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Old 12-14-2008, 05:49 AM   #1
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Pulmonary Hypertension

Hi,

My gp told me a couple days ago that he's pretty positive I have pulmonary hypertension based on the ekg and xray. He's ruled out just about everything else as the cause for my edema. He's ordered another echo at a different location using a newer machine because the one he ordered a little over a year ago came back labeled "technically difficult" and said that they were unable to estimate the pressure. That one was done because of the edema and shortness of breath. The edema sorta went away when I developed diabetes cause the high sugar levels were acting as a natural diuretic and we kinda forgot about it. I went on insulin last month and the edema came back.

I'm bummed.

 
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Old 12-21-2008, 10:15 AM   #2
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Re: Pulmonary Hypertension

Hi there,

I can understand why you are bummed. I recently had a Echocardiogram and was diagnosed with Pulmonary Hypertension and Tricsupid Regurgitation. I was told since it was coming in from the right side of my heart that it was not my heart so the Cardiologist did not see me again, but my Primary doctor was not very informative either. I have continued to experience heaviness in my chest and shortness of breath and my primary finally sent me on to a pulmonary specialist. He seemed confused by it since I do not have a prodruding vein in my neck (common for PHT) and I do not have edema (swelling), but my other symptoms - feeling like someone has a heavy hand on my chest, shortness of breath (sometimes even when resting) and slight none productive cough are symtoms. He scheduled me for a sleep study and a heart catherization with the same Cardiologist I first seen. ?? He also ran some blood work but I do not have any results yet. I have no history of lung or heart problems. It is so confusing. I have recently read a possible drug interaction between tramadol (ultram) and Lexapro which we percribed by my primary many months ago. I am not sure the combination could cause this type of problem but the pulmonary specialist said there are very few possilbe causes of PHP (most extreme and which I would not have) but also could be drug interacts or sleep apnea. Have you or anyone else learned anything more about poss. causes and if it can be reversed? thanks

 
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Old 12-21-2008, 11:21 AM   #3
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Re: Pulmonary Hypertension

Well hello,

I had my echo on thursday. The tech says he's pretty sure he got a reading but wouldn't tell me what it is. Said I'd have to wait for the cardiologist to look at it and issue his report. I don't know the cardiologist from adam and he doesn't know a thing about me but I guess I'll have to wait on him before we go any further.

Mine would be coming from the right side too. I do know I have right atrial enlargement. That shows up on the ekg. I also have mild copd and some scaring from several bouts of pneumonia which shows up on the xrays. Last year's echo did get a good enough look at the left side and other than a little mitral regurge, it looked ok. They couldn't get a good enough view of the right side except to pick up some tricuspid regurge. Then the conclusion on the report was that it was a normal echo. I've evidently got many risk factors. The main one is long term, untreated hyperthyroidism which has caused a lot of other problems. Of course the cardiologist who read the echo didn't know any of this but he still got paid for an incomplete report.

Mind telling me what you're on tramadol and the lexapro for? I assume pain, but pain from what? I've found a lot of good info on ph and some really long lists of causes and associations. Mine include the thyroid, diabetes, copd, chronic metabolic acidosis, psoriatic arthritis and a couple other looser associations. I also took up snoring about a year and a half ago which sort of drives the hubby nuts.

My biggest problem is I've had so much else going on the past couple years that the pressure on the chest hasn't been my main concern. So much has kept me away from my normal activities that I've only had a couple chances to exert myself enough to almost put my nose in the dirt. I've also had chest pain and palps for years so a few extra didn't make much difference. It was the edema that was the last straw. I've got this thing about waddling and not being able to feel my feet. I've been having problems with it on and off since march '07 but never when I had an appointment. It finally decided to stick around this time and the gp got a chance to see it in it's fully glory.

From what I've read, reversal doesn't often happen but isn't totally unheard of. It is possible though to stop or slow the progression. Especially if a cause for it can be found and that cause eliminated. I think a lot of the times it's up to the patient though to do the digging cause most doctors don't have time to do that kind of thing anymore.

I was really hoping to hear some personal experiences and some of the things others have been thru. This whole thing is kind of scary. I'm glad you popped in. It was getting kinda lonely around here.

 
Old 12-21-2008, 05:58 PM   #4
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Re: Pulmonary Hypertension

Quote:
Originally Posted by accessn12 View Post
Well hello,

I had my echo on thursday. The tech says he's pretty sure he got a reading but wouldn't tell me what it is. Said I'd have to wait for the cardiologist to look at it and issue his report. I don't know the cardiologist from adam and he doesn't know a thing about me but I guess I'll have to wait on him before we go any further.

Mine would be coming from the right side too. I do know I have right atrial enlargement. That shows up on the ekg. I also have mild copd and some scaring from several bouts of pneumonia which shows up on the xrays. Last year's echo did get a good enough look at the left side and other than a little mitral regurge, it looked ok. They couldn't get a good enough view of the right side except to pick up some tricuspid regurge. Then the conclusion on the report was that it was a normal echo. I've evidently got many risk factors. The main one is long term, untreated hyperthyroidism which has caused a lot of other problems. Of course the cardiologist who read the echo didn't know any of this but he still got paid for an incomplete report.

Mind telling me what you're on tramadol and the lexapro for? I assume pain, but pain from what? I've found a lot of good info on ph and some really long lists of causes and associations. Mine include the thyroid, diabetes, copd, chronic metabolic acidosis, psoriatic arthritis and a couple other looser associations. I also took up snoring about a year and a half ago which sort of drives the hubby nuts.

