Pulmonary hypertension

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Bekcy

PPH with sarcoidosis can be treated successfully with vasodialtors. Here is one abstract- scroll downward when you get to the site, it does come in both med terminology and then in confusion english..

http://www.chestjournal.org/cgi/content/full/120/3/866

Also, I did a post earlier on PPH and sarc-- it would be in the ARCHIVES. Search by PPH or primary pulmonary hypertension. (I think)

Lung and heart-lung transplant is an option should it go that far. In the meantime-- take some slow deep breathes and get that carbon dioxide out of your lungs and get some fresh air in) yep, it's an order!!!

Love to you

TracieSee what's new at AOL.com and Make AOL Your Homepage.

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Wow, Becky, that's a bummer. This is another good example why we should get our own copies of our records. I don't have PH, but I think some others do. Hugs & prayers coming south from Indiana. Rose

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

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To: neurosarcoidosis From: macandtosh626@...Date: Thu, 20 Sep 2007 13:03:46 -0700Subject: Pulmonary hypertension

Hi All,I talked with my cardiologist today who confirmed that I do have pulmonary hypertension. My echo (April) that I was told was "OK" by his nurse was not ok at all. My RVSP (right ventricle systolic pressure) is 45 which is not a good thing. Had I not requested my echo report to take with me to my upcoming s Hopkins visit I would never had known about this. I had taken it to my pulmo who saw the high number and asked what I had been told. Right now I am in a state of shock about this since I know this is really a BAD thing with sarcoidosis. Anyone else with PH? I hope not but if you do have it please let me know what you're doing to help.Blessings,Becky

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Thank you Rose...Blessings,BeckyRose wrote: Wow, Becky, that's a bummer. This is another good example why we should get our own copies of our records. I don't have PH, but I think some others do. Hugs & prayers coming south from Indiana. Rose Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: neurosarcoidosis From: macandtosh626 (AT) yahoo (DOT) comDate: Thu, 20 Sep 2007 13:03:46 -0700Subject: Pulmonary hypertension Hi All,I talked with my cardiologist today who confirmed that I do have pulmonary hypertension. My echo (April) that I was told was "OK" by his nurse was not ok at all. My RVSP (right ventricle systolic pressure) is 45 which is not a good thing. Had I not requested my echo report to take with me to my upcoming s Hopkins visit I would never had known about this. I had taken it to my pulmo who saw the high number and asked what I had been told. Right now I am in a state of shock about this since I know this is really a BAD thing with sarcoidosis. Anyone else with PH? I hope not but if you do have it please let me know what you're doing to help.Blessings,Becky Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more. Kick back and relax with hot games and cool activities at the Messenger Café. Play now!

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Tracie,This is a great article and I really appreciate your posting it. A lot of stuff is beginning to make sense now. A couple of my doctors kept looking at my wt (my wt was not like this before 3 yrs of prednisone) and saying "lose wt and you're going to get better". I have an uncanny ability to select "skinny" marathon type physicians (when I make the appt I don't know what they look like...I know I'm in trouble when they walk in and they're athletic! Shoes are a good indicator...especially RUNNING shoes). So, I would point out that I consume 1200-1400 kcal a day. I may look like I eat whole chocolate cakes in one sitting but I don't and couldn't if I tried. Anyway, for a while a couple of my doctors couldn't get it through their heads that I was short of breath on ANY type of exertion...I haven't even been to the grocery store in 2 yrs b/c can't walk

