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I JUST CAN'T WIN

mark_f

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#1
The last year has been a bad year and I am about ready to just give up.
It started with the surgery to install a spinal cord stimulator. A month later, I get a staff infection on my spine at the site of the incision. This created another surgery to remove the device and clean out the infection. This then lays me up for two months with a PIC line and antibiotics by IV twice a day and a nurse coming daily to pack the open incision until it closes. Meanwhile I'm not aloud to do anything. This took three months of my life I can't get back. Then two months later, I get violently sick and spend a whole month in bed until they finally figured out I had contracted C-diff infection, most likely from the massive doses of Vancomycin to kill the staff infection weakening my ability to fight it.. So I have to take another antibiotic to kill that infection. Next for two months I am too exhausted to function. They attribute this to the C-DIFF infection and I am given large doses of vitamins by injection every day for two weeks to counteract the exhaustion.
After this I am finally feeling half decent and can get back to living and trying to get into my shop.
Then my favorite dog dies from congestive heart failure about a week ago.
Well ...... the doctor called today. They do a yearly CT scan to check my ascending aortic aneurysm which they did last Friday. It seems my aneurysm has grown. It was stable for the last 9 years but is now getting worse. I have to go talk to the vascular surgeon about options and when and if intervention is required. The surgery to replace the aortic arch that comes from the heart is risky and dangerous at best. The mortality rate is poor.

Seems I can't catch a break this year. The only thing that keeps me going is, I can look around and there is always someone worse off than me. I will keep plugging away and hope to beat this too. God's will will be done either way.
 

Bamban

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#3
Hang in there, buddy. It will all come pass.

You kind of remind me of my older brother, whom I've been visiting every other day. On the 22nd of last month he had a heart attack, they did 5 bypass, after he got out of CCU, he had a mild strole, back to CCU he went. A couple of days getting out of CCU for the 2nd time, he passed out. They had to get out some stones.

Now he is back in the regular room getting ready for rehab. The guy is so scared to go home that something else would happen and he might not make it to the hospital.

He is still on rehab for knee replacement when he had a heart attack.

Yesterday I was jokingly telling him that the big Guy up above is picking on him because He knows he can take it...
 

chips&more

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#4
In my younger years I was under the belief, that all doctors knew doctor stuff. Now in my golden years, I now know that not all doctors know doctor stuff. And it was a personal lesson learned the hard way with bad advice and surgery from certain doctors. I now question doctors. Please get well and with a good doctor(s)…Dave
 

dlane

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#5
Carful now mark my dad had a ascending aortic aneurysm they fixed but in the process he had to get a Ct scan , they used a iodine die that killed his kidney so he had to be on dialysis the rest of his life
Beware of iodine dyes
 

FOMOGO

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#6
Hang in there Mark. I'd go into the my last 4 months of "personnel growth", but I'm too tired to type that much. All the best, Mike
 

Bill W.

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#10
Mark... Prayers and Best Wishes headed your way...
As they say, "This too shall pass."

Bill W.
 

Bill Gruby

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#11
Prayers for you Mark just don't seem enough. Next step is lighting a candle. Have to be at the church in the AM for the Festival they have every year. I will light one for you then. Good Luck my friend.

"Bill"
 
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kvt

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#12
We will keep you in our hearts and prayers, All of us are pulling for you, Ken
 

mark_f

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#15
A little update. When you have an aortic aneurysm such as I have, high blood pressure is a bad thing because it puts stress on the aneurysm. Too much pressure could contribute to it bursting causing almost instant death. I take blood pressure medication to keep the pressure on the low side of normal, around 110/65. Well ....... my medicine stopped working for some reason. It has no effect on my blood pressure any more. My pressure is 164/98 :eek 2:. This is not good. I do not know what is going to happen or what they will do about it yet.
 

jeff_g1137

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#16
Hi Mark
The best of luck & all the best to you, i hope it works out for you.
Jeff
 
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Silverbullet

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#17
Try to use your own brain to slow down the build up of pressure. Just totally relax and kind of concentrate but at nothing . You can control your heart rate it's a muscle in your body . If you feel tense just make yourself relax slow your breathing and just be still . It takes time but you can do it. It's a meditation method. I use to love to make my heart rate change when they would listen drs I mean. I would bet the vitamins and antibiotics plus being sick has changed your body now they have to figure what will work for you all over . I'm still praying in fact I've been up all night lots of things on my plate I can't do now that need fixing. Have just found out there's cats livin in a shed outback need to chase them and block them out. Deck on the house needs new boards and rebuild one . The washer stopped working needs a cycling motor or valve. But here I lay on my big fat bum waiting watching another year of my life go to the crapper.
 

