Paralyzed Diaphragm

@cazzy1958 - Wow, you must have been scared to death! What kind of doctor do you go to for this?

I am a U.S. Marine amputee with left lower lobe loss. I was able to exercise, walk with a prosthesis, drive a car and could breathe without any assistance other than inhalers and a nebulizer for bronchiectasis. However, in 2014, I was diagnosed with lung cancer and underwent surgical removal of the tumor in the right upper lobe. Since surgery, I have not recovered at all. I am on 6 LPM of oxygen, cannot walk, cannot lay flat or bend over, cannot take any deep or full breaths at all. I walk 2-3 steps and I have no air and cannot breathe at all. Feels like someone is sitting on my chest and I have to sit down and let my pulse come down. I was told by another Veteran that I have diaphragm paralysis. Can anyone shed some light on this, please? I am desperate and totally disgusted not being able to have any sort of normal life, let alone being able to simply BREATHE! Thank you, in advance, for any help in this matter.

Hello @usmccam
I can certainly understand your frustration at having to deal with another physical problem. You certainly have dealt with a number of problems already.

What has your doctor said about diaphragm paralysis?

Hi @teresa My NP suggested this might be the issue and wants to do a pulmonary test to rule out on the 23rd. Meantime, breathing has become very difficult now regardless of the position I am sitting. They did start me on BiPap but I have stopped it as it made me suffocate and start to choke. All of my research into this possible dx points to it exactly as my symptoms are identical and I feel it was surgically caused. Thank you for your reply.

I am glad to hear that you will have a follow up on the 23rd so that you can know for sure about this possible diagnosis, @usmccam. I pray that you will get some answers.

I see that you were started on a BiPap but had problems with it. In case you would be interested in looking into this now (or after your appointment on the 23rd), I would like to invite @johnbishop, into this conversation. John is a Connect mentor who facilitates discussion groups on C-Pap and he may be able to direct you to discussions on use of the BiPap. Often there are adjustments you can make with these machines so that they can be used more comfortably.

I hope your appointment on the 23rd gives you some answers. Will you post again with an update after the 23rd?

Hello @usmccam, I have been using a CPAP machine since last summer and have went through quite a few different masks trying to find something that works for me. I'm wondering if that might be part of your problem of the suffocating feeling with the BiPAP nasal mask.

There is an active discussion here you might want to read where you will meet other members using a CPAP/BiPAP machine and learn tips that they have shared. @thankful, @cece55, @jjspokane61, @dawn_giacabazi may be able to share some suggestions to help with your BiPAP machine.

Groups > Sleep Health > Cpap and sleep
-- https://connect.mayoclinic.org/discussion/cpap-and-sleep/

Have you discussed with your doctor that the mask causes you to feel suffocated? I would see if there is another alternative for the mask or nasal pillow you currently have. It's the key piece to helping a person use the BiPAP or CPAP machine and get the sleep the body needs.

Hi @usmccam
I have read some of you replies and questions. I first want to say THANK YOU for your service.

I to use BiPap & CPAP. Based on my experience I absolutely hated it when I started using the machines. I would rip that mask off gaging and choking and gasping for air. My doctors changed my settings to a range so the pressure would auto adjust to my needs. As we awake our need for assistive breathtaking is less and s my doctor explained to me that’s when we struggle with the pressure. I have no issues with it now. I have developed some shortness of breath when I lay on my left side so I will often put the machine on while I’m awake reading to help alleviate those symptoms. Has your doctor talked about adjusting the pressure on your machine?

Thanks
Dawn

@usmccam - I would agree with the advise you are getting. If you read any of my previous posts on this subject you will hear over & over that the specific mask that works for you will not only allow you to tolerate Cpap, but will go a long way to bringing back good sleep and eliminate many of the illnesses associated with Sleep Apnea, which are plentiful! The ramp feature on most newer Cpaps is a great way to help especially early on to get used to your mask and the perscribed pressure your sleep Dr. has you at. They may need some tweeking over time, but that can easily be done by you with some help or by your sleep Dr. In some cases these adjustments can be made by your Dr. online. Hope this helps! Happy Zzzz's Jim @thankful

Hi USMCCAM...I am pretty new at this but I can tell you what helped me with the suffocating feeling. While many people like the ramp feature which on my machine starts at 4 (they gave me 45 minutes to fall asleep) and then it progressed to 6, I felt like I wasn't getting enough air. I don't use the ramp and just start at 6 pressure and it is very comfortable. That way I haven't spent 45 minutes struggling to breathe and getting anxious and frustrated. I also went to the medium size pillows for my mask which is one size up from the small that I started with. I loosened my mask and it does not leak. All this made the breathing much more comfortable. I hope this helps in some way.

CeCe55

@cece55 Thank you for the advice but my issue is the bigger problem of a paralyzed diaphragm. Nonetheless, I will keep your info available when I am better able to use the BiPap without so much discomfort.