Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 Hi Guys, I was wondering if anyone else has had trouble with bacteria infections in the lungs and throat also allergic reactions to unknown reasons. Dave woke up his eyes were swollen shut and we have no idea what caused it. Dave has been on the foley catheter and just started on the feeding tube, he's been using the bipap for a couple of years now. he is high risk aspiration pneumonia and cannot have anything by mouth. This might sound terrible but I don't mean it that way, but how much longer can he possibly live like this? or what's going to happen next? When someone has all this going on what is the typical length of life? It makes me mad and deeply sad to see my dear loved one suffer so much and on top of it all have a diagnosis of non specific disease. WHAT are the doctors talking about? talk about shooting down hope of getting better. side point Has anyone thought of writing a book on this terrible disease and how we all struggle to keep alive and go undiagnosed. I keep telling Dave to write his story so others can learn and possibly cope with their disease. I'm interested in writing one and get many others to donate their stories and possibly get it published. does anyone have any comments or ideas. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 Kim, I'm so sorry Dave is having such a difficult time and wish I could offer some consolation or hope. Sometimes I think the caregiving spouse has the greater load. It must be so painful to watch him decline inch by inch. As for publishing some stories, I can offer a little advice from my years of contacts with the publishing world. Your idea is great and is something that needs to be done. Unfortunately, illness stories are a dime a dozen on editor's desks these days and in general must be different or stand out from the stack to get any attention, even if written by a professional writer. I'm afraid a collection of patient written stories will have a hard time finding a publisher. If I were still able to write, I would make it a priority to interview and write up mito patient stories for mainstream magazines markets, but that is not an option for me now. Some alternatives: 1. Post a notice on writer's sites soliciting a medical journalist who is looking for a book project and would be willing to interview mito patients and write their stories. 2. Consider self-publishing a book of stories written by patients. This can be done fairly cheaply these days. 3. Contact UMDF and find out if they would be interested in sponsoring a book of stories written by patients. Hope this helps Barbara _____ From: Doyoucook@... Sent: Monday, December 20, 2004 5:32 PM To: ; adultmito Subject: changes in disease Hi Guys, I was wondering if anyone else has had trouble with bacteria infections in the lungs and throat also allergic reactions to unknown reasons. Dave woke up his eyes were swollen shut and we have no idea what caused it. Dave has been on the foley catheter and just started on the feeding tube, he's been using the bipap for a couple of years now. he is high risk aspiration pneumonia and cannot have anything by mouth. This might sound terrible but I don't mean it that way, but how much longer can he possibly live like this? or what's going to happen next? When someone has all this going on what is the typical length of life? It makes me mad and deeply sad to see my dear loved one suffer so much and on top of it all have a diagnosis of non specific disease. WHAT are the doctors talking about? talk about shooting down hope of getting better. side point Has anyone thought of writing a book on this terrible disease and how we all struggle to keep alive and go undiagnosed. I keep telling Dave to write his story so others can learn and possibly cope with their disease. I'm interested in writing one and get many others to donate their stories and possibly get it published. does anyone have any comments or ideas. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 Kim I am sorry that Dave is having such a difficult time. You are both in my thoughts. Hugs, laurie > From: Doyoucook@... > Reply-To: > Date: Mon, 20 Dec 2004 18:31:57 EST > To: , adultmito > Subject: changes in disease > > Hi Guys, > > I was wondering if anyone else has had trouble with bacteria infections in > the lungs and throat also allergic reactions to unknown reasons. Dave woke up > his eyes were swollen shut and we have no idea what caused it. Dave has been > on > the foley catheter and just started on the feeding tube, he's been using the > bipap for a couple of years now. he is high risk aspiration pneumonia and > cannot have anything by mouth. This might sound terrible but I don't mean it > that > way, but how much longer can he possibly live like this? or what's going to > happen next? When someone has all this going on what is the typical length of > life? It makes me mad and deeply sad to see my dear loved one suffer so much > and > on top of it all have a diagnosis of non specific disease. WHAT are the > doctors talking about? talk about shooting down hope of getting better. > > side point > Has anyone thought of writing a book on this terrible disease and how we all > struggle to keep alive and go undiagnosed. I keep telling Dave to write his > story so others can learn and possibly cope with their disease. I'm interested > in writing one and get many others to donate their stories and possibly get it > published. does anyone have any comments or ideas. > Kim > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 I'm sorry you guys are having a rough time of it, from a personal standpoint, both my father-in-law and uncle had severe episodes where they were given " not long " (days at most) to live, and they are both five years past that now. My FIL is okay now, and is just limited by post-polio syndrome, but gets around not too bad on his scooter. My uncle was about to play golf a few months ago, but had a fall, so is just now out of rehab and improving. My uncle almost definitely has a mitochondrial disease, with stroke-like episodes and episodic memory problems, but fine at other times (that's how mine is). Has anyone thought of trying some acidophilus supplementation to cut down on bacterial infections? Your family is in my thoughts, I hope things will improve... Regarding the illness stories, I think a prior group member wrote a book about her daughter and her experience with mito (Sunny?). Take care, RH > Hi Guys, > > I was wondering if anyone else has had trouble with bacteria infections in > the lungs and throat also allergic reactions to unknown reasons. Dave woke up > his eyes were swollen shut and we have no idea what caused it. Dave has been on > the foley catheter and just started on the feeding tube, he's been using the > bipap for a couple of years now. he is high risk aspiration pneumonia and > cannot have anything by mouth. This might sound terrible but I don't mean it that > way, but how much longer can he possibly live like this? or what's going to > happen next? When someone has all this going on what is the typical length of > life? It makes me mad and deeply sad to see my dear loved one suffer so much and > on top of it all have a diagnosis of non specific disease. WHAT are the > doctors talking about? talk about shooting down hope of getting better. > > side point > Has anyone thought of writing a book on this terrible disease and how we all > struggle to keep alive and go undiagnosed. I keep telling Dave to write his > story so others can learn and possibly cope with their disease. I'm interested > in writing one and get many others to donate their stories and possibly get it > published. does anyone have any comments or ideas. > Kim > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 Kim, I am sorry that you and Dave are having such a hard time right now. I can't begin to imagine what either one of you is going through. I don't have any suggestions but wanted to let you know that you both are in my thoughts. Hugs, a On Mon, 20 Dec 2004 18:31:57 EST Doyoucook@... writes: Hi Guys, I was wondering if anyone else has had trouble with bacteria infections in the lungs and throat also allergic reactions to unknown reasons. Dave woke up his eyes were swollen shut and we have no idea what caused it. Dave has been on the foley catheter and just started on the feeding tube, he's been using the bipap for a couple of years now. he is high risk aspiration pneumonia and cannot have anything by mouth. This might sound terrible but I don't mean it that way, but how much longer can he possibly live like this? or what's going to happen next? When someone has all this going on what is the typical length of life? It makes me mad and deeply sad to see my dear loved one suffer so much and on top of it all have a diagnosis of non specific disease. WHAT are the doctors talking about? talk about shooting down hope of getting better. side point Has anyone thought of writing a book on this terrible disease and how we all struggle to keep alive and go undiagnosed. I keep telling Dave to write his story so others can learn and possibly cope with their disease. I'm interested in writing one and get many others to donate their stories and possibly get it published. does anyone have any comments or ideas. Kim Quote Link to comment Share on other sites More sharing options...
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