Patient Support Group Poll

[michael-lamkin]

Hi Charlene, I’m not involved with a local support group.

michael Lamkin

[charlene-marshall]

Hi Michael,

Thanks for sharing that feedback with us, much appreciated 🙂
Any chance you could fill out the survey above if you were interested in starting one, and how you’d want it to look?

Thanks in advance!
Charlene.

[csbarm]

The support group near me meets only 2-3 times a year at Yale New Haven Health Services. At the meeting in March 2018 I learned that Montefiore Medical Center had just started a lung transplant program. I had already been evaluated and turned down by Brigham and Women’s hospital as a poor surgical risk. I came home from the meeting and called Montefiore and told them my his Tory. They asked me to have my testing results sent to them from B&W.  Within a week or so they called for me to come down for evaluation. They did a few more tests and put me on the transplant list on 4/23/2018. On 8/14 I received a right lung! Within 24 hours of surgery I was on room air and walking. I’m home now and doing very well.

[charlene-marshall]

Hi Christine,

Thanks so much for getting in touch with us and sharing a bit of your experience! This model (of meeting 2-3x per year) is one that many larger treatment centers follow by the sounds of it, as it mirrors the one closest to me as well. They meet 3 times, once per season (fall, winter, spring) and then take the summer off as far as I know. Such valuable information to know about Montefiore Medical Center and their new lung transplant program! Your sharing this might be particularly helpful to some people on this forum who are local to you as well. I am so very glad you learnt this information and then advocated to be put on the waiting list there. I am even more happy that you received your right lung, and so recently too. Congratulations to you! I hope you continue to do very well 🙂

So happy for you Christine, thanks for sharing your story!
Warmly,
Charlene.

[anne-philiben]

We used to have a “Better Breathers” but the meetings were at an inconvenient time for me.  Now I hear they’ve cancelled it for lack of participation.

[charlene-marshall]

Hi Anne,

Thanks so much for sharing information about the former “Better Breathers” group you used to be part of. That is unfortunately they’ve cancelled it, but I am learning support groups are very unique to patient needs which is why we’re collecting so much data before considering an online support group. I appreciate this information, thank you.

Charlene.