My biggest problem is I've had so much else going on the past couple years that the pressure on the chest hasn't been my main concern. So much has kept me away from my normal activities that I've only had a couple chances to exert myself enough to almost put my nose in the dirt. I've also had chest pain and palps for years so a few extra didn't make much difference. It was the edema that was the last straw. I've got this thing about waddling and not being able to feel my feet. I've been having problems with it on and off since march '07 but never when I had an appointment. It finally decided to stick around this time and the gp got a chance to see it in it's fully glory.

From what I've read, reversal doesn't often happen but isn't totally unheard of. It is possible though to stop or slow the progression. Especially if a cause for it can be found and that cause eliminated. I think a lot of the times it's up to the patient though to do the digging cause most doctors don't have time to do that kind of thing anymore.

I was really hoping to hear some personal experiences and some of the things others have been thru. This whole thing is kind of scary. I'm glad you popped in. It was getting kinda lonely around here.

 
Old 12-21-2008, 08:14 PM   #5
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Re: Pulmonary Hypertension

I can saw wow too! Those are some interesting tidbits of information. First off, did you know that some studies show that as many as 65% of people who are hyperthyroid develop some degree of ph? You'll also find that thyroid disorders often are the cause of anxiety disorders. You outta wander over to the thyroid board and check it out. That's where I usually hang out. There's a great bunch of people over there. I think you may find some stuff in common with a lot of them. But then again, with 6 kids, I can understand some of the anxiety. I don't have any kids. However, another thing we have in common. My hubby's 15yrs my senior. We've been married for 27yrs.

We moved to the hills of tn about 21yrs ago. A lot of it had to do with my health. Just couldn't keep up with the pace. We really love it here. I now own my own small computer repair shop and the hubby helps me out some and likes to tinker down in his garage. I started back to college this last fall and am really enjoying it.

I've got a really rare form of hyperthyroidism. I've had it all my life but it wasn't til last year that it was properly diagnosed. It's kinda taken it's toll. I've been frustrated with the medical profession for years. Sometimes I get so frustrated I could scream. I've known exactly what was wrong with my thyroid for the last 15yrs but it took that long to find a doctor who would listen and do something about it. I'm just a lowly patient. How could I possibly know what's wrong with me??? But that's enough ranting. I don't need to start on that tonight.

I know what you mean about that feeling of unwell. I've been having a lot of trouble putting my finger on it. My doc keeps fixing things and sure I feel better in some ways but there's still something that just ain't right. I've lost my spunk. The will's still there, the body just won't cooperate. I can't seem to do anything physical anymore and that just ain't me.

You'll read negative effects about any drugs. Sometimes docs get it wrong but most of the times it's a matter of whether the benefits outweigh the risks. I really don't think you're going to find your answer there. I think the thyroid disorder may have more to do with it. Try putting thyroid and pulmonary hypertension in the same search string and see what you come up with. I think you'll be amazed.

I have nerve damage from the diabetes. It affects my feet some. The edema just makes it worse. Right now, I wish they felt even number. I had 4 toenails cut out about 2 weeks ago. That got my attention. Them's hurts. I sure hope you find a reason for your feet thingy though. I wonder if it might be part of it??? The thing I like about these boards is sometimes someone will chime in and say "oh yeah, me too". You can pick up a lot of info from other patients that doctors don't seem to know a thing about.

The idea of a heart cath makes me nervous too. Just the thought of it gives me the willys. Do me a favor and tell me what a piece of cake it is when you're done. When is it?

Right now, no, I don't really have any support. My family doesn't know about it. They never seem to ask anymore. It's one of the pitfalls of having a chronic illness. I'm used to it though. Kind of.

But anyhow, it's good talking to you. I too like knowledge. You often won't catch me smiling either. I like to look for the humor in life.

laters.........................

 
Old 12-21-2008, 08:47 PM   #6
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Re: Pulmonary Hypertension

Quote:
Originally Posted by accessn12 View Post
I can saw wow too! Those are some interesting tidbits of information. First off, did you know that some studies show that as many as 65% of people who are hyperthyroid develop some degree of ph? You'll also find that thyroid disorders often are the cause of anxiety disorders. You outta wander over to the thyroid board and check it out. That's where I usually hang out. There's a great bunch of people over there. I think you may find some stuff in common with a lot of them. But then again, with 6 kids, I can understand some of the anxiety. I don't have any kids. However, another thing we have in common. My hubby's 15yrs my senior. We've been married for 27yrs.

We moved to the hills of tn about 21yrs ago. A lot of it had to do with my health. Just couldn't keep up with the pace. We really love it here. I now own my own small computer repair shop and the hubby helps me out some and likes to tinker down in his garage. I started back to college this last fall and am really enjoying it.

I've got a really rare form of hyperthyroidism. I've had it all my life but it wasn't til last year that it was properly diagnosed. It's kinda taken it's toll. I've been frustrated with the medical profession for years. Sometimes I get so frustrated I could scream. I've known exactly what was wrong with my thyroid for the last 15yrs but it took that long to find a doctor who would listen and do something about it. I'm just a lowly patient. How could I possibly know what's wrong with me??? But that's enough ranting. I don't need to start on that tonight.

