Bronchiecstasis & pneumonia

[MtLdy35]

Diagnosed with brochiecstasis in 2004. Have 65% lung capacity. Been recuperating from pneumonia since late March. I’m on oxygen therapy. After 2 follow up visits (& mri & chest c-rays), was told if lungs don’t return to the health prior to the pneumonia, may have to consider a lung transplant. That sound way too drastic a step. Does anyone have any experience with this situation or heard of this?

[Shellc]

About 13 years ago when I went on oxygen therapy lung transplant was talked about with me , I felt I wasn’t bad enough for it but thought I would go along and be assessed and to find out a lot more info . Afterwards it actually scared me a bit and was kinda told u swap one set of doctors for another as u have to be monitored closely and have to take anti rejection meds . The result for me was no transplant as my anti bodies were too high . I was disappointed even though it wasn’t right for me st the time I may well have wanted it further down the line. My consultant left me with the words , make sure to try and exercise for 30 minutes a day and u will help yourself tremendously. I have a treadmill now and try and walk in that . But I have to say I can be quite bad at keeping it up at times. Transplant is definitely not for everyone x

[MtLdy35 in reply to Shellc]

Thanks Shellc. Think my Pulmonologist also mentioned ‘holes’. As with anything dealing with western medicine, I’ll always keep searching for the least invasive treatment etc.,. trials & stem cell research. Meant to say I’m born & raised in USA. So anything regarding my health from doctors here is met with mistrust due to us having health insurance & not proper health care system.

[Mandy6513 in reply to Shellc]

How high were your antibodies, mine are in the high 80s but I'm on the transplant list .

[MtLdy35 in reply to Mandy6513]

None of those tests have been done yet. I think that is just too drastic a leap (& wouldn’t have anything done in USA). Was going to get 2nd & 3rd opinion anyway after getting the pneumonia. The practice I’m using has a virtual monopoly in my small city (& so does the medical supply). I’ve always used alternative/wholistic and eastern herbalists over the years. Non-GMO, organic etc as much as possible. American medicine/health care systems are a disgrace to the modern world. Always looking for a better approach etc.

[MtLdy35 in reply to Mandy6513]

Don’t have that info but will after consulting with other doctors.

[MtLdy35 in reply to Mandy6513]

Hi Mandy6513. Thanks for reply. If not too personal, can you tell me what respiratory issues you had that got you to the place of needing a transplant?

[Mandy6513 in reply to MtLdy35]

Hi. No I'm happy to share that information . I have cope, bronchiectasis and colonised pseudomonous and a fev 1 of 24% at the time which is now 18%

[Mandy6513 in reply to MtLdy35]

Sorry I haven't been on here for a very long time so have put my replies in the wrong places so hope it hasn't confused you too much. I have edited and deleted .

[MtLdy35 in reply to Shellc]

Thanks for all the information ur sharing. It helps a lot. Hope u will also get more opinions. New things everyday! I’m rooting for you!

[Shellc]

I forgot to say I have bronchiectasis too x

[Shellc]

Have u ever thought of cannabis oil ?

[MtLdy35 in reply to Shellc]

Just came across that for asthma treatment. Already have medical marijuana card so going to look into that. Thx!

[Shellc]

I also take vitamin d with k2 and magnesium which has cut down my infection rate lots

[MtLdy35 in reply to Shellc]

I haven’t had pneumonia in over 32 years & no other chest infections etc. May have to have a steroid shot once every 3/4 years so not a lot of episodes or problems until pneumonia this year. Haven’t used steroid inhaler Symbicort regularly in years due to concerns about using steroids for over a decade. Mainly eat organic, natural, non-GMO etc as much as possible. Just wondered if anyone else had gone from having pneumonia to jumping to a lung transplant. Just seems drastic jump. Anyone know of any trials etc?

[Mandy6513]

I think your Fev1 has to be 30% or less to be considered for transplant but I'm not certain . I hope you feel better and pick up soon. It takes at least 6 weeks to recover from a chest infection so probably takes a few months to recover from pneumonia .

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