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Strawberri's Apnea Story.
Just a little background. I have never meant Berri. She is a cyber friend just as most of you are. She has been very helpful in providing me study material for my boards. Her husbands story is very inspirational.
RN for many many years....no mention of sleep medicine in school or at the various jobs I had.
Hubby had 4 heart attacks from '94-'98, CABG in '98, went into atrial fib, cardioversion was attempted 2x's, CHF followed suit since the heart is more or less jiggling like jello instead of beating. His ejection fraction was very low when we brought him home after a 3 week stay following the CABG. For the next three years, he was admittled to the hospital for CHF on the average of 9-11 times per year. Never could get the heart back into rhythm, his blood sugars were like a roller coaster, he was in a wheelchair, had to have assistance with personal care, etc. Then came 02 therapy, and his depression grew deeper. He went from a vital truck driver, hunter, fisherman, sports fan, to a "sick old useless man" (his quote, not mine).
2001 "something" felt funny he said, he was a dusky gray color, raced to the ER, heart cath showed one of the two bypasses had occluded. No chance of further surgery, no healthy heart tissue left. This hospital eventually told us they would discharge him, and "make him comfortable". They were sending him home to die and he knew it. One of the cardiologists I hunted down offered to send him to UK in Lexington to see what the cardiologists there thought. We grabbed the bit of hope he offered.
A few days later the heart transplant surgeon and team walked in surrounding his bed. He had hope for a few minutes as they introduced themselves, then it hit bottom again. The doc told him he was on the "B" list, meaning he had one shot in a billion of getting a heart. We asked why bother? He said their job was to keep him alive until technology could catch up, maybe tomorrow would bring new drugs, or surgical techniques. Hubby took the chance they offered and told them to try ANYTHING.
After they left, one intern returned and said they were sending him to the sleep lab that night for a sleep study. Being the sleep medicine illiterate person I was back then, sat there and thought "what the heck does sleep have to do with his heart???" (yeah, right...we were in for quite the education). We filled out the questionnaire and checked YES he snored (we had our best fights in bed!), YES he quit breathing in his sleep (I would elbow him in the tummy until he turned over and stopped snoring, then shake the snot out of him when I realized he no longer was breathing). He or I would end up on the couch.
Arriving at the sleep lab the next morning, the techs knew I was an RN and raced to tell me all about the study, using terms I had no clue as to what they meant. AHI, hypopneas, etc. Some of the terms I grasped, and realized my hubby had been slowly dying while lying next to me for over 14 years. Had to find a chair and a box of tissues when that thought registered fully in my uneducated sleep medicine brain.
He was sent home on CPAP and a new cocktail of drugs. Within three months his ejection fraction was up from 15 to 17. He requested the 02 therapy be stopped.
Within 6-9 months, he was out of the wheelchair. The next appt. with the heart transplant surgeon we learned he no longer met the criteria to be on the transplant list!!!!! This was cause for celebration!! Until the doc explained his theory of my husband's illness to us....and when my eyes were fully opened, I was never the same.
He stated the drugs had helped, the cardiac rehab had helped, but in he and his team's opinion it was CPAP taking the stress off the heart that was responsible for hubby's steps back to a better quality of life.
He added the following statement directed toward me because he knows I am the type of person that apologizes when it rains, so he knew when I finally figured this out for myself I would take all the guilt and beat myself up over it for the rest of our lives:
His statement: "IF ANY of your husband's docs had caught his OSA after the first heart attack, I will go out on a limb and say he probably would have avoided the three other MI's, the CABG, and he sure would not be sitting in my office today".
I thought my heart would break right then and there...literally. I was supposed to be trained in the medical field, I was a professional!!!! But I was an ignorant professional. But instead of beating myself up, I promised myself if I ever had the opportunity to save someone from going through what my hubby has, I would grab it and never let it go.
In 2005 I was given the opportunity to be hired as the tech for a sleep lab opening up in our small community. After hearing our personal story, I was hired, because my employers recognized the passion inside put there through my hubby's illness.
