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MtPockets

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I am still researching whether or not to go to a ventilator when I need one. However, I just got out of the hospital after a 4 day stay due to a high cpk count of 1450, and my kidneys were shuting down. I had no urine all night before I went into the hospital. So I may not reach the point of having to make the ventilator decision, it's all in God's hands anyway. One way or the other.

God Bless
Capt AL

Anyhow here is a comment which gives another view point, positive, about the vent. I thought you might find it helpful. It was written by Cheryl Carter New. You can go to the site for yourself at this link if you like:
http://www.mda.org/publications/als/als8_1.html#ALS
Her article is about halfway down the page.

"ALS - A Disability or a Fatal Disease?
by Cheryl Carter New
Health professionals both in and out of neurology have told me I will die of ALS. The common theme is "three to five years after diagnosis." I have had the disease for more than seven years now and am losing the battle to walk. I lost my speech a few years ago. What I want to know is why ALS isn't treated like any other disability. Why are we told we will die of it? ALS affects voluntary muscles, not the critical ones one needs to live. Eventually it affects one's diaphragm, which is necessary for breathing, but there's technology to restore that function.

Disease or disability?
Quadriplegics with spinal cord damage aren't necessarily told they'll die of their injuries. Yet their functions are similar to those of us who have ALS.
Quadriplegics have rehabilitation centers. We have hospices. Comparable diseases such as Parkinson's, multiple sclerosis and various muscular dystrophies are seen by many doctors as disabling conditions — not inevitably fatal diseases. If you have one of these diseases, it's assumed that health care professionals will help you to "overcome" the symptoms and get on with your life.

Too Expensive?
The first time I visited a prominent center for ALS, the coordinator told me it was "too expensive" to prolong my life. She told me to take that trip I'd always wanted to take before "it was too late." When I asked about research, she said, "Well, last year we thought XYZ would be a cure but it did not work out so we don't get excited about anything now." I left there with no hope and no future. I'm a researcher by profession. So when I got over the shock of visiting this center I did some in-depth research.
I learned what nerves and muscles are affected in ALS. I learned what devices are currently on the market to overcome the most severe of the problems affecting ALS patients.
I looked at Christopher Reeve, who is making a difference in the world in spite of being on a tracheostomy tube for breathing. I looked at Stephen Hawking, perhaps the world's premier theoretical physicist. He teaches classes, writes books, has fathered children and has a full and active life. When he received his ALS diagnosis in 1963, he was undoubtedly told he would die.

Quality of Life
Too often, health care professionals tell people with ALS: It's too expensive to prolong your life, it's too much of a burden on caregivers, and "you don't want to live that way, do you?"

Let me take these one by one and give you my perspective.

1. It's too expensive to prolong your life.
Who are these people who put a price on a life? Do they know what I will contribute to the world if I live? Do they know the value of my life to those who care for me?
I've talked to many people who choose to live and have willing caregivers in the home. They aren't all rich. In fact, some would be considered low-income by the standards of many health professionals, but they manage just fine.

2. It's too much of a burden on caregivers.
This is a personal matter and not one for judgment by outsiders. There are people to whom a loved one with ALS is so important that they gladly provide care.
I know a woman with the disease whose husband provides such good care, the local hospice program said the family didn't need assistance. Her daughters-in-law have offered to spell her husband so he can get out and pursue his own interests.
My husband is a wonderful caregiver and we have become even closer through the challenges we face.

3. You don't want to live that way, do you?
Let's see — I don't lose my sight, hearing, sense of feeling or the ability to taste. I can still see the beauty of nature, hear the music of the wind in the trees, feel the rain on my cheeks, and experience the love of my husband and family. I can watch the boats go by on my little lake and see Big Bird (our great blue heron) as he walks in his dignified way along the shore.
With technology, I can continue to write and correspond with my family and friends. I can even talk. And there's new technology every day. With a power chair, even if I have to go on a trach I can be mobile and can travel. I may not be able to move, but I can experience the world.
How many people, in their rush to do the next thing, don't experience their world to a tenth of the degree that I may?

Focus on Living
It took many visits with various doctors of neurology and lots of miles on the car, but I finally found a clinic where every person is focused on helping you live with the disease — the MDA/ALS Center at Carolinas Medical Center in Charlotte, N.C. I am fortunate; I have talked with dozens of people who are not so blessed.
Living with ALS or dying of it is a personal choice. It's a choice, not for the health care professional to make, but for each person with the disease."
 

