For all MM members, a FYI, Steve's health Options

[Guest_ohsteve_*]

Hello all my friends,

Just to let you all know, I finally had word back from University of Pittsburgh. They have told me that I am not an illegible candidate for lung transplant. Not the news I really wanted to hear, but I understand their reasons, I have far too many reactions to medications and an organ receiver has to be able to take multiple medications in large doses and is subject to lots of stress. They felt that I could not take the medication nor would my body withstand the stress.
I was semi-prepared for this so it is not a total surprise, I will continue to write and post here for as long as I can. Please do not feel badly about this, if you wish to try and help, then please donate to the American Lung Assoc. or your countries lung research projects to help in the fight against lung disease. Thank you all for your continued support and prayers.

Take care all,
Steve

[Peterpan]

Dear Steve~

I am sorry to hear this. But, as you say you were prepared and knew the risks up front and knew that there may be a rejection. You are very sensible.

I wish you well under the circumstances and hope that in other ways the Doctors may relieve your health problem. Or make you more comfortable.

Please know, that I think of you often and your amazing sense of humour and mischievous smile in your photo! AND especially the gift you have to write and we are privileged to share in your words.

Hugs from across the ocean!

From sunny South Africa!

Bev

[Guest_ohsteve_*]

Bev, thanks for your kind words, I have had that smile ever since I can remember, but I have not an ounce of mischief in me... I did say that with tongue firmly in cheek, and fingers crossed. I will be making jokes at the reaper when he comes to call, maybe if I get him laughing enough he might forget to take me with him.

Take care
Steve

[Cleo_Serapis]

Gosh Steve,

Not the news I/we were hoping for! I certainly do wish you all the best. And remember your bright attitude will take you far - even on those shittiest of days - you havea friends, and I hope I am one of them in your circle to lend an ear.

BIG HUGS

Lori

[Thoth]

Dear Steve,

I'm sure you will have something to say when he comes, but remember he could appear in an entirely unexpected guise and catch you unawares.

I have some direct experience of this. The feeling of disappointment I had when I was told "You are unworthy to die" was very intense, like failing an exam. I was returned to a broken body in disgrace to face the pain. (All my ribs were broken and had perforated the lungs)

So death is not a bad thing in some circumstances but in the meantime all I say is that my prayers and thoughts are with you wherever you travel my Brother Poet.

It seems that you are more worthy than I for now, but the doctors are not always right and strange things can happen. You could be writing poems to share with us for a long time yet. Keeping in a positive mindset is probably the most difficult challenge you must face and writing can help release tension.

hugzz
&
Hambaghashle, AmaMadhoda (Go well, o Great one)

Wally

[Guest_ohsteve_*]

Lori, You have been a friend ever since your invite to come join MM. I am trying very hard to maintain the brightest outlook I can, but sometimes it is very hard. Last three days my blood sugar has been taking me on a roller-coaster ride, I see the Doctor on Thursday, I sure hope he will put me on medication to at least smooth out these ups and downs. I am getting worn out and not even doing anything, and to think people take drugs to make themselves feel this way and here I am getting it for free...lol. Thank you for having invited me and for having such a wonderful place that has let me expand my writing.

Steve

[Guest_ohsteve_*]

Wally, I can't begin to imagine the intensity of pain that you have gone through and still have. Not being able to breathe has got to be one of the worst sensations I can imagine right up next to being burned. There isn't much that can be done to alleviate the continuous agony of trying to get enough oxygen. I am not sure about the worthiness or unworthiness of transplantation, I thought about it for a long time, wondering who would have to die to provide me with a set of lungs, and did I really want that on my conscience. So when my pulmonary Dr. convinced me that if I didn't go get the eval. I would always wonder if I might have been a candidate. Well now at least I know.

As for how long I have, I am just thankful for every day I wake up. I am sure there are lots of people far worse off than I, some with different circumstances, such as you and the things you are going through, Sylvia and her husband, John and his wife who just had a transplant, Arnie and his arteries, I have lots to be thankful for, just having my family near and friends such as all of those on MM.

Writing is a tension reliever, so is painting, and reading, and helping my friend redo my house. Laughing with my kids and grand kids, and at my silly dog. My prayers are all with you who need them, too.

Take care
Steve

[Guest_ohsteve_*]

Hi all again, just a short but idiotic update from those wonderful folks at Medicare and other health insurances. I was just told that Medicare will not pay for my portable Oxygen because I don't meet their criteria which is a "standard medical practice", the cost of this would be $2000 a year. And the point is that if it was strictly up the the doctor I would have Oxygen, Medicare is the one that wrote this standard' So that in 4 years the time I supposedly have left they don't want to pay $8000. These are the same people that would pay for my lung transplant and the medications and follow ups after such which would be more than $8000 a year, does this make sense to you? I am so frustrated and pissed off at this crap I could just scream. It doesn't matter that my quality of health is an issue, don't meet the standard, don't bother us.

It was even more interesting to read an article on the web that researchers have just found that the bodies mechanism for making new blood vessels that normally fix around diseased tissue have the exact opposite in persons with pulmonary fibrosis, they make this enzyme build new blood vessels away from the needed spots so that it is actually harder for fibrosis patients to breathe. Isn't that a kick in the pants?! But I don't meet the criteria, I don't need to be on oxygen during the day... yah right, I guess it will be okay for me to walk down the mall and just pass out so they can send me to the emergency room where what will they do? You got it put me on Oxygen to revive me.

Crap!! Why not just take me out and shoot me.

Steve

[Arnfinn]

Ah, my good friend.

Not good news.

Open a door and it slams in your face.

When Ethel broke her hip, at 95, the doctors did not want to operate for obvious reasons. (cost, age, and physical complications).

Well, Pam and I SAID operate! The surgeons had no option than to carry out our request= thousands of dollars.

Yep! all the taxpayers expenditure and surgical expertese only lasted a week. Ethel passed away.

Mate, think about this. Don't be beaten by some smart arse keeping a seat warm.

You have to put up your hand and say even if there is a ratio chance of 10 to 1 per cent. Give me a piece of the action, or give me a fair go by providing oxygen.
Get the blow-torch out and give them hell.
Get a second opinion that will back up your claim for either one or the other.



John

[Guest_ohsteve_*]

John, I have sent a letter/email to the local TV stations, no replies yet. I have a phone call into the Ohio state Sen. am waiting for a return call, I am getting retested again next week, and will get tested every week until I do meet the criteria, I am paying for the Oxygen for now and under protest, but I can't let my principles stop me from trying to stay as healthy as I can. It is just the frustration of having to put up with this nonsense that wears you down. Am still persevering.

Steve