I have had several bouts of aspiration. One exactly a year ago that required 3 weeks in the ICU with atrib fibulation and kidney failure,They had to put me on a ventilator, collapse my lungs and scrap the accumulation off my lungs.
It made it keenly aware to my wife that this whole journey was critical. My three grown kids found it too scary to acknowledge. I am making a great recovery,, Went on a cruise two months later to bring a sense of normalcy.
Unfortunately nothing is normal and rapidly degenerating. I live it each but it is easier for others to overlook.
The problem is I have repeat aspiration pneumonia and pull out of it. But I also have restrictive disease which they contribute to PSP although uts not common. My nerves are telling my lung muscles to work properly. A year ago my lung function was 68% and now 42% and declining 2% a month a month.
I have to cough to catch my breath not only to being oxygen in but to push CO2 out
The excess CO2 pains my muscles. I am expected to be on a home mask ventilator within the next few months. I have booked a trip to Paris since my wife loves Paris and again I want everything to be as normal as possible. If you stood next to me you'd know my breathing was labored but probably see me as normal
I am doing everything to live life. The problem is, except for the doctors I am walking alone. Everything isn't fine. I struggle just to breath. I want to be strong for others, but there is a part of me that wants to cry out.
I've gone on too long. I wont go on a fixed breathing tube where I cant talk or eat as I don't think that is living. But the route to dying by suffocation is real (don't want to get into death with dignity since that is all worked out and dying is nit an end for me.)
But it is a lonely place.
Written by
btuma6
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Bart it seems to me you need to be honest with people. You say you want to be strong for people but you have got this wrong. People should be strong for you. If your family can't be then ask people who can help you.
It is a very kind thought to book a holiday in Paris as your wife likes it there. However you are a very ill man. I have managed to look at your You Tube Video and you have been an amazing fighter throughout your life. So I understand you want to fight now too. However PSP is totally evil. It isn't a level playing field.
My husband died because the hospital gave up on him, and I guess I did too as I knew he didn't want to suffer anymore. He had been admitted with aspiration pneumonia but they told me they wouldn't admit him to Critical Care and they expected him to die. He was unconscious. However he was also a fighter and regained consciousness. We had 3 weeks from the time he went into hospital to the day he died.
Your lungs are in a very bad way. You need to talk to your wife about the way you feel. My adult children were supportive when my husband died but they never helped take care of him and really didn't want to know the details of what would happen. So it is a very lonely place as you say. I would never have survived without the kindness of people on this site.
I don't know if your wife understands the details but if not you should explain them to her. You sound so very alone that I shed to a tear or two reading your email and looking at your video. It is made all the more sad given what you have already been through.
Bart I am not saying give up. Only you will know when you have had enough but please keep in contact? People here are very friendly and supportive. We have had some information from you but couldn't access your video. Tonight I googled it and found you by just using your name! It suddenly made you a real person. The irony is you look so well.
Please be honest with your wife though. As you know you could have an episode where your lungs close down. How would your wife feel were she in Paris? Please tell me you are not going to fly across the Atlantic with her? That would be madness at this stage.
We are always here for you but you shouldn't be alone during the day. Please pay for carers to come to your house to be with you during the day. You shouldn't be sitting there during the day alone that is beyond sad.
Hugs to you and you can have a chat with us on this site anytime.
I can't add to what Marie has said so eloquently. You should not be alone, and you should share with your wife, and if you have a best friend or a best sibling, share with them the truth, the fears and what you need for support. I understand totally what you mean about people not able to grasp what you're going through: When some of our relatives visit they are falsely cheery and talk about G doing things it would be impossible for him to do. I don't blame them - I think it's human to reject realities that are awful that you can't do anything about, so they minimize it in their minds. I don't give them all the details either - I've chosen the few in my life I share the "real" story with, and they know they have my undying gratitude...
....which is how I feel exactly about this site, because this is what we do with/for each other!
You’re post sounds quite desperate. I feel. for you as I feel death will come in the not too distant future. I also feel you need to share your feelings with your family. You have the right to make such serious decisions. If you need to, you could write each family member a letter. Please keep us informed as to how you are doing. Love, Mary B.
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