Consultation at Stanford : So today has... - British Lung Foun...

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Consultation at Stanford

Rhonda2121
Rhonda2121

So today has been somewhat emotional. Met with Doctor Mooney and went over my health history. He suggests I advance forward with testing and qualifications for double lung transplant as per my portfolio of lung information suggests. He wants me back within a week or so, as soon as insurance gives authorization. OMG......Reality hits me in the face. I knew this was coming, researching, and following my stats. But WOW...... possibility of needing this within months is factual. So I will here from them soon and take steps in that direction, and make a quality decision upon further assessment of testing. I just do not feel as sick, or that close to help needed, but I do want to find out if I qualify, and see their Extensive test results.

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That’s a scary place. Does one do the transplant and hope for the best? Or would I have more time not doing it? Hard decision knowing exactly when to do it.

Golly gosh Rhonda- everything seems to be happening all at once. I notice from your photo, that you dont appear to need supplementary oxygen (?)- so I'm curious as to the immediate rush for a huge operation as a double lung transplant. Obviously I'm no medical professional, so its only my thoughts and curiosity, but you look well,are breathing on your own and its just one question ,if it was me,that I would ask. Apologies in advance if I've offended you by asking....I hope you don't mind.

I do use oxygen almost all day. But I am able to be ok for periods of time. But upon an episode I can drop to low 80’s and sometimes into high 70’s with exertion. My DLCO has me st 21% but I find that unbelievable, so would like results from Stanford to know exactly where I’m at. Then can make a quality decision.

Hi Hun, You know the old saying "Don't judge a Book by it's Cover" I too Look well, because I make the effort, I have been waiting for 2 years 6 months for a Double Lung Transplant, It does get very Weary and sometimes I feel quite poorly. But, I stay Positive, Exercise like this Lady, my Oxygen is my Life saver (including all the Meds), I tend to take my Canular off for Photo's and Touch my Lippy up. I get told an awful Lot " You look Well" Nothing wrong with you. I don't want People to see me Breathless, gasping to Breathe, so I take it all in my Stride, Smile and say " Yes I do, Don't I" I have a Mobility Scooter & Wheelchair, can manage to walk with the aid of a walking stick for a few Metres... I wake up every Morning with a Zest for Life. This Lady probably Does also. Wishing you a Very Happy Christmas and Keep your Fingers Crossed Please that We get a Lung (Double for me)Transplant.....xxxx

Rhonda2121
Rhonda2121
in reply to Hacienda

Thank you for your positive energy. That’s my goal, try to look like I’m fine, exercising, playing golf. I can’t guarantee, if I’ll qualify, if a viable sent of lungs would become available, but I know I have to make the effort now while I able. Because if you wait to long that window of opportunity could pass you by. I’m in hopes I don’t truly require this for years, but my stats from local pulmonary doctors show this. I feel they are incorrect cause I feel good a lot, but have some very scary episodes.

Hacienda
Hacienda
in reply to Rhonda2121

Hi Hun, it's not an easy Decision. I was given a week to say Yes most Definitely I want a Transplant. OK, it's been a long time waiting, as they have to be 100% match. In that time I have learned to exercise, now every day. I can't do hard Physical as I'm not strong enough, I am on oxygen 16+ hours. I Have had 4 Valves inserted in my right Lung, they do help with my Breathing. Good luck Rhonda, please do keep us updated. Have a lovely Christmas .and good things for New Year. Xxxx

Caspiana
Caspiana
in reply to Rhonda2121

Hi Rhonda. 👋

I am waiting for a single lung. I too look okay without my cannula , I look healthy. 😊 You are right about the window of opportunity. Waiting too long could be a mistake because we could get too weak to undergo the rigours of the operation. I have been waiting for almost two years like my dear friend Hacienda . I hope you get evaluated and you know where you stand. The wait time in the States is relatively short compared to Japan and the U.K. Once you do get listed , I am sure your hospital will have a support group, it would be good for you to join it and possibly acquire a mentor too. Here in Japan, we don't have these, but I noticed in the States they do. I think it's a terrific idea.

I hope you keep us updated. 💓

Sending hugs and love,

Cas xx 🙋🐕

For two very gorgeous looking ladies @Rhonda2121 &

@Hacienda.... I wish I could put my lippy on like a few years ago but the meds give me the terrible tremors and I look like a circus clown lol! I hope I've not offended anyone as reading Rhonda's post about a double lung transplant and you Hacienda,still waiting...maybe you could help with giving some advice etc. Only a thought. Sillier things have been posted on here, but sometimes surgeons make it sound so easy when in effect,it really is something you cannot be wrong in gaining as much info as possible.

Good night to you both and hopefully chat again soon.x

Dear SH, thank you for your lovely reply. Yes, I agree about giving advice. I can't honestly advise medically, re Transplant. Once I am Pro, then I could. I see Rhonda has mentioned she may have to wait a few Years yet. So, maybe not as advanced as I am. The waiting is the Hardest thing to do. I will continue to have a Happy Good Life in the time I have, which Im sure is a good few many Years yet. Make the most of each Day Hun, practice putting your Lippy on and Have a Wonderful Christmas. Love n Hugs.🎄🎄🎅🎅🎅🎉🎇🎊xxx

Inspirational post. Thanks. Good wishes

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Wow I hope after your testing if you decide to go ahead that your life would be transformed and be able to enjoy a long and happy life free from this dreadful disease all the luck in the world

Good luck with everything Rhonda

It is,a hard decision. Hopefully if you under go this operation it will bring you much relief and a better quality of life. Best of luck to you.

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