I know what you mean about that feeling of unwell. I've been having a lot of trouble putting my finger on it. My doc keeps fixing things and sure I feel better in some ways but there's still something that just ain't right. I've lost my spunk. The will's still there, the body just won't cooperate. I can't seem to do anything physical anymore and that just ain't me.

You'll read negative effects about any drugs. Sometimes docs get it wrong but most of the times it's a matter of whether the benefits outweigh the risks. I really don't think you're going to find your answer there. I think the thyroid disorder may have more to do with it. Try putting thyroid and pulmonary hypertension in the same search string and see what you come up with. I think you'll be amazed.

I have nerve damage from the diabetes. It affects my feet some. The edema just makes it worse. Right now, I wish they felt even number. I had 4 toenails cut out about 2 weeks ago. That got my attention. Them's hurts. I sure hope you find a reason for your feet thingy though. I wonder if it might be part of it??? The thing I like about these boards is sometimes someone will chime in and say "oh yeah, me too". You can pick up a lot of info from other patients that doctors don't seem to know a thing about.

The idea of a heart cath makes me nervous too. Just the thought of it gives me the willys. Do me a favor and tell me what a piece of cake it is when you're done. When is it?

Right now, no, I don't really have any support. My family doesn't know about it. They never seem to ask anymore. It's one of the pitfalls of having a chronic illness. I'm used to it though. Kind of.

But anyhow, it's good talking to you. I too like knowledge. You often won't catch me smiling either. I like to look for the humor in life.

laters.........................

 
Old 12-21-2008, 09:17 PM   #7
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Re: Pulmonary Hypertension

Thanks for the informatoin on relationship with thyroid to PH. I really never considered it and even my pulmonary specialist did not mention it. I will check out the thyroid area as you suggested. You mentioned you moved to hills of TN. Do you mean West Virginia? My daugher and family moved to the Welch WV area this past spring. She property manages a senior subsidized high rise in Welch WV.

I will let you know how the heart catherization goes. It is scheduled for January 8. One of my sisters says she had one due to the fact they thought she had a mild heart attach, but it showed that it did not occur. I thought it was fairly simple done in a doctors office; I have not recieved the insructions yet. She says it is done at the hospital heart center and if they find something that need to be taken care of surgecially they take care of it right then or if you have a medical emergency during the proceedure you are already at the hospital. She kind of scared me a bit. She can be a bit harse that way. She laughed at me for thinking it was a doctor's office proceedure.

You seem so nice and down to earth. Its great to have someone to talk to this way. I have spent most of my life just raising those kids. I had to work really hard because my husband never made much money so I had to work full time while raising them and he was never much help around the house as well. He's a good man and has always been true to me and the family just not very sensitive towards the needs of others. I have not had much time to develop friendships with other women either. The family is over every Sunday with the grandkids for dinner after church plus many times during the week. One of my daugters (recently divorced) just moved in with her two boys age 5 & 6. I just have to go in my room sometimes to get some quiet time.

Maybe my heavy feet have something to do with all of this. I really did not think about that. I do not have diabetes. I understand you disease though because I raised two daughter from the time they were babies with type 1 diabetes. It was not easy. They both are doing ok now and have children. Its never easy though. Because of their diets I have always taken on the same and felt I kept myself quiet fit. I use to exercise a lot, but lately feel too tired, but I keep loosing weight. People says I look very thin and frail; makes me feel old. Its neat that we have the older husband thing in common. I met and married mine when I was 21. He was a really hard worker back then but has had some discouragments in life that has turned him a bitter and angry in many ways. I try to put the past behind me and look toward the brighter things in life. I have my bad days too, but try to thank God for what we have and enjoy each day best I can. I wish I could slow my life down a bit; working three jobs is taking its toll on me, but we have to pay things down before we can lighten up. Hopefully one days the kids will start doing better and paying us back some of the money we have loaned them. Ah, such is life. They are worth it and show their love and appreciation. Sounds like you are enjoying your store and going back to school. I take one class (at this point) a semester at our community college. I have two left before my associates degree. I hope I have the energy to finish. It would be easier if I did not a have to work too. Do you sell and repair computers? That is quiet a lot to know. My son has a degree (BS in Computer Science). He has taught me quiet a bit, but some of what he says and does is like a foreign language.

Take care. Thanks for your support. Some how I do not feel so all alone. Blessing to you!

 
Old 12-22-2008, 05:56 AM   #8
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Re: Pulmonary Hypertension

You're welcome. If ever you need to find a relationship between a particular disorder and the thyroid, I can find it. Darned things are wicked little creatures that can wreak a lot of havoc. It's a shame more doctors don't know about them. I was really amazed when I saw that figure. I'm not surprised your pulmonologist didn't put two and two together. Most of the literature only seems to casually mention it. You have to dig deeper to find more info. I think it's going to be really important that you keep your thyroid hormones optimized during treatment because if you aren't careful, they could turn around and bite you.

There's actually a state of TN. Actually where we live isn't that far from WV. There's a small sliver of VA between us and them. If we went to the top of the ridge behind the house, me might could spit into VA it's that close. It's lovely country around here. Your daughter's a lucky girl. We picked this area cause the economy's so poor. It was a place we could survive on my husband's military retirement check. It's a very isolated spot. Not many people or amenities. We only have one doctor here. He's a good one though. Born and raised here, went off to school and then came back to help the people. I've only been seeing him a little over 2yrs but he's done more for me than all the previous ones put together. He also doesn't get offended that I know things. It always annoys me when a doc won't listen to what a patient has to say and I get even more irritated when they do something stupid that screws me up.

