Another member is lost

[barbara]

Member laraephenix has lost her struggle with COPD I am sorry to announce.
Her daughter called me today (LaRae lived in Colorado) to tell me that her mom had fallen last Thursday and broken her wrist and humerous bone. She was hospitalized and because of her COPD, the doctors said they could not operate as she would not be able to handle being put under. The next day a pulmonologist examined her and she was found to have an 80% CO2 retention (they had her on a Bi-pap machine). Her daughter said she hated it and struggled to tear it off (sounds like what happened with my mom). This caused her to have an anxiety attack and she quickly went downhill from there. Sounds like way too much oxygen was being administered! She had asked about stem cell therapy and was told there wasn't anything. I sadly told her daughter about Regenexx in Broomfield and their orthopedic pain management using stem cells. Regenexx has been featured on a local TV station. They have been written up in the papers and yet the doctor evidently was not aware that such a treatment even existed.
LaRae pretty much gave up at that point. The pain and the anxiety and stress was too much her daughter said. The meds they gave her only added to her distress. They put her in hospice on Monday and she passed away on Tuesday morning.
It looks like we have a long way to go to educate the public and the doctors about what we need as far as therapies that can actually cure us. I will keep on fighting for LaRae and everyone out there no matter what condition you suffer from. I asked her daughter if I could post her story. A lot of the tragedy in the hospital paralleled the treatment my mom was given. Her daughter said yes and said she was glad to talk to someone that could relate.
It made me feel a little better to know that, but until we win this fight, I am afraid there will be many more on the fallen list.

 

[Everett]

Bringing doctors and hospitals up to speed

I have been thinking of how we as pioneers can get our info to the health profession as we gather it. I know that we need to be able to contact pulmonologist and thorasic people as well as rehab techs. I don't think that I have the organizational expertise to assemble the necessary names and addresses to contact the necessay department heads and establish a repertore that they would be open to our information. I do know that they are becoming more aware of the research that is going on in stem cell transplants for various diseases and injuries and maladies.
A "clearing house" needs to be set up much like you and Jeannine and Tony did for the stem cell pioneers. It is possible and it may as well be us to start it if it isn't already in the mill somewhere.
I read of LaRae's passing and how the care she was given at the hospital seemed to be lacking in several areas. If we had some information works to give to the nurses,techs and doctors to follow it would of tremendous benefit to us.I am sure that for each of us that has been hospitalized can vouch that the drs. and RN do not know how to treat COPD patients. That is one way to get the word out--have a severe exerbation and end up teaching. We need handouts and infocards
We also need to stay strong as our bodies will allow.That is a must.

 

[Everett]

clairification

I stated that the doctors,nurses and techs didn't know how to treat COPD. Poor choice of words when I re=read it this A M.
What I should have said was they didn't handle tha patients as well as they could.
One thing is I have a degree of claustrphobia and when they start wiring me up to all the monitors and I V s even the oximeter on the finger the tension level in me rises. Then if I am lying down and the head of the bed is low things really begin to pick up and I want to sit up immediately. Most of the time they don't have extra staff to stay with me to make any adjustments that I feel I need and it takes forever for the nurse to get back in to see what I need (want).

Question- how advanced is your COPD?
How many of you have claustophobia and to what degree? severe,moderate,mild

There are some things that are extermely important
O2 is one but just as vital is the CO2 level and that is donme with arterial blood gases (Lord how I hate them) The bipap is vital here and if they try! to put a mask on me and strap that baby down the fight is on if I don't have complete control. I have to have my finger on the release button and sometimes have to release it several times to let my brain know it is in control and can bail out if I want. I could almost feel what LaRae was feeling when they put the mask on her.
If anyone has any comments that gives care info please send it to me by e.mail to e.byrom@sbcglobal.net
I want to start putting this together. I feel it is important. It may not change the outcome but it may make the hospital stay and possible our last bit of time here less undesirable and may even help the caregivers at the hospital not as tragic to deal with. It has to hurt them too even tho they may not show it.

 

[barbara]

It would be nice if a patient could give a short instructional manual to the doctors and nurses, but would most of them care to read it or would they just go about their work as if we are mindless creatures who have lost our brains due to lack of oxygen?
How many times have you had a nurse more concerned about getting you weighed than if you can breathe? I also love the kind that slaps the blood pressure cuff on before you can barely get seated. They are always in a hurry up type mode which for me just adds to the stress. I would rather just have them leave me alone for awhile and then come back for all the nasty little tests they must do. I could rail on for a book's worth, but I really do not plan to go back to a conventional old school type medical doctor again. They simply are not in touch with my needs as a COPD patient. My current doctor is a MD who also practices alternative medicine.
I think your idea has merit. However, the outcome would depend on those that you want to inform how to take care of you accepting that you actually know better than they do when it comes to how to do it!

 

[michaelsdad00]

definition of patient

I am not always sure that being a 'good patient' is as beneficial to one's well being given how dangerous a place hospitals are...
pa?tient (pshnt)
adj.
1. Bearing or enduring pain, difficulty, provocation, or annoyance with calmness.
2. Marked by or exhibiting calm endurance of pain, difficulty, provocation, or annoyance.
3. Tolerant; understanding: an unfailingly patient leader and guide.
4. Persevering; constant: With patient industry, she revived the failing business and made it thrive.
5. Capable of calmly awaiting an outcome or result; not hasty or impulsive.
6. Capable of bearing or enduring pain, difficulty, provocation, or annoyance: "My uncle Toby was a man patient of injuries" (Laurence Sterne).
n.
1. One who receives medical attention, care, or treatment.
2. Linguistics A noun or noun phrase identifying one that is acted upon or undergoes an action. Also called goal.
3. Archaic One who suffers.