For the last month I have been having terrible heart burn. The kind of heart burn that wakes you up in the middle of the night, forces you to drink a bottle of water and eat a couple of chalky antacids. I began to suspect the culprit may be one of my medications, considering my diet has not changed one iota and one of my dosages did.
I looked up the list of side effects of all my medications in the U.S. National Library Medicine National Institutes of Health website. Have you ever really read these things?
I found that it is possible that one of the medications I take for neuropathic pain can cause heart burn. Trouble is, I've been taking this one for nearly two years, so why now? Another could cause kidney stones. Another, swollen feet, ankles, lower legs and hands. Another, a high or elevated mood (woo hoo!). One of my other ones may cause hair to grow where hair does not usually grow. Crazy.
So later, when I was taking a shower, I was scrubbing off like I usually do and I happened to notice a long black hair growing out of my shoulder. My shoulder! I had just read about this and here I was staring at a random hair growing where hair should not grow. And I'm a brunette. Oh, I certainly plucked that thing out!
So far I have dealt with vivid dreams, insomnia, heart burn and now I am turning into a suburban werewolf. What next?
Wednesday, November 5, 2014
Tuesday, October 14, 2014
Follow up to Heart Coiling Procedure
To make a long story short, I feel a lot better. In fact, I feel better than I have in a very long time. Perfect? No. But I wasn't expecting perfection, just hoping for some relief and that is what I got. And that makes me happy.
I had my follow up appointment with the specialist last Wednesday, which served to remind me how thankful I am that I no longer have to drive downtown to the Medical District on a regular basis to seek medical treatment. I left my house at 1 o'clock in the afternoon and didn't get home until 6:30 that evening. All to see the doctor for five minutes to tell him that the procedure worked, mostly, and to be told to follow up with my regular cardiologist (who is on my side of town). I could have phoned in. Oh, well.
I'm not complaining, mind you. In fact, this time I had an easier time recovering from the catheter than the last time. I had much less bruising and less pain overall which is a win in my book. I had lingering chest pain for about a week after the procedure. I was desperately afraid that it hadn't worked. Granted the pain wasn't as bad as it had been, but it was still at a level that I didn't think I could continue to live with.
After that first week, I began to feel better. It felt like a vice had loosened on my chest. I could breathe freely, and I hadn't even realized that I had felt restricted before. It was like being able to completely fill my lungs for the first time. I have times when I have no chest pain at all. Most of the time I feel anywhere from 50-80% better than I have in the last few years.
I have no idea if is there is anything else to be done. I have been told that I can now go and lead a normal life with no restrictions, even with a bunch of coils and a patch in my heart. Well, as normal as be expected considering the very abnormal situations I have been thrown into.
And that, my friends, is finally a solution that makes the journey worth fighting for.
I had my follow up appointment with the specialist last Wednesday, which served to remind me how thankful I am that I no longer have to drive downtown to the Medical District on a regular basis to seek medical treatment. I left my house at 1 o'clock in the afternoon and didn't get home until 6:30 that evening. All to see the doctor for five minutes to tell him that the procedure worked, mostly, and to be told to follow up with my regular cardiologist (who is on my side of town). I could have phoned in. Oh, well.
I'm not complaining, mind you. In fact, this time I had an easier time recovering from the catheter than the last time. I had much less bruising and less pain overall which is a win in my book. I had lingering chest pain for about a week after the procedure. I was desperately afraid that it hadn't worked. Granted the pain wasn't as bad as it had been, but it was still at a level that I didn't think I could continue to live with.
After that first week, I began to feel better. It felt like a vice had loosened on my chest. I could breathe freely, and I hadn't even realized that I had felt restricted before. It was like being able to completely fill my lungs for the first time. I have times when I have no chest pain at all. Most of the time I feel anywhere from 50-80% better than I have in the last few years.
I have no idea if is there is anything else to be done. I have been told that I can now go and lead a normal life with no restrictions, even with a bunch of coils and a patch in my heart. Well, as normal as be expected considering the very abnormal situations I have been thrown into.
And that, my friends, is finally a solution that makes the journey worth fighting for.
Friday, October 3, 2014
Reduction in Headache Days
The current predicament I am in now is that because of my heart issues I can't take traditional migraine medicines like Imitrex, Maxalt, and Amerge because they are Triptans and constrict blood vessels. Constriction of blood vessels would be counterproductive to what my heart medication is doing, opening my blood vessels, and may cause undo harm. The last time I took a Triptan medication it caused severe chest pain and shortness of breath, so I am rather inclined to agree with this line of thinking.
