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Hello All,
My name is Laura, I was diagnosed in sept 1987. 5 months after i lost my Brother,Aunt and Uncle from this disease. My Uncle also had lung cancer. My brother was 31. My Aunt had went into the ER the night before and they sent her home. None were diagnosed. My Brother had to have an autopsy and that is when it was found. At that point all my 4sis's & 3 Bro's
and myself were to be checked. I am the only one with this. Odd really! I figure God knew i would take care of myself best?? My Mother also had this and we lost her sept 1 1995. She was the best!
My thickness at that time was 31mm, I had a EP study done and started on Inderal gradually working up to 120mg tid, which i am still on. I stopped lifting weights and the thickness reduced to 27. A few years later (or a bad reading) it went back to 31. In May 2000 I had AICD placed due to a study done (to which Lisa was a part of) and my Dr felt it would be a good idea. I am sorry to say that i have had Problems since then, it may have started before and i just did not pay attention, who knows. A few months after implant I started having chest pain pvc's and feeling lightheaded. I went in and had the implant readjusted and felt short of okay again.
In may the following year I was ambulanced from work with symptoms of heart attack, placed in Icu. I was going in and out of Vfib. The Pacer wire had fractured and i ended up having to wait for a week before someone that knew what they were doing could shut it off. So now i have half a device and fortunately it is the half I need more. At least until the meds start dropping my HR and I will need the pacing back. then i will think about that. In august I had another bout only worse the pain would not go away i was in for almost a week. Another Echo showing 37mm thickness 80% ejection gradient 9-10mmgh. I was also put on Verapamil 40mg and am now taking 240mg bid. I went back to Virginia Mason, they decided to turn it back on just to SEE if it was really a bad lead. I don't go there anymore.
In Febuary of last year I started having severe chest pain so bad i was put in the hospital again, this time no known idiology because nothing showed on the ekg. I wasn't to go back to work until i had rested and relaxed. I asked for 8 hour shifts, as i was doing 12s, in august the year before. I finally got them in April. My chest pain never really seemed to completely letup. I had been working with it until last month when i just could not handle it anymore, i was exhausted.
I try not to go to the ER here if i can help it even if my husband begs me, these people have no clue,"your ekg shows no changes" No Kidding.
My Left cheek is still partially numb and feels like pinpricks from the last injection. They thought they would try dilaudid!!
I did finally find THIS great website in October, I called and talked to Lisa, what a busy gal. I thank God for her. She talked with me gave me the great news that there is no Dr's on on this side of the states, I live in washington state, that was recommended. I believe that! I went to the best for me in November, Boston. Dr Maron & Dr Udelson. NEMC
I have been to many Dr's. but I have never had 3 Dr's. spend so much time with me and my husband, making sure that they answered any and all of the questions that we had. They are truly a blessing from God! The entire staff was awesome. We saw the best right from the start "a world reknown EP Dr" Dr Pandian, a wonderful spirit, A very caring man. We have never been to the east coast and only heard how rude the people were there. All of the people that we met were kind, caring and conciderate.
They upped my verapamil to the 480mg. and kept me on the Inderol 120 mgtid. I was still having very bad discomfort so we tried Isordil 10mg tid it made me very sick so we stopped it, back to very bad, Now i am trying 5mg bid of the isordil, I had been feeling great the last week,even went back to work part time. Today i do not feel so good I have had pain all day. Oxygen helps. It really sucks! I thought "oh wow this is going to work I feel so good". I even called to let Dr Maron know i was well.
I know our only option now is transplant when the time comes as that is what I was told, I just keep thinking if only i had had this site three years ago someting more could have been done at that time. I hear it should not have grown or at least as much. Was it undue stress at work, I have a very stressful job, or just what. My job has requested i give up and take disability retirement, I don't know anymore if I should be working!
My Life has this very bad thing but i also have a great life. I have a wonderful, loveing, and Awesome Husband! We met on the Internet right after my Implant. chatted for 3 months, met & now will be married one year ago this 26th of Jan. He is so caring and giveing and always there for me/us. so i guess this implant brought out the best for me in more ways then one. I also have a great son that calls me about every day. And one brat Dog name Linus.
I hope this was'nt too long.
