I'm interested in comparing notes with anyone who has bilateral diaphragm paralysis.
It's hard to find the information I need. My health is bad and getting worse.
Doctors seem to be out of ideas.
Basically I'd like to know how long I have left. If there's anything I can do to slow this down.
I have bilateral diaphragmatic weakness, not paralysis, but it has impacted my life greatly. Initially, I was put on O2 because I had pretty bad shortness of breath. As things got worse, I wound up on BiPAP and O2, the BiPAP helped rest my muscles as they were fatiguing and my breathing got worse. Within 2 years of my dx, I was on BiPAP 24/7 and not doing well. The docs and I decided it was time to be trached and vented as I had absolutely no quality of life on the BiPAP. That was over 5 years ago....and it was a lifesaver. I am actually able to come off of the vent for 6 hours of the day, the rest of the time I am on the vent. When I was first vented I was on the machine 24/7 and very, very weak but with aggressive PT, things slowly got better. I pretty much live my life, with some restrictions of course. I live on my own, do all of my own care and even drive. When I am off of the vent, I am on O2 as I still get pretty short of breath if I over extend myself, which isn't hard to do these days.
That's pretty much it with me, except that I also have lung disease that complicates things, but I just take it as it comes.
How about you? What are the doctors doing for you right now? I can honestly tell you BiPAP did help me quite a bit initially, so if you are having trouble with breathing, that may be an issue. I would definitely talk to your doctor about your options. There is also the option of a diaphragmatic pacemaker, but your phrenic nerve (the nerve responsible for the functioning of your diaphragm) needs to be intact I believe....
Ask any questions, I will try to answer the best I can.
I hope this helps..
Thanks for your info. It helps.
I'm just trying to take a look ahead, to see where this is going...
"How about you? What are the doctors doing for you right now?"
I guess they've done just about all they can so far.
I'm on oxygen 24/7. I sleep with the bipap and oxygen, and sometimes during the day I go up there and read with the bipap on.
I try to go to therapy 3 times a week, but frankly, I don't think it's worth it, as I see no results.
I'm on meds for my heart.
Both diaphragms are paralyzed, and I have severe sleep apnea, which causes daily migraine headaches. I'm shor of breath for seeminly no reason, quite often. I also have very low energy. They tell me that I retain carbon dioxide. They've reset my bipapa 3 times. Now the pressure is as high as it goes, in order to blow out the carbon dioxide.
My stats are slowly getting worse, not better. I'm fighting depression, and winning. (so far) I'm not giving in.
I have begun to lose faith in doctors. I realize that there's only so much they can do.
That's why it's so important to know if there are other people with the same issues.
I can't seem to find anyone with this problem.
The phrenic nerve can't be stimulated with a pacemaker (they tell me) because it's dead.
I'm out of ideas.
I've gone from being an active guy and a well known musician to being housebound.
Thank God for my wife and son, who have been so supportive and resilient through this.
Thanks for your info too.
I totally understand what you are going through...many issues that you describe, I went through them or are still experiencing them, such as the headaches, needing the BiPAP more and more, as well as the frustration of not being able to do the things that you used to do. I was a very active, ICU RN who use to run 3 miles without even thinking about it. These days, I have to pace myself from the time I get up, until the time I go to bed....I am exhausted by early evening, no late night stuff for me. I have gotten used to the changes to some extent, but I still think about my life before all of this began 7 years ago. I am also disabled, and live day to day. I guess that is all we can do when faced with something as life changing as this.
It's good that you still have a fighting spirit, it is easy to lose faith when all it seems to be doing is sliding backwards. I can honestly tell you that I celebrate any achievements that I accomplish, no matter how small it may seem to others. People do not appreciate the littlest things, I was one of them until this happened to me...to this day the docs do not understand why my diaphragm did this. But it did and now I have to live with the changes, I too refuse to give up. I have had so many opportunities to do so, but I moved on an am still here despite the odds.
I also remember being on the highest settings prior to being vented, the thing that was most bothersome with that was gastric distention. My belly hurt so badly, I slept half on my side and half on my belly (Sim's) to help alleviate the discomfort....it only helped a little, I seriously considered a G-tube so that I could vent my stomach while I was on BiPAP. I also rotated between the mask and nasal pillows to give either my face or nose a break as I was wearing it so much by then. I took my BiPAP everywhere, had a converter for my car so that I could run it off of my car battery if needed. I did not drive at that time as I was so weak. Any exertion was difficult and my O2 levels reflected that.
As I said before, I am now vented, a very scary move but necessary in my case....but ironically, I am able to do more now than when I was on BiPAP. I am now on my own with my kids, whereas before I had to live with my mom because I needed so much help. Don't get me wrong, it is still very hard, but the vent allows me to rest my muscles more efficiently and take alot of work off of them when needed. When I was first vented, I had to relearn everything from speaking, eating to showering and dressing. I was very fragile medically then though and very weak from being nearly bedbound for months prior to the procedure. I was very dependent on the vent and it was very frustrating....slowly things got better. I think that lung disease has made it tougher though...the docs diagnosed me with CF of all things because my lungs were constantly infected and with bacteria that aren't normal for even a vented person...of course there were other symptoms that pointed to CF, but that was a biggy.
