Help! Need some advice!!

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I was dx 3 years ago and put on oxygen full time..I am 52 prior smoker..quit years ago. I have an Immune deficiency that lead to bronchiatasis and I also battled stage 4 Non Hodgkins Lymphoma 7 years ago lots of chemo. Long story short previous lung dr NEVER did any lung function tests on me...for 3 years..my fault? No..Im not a dr...I went to all my appointments every 3 months...Jump to Dec 2017 this year...I was hospitalized with pneumonia and my right lung collapsed...Had bronchoscopy. Was sent home on 5 liters continuous o2.  New lung dr tells me in hospital that I will need a double lung transplant in 5 years...he was very short about it...A double lung transpant. He did the breathing tests a few weeks ago and they were not good...apparently I also have the paradoxial (sp?) to anything with albuterol in it...and thats what I was on for 3 years...He now has me on Dallaresp and Xopenex..My oxygen levels when I was sick were low...they are now sometimes at 85..lowest I ever went was 78...Nighttime is good 95 or above..This lung doctor scared me...I am a cancer survivor and for 5 years I was agonizing if my cancer would come back...that was horrible having that over my head..now its been 7 years since and this lung dr is telling me in in 5 years I need a double lung transplant...I probably wouldnt even qualify for one because of my Immune Deficiency (Common Variable Immune Deficiency)...and honestly I cant see having such a surgery is a low success rate of even reaching 5 years with the new lungs...or less....I wish he didnt even open his mouth about a double lung transplant but he was so cold about it ..On the first appointment with hm in his office all he did was read my chart, type in his computer and make grunting noises like he couldnt believe what he was reading...My husband and I were so confused...THEN he got up and walked out...our appointment was over and he never spoke to us or answered any of my questions....So...I have an appointment on Tues...I will keep it but honestly would you find another doctor? I am so sad he said this to me and then wouldnt elaborate and just left me hanging...is my life over in 5 years?? 

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  • Posted

    Absolutely, definitely get another doctor;  a second opinion and even a third.  My COPD is not too bad, but I appreciate where you are coming from as I am a survivor of stage 3 ovarian cancer.  Regardless of your circumstances and history, you should never be treated in such a cavalier fashion.

    Big hugs, rainbows and positive vibes.  Please keep us informed.

    Love xxx

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  • Posted

    Hi there, golly what an awful time you have had, yes, personally speaking, I would dr shop until I found someone who wanted to alleviate my fears and directly tell me where I am at. I am on oxy day only and drop to 75 when physically challenged without oxygen. It was difficult to find what was going on, finally referred to lung specialist who got all the tests done then gave me all the information, how serious it was and how to help myself. I am not able to find take many of the antibotics because of severe side effects and have to pay for private script. All this to let you know we are with you in rowing this difficult boat with many holes in it and not a lot of tools to fix it. I was so against dr shopping to my detriment and was not treated correctly which led to serious deterioration of the lungs. Find someone you trust and who you feel is being totally honest and informative of your situation, when you know you will be in shock but it is better to know than not to, at least you can then do things to help yourself. My most sincere best wishes, have been where you are, please think of the great replays you have from the forum, whilst we do not know the medical stuff, we sure know the emotional backwards. Degbx
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  • Posted

    You and your husband need to be prepared on all visits with any lung doctors to be assertive right up to the crossover line for aggression. They are an arrogant lot and my experience in the States is that at best 1 in 20 has the knowledge & skills to back up the arrogance. If I ever find a knowledgeable, kind, polite, compassionate pulmonologist I will know that I am in heaven.

    Still, yours was the worst I've ever heard of. What country? The bronchiectasis isn't a good complication at all, and unlike COPD, that DX instantly shaves 1 to 3 years off our lives no matter how good our health is.

    Your case is worse than my ex's but I'm going to share these 2 things anyway. In '98 he had the flu so bad I took him to the ER. Docs said he'd be dead in 5 years unless he stopped drinking that night -- and he was neither an alcoholic nor a heavy drinker. Died 2.1.18, 20 years later, drank a little up til about 3 years ago then too dizzy all the time.

    In about '05, lung doc (one of the umpteen we've seen between our 2 sets of bad lungs) said he needed lung replacement but couldn't have it due to heart-lung something. He lived another 13 years.

    We women don't get as much wiggle room on anything as the guys because, well, all that repro equipment of ours takes up too much space. Nonetheless, with American docs one must always keep in mind the CYA factor.

    I hope you find a good doc soon.

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