Mayo Clinic Connect
i was told by mayo its nothing serious, any other opinions?
Liked by Merry, Volunteer Mentor
@joangma– Good morning. Here is the site that tells about several options. For the life of me I can't remember the name and it was just posted on Connect! Does anyone know that name for these lung coils?
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Zephyr valves and spiration valves. Google both. I at Mayo Clinic Jacksonville getting Zephyr valves.
Liked by girlbybay, Merry, Volunteer Mentor, fracturedd
@djallan – Hi. How is it all going? Can you tell more about why you are having the Zephyr rather than something else?
Came here to Mayo Jacksonville in May from Oregon for lung transplant evaluation after 5 weeks was denied. My next steps were to explore LVRS surgery and/or Zephyr valves. Was evaluated 3 weeks ago, found a 7.7mm nodule in my right middle lobe on a high resolution CT scan that was not there a month ago.
Dr. Makey and Dr. Bussy wanted to do a biopsy. Dr. Bussy did the biopsy, results came back as noncancerous. Great news
Unfortunately the valves are on hold because after the biopsy I had a pneumothorax.
In the hospital for a week with a tube in the chest.
Just got out of Mayo building 3 hours ago
Can not fly home to Oregon for at least another week because of the pneumothorax. Want to start pulmonary rehab here. If I can start and complete a 12 week program I can get the valves as I do qualify but just delayed.
This place is absolutely amazing. Everyone of my extensive medical team is the best in the world. That's why I travel 2500 miles each way to be hear.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, girlbybay, Merry, Volunteer Mentor ... see all
@djallan– What great news it is about your lung growth. Did you doctors say what it was? I understand that a pneumothorax is common after a lung biopsy. I also had one but didn't run into any problems. I think that it might be the luck of the draw, but very painful. And I assume that it was scary! I know what chest tubes feel like to come out, where you ok with that?
I'm glad that you still qualify for the valves. Do you know what the procedure will be for that once you have recovered?
Liked by Teresa, Volunteer Mentor
Doctors not sure what the nodule was, just glad it's not cancer. They will do another CT scan to check in a few months before the Zephyr valves bronchoscopy procedure.
The worst part of the pneumothorax was the really severe pain in the recovery room. The doctors actually did the tubes in my hospital room. The tube coming out was not too bad.
Being tied up to the chest box, both legs in the clot massagers and all the rest of the wires for vital signs and O2 was the worst thing, just couldn't move for 5 days.
Liked by Teresa, Volunteer Mentor, Merry, Volunteer Mentor, fracturedd
Ugh, I don't miss those days. I'm glad your pneumothorax resolved. Good luck with the zephyr valves.
Liked by Teresa, Volunteer Mentor, Merry, Volunteer Mentor
@djallan– Oh my goodness, this is what I dread – Being awake for tube insertion. I wonder why they didn't do this is the recovery room or while you were under. I can just imagine the pain because the first time that my tubes came out was by an insensitive know it all intern. And it hurt like hot poker was placed inside of me. Being confined is very difficult especially when you have tubes and boxes and things that you are relying on for survival holding you down and I have restless leg syndrome. However I'm sure that it was a huge relief to breath again! I'm glad that you are beyond this now and enjoying some of your time before you go back into the hospital. What are you doing? You are from from home.
Liked by fracturedd
who and where we you going to get the zephyr valves put in. thanks. I need this done also.thanks
they are called zephyr valves
I'm working with Dr. Bussy at Mayo Clinic Jacksonville. He has done more than 15 here and has done over 50 overseas. I really like him.
aurora bay care medical center green bay wi 920-294-1401
because they work so well.
@joangma Can you describe your breathing before and after the Zephyr valves are put in?
no I have not had them as of yet-but most say it just gets better as time goes on they go golfing w/out cart ect
Diagnosed with pneumonitis (known side effect of Keytruda / Pembrolizumab)
After pulmonary function test, Mayo Rochester prescribed antibiotics.
Keytruda infusions have been stopped until “glass” in lungs clear.
Symptoms: Fatigue, shortness of breath, pain in chest
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