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Nothing helps me

I have stage four emphysema. I’ve tried all the medications , nebulizer treatments, bronchodilators, pulmonary therapy, steroids but none have helped and have just caused bad side effects. I have also been evaluated for valve implants and lung transplants, but did not qualify for either because my overall health is bad. I have a lot of other health issues that I’m dealing with at the same time. I’ve been hospitalized many times, and just recently got home after being in rehab facilities and in the hospital for four months. My lung capacity is now in the 20-30% range yet my vitals are good and my lung function is good. Yet I can barely breathe. I don’t understand that. I use a wheelchair or a walker all the time and am on oxygen . I am bedridden a lot of the time and can’t drive anymore. I’m in the process of trying to get Home Healthcare but it’s very expensive. The doctors just keep prescribing the same routine things which don’t help me. My son is the only one who helps but he works full-time and has meetings after work so I barely get to see him. I have no support system and I am very frightened . My husband passed away a few years ago and he was my rock. I have a lot of paperwork to take care of and I can’t even think straight or sit up long enough to do it, but it must be done. I dread waking up in the morning . Any suggestions from anyone out there? Thank you in advance.

  1. Hi . My heart goes out to you. That is a lot to handle on your own. Have you contacted your county's Office of the Aging? They might be able to help with the paperwork. If your doctor orders home health care, it should be covered by insurance. Have you asked your doctor for a referral? You should qualify with all your issues. They can provide such things as help with bathing or showering, light housekeeping and weekly health checks (blood pressure, etc.). Do you think you might enjoy assisted living more than living alone at home? At an assisted living residence, you might have more opportunities to socialize and you wouldn't have to worry about meals or cleaning. You could enjoy visits with your son rather than filling each visits with things that need doing. If you do move into assisted living, just be sure to get recommendations and do lots of research first. There are some that are excellent and others that are awful. I am not sure why you are short of breathe. What has your doctor said? Here is an article about triggers for SOB: https://copd.net/living/five-triggers-shortness-of-breath. Here is another that explains the differences between oxygen saturation levels and SOB: https://copd.net/clinical/breathlessness-vs-oxygen-saturation. I hope this helps and that you are help to get the assistance you need and deserve. Gentle hugs. - Lori (Team Member)

    1. Hi Lori,
      Thank you so much for your extensive information and kind concern. I’ve been in rehab facilities hospitals. I recently got help at home which I’m paying for myself a few hours a day. All my vital signs are always good so I feel as if I’m not being taken seriously. I have stage four emphysema and, all I want to do is sleep. I’m Very lightheaded I have a lot of other health issues that I’m dealing with at the same time and assisted-living may not give me the kind of medical help that I need. Plus I would have to sell my home and packing up and all those things is more than I can handle. so I just now stay in bed all day and my anxiety is through the roof. I just got over double
      pneumonia , Covid and the flu all in a month on top of the emphysema. Was in rehab in the hospital for over five months. I am now on the verge of possibly losing the vision in one of my eyes due to an infection I caught in one of the facilities . No medication or treatments help me at all. I’m just on oxygen now. I can Bailey do anything now. I can’t drive, I can’t go out alone, I can’t do anything I used to enjoy anymore. Needless to say, I’m extremely depressed too. Thank you again for your concern and your recommendations. It’s nice to know that someone’s listening. Regards, and good health to you.
      Kitt

      1. Hi . A person with no other health issues can take months to fully recover from pneumonia alone. I can't even imagine having double pneumonia, the flu and COVID all in one month along with COPD. You might improve with time. Stiil, I wonder whether there are other reasons for your fatigue and depression after all those illnesses. Specialists do not always act on information they gather that doesn't involve the specific condition they treat. My husband has an infection at the site of his hip replacement and is on IV antibiotics. He had has blood work weekly to look for liver damage from the treatment for the past month. For quite a while now, he has been extremely exhausted and low on energy. We figured it was due to the infection. However, in looking back on his recent blood test results, I saw that for the past month, he had been incredibly low on iron and told him to talk with the orthopedic about it. They immediately put him on iron supplements and his energy returned within two days. Both the orthopedic and the infectious disease specialist reviewed those test results every week and they never did anything about the low iron. It wasn't within the very narrow focus that concerned them. It might be worthwhile to see your primary care doctor for some basic blood tests. We know our bodies best. If you believe something more is going on, please continue to advocate for yourself and please talk with your doctor about your depression. There might be ways your doctor can help. Know that you are never truly alone. We are always here for you. It's important to keep your mind active while your body heals, especially since you can't get out much. Post here and on our Facebook page. Find other online groups you can join. Listen to audiobooks and podcasts. Read if you are able and sit outside when you can for the fresh air and vitamin D. Warmly, Lori (Team Member)

      2. Hey there, Kitt. I'm glad you're here. We know how frustrating it can be to feel like you are fighting your body, your doctors, finances, and everything else that goes into managing a chronic condition.