You've just gotta love sisters. I bet she can't remember how nervous she was before hers. But in a way that's good. Must mean it ain't that bad. I know a lot of people have them. I just don't know if I know someone who's had one. Now one of the other reasons they do em in hospitals is cause it requires special equipment. That equipment costs an arm and a leg and isn't something they can swing at a doc's office.

I love these boards. They keep me sane. Well, sorta. I'm sure there's some around here that would debate that issue. But I do love to talk. The funny thing is, in person, I'm known as "the quiet one". I married a true man too. Vietnam vet who continues his battles with PTSD. Not full blown crazy type but it's something that has taken a chunk of him. He goes into a pretty deep depression when he's under a lot of stress. He's a terribly good man though, does help a lot around the house and is the best friend I've ever had. As mentioned, I don't have kids. I have 3 sisters spread across the country. The folks have a place here and I watch after them a good deal of the time. They also have a place in florida near one of my sisters. They just left to go down there for a while last week. My mom had a major stroke about a year ago and it's been a real challenge getting her up and going again. My best friend, who I used to share everything with, died a couple years back of cancer. Sometimes I get lonely too but I've found some really good friends on these boards that are always there when I need to talk.

If your oxygen levels go low, it wouldn't surprise me that you'd feel it in your feet. It would make sense to me that it would be like when a person gets cold or something. Everything is pulled from the extremities to keep the major organ systems going. I'll see what I can find on heavy feet and ph. There might be something to it. You'll have to excuse me, I'm a compulsive researcher.

I was diagnosed with diabetes about a year ago. Antibody negative type 1. Not something I ever thought I'd have to deal with. That must have been quite a challenge with the 2 kids. You must have done an amazing job at it too. I was really active. Whatever's going on is really kicking my butt. I'll go to do something and it's like "where's the air?". I kept blaming it on all the other stuff but that's pretty much fixed now. When the gp said ph at this last appt, it kinda floored me. I was going to ask about it but he brought it up first. Never a good sign when they're actually thinking faster than you are. I need to watch out for him. He's a swifty.

How old are you? I'm 49, looking at 50. I met the hubby when I was 19 and we got married when I was 22. He was still in the military when we got married but I only had to deal with that for a couple years before he retired. At least we got medical insurance out of it. I don't know what we'd do without that. In a lot of ways I consider myself lucky. I've got a pretty flexible life and can fit my illnesses in around it most of the time. I just repair computers. When you sell one, you have to warranty it. What are you getting your degree in? I'm going back for a medical assistant's degree. I figured if I couldn't beat them, I'd join them. Actually I'm looking at becoming a patient advocate so I can stomp all over them. Figured having some kind of medical degree would give me more leverage and clout to work with.

You'll never be alone around here. Stick around. I think you'll like it.

Helen

 
Old 12-22-2008, 01:13 PM   #9
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Re: Pulmonary Hypertension

Quote:
Originally Posted by accessn12 View Post
You're welcome. If ever you need to find a relationship between a particular disorder and the thyroid, I can find it. Darned things are wicked little creatures that can wreak a lot of havoc. It's a shame more doctors don't know about them. I was really amazed when I saw that figure. I'm not surprised your pulmonologist didn't put two and two together. Most of the literature only seems to casually mention it. You have to dig deeper to find more info. I think it's going to be really important that you keep your thyroid hormones optimized during treatment because if you aren't careful, they could turn around and bite you.

There's actually a state of TN. Actually where we live isn't that far from WV. There's a small sliver of VA between us and them. If we went to the top of the ridge behind the house, me might could spit into VA it's that close. It's lovely country around here. Your daughter's a lucky girl. We picked this area cause the economy's so poor. It was a place we could survive on my husband's military retirement check. It's a very isolated spot. Not many people or amenities. We only have one doctor here. He's a good one though. Born and raised here, went off to school and then came back to help the people. I've only been seeing him a little over 2yrs but he's done more for me than all the previous ones put together. He also doesn't get offended that I know things. It always annoys me when a doc won't listen to what a patient has to say and I get even more irritated when they do something stupid that screws me up.

You've just gotta love sisters. I bet she can't remember how nervous she was before hers. But in a way that's good. Must mean it ain't that bad. I know a lot of people have them. I just don't know if I know someone who's had one. Now one of the other reasons they do em in hospitals is cause it requires special equipment. That equipment costs an arm and a leg and isn't something they can swing at a doc's office.

I love these boards. They keep me sane. Well, sorta. I'm sure there's some around here that would debate that issue. But I do love to talk. The funny thing is, in person, I'm known as "the quiet one". I married a true man too. Vietnam vet who continues his battles with PTSD. Not full blown crazy type but it's something that has taken a chunk of him. He goes into a pretty deep depression when he's under a lot of stress. He's a terribly good man though, does help a lot around the house and is the best friend I've ever had. As mentioned, I don't have kids. I have 3 sisters spread across the country. The folks have a place here and I watch after them a good deal of the time. They also have a place in florida near one of my sisters. They just left to go down there for a while last week. My mom had a major stroke about a year ago and it's been a real challenge getting her up and going again. My best friend, who I used to share everything with, died a couple years back of cancer. Sometimes I get lonely too but I've found some really good friends on these boards that are always there when I need to talk.

