If you didn't know my story, you wouldn't believe it by looking at me or being around me. I sometimes forget that it happened. That is SUCH a blessing because the Lord has healed my heart. I was blessed to have my heart return to "above normal" heart function before I was discharged from the hospital. That is nothing short of the Lord. My day to day is basically like it was before SCAD. I do have to take medication in the morning and at night and periodically check my blood pressure but other than that I am pretty much the same Jessica as I was before. Actually better in my opinion.
I eat healthy (most of the time but I do have a weak spot for sweets!) and always have but have really stepped it up since I am aware of the importance of it on the heart. I work out more than I did prior to SCAD. I was blessed with not ever having to really be concerned with my weight prior to SCAD and that is even after having a child. Good genes I guess! But after SCAD I had to step up my workouts. I was originally walking/jogging 3 miles a day, 3-5 days a week but then there would be a couple weeks that I wouldn't. I recently joined Fitness Boot Camp and I work out 3 days a week for an hour. I love it! I love to feel strong and especially do after what my body has endured. I don't know but the heart attacks really lit a fire beneath me to embrace the health that I have, that I really took for granted before. I think that is probably the case for anyone that has had a health scare. Something that you once never even thought of becomes so precious to you and you want to do it simply because you can!
Wednesday, August 8, 2012
SCAD and FMD
I have seen those two acronyms more than I care to! SCAD (Spontaneous Coronary Artery Dissection) is what caused my two heart attacks. I was told that my SCAD events were because of pregnancy hormones and that a small percentage of women are affected by it. I was told that every day that passed that the hormones were returning to normal and decreasing my chances of SCAD reoccuring. I was also told that on record there were a few SCAD women that had SCADs 4 months post partum but most were within a few weeks after pregnancy like mine and that once I made it to the 6 month mark, I would be good to go.
After the 6 months passed, I breathed a sigh of relief. I had made it! I was then left with the possibility that scar tissue could block my stents but that this usually occurs by 12 months. Scar tissue can always grow to block the stent but over time it becomes less of a possiblity. Always a possiblity but not a major concern. Since I do have stents, I am at a slightly increased risk for having a "normal" heart attack caused by plaque build up. This is the type of heart attack that we are all most familar with. The kind that is caused by plaque breaking free and clogging an artery. The plaque can be caused from cholestrol, smoking and other environmental things. I knew that I was doing everything in my power to prevent that (exercising, eating healthy with very little cholestrol and taking my statins) so I just remained in prayer over my body and had come to a place of acceptance with SCAD and just felt like I had to go above and beyond to keep my body healthy to prevent future heart disease.
This place of "okayness" was changed a few weeks back. I was sitting with my husband and girls at a restaurant at the beach and I happened to pull up my Facebook page and saw yet another SCAD sister report that she had been diagnosed with FMD. What in the world?!?! It seemed like everyone that went to the Mayo clinic to see Dr. Hayes was being diagnosed with FMD (Fibromuscular Dysplasia). I began to research FMD and could not believe what I was reading. Everything that I had been told about how rare SCAD was and that I had a better chance of getting struck by lightening twice than having SCAD again was possibly not true. I remember feeling like I had been hit by a truck. I kept it in and did not say anything to my husband because I just wanted to process this "horrible" news. I could not get it off my mind, I researched for several hours and the next morning, I just broke down which is something that I do very rarely. My sweet husband asked if I was okay and he received the response that he almost never gets, "No". I wasn't okay. My biggest fear was that I had passed this on to my girls. It ate me up. I cried and cried and cried. My husband comforted me and I prayed all day about it and slowly I became peaceful again. Its tough to receive bad news but especially to learn that your rare heart episode was possibly caused by yet another rare disease is super tough. I bet you will never guess what I found?!?! A Facebook support page for FMD! I asked to join and let them know that I had not been diagnosed but was waiting on a referral from my cardiologist but had so many questions about this rare disorder. They welcomed me with open arms and made me feel so much better! In fact, I think I scared some of them because I had already had two heart attacks where they are just now finding out that FMD may not only affect the Renal, Carotid and Iiliac arteries. It has been a blessing to be a part of this group as well. To see their posts and to learn more about the disease has helped calm my mind. The best thing about it is to see that they still have normal lives. I am still waiting on my referral from my cardiologist but his sweet secretary is working hard on my behalf. I hope to have that appointment set up soon so that I can have the tests ran. I intially thought that I didn't want to know if I had it because it may make me worry but then I saw several women on the FMD page that have to be screened annually for brain aneurysms so I decided it was quite important to be diagnosed if I do have it! Thankfully the treatment for FMD is what I am already taking for SCAD, good ol "Granny pills" as I call them! I laugh becuase when i go to my pharmacy they pull my prescriptions out because I guarantee that I am the only 31 year old with blood pressure medicine, blood thinner and cholestoral meds!
http://www.theheart.org/article/1363329.do
After the 6 months passed, I breathed a sigh of relief. I had made it! I was then left with the possibility that scar tissue could block my stents but that this usually occurs by 12 months. Scar tissue can always grow to block the stent but over time it becomes less of a possiblity. Always a possiblity but not a major concern. Since I do have stents, I am at a slightly increased risk for having a "normal" heart attack caused by plaque build up. This is the type of heart attack that we are all most familar with. The kind that is caused by plaque breaking free and clogging an artery. The plaque can be caused from cholestrol, smoking and other environmental things. I knew that I was doing everything in my power to prevent that (exercising, eating healthy with very little cholestrol and taking my statins) so I just remained in prayer over my body and had come to a place of acceptance with SCAD and just felt like I had to go above and beyond to keep my body healthy to prevent future heart disease.