BGHansen

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#18
The last year has been a bad year and I am about ready to just give up.
It started with the surgery to install a spinal cord stimulator. A month later, I get a staff infection on my spine at the site of the incision. This created another surgery to remove the device and clean out the infection. This then lays me up for two months with a PIC line and antibiotics by IV twice a day and a nurse coming daily to pack the open incision until it closes. Meanwhile I'm not aloud to do anything. This took three months of my life I can't get back. Then two months later, I get violently sick and spend a whole month in bed until they finally figured out I had contracted C-diff infection, most likely from the massive doses of Vancomycin to kill the staff infection weakening my ability to fight it.. So I have to take another antibiotic to kill that infection. Next for two months I am too exhausted to function. They attribute this to the C-DIFF infection and I am given large doses of vitamins by injection every day for two weeks to counteract the exhaustion.
After this I am finally feeling half decent and can get back to living and trying to get into my shop.
Then my favorite dog dies from congestive heart failure about a week ago.
Well ...... the doctor called today. They do a yearly CT scan to check my ascending aortic aneurysm which they did last Friday. It seems my aneurysm has grown. It was stable for the last 9 years but is now getting worse. I have to go talk to the vascular surgeon about options and when and if intervention is required. The surgery to replace the aortic arch that comes from the heart is risky and dangerous at best. The mortality rate is poor.

Seems I can't catch a break this year. The only thing that keeps me going is, I can look around and there is always someone worse off than me. I will keep plugging away and hope to beat this too. God's will will be done either way.
Keep your chin up Mark, we're all pulling for you.

Bruce
 

mark_f

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#19
Today my doctor said the vascular surgeon wants to refer me to a thoracic surgeon 100 miles away in Pittsburgh. I hope they get it set up soon as I am worried. They couldn't or wouldn't explain if I need intervention on this or if it can wait longer. I do know they won't do anything until it is absolutely necessary. So for now I wait.
 

tweezer

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#20
Thoughts and prayers are with you Mark. Went thru a really rough patch like yours in 2013. Try to keep a positive attitude - it helps immensely. Have you looked into the Cleveland Clinic? Some of the best doctors in the country. Try to find a surgeon that does a lot of the same procedures you need - experienced Dr's make a lot of difference.
 

mark_f

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#21
The surgeon called today and filled me in on what they could. I have an appointment at the surgeon's office in early October. They said they want to do another scan and an echocardiogram and get me in their system in case I need surgery soon. They looked at my test so far and said my aneurysm has grown to 4.3 cm. They won't operate until it reaches 4.5 cm. They will closely monitor it now to see how fast it is changing or if it stops, but the surgery is getting closer. If they can get my blood pressure down a little more it will make less stress on it. So it looks like I may dodge a bullet for a bit I hope. It all depends on how fast this aneurysm is changing. All this is subject to change after they do their tests of course. God will look after me. (I don't think he's finished with me yet.)
 

Silverbullet

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#23
Sounds like the pressure is all ready lowering . Stress is great for high blood pressure. Try to focus on the builds you still need to do. Start mapping them out in your brain , I know that's where you do all of it long before anything's on paper or sky writing and Mac drawing. Computer crap , give me graph paper a compass and rulers . God I don't even remember where left my draftsmen set. At one time I even had the tilting table and all the goodies. We are all here for you. If I wasn't screwed up I'd offer to drive YA to the tests and all.
If I wasn't messed up I'd have a big load of chrome steel bars and shafts but I think someone on here got them . I'd like to get 4-5 of them if he,'ll sell me some . 19 lengths up to 1 1/2" - 80" . Pretty stuff.
YUPP if you can relax keep the bad thoughts of worry and anguish we might meet sometime near you. I use to travel out in Pennsylvania quite often. That's if I can ever get fixed up. But I am hanging see the Dr in another week or so. Still praying for you
 

mark_f

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#24
I went to see the heart surgeon Tuesday. They did a very extensive echocardiogram (lasted an hour and a half). Then I went upstairs to meet the surgeon. They looked at me and asked if I had Marfan syndrome. I said it was suggested that I may but arguments either way, so they did some testing and concluded, yes, I do have Marfan syndrome. The problem with this is many of my problems are conditions associated with this disease (which you are born with). They say since I have this and already had a arterial dissection in the past, I am at a much higher risk of another one or the aorta rupturing which would mean instant death. They say it also means the surgery may need done sooner. Now that they had me really scared, the surgeon then said I should be safe ( or a good chance) for the next two years. They are going to watch everything closely up here where I live and if nothing changes, I will return to Pittsburgh in two years for more extensive testing again. He said if I have ANY problems before, to call and return to Pittsburgh immediately.
So ...... what this all means is I have a ticking time bomb in my chest that may go off at any time or not at all ...... But most likely will need attended to one day. What am I going to do? NOT WORRY AND BE HAPPY ..... live every day like it is the last and do everything I want and most of all get back to my shop.
 