past the front door to even get to the aisles. Doctor's appts is it for my traveling. So, I thought to myself it must be me and I could MAKE myself go further. I would have to stop several times before I reached my dept at the hospital I worked at just to catch my breath. Of course, I was embarrassed about that and hoped that no one saw me sweating like a pig (do pigs REALLY sweat?) and breathing as if I had run a marathon. Lesson here: believe in yourself...BELIEVE in what your body is telling you. And, get your hands on all your records so you can check out what is going on behind the scenes. Thank you for everything Tracie. You, , , Rose and many others have been God's gift to me. Blessings and Love,Beckytiodaat@... wrote: Bekcy PPH with sarcoidosis can be treated successfully with vasodialtors. Here is one abstract- scroll downward when you get to the site, it does come in both med terminology and then in confusion english.. http://www.chestjournal.org/cgi/content/full/120/3/866 Also, I did a post earlier on PPH and sarc-- it would be in the ARCHIVES. Search by PPH or primary pulmonary hypertension. (I think) Lung and heart-lung transplant is an option should it go that far. In the meantime-- take some slow deep breathes and get that carbon dioxide out of your lungs and get some fresh air in) yep, it's an order!!! Love to you TracieSee what's new at AOL.com and Make AOL Your Homepage.

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Hi ,I have been symptomatic (shortness of breath with exertion) for a while. Praying that this will reverse. If I were you I would be tempted to ask what my RVSP number was that made them say to you that you had PH. Blessings,Beckytopdat@... wrote: Becky, I was told when I first got sick that I had PH..but no one has paid attention to it since..Go figure.. Pulmonary hypertension Hi All,I talked with my cardiologist today who confirmed that I do have pulmonary hypertension. My echo (April) that I was told was "OK" by his nurse was not ok at all. My RVSP (right

ventricle systolic pressure) is 45 which is not a good thing. Had I not requested my echo report to take with me to my upcoming s Hopkins visit I would never had known about this. I had taken it to my pulmo who saw the high number and asked what I had been told. Right now I am in a state of shock about this since I know this is really a BAD thing with sarcoidosis. Anyone else with PH? I hope not but if you do have it please let me know what you're doing to help.Blessings,Becky Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.487 / Virus Database: 269.13.25/1018 - Release Date: 9/19/2007 3:59

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Becky,

I believe I posted on PPH earlier, in fact this was what got you directed that way?? I've lost my "Favorites" that I had tucked away- when my old computer bit the dust. So, I'm having to rebuild and re-research everything.. I know over the years, we've had a few discussions on PPH-- and that there are posts in the ARCHIVES.

I can't suggest strongly enough-- back up these articles!!! That way when we need them we can grab hold, print them out and take them to our appointments.

WE do have to be our own advocates-- and the "good" doctors will welcome the information, rather than be threatened by it.

PPH can be controlled, and since they know you are in the early stages, it's better to treat LONG_TERM-- none of this treat, take the meds away, but if they keep you on it-- you can still lead a long life.

You are so right-- it is imperative that we get our records and test reports and get them to answer the questions. This problem with a nurse reading it, seeing the bottom line stating "normal, relative, minor" issues- doesn't mean that there isn't something that if tweaked, would make us feel a whole lot better.

Hugs,

Tracie

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Tracie,I have a friend who has PH (she has schleroderma) so I might have asked about that but I had no idea I had this or was even suspicious until my pulmo recently saw my RVSP number at 45 and told me that was NOT a good thing. You ALWAYS provide excellent info and I have learned so much from you! My problem is that my PH is not in the early stages...Blessings,Beckytiodaat@... wrote: Becky, I believe I posted on PPH earlier, in fact this was

what got you directed that way?? I've lost my "Favorites" that I had tucked away- when my old computer bit the dust. So, I'm having to rebuild and re-research everything.. I know over the years, we've had a few discussions on PPH-- and that there are posts in the ARCHIVES. I can't suggest strongly enough-- back up these articles!!! That way when we need them we can grab hold, print them out and take them to our appointments. WE do have to be our own advocates-- and the "good" doctors will welcome the information, rather than be threatened by it. PPH can be controlled, and since they know you are in the early stages, it's better to treat LONG_TERM-- none of this treat, take the meds away, but if they keep you on it-- you can still lead a long life. You are so

right-- it is imperative that we get our records and test reports and get them to answer the questions. This problem with a nurse reading it, seeing the bottom line stating "normal, relative, minor" issues- doesn't mean that there isn't something that if tweaked, would make us feel a whole lot better. Hugs, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

