most of you know i could not have the valve surgery. Went to duke and they discused lung reduction but because of my lung volume test (18%) They decided it would be to much of a risk.So told me to go to physical therapy for 2 months and come back. Well went back and lung volume test is now 10%. Turning me over to transplant team. Go back on June 27th For 5 Day evaluation.I feel like im chasing rainbows.Im so tired."
Hi frankie, and thanks for this update, we appreciate it. I have been following your posts since you began sharing your story here with the community. For ease of reference, here is a link to your conversations: https://copd.net/moderation/users/2426792
My heart goes out to you at this point. I know how much you've been through being evaluated for the various procedures (endobronchial valve, lung reduction surgery, and upcoming lung transplantation). It's understandable how tired you must be feeling now.
I am glad to hear you will be considered for the lung transplantation surgery next. Since the 5-day evaluation process is scheduled for a month from now, perhaps you can use this time to rest and prepare yourself emotionally for this evaluation.
We are all here pulling for you, frankie. If there is anything we can do to assist you on this journey, please let me or any other moderator / team member know. Wishing you well, Leon (site moderator COPD.net)Thank-You It Means So Much For Someone To Really Understand How You Feel.Im Really Trying To Keep My Head Up But It Gets So Hard You Wonder If You Are Always Going To Be Like This . And How Much Time Has Been Wasted On All The Procedures That Didnt Help.
Hi again, frankie - it's my pleasure! After all, this is a large part of what our community is all about - providing support and assistance in any way that we can.
You are certainly in the right community. We understand so much about how you feel and what you are going through. Please do keep us apprised of your progress. We are always here for you!
Warmly,
Leon (site moderator COPD.net)Hi Frankie,
I'm sorry to hear that you didn't qualify for the valve placement.I have an appointment with Duke in July to see if I qualify. It certainly can be difficult to stay positive and it does take all your energy. I rely on my faith and the Bible more than ever for comfort and strength. I will certainly keep you in my prayers as you go forward on your journey to breathe easier! Take care, Mandi
"Having Bad Flareup.Was Told Last Week None Of My Inhalers Where Doing Any Good Because I Didnt Have Enough Air To Get Them To My Lungs.All I Have To Depend On Is Oxygen And Nebulizer.And Its Just Not Enough.Im Getting To The Point I Cant Do Anything Without Running Out Of Breath.Just Sit Here All Day And Watch My Life Pass Me By.My Husband Takes Very Good Care Of Me But I Feel Guilty Asking For So Much And Either Do Without Or Try To Do It Myself Which Most Of The Time I End Up Giving Up Cause Its Not Happening.One Year Ago I Was Working And Doing All My Shopping And Everything I Wanted To Do And Now Im Down To Nothing.Im Having Panic Attacks,Feeling Useless Just Taking Up Space,Cant Do Any House Work, Cant Play With My Grandbabies,And Afraid To Leave Home To Go Any Where By Myself,Afraid To Leave Home Thinking Im Going To Get Sick.But Getting On Some Social Sites Does Seem To Help Alittle,At Least Theres Others That Know What Im Going Through."