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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
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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