Since coming off the HT list, he had a pacemaker and defibrillator inserted and ablation done to try once more to get the heart out of atrial fib...didn't work, however in November last year, his cardiologist was able to do a heart cath and inserted a small stent and opened up the occluded bypass from 2001!!!!!!!! His ejection fraction today is a whopping 25!!!!! Additionally, the part of his heart all the docs called the "dead zone", is actually growing teeny tiny blood vessals....who needs a new heart when his "original" is being so cooperative???????
Today on this nice fall day with the sun shining and the breeze blowing on his face, he is out riding our nieces (ages 6 and 10) on his 4-wheeler.... The wheelchair in the attic gathering dust....and every night when I go to work, or every support group I'm asked to speak at, I pray for the opportunity to tell someone my hubby's story, and for at least one person to hear it, act upon it, and avoid what my hubby has gone through. He's my hero and through him many lives are being saved here.
Will I ever go back to nursing? NOPE, not as long as there is such a profession as RPSGT!!! I tell the RN's when they ask why did I go "down a rung on the professional ladder", I just laugh at them and say there is no feeling on earth like watching a patient leave the lab the next morning, titrated - excited about feeling better - and ready to get on with their life!! So excuse me...............BUT I am not "down a rung on the ladder", I'm sittin' on top of the world!!!
AND WOW!!!!!! - the rush when a former patient makes contact a few months, weeks, years later and tells what sleep medicine has done for them...would not trade it for anything!!!
RN for many many years....no mention of sleep medicine in school or at the various jobs I had.
Hubby had 4 heart attacks from '94-'98, CABG in '98, went into atrial fib, cardioversion was attempted 2x's, CHF followed suit since the heart is more or less jiggling like jello instead of beating. His ejection fraction was very low when we brought him home after a 3 week stay following the CABG. For the next three years, he was admittled to the hospital for CHF on the average of 9-11 times per year. Never could get the heart back into rhythm, his blood sugars were like a roller coaster, he was in a wheelchair, had to have assistance with personal care, etc. Then came 02 therapy, and his depression grew deeper. He went from a vital truck driver, hunter, fisherman, sports fan, to a "sick old useless man" (his quote, not mine).
2001 "something" felt funny he said, he was a dusky gray color, raced to the ER, heart cath showed one of the two bypasses had occluded. No chance of further surgery, no healthy heart tissue left. This hospital eventually told us they would discharge him, and "make him comfortable". They were sending him home to die and he knew it. One of the cardiologists I hunted down offered to send him to UK in Lexington to see what the cardiologists there thought. We grabbed the bit of hope he offered.
A few days later the heart transplant surgeon and team walked in surrounding his bed. He had hope for a few minutes as they introduced themselves, then it hit bottom again. The doc told him he was on the "B" list, meaning he had one shot in a billion of getting a heart. We asked why bother? He said their job was to keep him alive until technology could catch up, maybe tomorrow would bring new drugs, or surgical techniques. Hubby took the chance they offered and told them to try ANYTHING.
After they left, one intern returned and said they were sending him to the sleep lab that night for a sleep study. Being the sleep medicine illiterate person I was back then, sat there and thought "what the heck does sleep have to do with his heart???" (yeah, right...we were in for quite the education). We filled out the questionnaire and checked YES he snored (we had our best fights in bed!), YES he quit breathing in his sleep (I would elbow him in the tummy until he turned over and stopped snoring, then shake the snot out of him when I realized he no longer was breathing). He or I would end up on the couch.
Arriving at the sleep lab the next morning, the techs knew I was an RN and raced to tell me all about the study, using terms I had no clue as to what they meant. AHI, hypopneas, etc. Some of the terms I grasped, and realized my hubby had been slowly dying while lying next to me for over 14 years. Had to find a chair and a box of tissues when that thought registered fully in my uneducated sleep medicine brain.
He was sent home on CPAP and a new cocktail of drugs. Within three months his ejection fraction was up from 15 to 17. He requested the 02 therapy be stopped.
Within 6-9 months, he was out of the wheelchair. The next appt. with the heart transplant surgeon we learned he no longer met the criteria to be on the transplant list!!!!! This was cause for celebration!! Until the doc explained his theory of my husband's illness to us....and when my eyes were fully opened, I was never the same.