If your oxygen levels go low, it wouldn't surprise me that you'd feel it in your feet. It would make sense to me that it would be like when a person gets cold or something. Everything is pulled from the extremities to keep the major organ systems going. I'll see what I can find on heavy feet and ph. There might be something to it. You'll have to excuse me, I'm a compulsive researcher.

I was diagnosed with diabetes about a year ago. Antibody negative type 1. Not something I ever thought I'd have to deal with. That must have been quite a challenge with the 2 kids. You must have done an amazing job at it too. I was really active. Whatever's going on is really kicking my butt. I'll go to do something and it's like "where's the air?". I kept blaming it on all the other stuff but that's pretty much fixed now. When the gp said ph at this last appt, it kinda floored me. I was going to ask about it but he brought it up first. Never a good sign when they're actually thinking faster than you are. I need to watch out for him. He's a swifty.

How old are you? I'm 49, looking at 50. I met the hubby when I was 19 and we got married when I was 22. He was still in the military when we got married but I only had to deal with that for a couple years before he retired. At least we got medical insurance out of it. I don't know what we'd do without that. In a lot of ways I consider myself lucky. I've got a pretty flexible life and can fit my illnesses in around it most of the time. I just repair computers. When you sell one, you have to warranty it. What are you getting your degree in? I'm going back for a medical assistant's degree. I figured if I couldn't beat them, I'd join them. Actually I'm looking at becoming a patient advocate so I can stomp all over them. Figured having some kind of medical degree would give me more leverage and clout to work with.

You'll never be alone around here. Stick around. I think you'll like it.

Helen

 
Old 12-26-2008, 05:29 AM   #10
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Re: Pulmonary Hypertension

I got a copy of the echo report the other day and it confirms it. I guess I finally have my reason for the edema.

So how are you doing? Did you have a good christmas? Earlier on you mentioned you're scheduled for a sleep study. When are you going to have that?

I'm trying to decide what my next step will be. I've had a horrid time with specialists lately. A few of them have been downright dangerous. Not many good ones want to practice in depressed rural areas and the few that do won't touch the low rates that my insurance pays. I went out of network to see a competent specialist for my thyroid after going thru 4 duds. I was able to afford two visits.

And here I am. Just found out I have a pretty serious disorder and I'm more worried about how to pay for it than the illness itself. Now that don't seem fair, does it?

 
Old 12-26-2008, 10:38 AM   #11
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Re: Pulmonary Hypertension

Hi Helen,

I am happy for you that you finally have a confirmed diagnosis; just to have an answer a health question related to some serious symptoms I am sure makes one feel better in some way. My Dad always felt bad (until the day he died) about never having a diagnosis for his health issues. It is such a shame in a country like ours that one should have to worry about how to pay for good health care. You mentioned that your husband was retired military. Are you also retired military? Just wondered because of your name "Senior Veteran." Is your diagnosis Pulmonary Hypertension? If so, is there any treatment that might help in the reduction of symptoms or possible reversal of? I suppose that is where the money and good specialists might be involved. It is scary; I have good insurance as long as I keep working, but if I were to have health issues big enough to stop me from working I am not sure what would happen. My sleep study is scheduled for January 15. The day before my birthday. I go in at 9:30 p.m. and spend the night. They say that a sleeping issue can cause many health issues. I have always sleep with my head raised and my mouth open.

I did have a nice Christmas. There is always a lot of work and expense put into it due to our large family, but to have every over and watch the grand kids open their gifts and play is worth it and then some. I should taper off but I love doing for them. I am taking it easy today. I slept in and will be going to the movies this afternoon to watch "The Curious Case of Benjamin Buttons" with my three daughters. We have watched some trailers on the net and it really looks like a good movie one can get lost in for an hour or so. I find something like this to be a real stress reliever. I do believe that stress does makes real symptoms feel worse. I know you said you do not have kids, but did you and your husband and extended family have a nice Christmas? I am sorry you lost your friend as you told me a few messages ago. It must be very hard to have such a good friendship and then loose her. I am not sure how you feel about God and the after life, but I really believe we all shall see each other again someday. We lost our daughter (my step daughter) about four years ago in a car accident. That same year we lost both my parents and my husband's mom. His dad had died 10 years before that, so we are the hierachy in our family. It's a strange feeling not to have anyone older and to loose a daugher. We are doing fine with accepting all that now, but it was a difficult time. Have you read the poem "PARRABLE OF THE BIRDS." I sent that to everyone on my list. Google it when you have a chance and read it a couple times. Hope you were at least able to spend time talking with family members on Christmas. I have one son who lives in Germany that we talked to via phone. My step grandson lives in Tokyo, Japan and he called today.

I really hope you are able to find some good medical help. Have you watched the program "The Doctors?" You can go to their website and ask questions and possibiliy get some help or insight from them. It may take awhile, but anything is worth a try. You are such a good writer that maybe they might take notice. Take care; have a happy new year. Continue on.......

Joyce

 
Old 12-26-2008, 03:25 PM   #12
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: greasy rock, tn
Posts: 3,340
accessn12 HB Useraccessn12 HB Useraccessn12 HB User
Re: Pulmonary Hypertension

Hello Joyce,

I do agree that it helps to know the why. I'm kinda having trouble dealing with the how many whys right now. I ran out of room on my medic alert tag over a year ago. It's getting kinda ridiculous.