        Lori has given you some great thoughts, and I agree that more testing could be helpful, especially if you're feeling so dizzy. When you say you're just on oxygen now, do you mean that you aren't taking any medications for COPD? While you may feel no different, it can be so important to keep using medication to slow down the progression of your symptoms and keep you from feeling even worse.

        We are here to listen and you don't have to go through this alone. Talk to us as much as you want, okay? And keep pushing your doctor for answers. If he doesn't have a plan, you may want to consider seeing someone else, because you deserve to have someone caring for you that isn't going to give up. Hugs. -Melissa, team member

    2. Hey being a member just like you, I am in gold stage 4 COPD. The fun right? This last year has been a whirl wind of problems similar to yours, but I was fortunate enough to have helped with aging in-laws and parents in the past, thus giving my some insight to what has been happening to me now days. My first of 5 chronic condition was diagnosed when I was 33, now 61, COPD was chronic condition #3. Anyway, found depression was something that can be common in people with long term and/or chromic illness, anxiety too!
      Have you spoke to your doctor, usually primary care first about this? Are you being medicated for this? If you are, maybe it might be time to that reevaluated? Same with Anxiety of course, usually there is a medication that can help with both at the same time.

      Support systems are nice, no matter rather or not they are there with you or even here online, it's been a God Send to have these folks here helping me and supporting me in all their own ways and knowledge. At home, yes I have my husband and two adult daughters, that at least call and check in, will drop everything if needed and make their way here if needed. The distance they live from us and challenging to say the least. The most important thing I learned by helping my parents / in-laws was "learn to be independent and continue until you can not".. Well, that is working out quite well, for I still am able to do many things for myself, but I am fighting that everyday.

      As for other types of help. Lori and Melissa has great advise, I would like to add to it.
      The Dept. of Aging and Disabilities= not only maybe having someone to help with paperwork, but they have many other programs that could be useful to you. Not 2 agencies are the exact same even though they are US Govt funded, but they have somethings similar. Its based on income, don't be afraid that at all.... One of the programs they have is the "Meals on Wheels" program, for free or reduced cost meal, (once a day usually). This would be perfect no matter the blain taste of food or not for it's a free meal, saving you time of making or buying and it has someone showing up at your door daily, like having someone checking in to make sure you are ok.. Yip a win win on that one!!!! Plus many more program options. They even have more resources too!

      Local Senior Center or Community Center in your area. Some of these have not only local resource information that they could let you know about, but some have formed volunteer groups. Many people that are healthy, but retired get bored and want something to do or to meet other people. Thus giving help to others are in need / disabled, seen with my father in AZ that it was rides back and forth to the doctor. Some one would come visit, just to have a chat with someone new and revisit if both agreed. There was a couple retired plumbers that would volunteer their time to work on anything in that field needed, same with at least one electrician. Great resource possibly

      Local or near Local Chapter of the American Lung Assoc.. If they don't have programs themselves they would probably know of other organization that could be helpful for you.

      State / Govt agencies - have you possibility applied for Medicaid or/ and Food Share program (food stamps) of course these could be very helpful.

      Religious groups- many churches / religious groups run food and clothing banks and not just for their members. Then they also might set something up to at least come visit and of course chat about religious believes. Someone again to visit, keep you mind occupied on something other then your woes.

      Local Food bank? This one you might need to ask your son to help . Keep in mind, no one knows we need help unless we ask, they can't read our minds. LOL

      Thats it for now, I already took my nightly meds and they are starting to work, YES!

      Kitt I know you can do this, paper pencil and start documenting whom and what you talked about... One thing and one day at time will get you to many new places.

      My thoughts are with you, Doris

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