That leaves me with fighting my migraines on my own. One of the things I have done before is the Migraine Elimination Diet. I did this when I was a teenager to find out what it was in my diet that was causing my migraines (for me it is MSG and sodium nitrate). When my headaches start to get out of control again, I resort back to this and I always end up feeling better.
It is nearly impossible to avoid all of these ingredients all of the time. For example, Autolyzed Yeast Extract is in nearly everything we eat and this is important because Autolyzed Yeast Extract can contain MSG (Monosodium Glutamate). Onion is another hard one to avoid because onion powder is in nearly all the foods we eat. I just read my labels and do my best. You'll find that a lot more restaurants have started posting their ingredients now, so you can go out to eat well prepared.
To do the full Migraine Elimination Diet you are supposed to eliminate all these foods from your diet for a set amount of time. I have read anywhere from two to four weeks is sufficient. Then you reintroduce each food, one at a time, every few days. If one of these ingredients or foods is a migraine trigger for you, you should know within a few hours of consumption. If not, you will feel fine.
 |
| Migraine Diet By Laura Romero |
Other than eating regularly, getting plenty of rest and exercise and staying hydrated, that might be about all you can do when you are fighting migraines at home. There are plenty of supplements out there to research and I have friends that swear by them (always talk to your doctor). I personally don't take anything my doctor doesn't recommend because I already have a full cocktail of prescription medications, being a stroke survivor and living with a heart defect. So why keep tempting Mother Nature?
I feel the need to state that this is just my personal way of dealing with my migraines. I keep my doctors fully informed of any changes in my diet and health and you should too. I am not a professional. Seek a professional opinion before going on any diet or exercise program. And good luck.
Monday, September 29, 2014
Coiling Procedure in the Heart
On Wednesday I went in to have the coiling procedure that capped off the extra veins branching off one of the coronary arteries in my heart. I literally have tiny coils of wire or some other synthetic material blocking the flow of blood to my extra bits and pieces.
The way it was explained to me is that because my blood has been diverted to fill these extra vessels, there are parts of my heart that may not have been getting the right amount of oxygenated blood. Additionally, the internal blood pressure of my heart may have been compromised due to these extra vessels. Both of these things came about once the hole in my heart was repaired back in 2010. The hole was allowing the blood to flow more freely, not affecting the pressure of these vessels. Once the hole was closed these vessels started filling up more and more because blood was diverted a different way. The right way, but a different way. So granted I was now no longer throwing clots and having strokes, but now I was having chest pain and shortness of breath.
Fast forward four years, I am now lying on an operating room gurney awaiting my fate. I figure I have a 50/50 chance of this procedure giving me any relief. I had been warned that it may not work at all. I'm listening to all the beeps and whirs of the medical devices I am hooked up to. There is a selection of uplifting classical music playing, the doctor's personal preference. I am shivering slightly because it always cold in operating rooms. But I don't know what's more uncomfortable at the moment, the sub-zero temperature or the fact that everyone will be focusing on my groin for the next hour.
And then we begin.
I get a local anesthetic so the catheter can glide through. And it does, presumably. I'm talking to the doctor and then he shifts something near my hip and I nearly jump. It hurts! Really badly. I'm explaining to him that there's a pain spreading throughout my entire hip region, hip bone to my pelvis, and he's searching for the cause. Bear in mind that I've had a local so I can feel the pressure of his hands while he's palpitating but not really tell what he's doing.
After a moment he tells me that there are no blood clots and that I'm fine. I say that my hip is killing me and I feel like something warm is running down my leg. At this time, the nurse had decided to give me something to calm me down. I let her know that I'm calm I'm just in pain and if possible I'd like to be awake during the procedure. Finally, the doctor hits something and I let out a groan. That's the spot. He tries three more times to give me a local to numb the pain. The last thing I remember is him explaining that they had hit a nerve bundle in my hip and that was causing the pain. I was crying it hurt so bad.
When I woke up, I had been cleaned up and transferred back to a hospital bed. Before we left the room I asked if I could see the coils in my heart. It would probably be the only chance I would get to see it in Hi Definition on a flat screen TV. He showed me where they had put three coils in my poor abused heart, gave me a moment, and wheeled to my room and my husband.