This place of "okayness" was changed a few weeks back. I was sitting with my husband and girls at a restaurant at the beach and I happened to pull up my Facebook page and saw yet another SCAD sister report that she had been diagnosed with FMD. What in the world?!?! It seemed like everyone that went to the Mayo clinic to see Dr. Hayes was being diagnosed with FMD (Fibromuscular Dysplasia). I began to research FMD and could not believe what I was reading. Everything that I had been told about how rare SCAD was and that I had a better chance of getting struck by lightening twice than having SCAD again was possibly not true. I remember feeling like I had been hit by a truck. I kept it in and did not say anything to my husband because I just wanted to process this "horrible" news. I could not get it off my mind, I researched for several hours and the next morning, I just broke down which is something that I do very rarely. My sweet husband asked if I was okay and he received the response that he almost never gets, "No". I wasn't okay. My biggest fear was that I had passed this on to my girls. It ate me up. I cried and cried and cried. My husband comforted me and I prayed all day about it and slowly I became peaceful again. Its tough to receive bad news but especially to learn that your rare heart episode was possibly caused by yet another rare disease is super tough. I bet you will never guess what I found?!?! A Facebook support page for FMD! I asked to join and let them know that I had not been diagnosed but was waiting on a referral from my cardiologist but had so many questions about this rare disorder. They welcomed me with open arms and made me feel so much better! In fact, I think I scared some of them because I had already had two heart attacks where they are just now finding out that FMD may not only affect the Renal, Carotid and Iiliac arteries. It has been a blessing to be a part of this group as well. To see their posts and to learn more about the disease has helped calm my mind. The best thing about it is to see that they still have normal lives. I am still waiting on my referral from my cardiologist but his sweet secretary is working hard on my behalf. I hope to have that appointment set up soon so that I can have the tests ran. I intially thought that I didn't want to know if I had it because it may make me worry but then I saw several women on the FMD page that have to be screened annually for brain aneurysms so I decided it was quite important to be diagnosed if I do have it! Thankfully the treatment for FMD is what I am already taking for SCAD, good ol "Granny pills" as I call them! I laugh becuase when i go to my pharmacy they pull my prescriptions out because I guarantee that I am the only 31 year old with blood pressure medicine, blood thinner and cholestoral meds!
http://www.theheart.org/article/1363329.do
I have previously mentioned that there is a Team Inspire page for SCAD but there is also a Facebook page (SCAD Survivors) that has been such a blessing to me. I can not tell you how good it felt to find other women that had survived SCAD. As I mentioned in my testimony, when I was first told I had suffered a SCAD induced heart attack, I was only given a medical journal from a few years back about a lady that had had a SCAD induced heart attack and was doing well one year later. That was it. I was being treated at St. Vincent's East in Birmingham and was told I was their first SCAD and that they may never see another one for 20 years. Talk about feeling special! I was told there was no set course of treatment and that they were going to treat me with what little information they had. I can not begin to explain how surreal that is. Most diseases have had research done and there are set courses of treatment, studies with reports on the patient's progress and people with information that will make you feel more comfortable. I, on the other hand, had doctors and nurses saying they had never even heard of it. I was later transferred to UAB and was told that I was, at most, the third person the hospital had EVER seen with SCAD. So needless to say, finding a group of women that knew EXACTLY where I had been and what I was going through was nothing short of a blessing. The group has grown tremendously since I have joined. At my last count there were over 140 members and we have about 1-2 join each week. This is sad to me because it means others have to endure something so challenging but also makes me feel good for them to have a group to join and not feel so alone as I did for a few weeks before I found the Inspire page.
I can not say enough about my SCAD sisters. They have worked with Dr. Hayes at The Mayo Clinic who is now conducting research on SCAD. Yay!!! Hopefully more information will be available with time as there has already been some very important information already released (more on that later). Social media is amazing because it has allowed us to come together to say "Hey! There are several of us that have had SCAD episodes and this needs to be researched". Praise the Lord that Dr. Hayes took it upon herself to start the research because we all would like to have more SCAD awareness because so many of us were dismissed because we were healthy and young when our SCAD events occured. Just not the "typical" heart attack patient, as I was told was the reason that I was having a heart attack for 12 hours before I was taken down to the Cath lab after my blood work came back with elevated troponin levels. I don't want that for anyone else and hopefully with more awareness that will not be the case.
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