He stated the drugs had helped, the cardiac rehab had helped, but in he and his team's opinion it was CPAP taking the stress off the heart that was responsible for hubby's steps back to a better quality of life.
He added the following statement directed toward me because he knows I am the type of person that apologizes when it rains, so he knew when I finally figured this out for myself I would take all the guilt and beat myself up over it for the rest of our lives:
His statement: "IF ANY of your husband's docs had caught his OSA after the first heart attack, I will go out on a limb and say he probably would have avoided the three other MI's, the CABG, and he sure would not be sitting in my office today".
I thought my heart would break right then and there...literally. I was supposed to be trained in the medical field, I was a professional!!!! But I was an ignorant professional. But instead of beating myself up, I promised myself if I ever had the opportunity to save someone from going through what my hubby has, I would grab it and never let it go.
In 2005 I was given the opportunity to be hired as the tech for a sleep lab opening up in our small community. After hearing our personal story, I was hired, because my employers recognized the passion inside put there through my hubby's illness.
Since coming off the HT list, he had a pacemaker and defibrillator inserted and ablation done to try once more to get the heart out of atrial fib...didn't work, however in November last year, his cardiologist was able to do a heart cath and inserted a small stent and opened up the occluded bypass from 2001!!!!!!!! His ejection fraction today is a whopping 25!!!!! Additionally, the part of his heart all the docs called the "dead zone", is actually growing teeny tiny blood vessals....who needs a new heart when his "original" is being so cooperative???????
Today on this nice fall day with the sun shining and the breeze blowing on his face, he is out riding our nieces (ages 6 and 10) on his 4-wheeler.... The wheelchair in the attic gathering dust....and every night when I go to work, or every support group I'm asked to speak at, I pray for the opportunity to tell someone my hubby's story, and for at least one person to hear it, act upon it, and avoid what my hubby has gone through. He's my hero and through him many lives are being saved here.
Will I ever go back to nursing? NOPE, not as long as there is such a profession as RPSGT!!! I tell the RN's when they ask why did I go "down a rung on the professional ladder", I just laugh at them and say there is no feeling on earth like watching a patient leave the lab the next morning, titrated - excited about feeling better - and ready to get on with their life!! So excuse me...............BUT I am not "down a rung on the ladder", I'm sittin' on top of the world!!!
AND WOW!!!!!! - the rush when a former patient makes contact a few months, weeks, years later and tells what sleep medicine has done for them...would not trade it for anything!!!
Views: 311
Replies to This Discussion
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Permalink Reply by sleepycarol on
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Great story Rock!!!
It people like you, her, and others on this forum that are changing the world and the lifes of those around you. You DO make a difference. I just wish we could clone you to replace those that are not so passionate about their work!!
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Permalink Reply by RockRpsgt on
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Thanks Carol, but right now i am just a small player in this game we call sleep. It is people like you, Mike, and Berri that are making the difference. The true pioneers of sleep are the ones that strive everyday to make things better for patients and practitioners. To truly make a difference we all have to work together.
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Permalink Reply by Judy on
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Oh, Rock!! What a WONDERFUL, truly inspiring, story Strawberri has allowed you to share with us! Would she give us/me permission to post this story of her husband's experience at the cpaptalk, talkaboutsleep and apneasupport forums? If only we could get every newspaper in this country to carry this story!!!! And, PLEASE, extend my heartfelt thanks to Strawberri for sharing their story.
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Permalink Reply by Mary J on
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Wow...thanks for sharing this with us. Hats off to the sleep professionals and sleep guide for helping to make a difference in lives everyday.
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Berri wants this story to be told. Post away.
Judy said:Oh, Rock!! What a WONDERFUL, truly inspiring, story Strawberri has allowed you to share with us! Would she give us/me permission to post this story of her husband's experience at the cpaptalk, talkaboutsleep and apneasupport forums? If only we could get every newspaper in this country to carry this story!!!! And, PLEASE, extend my heartfelt thanks to Strawberri for sharing their story.