Silverbullet

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#25
YUPP best way to beat illness , be happy . With a beautiful woman by your side , man your set enjoy life just take stress out of it. The drs don't seem to worried so there YA go. It's good to have two years to just be rechecked again. Enjoy my friend we got good news somewhat. Not complete healing but more time to help the process. Live stress free , enjoy your builds , life is to be lived.
 

woodchucker

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#26
I went to see the heart surgeon Tuesday. They did a very extensive echocardiogram (lasted an hour and a half). Then I went upstairs to meet the surgeon. They looked at me and asked if I had Marfan syndrome. I said it was suggested that I may but arguments either way, so they did some testing and concluded, yes, I do have Marfan syndrome. The problem with this is many of my problems are conditions associated with this disease (which you are born with). They say since I have this and already had a arterial dissection in the past, I am at a much higher risk of another one or the aorta rupturing which would mean instant death. They say it also means the surgery may need done sooner. Now that they had me really scared, the surgeon then said I should be safe ( or a good chance) for the next two years. They are going to watch everything closely up here where I live and if nothing changes, I will return to Pittsburgh in two years for more extensive testing again. He said if I have ANY problems before, to call and return to Pittsburgh immediately.
So ...... what this all means is I have a ticking time bomb in my chest that may go off at any time or not at all ...... But most likely will need attended to one day. What am I going to do? NOT WORRY AND BE HAPPY ..... live every day like it is the last and do everything I want and most of all get back to my shop.
Hoping you don't die on us. I happen to like you. So don't do strenuous stuff. That girl friend might have to go on hold, but don't worry, there are lots of takers here ;).
I wonder if it would be better to push for the surgery, than to risk being alone and blowing an artery. Seem like trying to fix it is better than worrying about it. At least you would get some peace of mind.
 

mark_f

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#27
Hoping you don't die on us. I happen to like you. So don't do strenuous stuff. That girl friend might have to go on hold, but don't worry, there are lots of takers here ;).
I wonder if it would be better to push for the surgery, than to risk being alone and blowing an artery. Seem like trying to fix it is better than worrying about it. At least you would get some peace of mind.
I kind of asked that and i know it is really risky surgery, but they should be better at it than they were 8 years ago. The surgeon wants to wait and watch closely and then decide. I may not make the two years it it keeps growing.

Edit:. I do plan on hanging around a while longer.
 

Glenn Brooks

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#28
Hi Mark,

Sorry to hear about your medical problems. You are a lot closer to this whole thing than the rest of us. HOwever! Two bits of advice might be worth thinking about. Go find another top rate cardiac guy and get a second opinion. At least talking to someone from a different clinic/ hospital will give you comparasion information to make a more informed decision about what you want to do. Either they will confirm it's ok to wait, or present an alternative for more immediate treatment. Either way, you are in charge.

Second thing - really be proactive. Don't agree to any plan that doesn't sound right to you. Ultimately, you are in charge, not some clinic or doctor. So if you decide an different course of treatment is better - walk in there and say - OK, We are going to do this! Another way! Insist on getting the treatment that you think is best.

Best wishes, and keep making chips!
Glenn
 

Superburban

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#29
Hi Mark,
Second thing - really be proactive. Don't agree to any plan that doesn't sound right to you. Ultimately, you are in charge, not some clinic or doctor. So if you decide an different course of treatment is better - walk in there and say - OK, We are going to do this! Another way! Insist on getting the treatment that you think is best.

Best wishes, and keep making chips!
Glenn
Two things to watch. There is still many old school docs that do not like patients to ask questions. My Father had an autoimune disorder, After seeing his doctor, who wanted to change some treatments, and my father asked many questions. When he got home, he got a call from the doctors office. They dropped him, because he asked to many questions, and went over his time. Took him over two years to find another doc.

Yes, you have the right to be involved in the decision making process, when it comes to your health treatments. But there is nothing that says the doc has to follow your decision. You can say yes or no to his ideas, or go somewhere else. Thankfully most are not that narrow minded.
 

JPigg55

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#30
Hi Mark, hope everything works out for you and you're still making chips years from now.
I feel your frustration with the medical community. While not life threatening, I've been dealing with another episode of back problems due to degenerative disc disease.
In previous years, the problems were identified and dealt with in a few months. The last previous issue resulted in two surgeries, but was still back to work in a little under 4 months.
Thanks to our illustrious government, insurance companies, and the medical community, this latest episode has been going on for almost 8 months and still dealing with back pain.

My pain management doctor told me that a lot of surgeons are now "Picking and Choosing" which cases they'll deal with based on the probability of success. They don't want bad results affecting their records and/or recommendation levels. This doctor even told me that in cases where the government is involved in picking up the tab that they won't pay for an unsuccessful procedure.
He also told me they will do whatever is necessary in a "Life Threatening" situation, but it leaves me to wonder if some of those affected might have been better off if treated earlier.

I hope this isn't your situation. In mine, I've seen 3 surgeons over the years concerning the possibility of doing a disc fusion procedure.
Two stated to me that they "Wouldn't perform the procedure due to my 'Risk Factors' that might affect the success of the operation".
The last one stated he wasn't sure the operation would alleviate my pain due to the amount of damage.
Maybe that's the case, but here I remain in pain day in and day out for months with no end in sight.

Don't get me wrong, my hat is off to doctors and nurses who have dedicated their lives to helping people and I know that some things are beyond what they can do anything about.
However, I could go on for pages about my experiences with the medical community both good and bad, but I won't.
I will, however, leave you with one question. When is the last time you saw a doctor who said: "I'm not sure what is wrong" or "There is nothing I can do".
Go to the doc with the flue and they'll prescribe you a fist full of overpriced antibiotics even though I know that antibiotics do nothing for viral caused illness.
 
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