Scary Parts of COPD
What are the scariest parts of living with COPD for you? How do you cope with the things that scare you?
The scariest part of coping with COPD was the inhalers. I was allergic to all of them. I had horrific side effects from the steroids with every one, so after 5 of them and a weight gain of 15 kilo , being unable to wear my clothes, having my neck swell up like the deceased Pope , and bloating that demolished my gastrointestinal tract...I quit all of them. I went on a complete detox with the help of my TCM Dr. .
using herbs and anti inflammatory diet it took 7 mo of no progress to finally be clean from the steroids. I began the Fast Metabolism Diet strictly and with committed discipline last Aug. and as of today i have lost 10 kilo and could wear my favorite skirt for the 1st time in 2 years. The most frightening thing was losing my body to the meds...being unrecognizable in the mirror... pissed me off. lol
finding a Doctor that will LISTEN to you. All of the pulmonary guys I've found are arrogant as hell and don't seem to care that an inhaler darned near choked you to death. Guy says "oh, that can't happen" Tell me about it while you are trying to breathe.
I'm finding that my D.O. got me something that works most of the time so I am STAYING away from Pulmonary "know it all" doctors!
Besides, it takes a YEAR to get an appointment because "this guy is SO GOOD".
I hear how frustrated you are and it's totally warranted. All the education in the world is meaningless if a doctor isn't willing to really listen to their patient and come up with a plan as a team. I'm really glad you have a good DO in your corner, especially when they are the first doctors we often see for an issue. And sometimes they save you the hassle and expense of needing to see a specialist. I'm sorry you've had crappy pulmonologists around you. Hopefully there will be someone new who's wonderful if you ever need one again. We can hope, right? Keep advocating for yourself! -Melissa, team member
For me, the scariest part of COPD is the thought of catching pneumonia again. After initially being in ICU for a week with mycobacterial pneumonia, and a year of antibiotics, I caught pneumonia again two years later. It wasn't mycobacterial this time, thank heavens. Another 3 days in the hospital. Every time I cough out mucus from my lungs, I have anxiety that it will contain blood and I will end up back in the hospital yet again. I just had CT Scan, PFT test, Bloodwork, EKG, and urine analysis done. The CT Scan showed areas of inflammation and possible infection. Yech! I gave a sputum sample to my doctor this past Monday and so far tests are negative. It will be a little while longer for petri dish growth to show up or not. It gets real old getting sick with COPD. If not caught right away and treated, it could end your life, and I am not ready to go yet! That is my biggest fear. Take care all and God Bless!
hi Lori , thanks 4 your reply I am still battling cigarette smoking I was going ok ,I was admitted to hosp with low ox2 asthma copd complications told by my Dr that I probley have a year to live so do what I have to do I'm 72 yr old male I have 4 grandkids my children aren't kids anymore because, I don't want to catch covid again Imy wife and don't travel to see family very often I spent time in hospital with covid 2 yrs ago .I am so sick of not sleeping properly , it really seems to me that my problems escalated after doing hep c treatment eplusa 5 yrs ago treatment got rid of virus but I have had so many infections covid asthma emphasemia now I'm told lastmonth that I have osteoarthritis just to name a few problems think I was healthier before I did hvc treatment .now I have edama feet legs my Dr put me on a fluid tablet furosimide that made me urinate every half hr it seemed without helping my puffy feet so I stopped taking them my Dr thinks stopping cigarettes should be easy .not for me after putting up with this horrible disease plus now my wife is losing memory rapidly doesn't hear me chocking at night also when I was released from hospital last time she has taken up cigarettes omg it is so hard just makes me feel like forgetting quitting and enjoy time I have left. When I did eplusa treatment I thought I was doing the right thing oh big mistake I think anyway sorry about the rave everything seems pointless can't even relax watching TV without hearing about wars an silly so called world leaders just makes me wanna have a cigarette .I
Thanks
Hi
. You sure have a lot to contend with. My heart goes out to you. Unfortunately, had you not done the hep C treatment, you might also be dealing with liver failure right now. All our advances in medicine are fantastic in so many ways, but they do sometimes leave us confused as to whether what seems like the right choice really is the right choice. So often, a treatment that relieves one symptom brings on another.
I hope you don't beat yourselfup too much about the fact that you are still smoking. It's a powerful addiction and it can be really tough to quit, no matter what your doctor says. I'm suprised your wife would suddenly take up smoking after seeing what you are going through. Do you think that might be an effect of the memory loss? Do you have anyone who can help you care for her as her memory declines? Her smoking must make it so much more challenging for you to quit. Have you at least been able to cut back?
Please know that doctors are very often wrong when they predict life expectancy for COPD. We have members in this community who were diagnosed with stage 4 20 years ago and are still with us, living as fully as they are able. This is a strange and unpredictable disease.
The stress of the news can be overwhelming, especially since we now have access to the news 24/7. I stopped watching television news a long time ago. Now, I read an online newspaper or two in the morning, and then I am done for the day. Are there other programs you can watch instead?
No need to ever apologize for ranting or for long posts. That's what we are here for - to offer support and a safe place to vent. Thinking of you. - Lori (Team Member)
Trying to have a positive outlook. Have too much going on with the ole body. Heart attack last year. 4 stents along with stage 3. 8 Meds a day plus all the Nebs and O2..
Got the results back last week on the CT scan.Significant coronary artery disease. No Mass. Thank God staying active as possible. I miss working. Was self employeed for 35 years in the truck and automotive repair business.. Constantly looking online for any form of employment. Talked to several people and agree, Companies just don't want to take the risk hiring people like me. We shall see what happens. Just miss working.Hi Epsom I can relate to what you are saying .I told my wife that I think if I was a car best place for would be at motor wreckers for maybe spare parts lol seriously it is really frustrating not being able to do the things we once enjoyed ,?I find not being able to sleep properly a big problem I elevate my feet but I still have to get an cough or try to cough every nite it's near summer over hear that means fires floods pollens in the air can't say I'm looking forward to it ,recently as I have edema in my feet I seem to knock my feet about I find the smallest scratch can turn into infection so easily so because of feet swelling I can't fit into shoes for protection,
I also really miss having a shower without having to worry about falling over (osteoarthritis) please take care your not alone from AustraliaDo you still stand up in the shower? You might want to look into a shower seat. They are affordable and you don't have to work as hard or worry as much about falling. -Melissa, team member
I was diagnosed 4 years ago and at first was petrified. I started reading up because I believe it's the unknown that we fear. I tried to get as much information as possible about COPD. Reading sometimes caught me of guard. I just kept going. I hate the fact that COPD is so sneaky, if I may call it that. One minute you are all fine minding your own business and the next moment you wake up in hospital 🙁 THAT is very scary for me. My poor husband and daughters though that's it I'm gone. Apparently I'm a CO2 retainer. So as the Dr explained it, I can go unconscious at anytime. I do not want my family to always worry about me. My daughters are my rocks and my poor hubby falls to pieces evertime. How do you cope with that of the unknown?
