Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?

@shilo14 a granddaughter !! how wonderful I have 5 incredible adorable grandsons two of whom were born after my prognosis of 6? months...it has been 9 years!!!! Even with the struggles I wouldn't give up one day! We just have to find quieter activities sometimes.

@shilo14 You mentioned in your post you had a portable concentrater...do you also have the large machine you use in the house? I use tanks because my oxygen company said I couldn't have both concentraters. WHO said I am not sure...insurance co...medicare
I am not sure they are accurate. Travel would be so much easier with a poc !!! Even just to go to Mayo. My husband is very hesitant to travel anywhere using the tanks and/or hauling the big machine so we go no where.

good afternoon everyone. My right phrenic nerve was damaged (paralyzed) during surgery to remove a Thymic tumor. My lungs were seriously damaged from the intense radiation I had following surgery. I am on oxygen 24/7. The rest is a long story you can check my history. But I definitely know how losing your ability to be as active as you were is difficult to accept. Keep pushing your self I disconnect once in awhile (on good days) just to get a break and I go out to my garden etc. I also take metoprolol and also captopril to TRY to keep my heart in check it still hangs around 100-110 consistently with some variations and I also have just recently been having a lot of problems with my blood pressure after being on the medication for years. You can find ways to be more active and to adjust your breathing. My problem is my mind doesn't always accept my limits and I push myself to hard but most time its worth it. I have a roller coaster of a journey because with all the struggles I have also been blessed. Look hard enough and you can find some good. Just seeing the sun shine and NO RAIN RIGHT NOW is a blessing. We were lucky and only a bit of water in basement considering what some areas around us look like! Sorry to be so short but have to run. will check back in later

Hello again. Dr Matthew Kaufman has interesting and helpful insights for people of all ages with phrenic nerve damage. I await your reply if you read more about the successes he and his staff have had. Linda

Thank you, glad to have found this group.

@shilo14

I am so glad that you shared many of your successes in your post. It sounds like it has not been an easy road but you have accomplished much in both your breathing and your acceptance of your situation.

I look forward to hearing from you again!

Teresa

@alison2

I am sorry to hear that you are dealing with so many issues. The damper on your activity level has to be difficult. Was the ablation to deal with a rapid heart rate?

How are you dealing with these changes in your lifestyle?

Teresa

Good morning Alison,
At three months I was still extrememely breathless also. I had constant oxygen and even then struggled if I went out on the deck or tried to walk in the yard with my portable POC. Don't lose hope; it does get better.
My heart rate still gets extremely high as my heart struggles to help keep me oxygenated. I'm on extended release Metoprolol to lower my racing heartbeat.
I have very low blood pressure, so it is a balancing act as Metoprolol also lowers your blood pressure.

It has only been three months but I also have heart issues so now I am considered handicapped. I can barely walk anywhere it has definitely put a damper on any level of activity I wish to have. I cross my fingers and hope within the next nine months that it returns to normal function. The ablation also doesn’t seem to have worked so I have no tolerance for any type of activity ☹️.

I also had my right phrenic nerve sacrificed during my surgery for squamous cell thymic carcinoma. My invasive tumor was involved with both phrenic nerves, and as my surgeon tried to free the right nerve it was damaged; he opted to not attempt to disentangle the left phrenic nerve to avoid putting me on a ventilator for life. I was told the damaged nerve can regenerate at one mm per month. My surgery was six years ago and while my nerve never regenerated, I have regained some breathing ability through my body adapting.
I now have very well developed neck muscles and was told I also breathe with y newly developed muscles in my intercostal spaces (between my ribs). I tried some specialized breathing PT, but didn't see any benefits. I have progressed from needing 3 liters of oxygen 24 hours a day, to just using O2 at night for sleeping, as it is difficult to move air in the reclining position, to now just using a CPAP machine at night, which splints my right lung open so that the left lung can function more efficiently.
I haven't researched having a phrenic nerve transplant in several years, but when I did, it sounds like very difficult surgery and had a low success rate. I certainly have limitations due to my breathing issues, but I can live with them! I can't swim laps, or climb any hills, or exercise really hard - but I can hold my new granddaughter, I've attended two of my sons weddings, and life is good. I don't get the hiccups and when I shiver or laugh really hard I struggle to breathe, but I'm happy to be alive after initially being told I wouldn't survive.