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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!!!

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This is the reason I can't stay away from this site!

Bex said:
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
Great to hear Rock and welcome back :-)



Rock Hinkle said:
This is the reason I can't stay away from this site!

Bex said:
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

Hi folks, 

I reread my post tonight and feel I owe you an update on hubby's condition. Recently attended two funerals for former patients who had waited too late to come to the sleep lab, the damage had already been done.....trying not to dwell on it...but emotions get the best of me at times. But PLEASE if you have family or friends that need to go to the sleep lab...beg if you have to...but let them know how serious this can be. 

In November 2010, my husband's ejection fraction had climbed to 35! He was back to fishing, hunting, all the things he enjoyed in life. However in December I began noticing small things that did not make sense. He began dropping his coffee cup when held with his left hand, his speech was slurred a bit at times, he forgot people's names or looked confused when we would start discussing topics we had only discussed hours before. His left hand began to "draw" and stay in one position. One doctor appointment after another we described his symptoms and each doctor recommended a neurology workup. He had one, even went to physical therapy a few weeks, but nothing improved. He stopped fishing and hunting, he would spend entire days on the couch, no energy for the smallest of things. 

My father's yearly checkup showed blockage in his left carotid artery and he was scheduled for surgery. I began thinking if that perhaps was my hubby's problem too? Called his vascular surgeon and they scheduled a carotid scan in his office the day my dad was released from the hospital. A few minutes after leaving the doc's office I received a call from the surgeon's office, they stated they needed my hubby to go to the Imaging Center STAT. The doc had bumped another patient to make room for a CT scan for my husband's right carotid artery. This was on Friday. We had to wait until Monday for the results. But we were both confident if it required surgery surely he would come through it just like my 70+ year old dad had just done! 

Monday arrived and we were NOT prepared for the news. His right carotid artery is 100% blocked. No surgery, no drugs, no treatment. Believe me, we have contacted almost every vascular surgeon in the country, no one will touch him. The blockage begins at the base of his skull and is 3 inches long. The reason nothing can be done is because it's much like a kinked up water hose left out in the winter. The next spring you turn the water on and it blows, it's dry rotted....well hubby's artery is diseased, even if they were able to unblock it with surgery, he would have a stroke on the table if even one tiny piece broke off and went to his brain. This was difficult to deal with....it was more difficult to accept. This was on July 11, 2011. 

I knew he was depressed, but he seemed to be getting weaker, even our daughter noticed. One night the shortness of breath was intolerable and he asked to be taken to the ER...he never asks! We would always have to practically tie him up and toss him in the car or ambulance to get him there.....so we knew something was wrong. 

His cardiologist wanted to do a heart cath and find out what was going on.....again I expected good news - (this was August 11, 2011)...or at least a condition that could be treated by stents, etc. When his cardiologist (for the past 12 years) walked through the door I knew by the look on his face it was not good. He told our daughter and I with tears in his eyes that the second and final graft done in 1998 had collapsed and could not be stented. My brain could not register what he said so I asked him if they could do another bypass....he shook his head no, not enough healthy heart tissue. I kept asking him to PLEASE do another stent...he finally said "there is nothing else we can do and I'm so sorry". I asked him if my hubby had been told, he said yes, he was awake for the cath, he knows. 

When they brought my husband back to his room, he was groggy, and he asked me if they "had fixed him up". I realized he didn't remember what the doctor had said and he was going to have to be told again....by me. One of the hardest things I have ever had to do....to watch all hope go out of his eyes again. 

A little while later he told my daughter and I that this was not going to get him down...he was going to find a doctor somewhere that would fix the carotid artery and the graft. He would beat the odds again! 

When he was released we went to the Gill Heart Institute with all of his recent records and DVD's of the scans, etc. His cardiologist suggested the transplant list again. Hubby agreed to begin the evaluations and testing. When it was all over this was the decision given to him to make:

1. Be placed on the list, and undergo the transplant if a heart became available. This would give him 10-20 more years if all went well. 

2. However, there is a 99.9% chance you will suffer a massive stroke on the table during the transplant due to the carotid artery. Therefore, if you live through the stroke, you will have to deal with the aftermath...meaning possible paralysis, no speech, etc. 

Hubby made the decision to not be placed on the list. We are making the most of each moment, we still have hope that somewhere down the line there will be a new technique that will unclog that artery so he can be placed on the transplant list with less risk. But for now...we enjoy each day. 

It still breaks my heart to know all of this could have been avoided had he been sent to the sleep lab 18 years ago after the first heart attack. But God has a plan....he didn't make my hubby sick...but he has used it for good, to save many lives and educate many who would not have listened and gone to the sleep lab themselves. 

Please continue to pray for my hubby and for his wonderful physicians. He is on ASV therapy now and being cared for by Dr. Javaheri, a specialist known all over the world who treats CHF and OSA patients. We have truly been blessed with good doctors, a supportive family and most of all friends who care (most we haven't even met!) Thank you all...and I will keep you updated. 

strawberri@gmail.com

mthompson@sleepelite.com 

Aw Straw Berri, this is so sad and I hope and pray there is a positive answer for your brave husband.  Thinking of you, and I'll keep on with our Sleep Apnoea Campaigns over in the UK and will point people to your story.  Thanks for sharing :)

Strawberri, you and your husband are two very special people. The two of you will continue to be in my prayers. Thank you for sharing your story.

Thanks for the follow up.  I commend you husbands decision to not through the heart transpant

considering the possible outcomes.  Your family has a lot of courage.  Your in my thoughts.  I'm sure your story has helped a lot of people on the fence about CPAP.