Senior veteran refers to how much I run my mouth. You get a point for every time you post and get to move up the ranks. Keep working at it, you'll get there too! Yeah, hubby's a retired Marine. We get health insurance thru that but are financially forced to use a managed care plan. It contracts with the docs who are willing to accept it's pitifully low reimbursements. From what I've seen, that seems to be mostly the ones who can't get patients any other way. However, I did luck out and have a very good primary, all tests and medicines are covered and hospitalization can be had at $11/day. The other advantage I have is that as long as I never divorce or remarry, I will continue to have the insurance. I'm mostly griping about the managed care system and how difficult it makes it to get good care. A person's options are so limited. Since you have PH, you do have a small safety net because if you did stop working because of it, you would be able to collect disability and have health coverage. The coverage is about the same as what I get but with less cost. I don't think that will be the case though if you get good treatment now. I don't plan on stopping work. I think having something that keeps you going is important.

PH is the diagnosis I will receive. The pressure is up and there's changes with the heart that are consistent with it. It's pretty clear cut. From what I've been reading, for me, Revatio would be the drug of choice right now along with some supplemental oxygen. There's lots of new treatments available now that greatly improve symptoms. Some can even make it better but so far, there is no medicine that can cure it. I'd sorta consider it a controllable chronic condition as long as it's aggressively treated.

It might be good if your sleep study shows something. Having any kind of sleep problem can either cause or make PH worse. Your doctor seems to be doing things by the book. I stopped sleeping quietly after the edema started. Every time I blimp out, the hubby spends half the night poking me to get me to stop snoring. He says I sometimes scare him when I start gasping for air. I'll probably have to do something about that. It's strange how it only happens when I'm waterlogged though. That makes me think it's a result and not a cause.

We had a really quiet christmas. Very stress free. Just me and the hubby. Not even a phone call from any of the family but they've all got a lot going on and all kinds of places to go and people to see. I kinda like the quiet lifestyle.

It seems like you've been thru an awful lot. It does feel so much better when you finally come to term with things. I'm glad you've found your peace with it. I've found my peace with mine. Now those sound like duty stations. Are your boys in the military?

I'm working on my list. I guess me and my gp will have a bit to talk about. I was taking a nap and missed a phone call from them today. I called back but the person who had phone duty was gone for the day. Tuff luck. Anyhow, I was told she would call again on monday. There's a couple good sites out there. I've done that in the past regarding other things. My gp doesn't mind when I do it but I've had a few specialists really get their back up when I've plopped something down that contradicts what they say. You should hear what some of them mutter under their breaths about the internet. That's usually when I get up and leave and never go back. I'm going to have to start being careful though cause I'm running out of doctors. The PA at my primary's office said I'm too quick to burn my bridges. I told him he's not the one who's sick.

Hey, thanks for being there.

Helen

 
Old 12-26-2008, 07:25 PM   #13
Junior Member
(female)
 
Join Date: Dec 2008
Location: Michigan
Posts: 36
familygal HB User
Re: Pulmonary Hypertension

Quote:
Originally Posted by accessn12 View Post
Hello Joyce,

I do agree that it helps to know the why. I'm kinda having trouble dealing with the how many whys right now. I ran out of room on my medic alert tag over a year ago. It's getting kinda ridiculous.

Senior veteran refers to how much I run my mouth. You get a point for every time you post and get to move up the ranks. Keep working at it, you'll get there too! Yeah, hubby's a retired Marine. We get health insurance thru that but are financially forced to use a managed care plan. It contracts with the docs who are willing to accept it's pitifully low reimbursements. From what I've seen, that seems to be mostly the ones who can't get patients any other way. However, I did luck out and have a very good primary, all tests and medicines are covered and hospitalization can be had at $11/day. The other advantage I have is that as long as I never divorce or remarry, I will continue to have the insurance. I'm mostly griping about the managed care system and how difficult it makes it to get good care. A person's options are so limited. Since you have PH, you do have a small safety net because if you did stop working because of it, you would be able to collect disability and have health coverage. The coverage is about the same as what I get but with less cost. I don't think that will be the case though if you get good treatment now. I don't plan on stopping work. I think having something that keeps you going is important.

PH is the diagnosis I will receive. The pressure is up and there's changes with the heart that are consistent with it. It's pretty clear cut. From what I've been reading, for me, Revatio would be the drug of choice right now along with some supplemental oxygen. There's lots of new treatments available now that greatly improve symptoms. Some can even make it better but so far, there is no medicine that can cure it. I'd sorta consider it a controllable chronic condition as long as it's aggressively treated.

It might be good if your sleep study shows something. Having any kind of sleep problem can either cause or make PH worse. Your doctor seems to be doing things by the book. I stopped sleeping quietly after the edema started. Every time I blimp out, the hubby spends half the night poking me to get me to stop snoring. He says I sometimes scare him when I start gasping for air. I'll probably have to do something about that. It's strange how it only happens when I'm waterlogged though. That makes me think it's a result and not a cause.

We had a really quiet christmas. Very stress free. Just me and the hubby. Not even a phone call from any of the family but they've all got a lot going on and all kinds of places to go and people to see. I kinda like the quiet lifestyle.

It seems like you've been thru an awful lot. It does feel so much better when you finally come to term with things. I'm glad you've found your peace with it. I've found my peace with mine. Now those sound like duty stations. Are your boys in the military?

