COPB and Stress - I can't breath!

[Imageimp]

I'm new here, but many of the stories resonate pretty strongly... I was diagnosed with COPD, asthma, emphysema about 15 years ago, and off & on do pretty well usually. I've had a few times that I've had to take prednisone, but until recently I only used a steroid inhaler, Q-Var 2x/day and a rescue inhaler occasionally. I'm almost 67, smoked for about 37 years and quit "cold turkey" when I was 54... (My Dad died at 55 from emphysema, etc.). I'm not doing as well recently - I asked my doctor for a prescription for a nebulizer, and that helps some, but... I'm actually looking for a different doctor (I had Kaiser Permanente insurance when I was diagnosed, but now have insurance with another company and new doctors) I've never seen a pulmonologist, so I have no idea of my "Stage", or of other tests or treatments available. My doctor just doesn't take me or my condition seriously. I bought a pulse oximeter and use it a few times a day - my O2 ranges from (occasionally) 80 to about 92, usually in mid to high 80's. Of course, when they check it at the doctor's I've been just sitting waiting for 10 or 15 minutes, so it's as high as it will ever get, 93 or 94! I can really relate to the stress from personal family matters. My Mom is 96, and lived with me for 15 years until a year ago when she fell & broke her rt. hip and rt. wrist. She flew through ortho surgery, and was transferred to a "skilled nursing/rehab" facility, and in less than a week they had literally ruined her feet. (They didn't "float" her heels, aids pulled her across the sheets with heels dragging, and she was totally helpless to move. In less than 5 days both heels were black and "necrotic". She has really bad circulation in her legs/feet, and they dragged pressure stockings ("TEDS") on and off carelessly and severely tore the tops of her feet open. Needless to say, I had her transferred to a good facility, but the damage was done and she had to have wound care/dressing changes every other day for over 6 months. She ended up with a huge ulcer with exposed tendon on top of one foot where the worst damage originally hadn't healed, and had a bypass (successful!) below her knee to establish circulation, followed in 10 days by another surgery to remove 3" of exposed tendon. Then she got MRSA from the hospital, and had to go to another facility for daily infusions of antibiotics for 5 weeks... It's been a year this month, and two weeks ago the wound care clinic finally announced her last wound (left heel) was healed (although always vulnerable). She's now in a nursing home, unable to take care of herself and in a wheel chair, depressed and bored (mentally she's pretty intact, which is almost a deficit with her current situation). I visited her every day for 2-3 hours for almost 10 months, in addition to about 1 1/2 hours RT travel time. I now see her about 4 days/week, because I just have to have some time myself. Her life the past year has literally been Hell, and I have to say mine hasn't been a lot better. Now I'm having serious problems breathing, even crossing the house to let my dog in or out... I'm pretty sure my oxygen levels aren't helping anything, because I'm getting pretty forgetful sometimes (like my best friend's last name?!), but most of all I'm wondering whether this could also be the cause of my recent serious leg stiffness, and bad pain in joints generally, but worst in my legs and knees. (My knees have had several surgeries each, but somehow haven't hurt until now...) I'm sure the extra weight I've gained in this last year doesn't help either! I just feel like crap most of the time, and wish I didn't even have to get out of bed... Anyway, It's just me to handle all this, as well as paying and tracking mountains of Mom's bills from medical and nursing facilities, pharmacies, individual doctors' bills, etc. There isn't anyone else to help with anything, just the two of us, but with as bad as I'm starting to feel I've given up on any hope of every bringing her home... I just couldn't handle it. (I'm sorry this ended up so long - just seemed to pour out!)

[planetjanet]

Awe you and your mum have had a very hard time of it It's no wonder you are feeling so low & exhausted. I wont pretend to know too much about your illnesses but I do know what its like to feel the way you are feeling xxx My father in law had Emphysema amongst other conditions & I saw how hard it was it was for him Myself I have only recently been diagnosed with Copd, its the exhaustion I cannot deal with, I have been treated for Fibromyalgia and have recently been told it may have been Dercum disease or I have both.

I've been having regular blood tests & after reading an article I found myself insisting at my Rheumatologists appointment that my Cortisol levels were checked. This is not done automatically in the full blood count and it showed up I had very low levels they want me to have them again before they can make a decision.

Check out these symptoms .. It might be worth you having some blood investigations.

The symptoms of low cortisol, or hypoadrenalism, include:

Mental and psychological ailments such as depression

Faintness and dizziness

Weakness and fatigue

Heart palpitations

Emotional hypersensitivity

Inability to cope with stress

Social anxiety

Muscle weakness

Headache, scalp ache, or general body ache

Severe or dull lower back pain

Extremely sensitive skin

Nausea, diarrhea, and vomiting

Abdominal pain and hunger pain despite an empty stomach

Extreme craving for salty foods

Anxiety and jitters

Clumsiness and confusion

Motion sickness

Insomnia and dark circles under the eyes

Low bladder capacity and symptoms of IBS

Irregular or non-existent menstrual period

blog.udemy.com/low-cortisol/

[NancyLynn]

Many problems it seems.I would just go back to Dr. I am here to give a listening ear.

