Still going but it’s more difficult now

By datch

1 min read

I’ll be 67 in a few months. My COPD has gradually gotten worse.

Shower panic

My biggest panic is taking a shower. I get in the shower and do okay for several minutes then get short of breath and start gasping for breath. This is with my oxygen on. My doctor gave me an anti-panic prescription which has helped a little.

Sometimes I get really down

My pulmonologist retired and I had to find a new one which is 110 miles one way. We were working to get me qualified for the lung valve system. My artery blood has failed me for this. I took it badly for a few days. I use a power chair most of the time when my wife and I go to the store etc. I can walk 30-40 feet then have to stop to catch my breath. I am at stage 4 with seriously bad emphysema along with COPD. Sometimes I really get down on myself but I accept it and know I can do only so much and go on. With less than 20 percent lung function, afib, and migraines I don’t know how much time I have left but I know I have to make the best of it.

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richie Member
This is for "Sometimes I really get down" I am also stage 4 or end stage which ever you want to call it. This past December was the worst flareup I have experienced. Prior to that I was told I had only 27% on my last PFT. I was unable to walk across my living room without gasping for breath. A doctor told me that Hospice was taking patients at my stage and using oral Morphine to help with the breathing. Since I no longer was able to get help from doctors I decided to call them. My appointment went well with them and I was accepted on the spot. They explained everything about the Morphine treatment and possible side effects that was most common with the morphine treatment of which was nausia and constipation that would be treated and eventually go away. I was hesitant to try it and they were not forceful that I do. So after about 3 weeks I finally made up my mine to go ahead with it as I was desperate to be able to breath better. I made sure the hospice nurse was with me when I did. She gave me a .025 mg to start which I took orally under my tongue. Within 20 minutes I was able to breath much better and able to walk across the room without gasping. t is now March and I am still taking the same dose twice a day with no side effects at all. Hospice is not only for terminal patients they are there to help live a better life until the desease takes its turn for the final chapter. I am now able to do some gardening, go shopping and live and breath during my daily routine. I would advise anyone who can relate to my story to give it a try. I'm 78 and first diagnosed 25 years or more ago and have no idea how much longer I have, but at least while I'm here I am comfortable and able to be a lot more active and enjoy my days a lot more. 
1. Mary Ellen Member
 <inline-mention username="richie" user-id="2475910"/> That is interesting. I have panic attacks alot . I am going to ask my doctor about hospice. Thank you for the information. I am on oxygen 24/7 for years.
whirledpeas Member
Hi Datch, I have to respond to you. I'm not sure what the blood gasses issue is, or if it is salvageable, but I would never give up trying to have the endobronchial valves installed. I am 73, had them placed two years ago, and went from almost exactly the same symptoms you have to normally only using oxygen for sleep. I had less than 20% lung capacity. I was winded just walking across the room. A month after the procedure it was 24%, and went up from there. Last summer I was strong enough to build a dollhouse for my granddaughters, with just a little help from my husband on one afternoon. Instead of my thoughts hovering around end of life issues, I am busy with my life. There must have been a reason the doctor thought you would be a good candidate for the valves. I hope there is still a chance for that to happen. I'm praying that you can find a way .
Mary Ellen Member
I wear my oxygen in the shower. I wash my hair in the sink because I can't do both at the same time. I get too tired and short of breath. Putting on my clothing is a job in itself after bathing . I have to prepare everything before showering. I never shower without my husband there if needed .
team1 Member
I'm ALPHA-1 and for the last year I have really been struggling with my breathing. Going to talk my doctor about depression, I'm 80 some days are good, but some are really bad. Upside my wife is very good about helping me get through the bad days, I also have a EXCELLENT V.A. team here in Springfield Illinois. The V A is the ones who found my ALPHA-1 over 6 years ago and set everything up I have to get infusions ever week and have for over 6 years. Today I have to get a chest X RAY and maybe a scan on my lungs. Seems like its one thing after another. Some days I can shop without a rider, and some days I can't. Little hint we now have most of our groceries delivered and put in the kitchen cost a few bucks more, but well worth it. 
1. SamanthaSarube Community Admin
 <inline-mention username="team1" user-id="2427675"/>, our advocate <inline-mention username="Jackie English" user-id="2415342"/> also has Alpha-1 and is a great resource for contending with it! I hope the visit to the doctor goes well today! Living with COPD is hard and the impacts on mental health are real and i'm glad to hear you're going to talk with your doctor about them, I hope they are able to help you find something that will get you feeling a bit better. Please check back in and let us know how you are doing! All the best, Sam S. (<a href='https://copd.net' target='_blank'>COPD.net</a>, team member).
2. Melissa.Arnold Community Admin
 Thank you for your service. I am so relieved to hear your VA in Springfield is giving you great care. If only every VA was like that! You share some wonderful tips here too. It's ok to listen to your body each day and ask for help when needed. No use making life more complicated! Keep taking good care of yourself. -Melissa, <a href='https://copd.net' target='_blank'>copd.net</a> team
patandjohn1997 Member
I too panic in the shower, I had an episode 2 months ago where I had to run out all wet to get to the oxygen and I’ve been bathing in the sink since, I have severe emphysema plus in March they did a heart catherization on me which left me weak, then at the end of March they installed a Link in my chest, all that weakened me badly. For the first time my feet swelled and now they put me on a diuretic. I don’t know sometimes I wonder if all the tests are needed that leave you so weak.
1. Leon Lebowitz, RRT Member
 <inline-mention username="patandjohn1997" user-id="4788338"/> Hi patandjohn, and thanks for joining in the conversation. I hear you! So many in our community have expressed similar sentiments when it comes to managing this disease and taking showers. One of the solutions (for some of our members, who have shared it), is to actually use the oxygen while showering/bathing. I thought any of these articles, which focus on this very topic, might provide you with some additional insight for this particular expressed concern: https://copd.net/search?s=shower%20oxygen. I do hope you find the information is helpful in a practical way. We appreciate your candor with the community by also sharing your other medical conditions with us. You have quite a few on your medical plate. If there is anything we can do to assist you, please let me or any other moderator / team member know. You are always welcome here! Enjoy the holiday! Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)
TjLinn Member
So what makes me keep going? My faith plays a major role in my will to live. Next to that comes the grandchildren I am raising. My youngest is 6 and he was placed with me at 3 months old. My other grand is 10 and she was first placed with me at age 3. I was diagnosed stage 4 emphysema and COPD in 2019. I have 15% lung function. Recently I got my first caregiver and she comes 3 days a week. She is such a blessing. My grands depend upon me, I am mama to them and my will to live is for their emotional health. I was orphaned at 9 years old and losing my mama was the worst pain in my life. I will not see my grands have to suffer that fate. I will keep going so I can teach them the values they will need in this world. And I am so thankful for the ability to still hold and cuddle with them.
1. Tj Linn Member
 <inline-mention username="Melissa.Arnold" user-id="4698523"/> thank you. I got it today and once the smoke clears from the atmosphere I’ll be starting my walks. Can hardly wait! 
2. Leon Lebowitz, RRT Member
 <inline-mention username="Tj Linn" user-id="8516239"/> Hi again Tj, and thanks for your response (to my colleague, <inline-mention username="Melissa.Arnold" user-id="4698523"/>). I can just 'feel' you getting excited to get out there and walk!! Here in the metropolitan New York area, the air has cleared up (following the day or so being affected adversely by the wild fires in Canada). Please do check back and let us know how your walk turns out for you. Good luck! Leon (site moderator <a href='https://copd.net' target='_blank'>COPD.net</a>)