I'm working on my list. I guess me and my gp will have a bit to talk about. I was taking a nap and missed a phone call from them today. I called back but the person who had phone duty was gone for the day. Tuff luck. Anyhow, I was told she would call again on monday. There's a couple good sites out there. I've done that in the past regarding other things. My gp doesn't mind when I do it but I've had a few specialists really get their back up when I've plopped something down that contradicts what they say. You should hear what some of them mutter under their breaths about the internet. That's usually when I get up and leave and never go back. I'm going to have to start being careful though cause I'm running out of doctors. The PA at my primary's office said I'm too quick to burn my bridges. I told him he's not the one who's sick.

Hey, thanks for being there.

Helen

Hi Helen,

Back from the movies with my girls. It has been years since we all went out together - no husbands, kids - just me and my girls. It was a good movie; really got lost in it for a few hours. One really wonders why so much comes the same person(s) way. Wow, does sound like you have had more than your share. I do not wear a medical tag. I guess that is why I am having a harder time absorbing all of this happening to me when I have been the one helping others. I glad you and your hubby were able to enjoy a nice quiet Christmas together. Its quiet in our house now; just my husband and I and the two cats. My kitten - Gracie - is such a comfort. She is always there laying by one of us of following us. She likes to be whereever her people are. Hemilayins are known for that.

I understand the senior veteran thing. I have seen that in other posts now that you mention it ie junior veteran, newbe. Thanks - pulls it together for me. I think it is good for people to keep as active as possible too, whether it be working, education or whatever. I still find it somewhat confusing that they would say PH with Tricuspid Regurgitation from a Stress Echocardiogram when I do not have edema, my chest xray looked clear, pulmonary function test was normal and when the nurse did the oxygen tip on end of my finger it was normal. Just a little confused by the inconsistencies. It seems like everything I read about PH or heart includes edema. ??

My son's wife is actually in the military (Army) and he is a civilian worker. He use to be active infantry Army.They live in a small German town. I love the pics he sends. They have a beautiful little girl who plays with the German toddlers. They seem to have their own language. They seem to have good medical coverage. He stated he just got all of his teeth taken care of. That can be quite an expense. My daughter and her husband just found work in WV. Our grandson has lived in China and Japan for several years teaching English. He now lives in Tokyo and is trying to get out of teaching and into the computer sciences working with artists. He is so smart; I think he can do whatever he puts his mind to. He is the son of the step daughter who died four years ago in a car accident. She was a doctor in the foot hills of the Apalacian Mountains outside of Athens Ohio. She left behind two daughters as well. My husband was in the Army when he was young. We have an HMO, which can be kind of difficult at times. Everything and everyone you see outside your primary has to be approved. Its $20. co-pays and $1,000 for hospital. I try to make sure I am on top of all of this but you wonder when you think something has been approved and it comes back to you not paid.

Anyways, good luck with those doctors. I do not seem to be as aggressive with them as you are. Maybe I will learn to be more that way to get some answers.

Thanks for being there.

Joyce

 
Old 12-27-2008, 05:20 AM   #14
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: greasy rock, tn
Posts: 3,340
accessn12 HB Useraccessn12 HB Useraccessn12 HB User
Re: Pulmonary Hypertension

Must have been fun. We don't have any movie theaters around here. No place to eat out either. We do have 2 traffic lights though. Why, I'm not sure but they do give the place character. It might be so people can stop and roll down their windows to talk to each other. It's a friendly place.

So I take it this is your first brush with illness? That must be hard. I've been "chronically ill" since my early 20's. In a way, you almost get jaded to it. It's been a long time since I looked on it as a disability. It's just something you learn to live with and live around. I've actually had a pretty good life in spite of it. I also truly love my animals. I know what you're talking about. They can communicate in a way that no person can.

It's not really inconsistent to find PH without any of the other signs. The first indication of it is increased pressure in the pulmonary artery between the heart and the lungs and if it's taking a stress echo to make it show up, it would most likely be early stages. The other signs don't start to show up until it starts advancing and causing undo stress on the heart. When the heart stops being able to pump as efficiently, that's when the edema shows up. The earlier they find it, the better. Some of the new treatments can almost stop it in it's tracks. Hang in there long enough and medical science may come up with a cure before you even need it. But you're going to have to stay on top of it. Don't turn your back on it for a minute or it's going to bite you.

I knew there must be military somewhere. The active duty medical is pretty good. They chop it a bit after retirement. We could get free coverage if we lived near a base and used military facilities but you don't get continuity of care cause they're always transferring docs. I'd much rather stick with civilian care.

I wasn't aggressive for a very long time. I didn't get anywhere. Education and looking out for yourself are the key to getting well. The more time you waste with incompetent care, the longer you stay sick and the more time there is for complications to arise. After a while you learn to pick the keepers on the first visit. They're the ones who listen and don't say stupid things. They ask questions and don't dictate. You can tell when they're hearing what you're saying. And, they're willing to say the words "I don't know" and be willing to look it up and find out instead of blatantly brushing it off to either depression or female hormones. BTW, you're talking to the woman with the longest menopause on record. Don't tell anyone that's it's barely even started yet. Both me and the gp got a really good giggle out of that one. But in the meantime, I had waited 6 wks and traveled over 500 miles to see that clown and only because the good one who was only 60 miles away wasn't in network. It would have been cheaper for them to have paid his higher rates than my travel expenses. I still ended up having to pay for him out of pocket because they refused to change the referral. Now go figure.

So now you're beginning to see why I'm a senior veteran. I better close now or I'll never stop.

later......................

