Hi. I would like to know if a person starts coughing and choking on their mucus, because it's thick and they are not that good at bringing it up....mean's this is "starting of the "real" end of life." Let me explain: My child has PH. She is in end stages. Her heart is still beating as it is so enlarged and the doctor's tell me, last time....they can't believe she is still alive. Her lungs are very damaged. PH started at age 3yrs. went on Flolan, then at age 16, changed to REMODULIN which is a long story, but it happened and I did not want this. She had to change because I her caregiver gave out of energy, nothing left, my battery so to say was gone. She has been on REMODULIN for 2 yrs. and getting much worse so fast. She was doing stable on FLOLAN. but because a hospital facility would not care for her and use our Respite time ( 4 me to rest) they demanded she change med's because they didn't want to DEAL w/FLOLAN, so they did. I had no say, I was so ill. It is a nightmare. But my question Really is for this moment: Is something really changing due to her coughing more and more each day with more congestion? I do not think this is any cold/flu it is off and on. I've NEVER noticed in her 18yrs. this just coming on without other symptoms, like a cold/flu. Is this possibly how the "end" begin's? Why is she doing this now and so suddenly starting it? Could you just tell me if anyone has heard of this being how the heart start's to fail, please. I want to know as much as I can, and there is no one better than people that have exp. and their caregivers and these doctor's. Please help me understand if this is the start of something bad? I haven't talked to the hospice nurse because it has been 3 days, and it is coming and going, but today was a really bad coughing spell w/much mucus. I will talk to her,but I still need/want advice/information here. thank you very much for helping me understand.
First, please allow me to apologize for not responding to your post MUCH sooner. For unclear reasons, I did not see your post in my inbox until now (as I was going back and reviewing some of the previous posts).
Second, I am terribly sorry to hear about what your daughter (and you as a consequence) are going through. You are a saint for providing her the care that you have over the years and she is alive today, undoubtedly, in large part because of the unbelievable care you have given her. I hope to one day meet you in heaven (because I am certain that you will be there one day, I just hope I will too).
Third, and more to the point of your post: the mucus you describes sounds much more like an infection (may be serious may be not serious at all). If does NOT sounds like "the end" as you allude to. It should of course be checked out if it hasnt been already and still is occurring.
Fourth, has your daughter been evaluated for lung transplantation? I trust and hope you are receiving your care at a top PH center (I imagine that for her to be getting prostacyclins all these years she must be but you never know). Please let me know if I can be of further help.
Hi, and I'm sorry I'm late gettin back, its that way with all.
NO, I do not have a PH specialist for my child "now." We've moved to mid-area SouthEast on coast! I had someone who didn't have the amount of exp. w/PH, but had no other option as to where to take her close. I would say, DUKE, or ALANTA? I'm in SC. I NEED the best. My child is end-stage. We were told many, many yrs. ago due to g-tube (no longer needed) although NOT secured, open due to NO way to close site. Surgury no option, and she can't "burp" so we allow air to vent through stoma, but we also loose food/med's/water. we must bound her like in the old day's, corset's...hard 4 her, but NO other way to do it. There should be, but NO need for it, so no one makes anything. Stoma bag, no help, looing fluids needed.
I hope U will adivce me where to take her for one more elavuation. I Want to make sure she is on whatever she should be and review w/me her symptoms,and just help her be comforable.
She was just released from Hospice ( a day's notice!) that't it, call SC backward's, YES. I do not know what to do. Her cardio. doc say's he is amazed she is still alive, This child has seen the best of the best. Dr. Barst/Feldman/J.Berger/ and forget the name of doctor in SD, CA, who's moved North. They all said NO to lung, one reason being g-tube, it's gone, but has small VSD,Velo-cardio-facial-syndrome, and CVS=common demonator which =PH. I would't allow transplant now anyway, 18 yrs. sick, she deserves better...meaning no more invasion to her body..she's endured enough.
By any chance R U related to Dr. Stuart Rich? wondering.
I failed at question, without first closely proof reading better.
She does always' "CLEAR HER THROAT" for as long as I remember. So-when I heard her having more congestion/but not enough to take to doctor I thought/mom's 18 yrs "guess"....it worried me just a bit.
I thought at some point PH's would start having these secretions and they wuld get worse and worse. It could be the weather change. I don't know, but keeping an eye out, none since last post.
I just feel no one has been honest/straight-foward enough to sit down and explain the many ways dying can/will occur, this is imp. to "ME" not all, but me...I want to know ahead. it help's me.
thank you for your endearing word's of my "service" to my chld. I have devoted my entire adulthood to her. Noting but the best in care from me, meaning happiness/sterility/protection from germs...etc. I think I overdid it and NOW she is so aware of what she is "missing" out there in this not so great world. I would go back if able and do things much different. I wish I could help other's struggling w/PH diagnosis right now...I wnt to write a book on our life...it has destroyed our famlly, now it is working on my "whole" family as I live w/sister since dad left and the privacy they once had is no longer there...we need help to sort all of this out, but like the millions of people on TV...we would welcome a REALITY show that deals w/ "sickness" more than "swamps"...sorry, venting again. I permit you to submit on my behalf as a doctor...to enter us in the 'who's the next reality show" list. I am dead serious, people NEED to see this. IT will be a part of their lives on day unless they are very lucky.
all the best....thank you....;-)
PS: Busy, typo's sorry, running around like mad! All the best to you.
If you want/need to stay relatively local, you should consider going to Duke. I would recommend Dr. Vic Tapson there.
If you and your daugther, however, are able/prefer to make the trek, we would be happy to see you here at the University of Chicago.
Also, regarding the "constant clearing of the throat", this is also very classic for gastric reflux and can cause mucus and a lot of coughing. If she isnt already, I would strongly consider a trial of anti reflux medications (over the counter at CVS/walgreens---prevacid, nexium, etc all the same, equally effective). She should take it for one month to see if it helps (but as I mentioned before, having it evaluated by her internist would also be wise).
For the record, I am now reading your post. I lost my PW and I feel you need to know since you mentioned I posted under another name that we an use "nicknames" here.and that was what you saw later on...Brookit...so I don't repost. I NEVER post the same question in the SAME forum, that would be very stupid of me.
I do however find it unsetting that you accuse me of repetitive questions and mulitple questions, I didn't know there was a certain number of them we could ask. I'm very stressed/tired/angry/sad/mis-lead/guilt-ridden/ because a child is sick and is terminal and close to death. I feel when repsonding to other's and myself, U may think of what you say to them...even if they do REPEAT something...it is not the end of the world, and I never have...I like to spread out my questions to different forums to get the most response as possible...so, I hope you can see how your note under CHF forum upset me...MedMd never contacted me...I could go by Brookit, or the Sharo321, do you have a preference since U pointed this out?
I'm dealing with allot of feelings...as the majority of people here I would imagine...please treat them well...we only want honest, humble doctor's help. I can't understand why you wouldn't touch the "hospice" question...is it just U didn't want to be involved w/that type of issues?...don't they all....that's why people suffer out here...and no one cares until it happens to them...and as mad as I am right now...I hope it never will happen to you or your children if any....
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