A Big thank you to HCMA
Laura
My name is Laura, I was diagnosed in sept 1987. 5 months after i lost my Brother,Aunt and Uncle from this disease. My Uncle also had lung cancer. My brother was 31. My Aunt had went into the ER the night before and they sent her home. None were diagnosed. My Brother had to have an autopsy and that is when it was found. At that point all my 4sis's & 3 Bro's
and myself were to be checked. I am the only one with this. Odd really! I figure God knew i would take care of myself best?? My Mother also had this and we lost her sept 1 1995. She was the best!
My thickness at that time was 31mm, I had a EP study done and started on Inderal gradually working up to 120mg tid, which i am still on. I stopped lifting weights and the thickness reduced to 27. A few years later (or a bad reading) it went back to 31. In May 2000 I had AICD placed due to a study done (to which Lisa was a part of) and my Dr felt it would be a good idea. I am sorry to say that i have had Problems since then, it may have started before and i just did not pay attention, who knows. A few months after implant I started having chest pain pvc's and feeling lightheaded. I went in and had the implant readjusted and felt short of okay again.
In may the following year I was ambulanced from work with symptoms of heart attack, placed in Icu. I was going in and out of Vfib. The Pacer wire had fractured and i ended up having to wait for a week before someone that knew what they were doing could shut it off. So now i have half a device and fortunately it is the half I need more. At least until the meds start dropping my HR and I will need the pacing back. then i will think about that. In august I had another bout only worse the pain would not go away i was in for almost a week. Another Echo showing 37mm thickness 80% ejection gradient 9-10mmgh. I was also put on Verapamil 40mg and am now taking 240mg bid. I went back to Virginia Mason, they decided to turn it back on just to SEE if it was really a bad lead. I don't go there anymore.
In Febuary of last year I started having severe chest pain so bad i was put in the hospital again, this time no known idiology because nothing showed on the ekg. I wasn't to go back to work until i had rested and relaxed. I asked for 8 hour shifts, as i was doing 12s, in august the year before. I finally got them in April. My chest pain never really seemed to completely letup. I had been working with it until last month when i just could not handle it anymore, i was exhausted.
I try not to go to the ER here if i can help it even if my husband begs me, these people have no clue,"your ekg shows no changes" No Kidding.
My Left cheek is still partially numb and feels like pinpricks from the last injection. They thought they would try dilaudid!!
I did finally find THIS great website in October, I called and talked to Lisa, what a busy gal. I thank God for her. She talked with me gave me the great news that there is no Dr's on on this side of the states, I live in washington state, that was recommended. I believe that! I went to the best for me in November, Boston. Dr Maron & Dr Udelson. NEMC
I have been to many Dr's. but I have never had 3 Dr's. spend so much time with me and my husband, making sure that they answered any and all of the questions that we had. They are truly a blessing from God! The entire staff was awesome. We saw the best right from the start "a world reknown EP Dr" Dr Pandian, a wonderful spirit, A very caring man. We have never been to the east coast and only heard how rude the people were there. All of the people that we met were kind, caring and conciderate.
They upped my verapamil to the 480mg. and kept me on the Inderol 120 mgtid. I was still having very bad discomfort so we tried Isordil 10mg tid it made me very sick so we stopped it, back to very bad, Now i am trying 5mg bid of the isordil, I had been feeling great the last week,even went back to work part time. Today i do not feel so good I have had pain all day. Oxygen helps. It really sucks! I thought "oh wow this is going to work I feel so good". I even called to let Dr Maron know i was well.
I know our only option now is transplant when the time comes as that is what I was told, I just keep thinking if only i had had this site three years ago someting more could have been done at that time. I hear it should not have grown or at least as much. Was it undue stress at work, I have a very stressful job, or just what. My job has requested i give up and take disability retirement, I don't know anymore if I should be working!
My Life has this very bad thing but i also have a great life. I have a wonderful, loveing, and Awesome Husband! We met on the Internet right after my Implant. chatted for 3 months, met & now will be married one year ago this 26th of Jan. He is so caring and giveing and always there for me/us. so i guess this implant brought out the best for me in more ways then one. I also have a great son that calls me about every day. And one brat Dog name Linus.
I hope this was'nt too long.
A Big thank you to HCMA
Laura
... so much to do so little time...
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