 
Old 12-27-2008, 11:21 AM   #15
Junior Member
(female)
 
Join Date: Dec 2008
Location: Michigan
Posts: 36
familygal HB User
Re: Pulmonary Hypertension

Quote:
Originally Posted by accessn12 View Post
Must have been fun. We don't have any movie theaters around here. No place to eat out either. We do have 2 traffic lights though. Why, I'm not sure but they do give the place character. It might be so people can stop and roll down their windows to talk to each other. It's a friendly place.

So I take it this is your first brush with illness? That must be hard. I've been "chronically ill" since my early 20's. In a way, you almost get jaded to it. It's been a long time since I looked on it as a disability. It's just something you learn to live with and live around. I've actually had a pretty good life in spite of it. I also truly love my animals. I know what you're talking about. They can communicate in a way that no person can.

It's not really inconsistent to find PH without any of the other signs. The first indication of it is increased pressure in the pulmonary artery between the heart and the lungs and if it's taking a stress echo to make it show up, it would most likely be early stages. The other signs don't start to show up until it starts advancing and causing undo stress on the heart. When the heart stops being able to pump as efficiently, that's when the edema shows up. The earlier they find it, the better. Some of the new treatments can almost stop it in it's tracks. Hang in there long enough and medical science may come up with a cure before you even need it. But you're going to have to stay on top of it. Don't turn your back on it for a minute or it's going to bite you.

I knew there must be military somewhere. The active duty medical is pretty good. They chop it a bit after retirement. We could get free coverage if we lived near a base and used military facilities but you don't get continuity of care cause they're always transferring docs. I'd much rather stick with civilian care.

I wasn't aggressive for a very long time. I didn't get anywhere. Education and looking out for yourself are the key to getting well. The more time you waste with incompetent care, the longer you stay sick and the more time there is for complications to arise. After a while you learn to pick the keepers on the first visit. They're the ones who listen and don't say stupid things. They ask questions and don't dictate. You can tell when they're hearing what you're saying. And, they're willing to say the words "I don't know" and be willing to look it up and find out instead of blatantly brushing it off to either depression or female hormones. BTW, you're talking to the woman with the longest menopause on record. Don't tell anyone that's it's barely even started yet. Both me and the gp got a really good giggle out of that one. But in the meantime, I had waited 6 wks and traveled over 500 miles to see that clown and only because the good one who was only 60 miles away wasn't in network. It would have been cheaper for them to have paid his higher rates than my travel expenses. I still ended up having to pay for him out of pocket because they refused to change the referral. Now go figure.

So now you're beginning to see why I'm a senior veteran. I better close now or I'll never stop.

later......................

Helen,

Yes, I see why you are a senior veteran, but more than words and quick replies you have years of experience that is very helpful to someone like myself. I might have told you before but I was pretty miserable for a time before my lower lumbar spinal fusion in 2002. I had an excellent specialist and followed all directions and recovered very well to continue to live an active life. I have some after affects ie spine discomfort (hard to explain), and the heavy feet thing (which seems to be gettin worse with time). Its irritating and frustrating more than anything and I do not consider it to be life threatening. The doctors make me feel like I am imaging it, because the nerve test come back fairly normal. Last night at the movies when I walked up the steps several times after using the ladies they got heavier and heavier as I walked up the stairs to the point when I sat down my heart was beating so fast and I felt so out of breath. I just dont think this is normal for my age. ?? but even with that I felt nothing that I felt like a chronic illness.

Yes, this type of feeling is new to me. I never once thought about my heart or lungs or any other type of chronic disease. I originally told the primary doc. that I felt short of breath (hard beating fast) with what I considered to be normal activities ie vacuuming etc. That is when Iwas sent on to the Cardiac Spec. who did the stress echo cardio. I then got the note from them saying "Noted Pumonary Hypertension with Tricuspid Regurgitation," and that would not see me again because it came in from the right side and was Pulmonary. My primary doc. did not explain it very well. I go most my info. from the net, but when I complained that I even felt that way lately when I was at rest they sent me on to the Pulmonary Spec. I ahve some of the symptoms - shortness of breath (or feels that way), kind of like a heavy hand on my chest, slight non productive cough out of nowhere, light headedness, feeling faint at times, which the specialist says is part of PH, but he felt for the vein on my neck and it was ok, and the oxygen level was ok, and no edema. He did not say anything either about the heavy feet thing. Why do I find the heavy feet thing with no explanation of so frustrating? I guess I am like my Dad that way; I just want an answer for and if I can do something to stop it. If it has anything t/d with my Dad's issues he started out with this and ended up falling and then Wheel chair etc... I walk very heavy and my feet catch on the carpet at times which causes me to almost fall, but I catch myself. I just hope no one notices. I try to cover it up well.

I guess the Heart Cath. will give me an answer to the PH and the sleep study will help with answers as well in that area. If I can get this reversed or under control or better yet given an answer for the results of the echo (poss. being wrong) that would be an answer to prayer and I will just deal with the rest as I have been. You are a great listener and advisor. God Bles you. Its amazing that you have delt with health concerns all of your adult life and seem to still have a positive attitude and reach out to others who have even less to deal with. I hope you dont think I am winney. I don't mean to be. Family just do not understand and they have so many life issues with their kids and just making it day to day that I don't burden them, but here I am burdening you. I am sorry for that. I would not blame you if this would be our last conversation. I am beginning to think I am being overly winney when I don't even has the Cath. test results yet. You have been very helpful in sorting things out and expressing myself. I hope I can be as helpful to others.

Thank you! Happy New Year!

Joyce

 
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