[Bev6536]

You certainly have a lot on your plate. I find stress aggravates my breathing. I know it is difficult to eliminate all stress.

[LORBIC]

You must see a Pulmonary doctor, they are the ones who are trained to treat lung diseases, they will do all the needed test which it sounds like hasn't been done and get you on the right meds for you. If you aren't on o2 then you need to be. I was told not to go below 88, otherwise I would go into hypoxmia and need to be in the hospital. You need to walk as much as you can as this is what keeps the lungs strong, start out with very short walks and as you get stronger go a little further. You need to take care of you are the moment so you will be around to take care of your mom. If it is possible to have someone come in the home to care for her, I would go that route, she will be so much happier, Plus I have no love for nursing home. I'm also over weight and I know it doesn't help the breathing, but as I tell the doctor it's didn't go on over night and it's not coming off overnight work with me here. I'm sure the lack of oxygen is causing the legs to be weak, it effects every part of the body. Keep us posted on how your doing.

[Hidden]

So sorry you are having a bad time of it. I suggest you get a Dr. that will take you seriously. Your stress with your mom isn't helping at all. You should be on Oxygen, at least at night. You should also have a travel unit. You need to be careful when visiting your mom, any infection, especially MRSA is very bad for you and your lungs. I can't stress enough, you much have a Medical team behind you that is there to help you. Do it soon!!! Good Luck.

[Suzyolive]

Wondering how you are doing?

[Imageimp]

Hi Suzyolive! Thanks for checking with me... Things have sort of leveled out in a way. Mom is (still) in an intermediate level nursing home (amazingly she's been there a whole year now), and wants to come home in the worst way. I just can't take care of her 24/7, and there still is no one else. Having someone come in for a few hours really wouldn't help - it would just stress her (and probably me too!) to have strangers coming in and out, and I'd probably just feel I had to be there to "micromanage" (I'm good at that!).

I badgered her insurance (before she was on Medicare (which she didn't have) and Medicaid) to pay for physical and occupational therapy, and she's been doing really well. Now, however, when it's going through Medicare instead of her private insurance, they've had to cut down to preserve her funds because they said Medicare will only pay $1900 for the year. At this time, though, she's doing pretty well. I get frustrated because there are issues the CNA's at the home "just don't get" - things that cause me a lot of frustration, but for the most part aren't dangerous for Mom. There are some things, though, that have to stop... Her left heel is still not (and may never be) healed and needs constant vigilance to make sure it doesn't get worse. She cannot have socks with any tension/elasticity on her legs,because she still doesn't have good circulation (her right is better ow, though, since the bypass she had below that knee), but several times someone has put socks that weren't hers on her and her legs have swelled around them... She gets a foam bandage on her left heel 3x/week, but when she has a shower (2x/week), the CNA HAS to remove that bandage and then have a treatment nurse put a new one on. Three times now I've found her with a soaking wet bandage on her heel, with her foot white, shriveled, peeling because it's the same as being in a bathtub all day! They simply didn't pay attention and take the bandage off... She could lose her leg/life from something as seemingly insignificant as this.

Anyway, I won't go into problems with "butt-wipes" packages, open with the horrible deodorant scent, being put into her private little dresser with her treats (cookies, etc.). The CNA's are not supposed to put anything in her dresser except socks (which I take home and wash), but I had to take the wipes up to the nurses' station 9 times before they stopped... Nasty! (Hah! I guess I did go into "it"?) I've gotten used to her clothes getting beat up, ruined, bleached or lost - but ...

I'm still so tired and stressed over the paperwork - bills, Medicaid now, Government stuff. She has a Federal retirement annuity, which is too large for Medicaid, so I had to set up an "income trust account" with a lawyer ($1,000) and when her check comes into her checking I have to transfer it to the trust and then make payments (to nursing home, etc.) from that. I'm always afraid I'm going to do something wrong and they will boot her off. It took months to qualify her, and they went back about 4 months, but there is a $13,000 balance with the nursing home left over and I don't know how that's going to get paid... (I also had questions about several hospital bills, so wouldn't pay them until I got answers.. Well, I got notices from a Collection Agency that the hospital turned them over to them. I can only say too bad - so sad - squeeze the rock - you won't even get blood out of it! One of the bills is for $36.00 - seriously?

Anyway, she'll be 97 on Feb. 8, Wednesday, and I'm bringing her home for the day! (She came home on Xmas day, too, which was the first time she'd been here in a year and a half). I'm trying, with therapy and exercises, to get her stable enough to come home, even overnight, for 2 or 3 days a week... She'd still have to stay in the nursing home the other days, but that would give her a break, and wouldn't take over my whole life either. I've been trying to do a little more for myself, although I still see her 4 or 5 days a week. Geeze, I've written another book, but it really is nice of you to ask, and it's sort of cathartic to write about all of this?