A Little bit about ME

[R2B_Bonnie]

Short & Sweet .... Diagnosed in 2008 With COPD Stage 4. I also struggled wit Bronchiectasis , Chronic Respiratory Failure, Co2 Retention and Syncope..I was determined to learn & do as much as I can to keep going . In 2015 I was listed for a Transplant . I received the Gift of Lift in 2017 ((FEV1 at this time was 16% . I am a NJ State Captain for the COPD Foundation & I am also a UNOS Ambassador for Transplant . I look forward to chatting with you & making new friends ...

[Fleurbaby]

Hi bonnie, I was officially diagnosed about may 2017. 'I ' knew a year or two b4 that. I am dreading my next appointment at respiratory, as I haven't been able to get the CPAP machine to work for me, I have been trying for about 6months now & I don't know how much longer they are going to persevere with me, I CAN'T WEAR IT! IT'S too intrusive, uncomfortable , I have had constant, very painful mouth ulcers, 1 large each side of my tongue, at least several times a day, I get terrible aches, & possibly 1 or 2 times a day, my tongue will feel like someone has stabbed a knife in my tongue & it makes me scream (literally out loud), I think the pain is in parallel with my throat pain from a swelling in my throat which happens several times a day.

[R2B_Bonnie Moderator in reply to Fleurbaby]

I had to learn to use the Trilogy Non Invasive Ventilator - YIKES - so I hear what you are saying - took me 3 months & many masks (( including a few I purchased myself since my supplier did not carry )) but I finally found 1 I could work with - One TIP I can give is wear it during the day when watching TV for 30 min - tomorrow for an hours & so on .. Best of Luck

[R2B_Michele_RRT Partner in reply to Fleurbaby]

Fluerbaby, Have they tried different masks, nasal pillows or nasal prongs with the CPAP for you? Al ot of time it's getting the right mask, pillows or prongs and the more comfortable settings on your machine.

I've been using CPAP for a year for OSA.

[R2B_Bonnie Moderator]

I am in Hunterdon County

[R2B_Joe Partner]

Great intro Bonnie!!! Of course, I'm a bit biased. So glad you're a part of the Right2Breathe team!!!

[R2B_Bonnie Moderator in reply to R2B_Joe]

Thanks for having me ... now to get use to this platform LOL

[R2B_John Moderator in reply to R2B_Bonnie]

Same thing I said! It's great once used to it.

[R2B_Bonnie Moderator in reply to R2B_John]

Great Minds LOL

[R2B_Bonnie Moderator]

I use to live in Middlesex ((Sayreville) left there about 15 years ago

[R2B_Bonnie Moderator]

My pulmonologist was in Flemington and now I have my local pulmonologist still in flemington and my transplant team in Philadelphia..

[jackdup]

Just want to welcome you here. There is a very nice group here although several more members on the British Lung Foundation Forum as well.

[R2B_Bonnie Moderator in reply to jackdup]

we all learn from each other and it is always good to hear how other locations are treating

[jackdup in reply to R2B_Bonnie]

It is also part of the HealthUnlocked group but deals with several lung conditions not just COPD.

[MELLLL]

Do you mind if I ask how old you are?

And how you feel (and breath) with your new lungs.

[R2B_Bonnie Moderator in reply to MELLLL]

65.. I was 63 when I got my transplant I feel great I can breathe which is amazinv.but it's not a smooth road all the time it has it's up's and down's also just like the disease. it is if not Ia cure are you definitely wind up with a new set of problems and a very big learning curve. Ps. I hot 1 lung so I now have mild copd versus extremely severe

[MELLLL in reply to R2B_Bonnie]

Thanks so much for your answer. I’m so happy things are going so well for you.

Good luck!🙂

[Collie4]

Hello, welcome.

This is a good site with lots of friends who listen and help.

I hope you are doing well.

[R2B_Bonnie Moderator in reply to Collie4]

Thank You ....

[R2B_John Moderator]

Glad you're here, Bonnie. Welcome!

[R2B_Bonnie Moderator in reply to R2B_John]

Thanks John ..

[Feelingblessed2013]

Welcome, glad you are here. I was diagnosed with mild emphysema 6 1/2 years ago. Since then I have lost 2 lung lobes to lung cancer, so no way to determine stage of emphysema due to restrictions in breathing from the surgeries. I also retain CO2 and have sleep apnea. I had to stop using my cpap after my second LC surgery because I was swallowing too much air. Now I just use overnight oxygen.

[R2B_Bonnie Moderator in reply to Feelingblessed2013]

I dont have sleep apnea but I have central apnea - so I now use a Bi_pap . Sorry to hear about the lung cancer - how long ago ?

[Feelingblessed2013]

First cancer was found May 2013 and surgery was July 8th. The second was found at 2 mm in January 2017, and surgery was April 23, 2018. Don't be sorry, it it what it is. I feel very blessed that both times it was found before it had a chance to spread. So far I have been very fortunate.

[R2B_Bonnie Moderator in reply to Feelingblessed2013]

Great that it was a ll found early and Can I say I LOVE your attitude ...

[Feelingblessed2013 in reply to R2B_Bonnie]

Thank you

[R2B_Michele_RRT Partner]

Welcome Bonnie! So glad you are on our team!