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Discussion Starter #1
This was the third time in 11 years. They found NOTHING again. Heart not damaged and working.
My chest pain and pulmonary hypertension is because i have
embolized 6 times or more. I have plumbing problems from a clothing disorder. It can damage the heart
and will at some point
if i don't die out right.
So I'm going back to the pulmonary Doc to get the most out of dysfunctional lungs and most likely a referral to a vascular Doc. From what i know , have read or been told by doctors i know and trust, there is little to be done about pulmonary hypertension class 4 and people with my clothing order die early from clotting.
So.... Time to go camping and fishing on Dauphin island Al ! Bro-in-law took the travel trail down yesterday and it's on site until Oct. the 8th. I have to rest easy for 5 days. Next week I'll pack up the fishing kayak and Honda C70 for a week of R&R. (Reeling and Riding).
 

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I'll pray for two things, a total miraculous healing and a big fish on your line. Go enjoy your time with your Brother in law.
 

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We all need to follow the Doc's orders, get second and more opinions and enjoy our time here....prayers that all of ours are as long as possible! Have a great trip...find those fish!
 
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I have to interject a little levity here. The typo is great! It took me a minute to figure out "clothing disorder"! I'm like huh? I can think of a few lovely ladies I wish had a clothing disorder as in not wearing any. But then I am a lecherous old man!

I hope you have good health for many, many years to come.
 

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Discussion Starter #5
I have to interject a little levity here. The typo is great! It took me a minute to figure out "clothing disorder"! I'm like huh? I can think of a few lovely ladies I wish had a clothing disorder as in not wearing any. But then I am a lecherous old man!

I hope you have good health for many, many years to come.
These are the other disorders i suffer from , dyslexia and auto correct. I'll get boned one way or the other at some point.
 

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These are the other disorders i suffer from , dyslexia and auto correct. I'll get boned one way or the other at some point.
Man, as good as that is, you'll outlive your doctors - probably by them laughing themselves to death. Fish and have fun.
 

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Good luck. Over the past 22 years I have been Cath'ed more times than I can remember. 12 stents and a triple by-pass. Last two of three cath's they also didn't find anything. Blamed the pain on blood clots that passed or broke up.

I have now started on my 4th cardiologist, one retired and two relocated. The one that retired I have seen since all this started, only he wasn't an interventionist so at one time I had 2 cardio drs.. The one I am seeing now is new and I am not certain how this is going to work out.

All this does not include the chronic P.A.D. I have in my legs and the numerous surgeries I've had on both of them. I have a vascular surgeon that I can call directly and never need a referral. Matter of fact I was having a problem with leg swelling and called my family Dr., the next day the Vascular surgeon's nurse called me directly to ask what was going on.

Keep your head up and paddle high! Catching fish is a bonus.
 

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These are the other disorders i suffer from , dyslexia and auto correct. I'll get boned one way or the other at some point.
LOL
I could go back through my posts and find so many that are edited by me. My biggest issue is simply leaving out complete words. My slow brain has moved beyond my even slower fingers!

Get healthy Ickthus!
 

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Had 4 cath's myself still get some really bad pains which they could come up with after 5 stints is exercise may help.

This clothing disorder you speak of may I ask? What is this?

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Discussion Starter #12
Had 4 cath's myself still get some really bad pains which they could come up with after 5 stints is exercise may help.

This clothing disorder you speak of may I ask? What is this?

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Genetic, I'm missing a protein.
Protein S deficiency. Thinners don't seem to work good with me. warfarin (coumadin) does not work. I clot while on it. It can even make it worse when i start taking it. Found out the hard way on this. It cost me the circulation in my right leg and PE 2 years later. After 26 years of this I'm almost as educated as any doctor on this issue. Facture 5, the ten pathways, how different drugs effect them. Injectable heparin is the only drug that has proven effective. I'm on Xarelto as it works along the pathways closest to heparin. Although i had a PE while on it so... You can't live on injectable heparin. It will cause major damage with long term use. I'll use it when i know/feel I'm at high risk for a few weeks or a month. I'm lucky to have a doctor that has worked with me over the years. After being treated at the hospital 6 times for clot in the lung "PE" countless cording of the arm, DVT of the right leg i know a little. I'm more scared to go to the ER today as things have changed so much in the medical field the last few years. To many kids doctors and nurses cutting there teeth in the ER. They either don't understand my condition or do not believe what i tell them. Every now and then i'll get one on point. I know they see all kinds but what part of i have a history of a clotting disorder and i have embolized and can't breath gets you a response of how do you know that. After i get them on page and get some treatment going i'm now admitted and handed over to a new set of doctors "hospitalist" that do not get all the info from the ER doctors and we start all over with getting them on page and i'm just not feeling up to all this while in bad pain coughing up a lung. At the end of the day the treatment is always the same, Always , every single time the last 26 years the treatment has been a heparin drip. All the CATs, x-rays, ehcos, blood tests... That was for them to figure out i need what i told them when i walked in. I clotted and need some heparin. Heparin is dirt cheap. Maybe $1.25-$1.75 a shot. The Lovenox is what they like to use in place of heparin as an injectable. It's about $175-$425 a shot depends on what mob boss you are getting it from? I do all i can to stay away from ERs and doctors that do not know my history or about this disorder. When ever i get with doctors who know me and my history or get to know me
By treating me its the same treatment plan. You should be dead. Do not stop taking blood thinners. Injectable heparin at home when i can't take oral meds is fine. Keep doing what's working for you. My blood pressure is good, sugar, salt, cholesterol... everything is spot on but i clot.
I eat a good balanced diet in moderation. I'm 25 pounds over weight by them 15 pounds by active life history. But that good or better than any 58yr old i know. That is not going to kill from what i have been told.
 