 

 

 

 

thank you for courageously sharing your family's story.  i am deeply moved by it, and will keep your family in my thoughts and prayers.

straw berri said:

Hi folks, 

I reread my post tonight and feel I owe you an update on hubby's condition. Recently attended two funerals for former patients who had waited too late to come to the sleep lab, the damage had already been done.....trying not to dwell on it...but emotions get the best of me at times. But PLEASE if you have family or friends that need to go to the sleep lab...beg if you have to...but let them know how serious this can be. 

In November 2010, my husband's ejection fraction had climbed to 35! He was back to fishing, hunting, all the things he enjoyed in life. However in December I began noticing small things that did not make sense. He began dropping his coffee cup when held with his left hand, his speech was slurred a bit at times, he forgot people's names or looked confused when we would start discussing topics we had only discussed hours before. His left hand began to "draw" and stay in one position. One doctor appointment after another we described his symptoms and each doctor recommended a neurology workup. He had one, even went to physical therapy a few weeks, but nothing improved. He stopped fishing and hunting, he would spend entire days on the couch, no energy for the smallest of things. 

My father's yearly checkup showed blockage in his left carotid artery and he was scheduled for surgery. I began thinking if that perhaps was my hubby's problem too? Called his vascular surgeon and they scheduled a carotid scan in his office the day my dad was released from the hospital. A few minutes after leaving the doc's office I received a call from the surgeon's office, they stated they needed my hubby to go to the Imaging Center STAT. The doc had bumped another patient to make room for a CT scan for my husband's right carotid artery. This was on Friday. We had to wait until Monday for the results. But we were both confident if it required surgery surely he would come through it just like my 70+ year old dad had just done! 

Monday arrived and we were NOT prepared for the news. His right carotid artery is 100% blocked. No surgery, no drugs, no treatment. Believe me, we have contacted almost every vascular surgeon in the country, no one will touch him. The blockage begins at the base of his skull and is 3 inches long. The reason nothing can be done is because it's much like a kinked up water hose left out in the winter. The next spring you turn the water on and it blows, it's dry rotted....well hubby's artery is diseased, even if they were able to unblock it with surgery, he would have a stroke on the table if even one tiny piece broke off and went to his brain. This was difficult to deal with....it was more difficult to accept. This was on July 11, 2011. 

I knew he was depressed, but he seemed to be getting weaker, even our daughter noticed. One night the shortness of breath was intolerable and he asked to be taken to the ER...he never asks! We would always have to practically tie him up and toss him in the car or ambulance to get him there.....so we knew something was wrong. 

His cardiologist wanted to do a heart cath and find out what was going on.....again I expected good news - (this was August 11, 2011)...or at least a condition that could be treated by stents, etc. When his cardiologist (for the past 12 years) walked through the door I knew by the look on his face it was not good. He told our daughter and I with tears in his eyes that the second and final graft done in 1998 had collapsed and could not be stented. My brain could not register what he said so I asked him if they could do another bypass....he shook his head no, not enough healthy heart tissue. I kept asking him to PLEASE do another stent...he finally said "there is nothing else we can do and I'm so sorry". I asked him if my hubby had been told, he said yes, he was awake for the cath, he knows. 

When they brought my husband back to his room, he was groggy, and he asked me if they "had fixed him up". I realized he didn't remember what the doctor had said and he was going to have to be told again....by me. One of the hardest things I have ever had to do....to watch all hope go out of his eyes again. 

A little while later he told my daughter and I that this was not going to get him down...he was going to find a doctor somewhere that would fix the carotid artery and the graft. He would beat the odds again! 

When he was released we went to the Gill Heart Institute with all of his recent records and DVD's of the scans, etc. His cardiologist suggested the transplant list again. Hubby agreed to begin the evaluations and testing. When it was all over this was the decision given to him to make:

1. Be placed on the list, and undergo the transplant if a heart became available. This would give him 10-20 more years if all went well. 

2. However, there is a 99.9% chance you will suffer a massive stroke on the table during the transplant due to the carotid artery. Therefore, if you live through the stroke, you will have to deal with the aftermath...meaning possible paralysis, no speech, etc. 

Hubby made the decision to not be placed on the list. We are making the most of each moment, we still have hope that somewhere down the line there will be a new technique that will unclog that artery so he can be placed on the transplant list with less risk. But for now...we enjoy each day. 

It still breaks my heart to know all of this could have been avoided had he been sent to the sleep lab 18 years ago after the first heart attack. But God has a plan....he didn't make my hubby sick...but he has used it for good, to save many lives and educate many who would not have listened and gone to the sleep lab themselves. 

Please continue to pray for my hubby and for his wonderful physicians. He is on ASV therapy now and being cared for by Dr. Javaheri, a specialist known all over the world who treats CHF and OSA patients. We have truly been blessed with good doctors, a supportive family and most of all friends who care (most we haven't even met!) Thank you all...and I will keep you updated. 

strawberri@gmail.com

mthompson@sleepelite.com 

Thanks everyone...knowing you are keeping him in your thoughts and prayers is very encouraging!

(((Berri))) and your husband as well, of course.The two of you are in my prayers. You are both such an inspiration .....

Never tell me that God does not hear or answer our prayers!!! My hubby went back for his checkup at the Gill Heart Institute last Thursday. They called today and told us his ejection fraction has risen from 15 to the mid 20's!!!!!! Thanks everyone for thinking of him and supporting us with your prayers and thoughts!!!! Not giving up yet :)

Wonderful news - so pleased for you all :)

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