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Hi Tracie,Had a really bad day. My pacer "paced" me out of abnormal heartbeats three times. My chest was hurting, felt short of breath, and had tachycardia with skips. Called the PDS monitor people (have a 30 day event monitor on) and they saw runs of 3 with PAC's, some PVC's, etc. You are so caring. Thank you again for what you do for all of us. s Hopkins is going to do a repeat echo on me next week and possibly a right-sided heart cath if my RVSP number is still high.Blessings,Beckytiodaat@... wrote: In a message dated 9/21/2007 4:40:56 A.M. Pacific Daylight Time, macandtosh626 (AT) yahoo (DOT) com writes: My problem is that my PH is not in the early stages... Becky, I am going to have to do some more research into this-- and see what the options are. I know that in severe cases they will consider heart/lung transplants. Personally, I don't want to go there- (mine would be lung transplant) but they actually have greater success doing both heart/lung at the same time. I know when I was in pulmonary rehab, we had a couple of men both get new lungs. One of the guys is doing great, and the other (older) one didn't make it. They can do excellent things now, so it is an idea worth

looking into if you get to that point. Still more for us to learn... Hugs, TracieSee what's new at AOL.com and Make AOL Your Homepage.

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Had a really bad day. My pacer "paced" me out of abnormal heartbeats three times. My chest was hurting, felt short of breath, and had tachycardia with skips.

Becky,

You take care of you. I can't imagine what you are going thru, this has to be so very scary for you.

I know it is so important for the 30 day monitor to get a good picture of what is going on with you, yet I want so much for you to utilize your ability to see these health issues as a sign that answers are forthcoming, and visualize your heart beating in perfect rhythm.

Our minds play such a huge part in our healing process, and you need to program yourself into health. I don't mean that to be contrite-- not at all. I know that there is a lot more than psyche playing into all that you are going thru.

I also am such a huge believer that we have the Guidance to heal, and play a big part with our self-talk in that pathway.

Know that you are in my prayers and thoughts, and that I too am seeing your heart beating in perfect rhythm.

Love to you,

TracieSee what's new at AOL.com and Make AOL Your Homepage.

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Tracie,I appreciate you so very much. Thank you my dear friend.Blessings and love always,Beckytiodaat@... wrote: In a message dated 9/24/2007 5:23:12 P.M. Pacific Daylight Time, macandtosh626 (AT) yahoo (DOT) com

writes: Had a really bad day. My pacer "paced" me out of abnormal heartbeats three times. My chest was hurting, felt short of breath, and had tachycardia with skips. Becky, You take care of you. I can't imagine what you are going thru, this has to be so very scary for you. I know it is so important for the 30 day monitor to get a good picture of what is going on with you, yet I want so much for you to utilize your ability to see these health issues as a sign that answers are forthcoming, and visualize your heart beating in perfect rhythm. Our minds play such a huge part in our healing process, and you need to program yourself into health. I don't mean that to be contrite--

not at all. I know that there is a lot more than psyche playing into all that you are going thru. I also am such a huge believer that we have the Guidance to heal, and play a big part with our self-talk in that pathway. Know that you are in my prayers and thoughts, and that I too am seeing your heart beating in perfect rhythm. Love to you, TracieSee what's new at AOL.com and Make AOL Your Homepage.

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Tracie, I love this message. Becky, I too will be seeing, and hearing, your heart beating in perfect rhythm. This is my prayer for you.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: tiodaat@...Date: Tue, 25 Sep 2007 23:45:20 -0400Subject: Re: Pulmonary hypertension

In a message dated 9/24/2007 5:23:12 P.M. Pacific Daylight Time, macandtosh626 (AT) yahoo (DOT) com writes:

Had a really bad day. My pacer "paced" me out of abnormal heartbeats three times. My chest was hurting, felt short of breath, and had tachycardia with skips.

Becky,

You take care of you. I can't imagine what you are going thru, this has to be so very scary for you.