CindyM

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Wow- Powerful article MT. Again, sorry to hear you've been in hospital. Hoep things are better real soon. We missed you!
 

rbtro

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Once again, you've done it, given us a powerful article and more food for thought. Sorry to hear your having problems with the kidneys. I saw the urologist last month he says "I see no problem other then your neuropathy and MND". I too am in the decision state for vent or not to vent. Saw the Pulmonologist today. I am now at 25% FVC. He wasn't too concerned since I am getting along OK with the BiPAP. He suggested increasing the BiPAP pressure. I am currently at 8inH2O/4inH2O which he says is low. I am going to increase to the inhalation to 12inH2O tonight to see how it feels. I sure hope that you come around on the kidney issue. I keep hoping that I can prolong the end by ALS. I don't want to succumb to anything else. I 've had Coronary Artery Disease ever since I had a heart attack at 36. I always thought that the heart would give out. Now I have ALS and my breathing is suffering. I can no longer lay on my back and my legs and feet are swelling. I can't sleep more than an hour on a side for the pain of the lower leg wakes me and I have to be rolled to the other side. I understand the who wants to live like this. But as you say it is in the Lord's hands. He will take me when my work is done.


God Bless
Rich
 

Al

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Good Article Capt. Al. I can relate Rich to the swelling feet. Mine started doing that a few weeks ago and I just went to the Doc today because of excruciating foot pain and he says I've got gout. Fun wow. I had a quad by-pass in 99 so can relate on the heart issue too. Ain't life grand?
 

MtPockets

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Thanks all for the good responses. I really appreciate it..

Well just spent 4 days in hospital again, trying to figure out what my body is doing.

I still do not understand this CPK thing and how it works. What happened according to the docs is my muscle spasms rubbed muscle against muscle which sluffed off muscle tissue. Which then went into solution in my bloodstream and when the blood went to the kidneys to be cleaned, the muscle tissue clogged up the pores in the kidneys so that they could not produce any urine to eliminate the waste in my system. The CPK test which shows how much is in solution, as best I can understand it, went from 750 to 1450. Then I quit urinating. I mean there was NO urine? I also had extreme swelling in my feet and both legs. Never had that before. Oh well never a dull moment. Just hang around long enough and something is bound to change, makes life interesting.

The problem was that 2 years ago my CPK had hit 5000 and I collapsed. I think back then it caused permeant damage to my kidneys, so that now if I have any elevation in the cpk levels my body just cannot tolerate the changes.

Maybe someone else on the board has more knowledge about this and can explain it better. I had to spend 4 days in the hospital with IV fluids flowing at max rate, and catheterized and my CPK count dropped from 1450 to 1200. Which usually it drops down to around 600 after 4 days of IV treatment. I've had to go into the hospital about every 5 months with the same symptoms. Makes me wonder what's going on with the kidneys?

I sure missed the forum while I was gone. Glad to be back.

God Bless
Capt. AL
 

Paty

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Welcome back Capt. Al

Welcome back Capt. Al, may God bless you.


Paty (caregiver) Baja California, Mexico
 

sharonm25

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I understand completey about the foot pain as my mother has suffered with it ever since she has not been able to walk. Her occupational therapist ordered her some special boots to wear even when she sleeps and they have helped tremendously. She has drop foot really bad and these boots help keep her feet in a normal position.

Sharon
 

CindyM

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So, Captain Al. Are things a little easier for you today? How's the foot swelling and the rest? Hope today finds you feeling better.
 

MtPockets

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Thanks Cindy, Sharon, and Paty for asking.

I'm doing much better. Hardest part is trying to keep drinking lots of water to stay hydrated so I do not have to go back to hospital. I just cannot stand hospitals. Guess I have a Phobia about it.

Foot swelling and leg swelling has gone back to normal for me. So actually doing pretty good for an old man.

Sitting here recording some of my favorite worship songs on the computer. In the process found some that some of my grandchildren had recorded. Whew! Boy what a mess those kids can be sometimes. Even the titles were so bad I would not even dare to mention them, much less listen to them.

I have a surprise for them when they come back over here to use my computer. All I have on here now is what they would call old folks songs. HA HA. :-D You know the popular ones from the 1960's. It might do them some good to listen to a few of them. You can actually understand the words.

God Bless
Capt AL
 
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