New here: Hi. I'm Cyndi and I was diagnosed... - COPD Friends

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Cynners
Cynners

Hi. I'm Cyndi and I was diagnosed with copd since my early 30s.I now have stage 4. I was told i can't have a lung transplant due to all my health issues. That was hard to take for sure. I'm going thru this alone. I'm 51and my husband left me because I am disabled. Glad he left tho. Who needs that negativity. 23 years we were married.

26 Replies
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That's funny my wife left for same reason. I am having great results with cannabis oil and tumeric tea. I couldn't walk 10 steps with out having to rest. Now I can climb my steps.

Cynners
Cynners in reply to 6564

I've heard of the cannabis oil..but never the tumeric tea. I'm a bit naive on the tea..do you buy it as a tea or do you make it yourself.

Sorry to hear about your wife. It's sad when they leave for such vein selfish reasons. Ands it hurts!

Hope all us well with you!

valiejean
valiejean in reply to 6564

would like to hear more about the cannibus oil. i know a guy that swears by it. I'm a bit nervous about trying it as I ate a medicianal piece of a muffin w/ some butter..just as big as the end of my finger. I thought I was going to die. MY breathing slowed down so much and I'm a very slow breather to begin w/. I'm also a carbon dixode retainer. stage 4 very severe. oxygen 24/7

Mustangman
Mustangman in reply to valiejean

Be very careful with any drugs all drugs will have and effect on your breathing even beer , I grew up in the sixties I know about weed smoked it quite often long ago but even now and then , I have stage four also 24/7 6 liters with the use of a trilogy vent , for co2 retention at night it seems to be working bad thing about the drug effect is u can't just return to normal once u get stoned u have to live it out and that can be bad just go very slow and do alittle at a time ,

valiejean
valiejean in reply to Mustangman

thanks....that's what i was thinking as i tried muffins and did not like it. I have heard from several ppl about oil and supportisies and how it helps their breathing....don't see how it could just puttingit out there.

That sucks, I have two ex-s ,, it's hard living alone.

I've got a couple exs also..my last husband I was married for 23 years. I really didn't think he'd walk out because I was sick...oh well..his loss

I never asked but was told sever so I guess stage 4 all that means now is medical science has nothing more they can do the medical term for serveity and the medication to treat your condition so until they cute this disease we are waiting , doesn't mean that u are die'ing there are people I have spoken with that have had stage four twenty years well I'm 63 so another twenty years 83 if I get there I have other health related issues but u may want to be tested for Alpha one tell your dr, u want this test because it mimics the COPD diease and is treatable , the test will be free and if u go to COPD foundation web site u can get the kit mailed to u free take it to your dr,office it only a blood prick good luck

valiejean
valiejean in reply to Mustangman

i was tested and did not have Aplha1. Have had very severe stage 4 copd for aa decade now. i do pulm rehab as well as multiple meds, oxy. it sucks and i am 65. woke up from a surgery unable to breathe. use a bipap at night as i stop breathing

Cynners
Cynners in reply to Mustangman

I'm an alpha 1 carrier with symptoms. That's the first thing they tested me for since I was diagnosed so young with copd. So I have both

Ldycatcoach
Ldycatcoach in reply to Cynners

I am also an alpha 1 carrier (with symptoms). I am early stage 4 (30%) and was diagnosed with obliterated bronchiolitis (by open lung biopsy). Do they treat you for the alpha 1 or just for the COPD? Just curious, because I am only treated for COPD and awaiting a lung transplant.

Hi Cyndi: You are not alone anymore, we are here to support each other. Don't let the fact that you have stage 4 control your life, you just keep walking and do whatever you can to stay active and keep those lungs working. Make sure you are drinking lots of water. I have been married for almost 41 yrs and there are days when I think I would be better off alone. He refuses to except my problems and thinks I can just keep doing what I used to do. The days when my breathing is really bad and he sees me breathing through my lips, he wakes up and wants to know if I'm ok, otherwise he is in his own world.

Cynners
Cynners in reply to LORBIC

My grown kids were in denial up until this last year. It's hard for others to understand. Thank you for your kind words. The people in this group are all so kind

sorry hun.....my friend had lung transplant and seeing what he goes through i would not want one for the world. just keep on pulmonary rehab and your meds. breathe clean air at lower elevatioin and eat right..it's about the best we can do. good luck

rubyred777
rubyred777 in reply to valiejean

Hi Valliejean, wondering what your friend went through with lung transplant. Someone on other site needs one. Doesn't sound to promising. 😊 Rubyxx

valiejean
valiejean in reply to rubyred777

He lives in idaho and had his done in Phonix, he has to get back every year. Seems to be on a lot of steriods as he's pretty puffy. Glad he did it though or he would be on the other side of the grass. My health would not allow that type of surgery. Have your friend look into it.

Im sorry to hear of your divorce. I just broke up with my boyfriend, right as I got diagnosed w copd stage 2. needed support at the most too. Try to stay positive. I have a feeling we both will be better off without them! Much love!

Wow that's a double hurt I'm sorry for your loss but your probity better off with out him anyone who would do that at a time like this isn't a very nice person , try to keep a stiff upper lip u know better times are coming for all and look how fast life can turn around one minute your broke the next u hit the lottery, it hurts to have diseases COPD can be one of the worst I'm six liters 24/7 and just doing the simple thing wears me out , I was almost dead when I went in the hospital my stay was three months I was in a induced coma for over six weeks three difference hospitals I had to be put on a vent trachea my wife was told it was a crap shoot if the trachea surgery didn't kill me I would die without trying very close , after the six week I woke and told them to take me off the vent and they did after several days slowly it was removed and now I have to work on walking again I was so weak I couldn't even pop a soda can , I will pray for a cure to this and many other diseases now that I'm a where of what it is like from the inside , u will survive your brake up just take care of number one for now , X X OO :-)

valiejean
valiejean in reply to Mustangman

wow.........you sure have been through the mill haven't you. Glad to see you made it back. They told me no more surgeries or i would be on a vent full time. I would rather go out in a humane way if possible. I have had 2 releatives choke to death on this horrible disease. i'm only 2-5 lt depending upon exertion. Some days feel real good but after broncititis last month feel like I've slipped. Good luck and keep on keeping on!

manda006
manda006 in reply to valiejean

Im only 36. 37 next month. I hate when people ask how old i am with so many health problems. How do u respond to these kinda people?

valiejean
valiejean in reply to manda006

just tell them it's not relevant to your health problems. Some people ask because it may give some insight to your illnesses. I almost died at age 6 and it has affected me in my whole life, now 65 but got copd @ 55 never to be the same since. good luck

Cynners
Cynners in reply to manda006

I was diagnosed in my easily 30s and I never knew what to say. So many people thought I made it up because they never knew anyone so young with this illness.

I love valiejeans response. Wish I had thought of that back then

manda006
manda006 in reply to Cynners

My leg get swollen, pretty big at times but other than that and a cough people couldn't tell. The friends that know are always asking if im okay or if i need to sit down. Smh

I survived the tracea and vent also after 3 mos. now its 24/7 oxy, pulmo rehab , taking it real slow !

they keep telling me if I have to have a vent I will never be able to get off of it due to such severe copd. Could you clue me in? thank you

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