I know it is so important for the 30 day monitor to get a good picture of what is going on with you, yet I want so much for you to utilize your ability to see these health issues as a sign that answers are forthcoming, and visualize your heart beating in perfect rhythm.

Our minds play such a huge part in our healing process, and you need to program yourself into health. I don't mean that to be contrite-- not at all. I know that there is a lot more than psyche playing into all that you are going thru.

I also am such a huge believer that we have the Guidance to heal, and play a big part with our self-talk in that pathway.

Know that you are in my prayers and thoughts, and that I too am seeing your heart beating in perfect rhythm.

Love to you,

Tracie

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Thank you Rose. Your message means a lot.Blessings and Love,BeckyRose wrote: Tracie, I love this message. Becky, I too will be seeing, and hearing, your heart beating in perfect rhythm. This is my prayer for you. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: tiodaat (AT) aol (DOT) comDate: Tue, 25 Sep 2007 23:45:20 -0400Subject: Re: Pulmonary hypertension In a message dated 9/24/2007 5:23:12 P.M. Pacific Daylight Time, macandtosh626 (AT) yahoo (DOT) com writes: Had a really bad day. My pacer "paced" me out of abnormal heartbeats three times. My chest was hurting, felt short of breath, and had tachycardia with skips. Becky, You take care of you. I can't imagine what you are going thru, this

has to be so very scary for you. I know it is so important for the 30 day monitor to get a good picture of what is going on with you, yet I want so much for you to utilize your ability to see these health issues as a sign that answers are forthcoming, and visualize your heart beating in perfect rhythm. Our minds play such a huge part in our healing process, and you need to program yourself into health. I don't mean that to be contrite-- not at all. I know that there is a lot more than psyche playing into all that you are going thru. I also am such a huge believer that we have the Guidance to heal, and play a big part with our self-talk in that pathway. Know that you are in my prayers and thoughts, and that I too am seeing your heart beating in perfect rhythm. Love to

you, Tracie See what's new at AOL.com and Make AOL Your Homepage. Connect to the next generation of MSN Messenger Get it now!

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This last month I've been being worked up for cardiac sarcoidosis. The good news is that so far-- my heart looks good. I do have to have a cardiolyte stress test the 1st week of March, and by the middle of March, we'll know if anything is hiding.

What I do have is moderate pulmonary hypertension. This is where the lungs aren't getting enough air across the tissue to make as much oxygen as I need, so what happens is that my lungs work harder to get the oxygen up the left ventrical into the heart, and that ventrical will have to thicken to hold the extra blood flow, which in turn narrows the ventricle.

This is the major ventricle in the heart and once it thickens, the chances of blood clots building up in the lungs goes way up-- and you end up with a pulmonary embolism. In simple english, you throw a blood clot in your lungs and you meet God!

All this came about because I found that on my EEG--brain wave study report, it said that i showed a possible Right Bundle Branch Block. Yep, it showed up on the leads that catch the heart beat as it goes into the brain-- amazing!

RBBB is not in itself life threatening, it is a conduction problem with how the heart beats. It isn't until you go into total heart failure that they decide it's serious-- so if you are lucky enough to have your arse pulled out of the grave during a heart attack-- it's not important.....

It looks like I will be back on the oxygen 24/7-- as that will at least help with the shortness of breath and hypoxia. Maybe I'll even get some extra energy if I stop being stubborn and pull the tank out again.

I can't stress enough how important it is to get copies of your reports, if you don't understand what they are saying, share them with us, and we'll try to help you decifer it. It is important that we don't go into panic mode-- this disease does not kill us quickly-- but knowing and understanding what is going on will make a huge difference in the quality of the years we will be here. Tweek what you can-- get the blood sugar, the weight, the cholestrol under control, and then at least you can slow the progression-- by taking away some of the issues.

HEre is a good article on sarc and PH. http://arthritis-research.com/content/9/S2/S8

Most sincerely,

Tracie

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