I have rambled enough, but like you, I don't know of many people who have experienced this. I pray that there is something out there in the pipeline that could possibly help you. It sounds like you are coping with this as well as you can....try to keep busy in other ways such as reading, painting etc...I have found that I have had to shift my hobbies to tailor my energy levels and what was realistic. Instead of running, I now walk in short bursts with my dog. I do alot of things in sitting position...I have taken up painting, it is very relaxing and rewarding. I have also found that my computer has become a vital companion. Try to keep your mind as busy as possible...I have always said that an idle mind is a dangerous weapon...when there is too much time to think about your situation, it can become depressing.
Hang in there..tough I know, but it is all we can do.
I'm glad you're keeping your spirits up. I think that's very important.
As you said, keeping your mind busy and having hobbies helps a lot.
I never thought I'd say this but I miss working. Ha!
I've decided to look into alternative methods of healing. One of them is called Tong Ren Healing.
I know, it sounds kooky. I've always made fun of this kind of thing in the past...but, what the hell...I might as well try it. What do I have to lose? It can't hurt. I'm not giving up on doing what the doctors tell me to do, I'm just adding this on.
So we'll see if it works.
Just wanted to let you know that my 65 yr. old husband has a paralyzed diaphragm. It started out with shortness of breath, he was then misdiagosed with asthma, but he knew it wasn't on the inside of the lung, he could not lay down at all, finally was diagnosed with als on Oct. of 2010, BUT a friend told us to watch the documentary Under Our Skin.
Lyme disease presents as als, ms, parkinson's disease, chronic fatigue, fribromyalgia, etc. so we did an Elisa test with our local doctor, it came back negative, but we found out they are very inaccurate, so we sent a blood sample into a lyme specialty lab in CA call IgeneX, it came back positive. He is now being treated for Lyme disease and the co infection Bartonella. He had a sleep study done and is now on a BiPap, he has great oxygen but can't get rid of carbon dioxide, but the BiPap helps so much. He sleeps with it each night and uses it during the day when needed. He was an extemely active person and a workaholic having his own business for 42 yrs and now can't work. He gets out of breath and struggles. He has had some better breathing days and we are hopeful that the long term IV antibiotics he is on will help him. We are looking into Phrenic Nerve Grafting or Plication, maybe even the Diaphragm Pacer.
He had an MRI ( we had to find a Stand Up MRI) as he couldn't lay down, and the radiologist said, it wasn't consistent with als, he said, it looked more like ms. The doctors around here will not discuss Chronic Lyme, you have to find a lyme literate doctor, but since there is no treatment for als or ms, there is for lyme and we will fight this thing, til we can't fight any longer. I would strongly suggest you get lyme tested. If you need help finding a lyme doc, email me back and let me know where you live and I will try and help you. Good Luck to you and hang in there. Please update me from your last post. Dixie
Hi My Name is Clayton Taft I live in Nunda, NY and have been dianosed with Bilateral Diaphragm Paralysis which is when Both sides of your Diaphram are Paralysis. I have had many many test done. Like a SNIFF Test and and Pheranic Nurve test. They have proved that My Right side Pheranic Nerve is Dead and my Left Side is Severally compermissed. I have been sent in Septemember to the Cleveland Clinc see Doctors out there and they feel that the Doctors here in New York are doing exactly what they should be doing. Now I have another Nurve Doctor in Hornell, NY and he thinks that there might be something more going on besides the Diaphram issues. I have a lot of shaking going on in my arms and legs. My Left arm jerks and I cant help it. I am between a rock and a hard place. This has been a rough 6 Months let me tell you. They think that I might have ALS but not sure for ALS ussaully starts up high on you and works down your Nurves they have never seen it start in your Diaphram area. So they are not sure but they cant say I dont have it for a 100%. I don't know what next to say only this week has been hell. I have had a real hard time Breathing and my Chest is much more tighter and hurts a lot more then it ever did. I don't know if it is a cold which my Family Doctor put me on some Medicine for that just to make sure. I called my Lung Doctor he wants to see me Tomorrow Morning at 10am. Dont know what or if he can tell me anything but I am very close to going to the Hospital... If there is anyone out there that has Bilateral Diaphramatic Paralization please respond to this or you can e-mail me at ****@ g m a i l. you know the rest. Thanks for reading I will try to keep checking this out... MAybe a Doctor that has delt with this more and would like to respond I would love it very much! I just found out today that I am getting worse and have to have a Trach put in and be put on a resp. sytem. This is deff. not what we wanted to hear and are very shocked with this.
Sorry, I haven't been on this forum for a while, but I just sort of gave up... but my new resolution is to find out as much as I can about this affliction. So I'd like to share info with any of you who wish to discuss it. My situation seems to be going downhill, and I'm not getting much from these doctors I have. Very frustrated! Not giving in though.
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