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Genetic, I'm missing a protein.
Protein S deficiency. Thinners don't seem to work good with me. warfarin (coumadin) does not work. I clot while on it. It can even make it worse when i start taking it. Found out the hard way on this. It cost me the circulation in my right leg and PE 2 years later. After 26 years of this I'm almost as educated as any doctor on this issue. Facture 5, the ten pathways, how different drugs effect them. Injectable heparin is the only drug that has proven effective. I'm on Xarelto as it works along the pathways closest to heparin. Although i had a PE while on it so... You can't live on injectable heparin. It will cause major damage with long term use. I'll use it when i know/feel I'm at high risk for a few weeks or a month. I'm lucky to have a doctor that has worked with me over the years. After being treated at the hospital 6 times for clot in the lung "PE" countless cording of the arm, DVT of the right leg i know a little. I'm more scared to go to the ER today as things have changed so much in the medical field the last few years. To many kids doctors and nurses cutting there teeth in the ER. They either don't understand my condition or do not believe what i tell them. Every now and then i'll get one on point. I know they see all kinds but what part of i have a history of a clotting disorder and i have embolized and can't breath gets you a response of how do you know that. After i get them on page and get some treatment going i'm now admitted and handed over to a new set of doctors "hospitalist" that do not get all the info from the ER doctors and we start all over with getting them on page and i'm just not feeling up to all this while in bad pain coughing up a lung. At the end of the day the treatment is always the same, Always , every single time the last 26 years the treatment has been a heparin drip. All the CATs, x-rays, ehcos, blood tests... That was for them to figure out i need what i told them when i walked in. I clotted and need some heparin. Heparin is dirt cheap. Maybe $1.25-$1.75 a shot. The Lovenox is what they like to use in place of heparin as an injectable. It's about $175-$425 a shot depends on what mob boss you are getting it from? I do all i can to stay away from ERs and doctors that do not know my history or about this disorder. When ever i get with doctors who know me and my history or get to know me
By treating me its the same treatment plan. You should be dead. Do not stop taking blood thinners. Injectable heparin at home when i can't take oral meds is fine. Keep doing what's working for you. My blood pressure is good, sugar, salt, cholesterol... everything is spot on but i clot.
I eat a good balanced diet in moderation. I'm 25 pounds over weight by them 15 pounds by active life history. But that good or better than any 58yr old i know. That is not going to kill from what i have been told.
Thanks for the update i understand now

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Ickthus sounds like you've been through the wringer also. I think we would both agree that a trusted doctor plays a huge part in how we progress and feel.

When the cardiologist that had placed most of my stents left I was heart broken, dejected even. He left Wis. for NM. I think there was some politics between him and the hospital. Then almost 2 years ago my regular cardiologist retired. Then as I stated I've had a Vascular surgeon that has done more procedures on my legs than I care to think about. He too turned 70 this year, though you wouldn't think it and I don't know what I will do when he retires. I believe I trust him even more than most priests. With out him I would have lost these legs 10 years ago.

Again I hope you enjoy your trip!
 
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Discussion Starter #15
Add another five days to doing nothing. I got aa little to busy Sunday and aggravated the surgical sight on the wrist and got it bleeding a little. I had an ultrasound at the ER yesterday and no aneurysm or hemorrhaging but it had bled. I just added more time not using that arm or going to the island this week. Ohh well, i can go to the range and work on my off hand shooting.
 

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Sounds like Sunday was a terrible day all around.

Woke up early with leg and chest pain, hot bath was no relief. Ended up in ER then the hospital with IV's and electric wires everywhere. Stress test yesterday, they let me come home so it must be OK.

Keep that incision clean and quit gooffin off! Let that thing heal. I know it's hard doin nothing.
 
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