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I know nuttin' about twitter. I don't "do" twitter and youtube and myface and all them thar type websites. But I do know its a good place to get a message out fast. At least I do now. Strawberri's story is on twitter. Someone from cpaptalk posted a link to it there or however that works. Had I known, sleepguide would have gotten the "plug" for Strawberri's story. I just regret that sleepguide isn't getting the credit for it. TAS and apneasupport wouldn't allow me to make reference to sleepguide and I just pasted to all three forums w/o a thought that I could have credited sleepguide at cpaptalk.com w/breaking the story first as I should have done. Oh well, the IMPORTANT thing is that the story is getting out there.
Strawberri's story has gotten a great response at cpaptalk; 48 "readings" but no comments at apneasupport which was interesting. I haven't checked TAS yet.
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Permalink Reply by straw berri on
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Thanks for posting the story Rock....and thanks to all of you for the comments. ~strawberri~
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Yep, I am with Judy on twitter (don't understand the fascination with it), facebook (seems like it would be good for stalkers and the likes to me), myspace, and others along the same line. I am still not sure what a blog is. I see the term often, but still don't understand the makings of a blog or why anyone would want one.
I think, in my opinion, the government already knows too much about our personal lives, so why broadcast anymore for them to use against us? I am not paranoid, just don't like everyone knowing everything I do.
I want to thank Straw berri for the story!!
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From Strawberri:
Had to share the news with you all!!
Hubby had an appt. with one of his cardiologists today, an echocardiogram had been done during a previous appt. Today they gave him the results.....
2001 = (before sleep medicine did it's magic) = heart transplant list ejection fraction of 13.
2002 = (after CPAP) = taken off transplant list after 9 months - EF had risen above the transplant criteria, it was 17!
2004 = Pacemaker/defib + continued CPAP therapy brought it to 19.
2005 = Ablation, now totally dependant on the pacemaker, but the ejection fraction is holding steady!
2008 - Advanced technology finally made a stent small enough to open an occluded graft that had been closed since 2001 - EF = 25%! (Placed on BIPAP instead of CPAP).
May 2010 - ASV titration done and therapy began due to complex sleep apnea.
GUESS WHAT THE EF IS TODAY????????? A WHOPPING 30-35%!!!!!!!
His right ventricle is NORMAL size.
Left ventricle is still a bit stubborn But it only has moderate to severe hypokinesis, (since 1998 it had always been severe only!)
Right artrial is NORMAL size.
Left atria is only moderately dilated.
No peicardial effusion, no pleural effusion.
Like I said...we are celebrating...crying..praising and rejoicing!!!
His cardiologist agrees, if not for sleep medicine and CPAP therapy in 2001, he would not have lived long enough for the technology/pacemaker/drugs to help him.
Without this job in sleep, in all probability he would not have been switched from CPAP to BIPAP, and we would not have known about complex sleep apnea, therefore no ASV titration.
Without our Binary friends and the topics we learn from...we would probably have lost the battle.
So we just had to share the news....Thanks to all of you for your thoughts, good wishes, prayers and support whenever he's been hospitalized or sent for another procedure....
Life is good!
Marcia
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Berri, thank you so much for sharing yet again your husband's amazing story. It is so encouraging to know that there are medical professionals out there who DO take an interest and actually care. And so discouraging to realize how difficult they can be to find.
But just knowing that they are out there, that you and your hubby were able to find the medical team you needed reminds us that we CAN help ourselves and we CAN find the right medical team for us if we just do NOT give up!!!!
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Thanks to all of YOU, we do make a difference in people's lives with what we do....RPSGT's helped save my hubby. Thank you Rock for posting the update so we could share our celebration with even more people!
Keep on truckin' folks....we have more lives to impact with our knowledge and skills! Ain't it great?????
(((hugs to everyone))
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Permalink Reply by Bex on
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Truly a beautiful story;I feel blessed to have read it, thanks!
I really appreciate all of your posts and now consider myself a CPAP supporter. All of the information that has been shared with me through this discussion has taught me the validity of the sleep centers and the life-saving effects of the CPAP therapy. My sleep apnea is very severe and what you have taught me will help me commit to the CPAP use and may just save my life. . I thank you all. Bex
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