This time around, I was told that they clamped off the femoral artery (the groin one) instead of applying pressure like the last time so I had to lie flat for 6-7 hours instead of 4 hours. It was horrible. I had to pee like nobody's business by the time I was allowed out of bed at one in the morning. Plus I had to stay overnight because they had to tinker with my ticker. But the stay was, all in all, not that bad. They did an excellent job at managing my hip pain, which was still pretty bad for the first 24 hours. After that it was the usual bruising from the procedure.
I was even a minor celebrity on the recovery floor. Most of the nurses had never heard of the procedure I had done. Others had heard of it, but I was their first patient. My doctor, the cardiac recovery specialist, only does three coiling procedures a year. If he's busy. I was also the youngest patient at the time on the recovery floor. They were sad to see me go, but didn't want me back. In fact, I was sleeping on my couch before my kids got home from school the next day.
So what is the result? I can't really say. I think it's too early to tell. I have moments I don't even think about my chest, which is amazing. But then, all of a sudden, it hurts. That all too familiar pain comes back and I try really hard not to get too upset about it, but it's hard not to. I can feel my heart beating throughout my whole body. It's the strangest feeling. It's like it is beating so hard, just trying to escape. I'm sure it has to do with my heart healing and getting used to actually working the way it is supposed to.
I'm hoping there will come a day that I won't even think about my heart anymore. Right now, all this concentration on it is making me feel like it's less a part of my body and more a part of some mad science experiment. I've got a patch and three coils floating around in there somewhere and it kind of creeps me out. I'm half afraid that the more we mess with it the more we'll mess it up. But the other half wants to just fix it already.
I follow up next Thursday with the doc. Guess we'll know more then.
The way it was explained to me is that because my blood has been diverted to fill these extra vessels, there are parts of my heart that may not have been getting the right amount of oxygenated blood. Additionally, the internal blood pressure of my heart may have been compromised due to these extra vessels. Both of these things came about once the hole in my heart was repaired back in 2010. The hole was allowing the blood to flow more freely, not affecting the pressure of these vessels. Once the hole was closed these vessels started filling up more and more because blood was diverted a different way. The right way, but a different way. So granted I was now no longer throwing clots and having strokes, but now I was having chest pain and shortness of breath.
Fast forward four years, I am now lying on an operating room gurney awaiting my fate. I figure I have a 50/50 chance of this procedure giving me any relief. I had been warned that it may not work at all. I'm listening to all the beeps and whirs of the medical devices I am hooked up to. There is a selection of uplifting classical music playing, the doctor's personal preference. I am shivering slightly because it always cold in operating rooms. But I don't know what's more uncomfortable at the moment, the sub-zero temperature or the fact that everyone will be focusing on my groin for the next hour.
And then we begin.
I get a local anesthetic so the catheter can glide through. And it does, presumably. I'm talking to the doctor and then he shifts something near my hip and I nearly jump. It hurts! Really badly. I'm explaining to him that there's a pain spreading throughout my entire hip region, hip bone to my pelvis, and he's searching for the cause. Bear in mind that I've had a local so I can feel the pressure of his hands while he's palpitating but not really tell what he's doing.
After a moment he tells me that there are no blood clots and that I'm fine. I say that my hip is killing me and I feel like something warm is running down my leg. At this time, the nurse had decided to give me something to calm me down. I let her know that I'm calm I'm just in pain and if possible I'd like to be awake during the procedure. Finally, the doctor hits something and I let out a groan. That's the spot. He tries three more times to give me a local to numb the pain. The last thing I remember is him explaining that they had hit a nerve bundle in my hip and that was causing the pain. I was crying it hurt so bad.
When I woke up, I had been cleaned up and transferred back to a hospital bed. Before we left the room I asked if I could see the coils in my heart. It would probably be the only chance I would get to see it in Hi Definition on a flat screen TV. He showed me where they had put three coils in my poor abused heart, gave me a moment, and wheeled to my room and my husband.
This time around, I was told that they clamped off the femoral artery (the groin one) instead of applying pressure like the last time so I had to lie flat for 6-7 hours instead of 4 hours. It was horrible. I had to pee like nobody's business by the time I was allowed out of bed at one in the morning. Plus I had to stay overnight because they had to tinker with my ticker. But the stay was, all in all, not that bad. They did an excellent job at managing my hip pain, which was still pretty bad for the first 24 hours. After that it was the usual bruising from the procedure.
I was even a minor celebrity on the recovery floor. Most of the nurses had never heard of the procedure I had done. Others had heard of it, but I was their first patient. My doctor, the cardiac recovery specialist, only does three coiling procedures a year. If he's busy. I was also the youngest patient at the time on the recovery floor. They were sad to see me go, but didn't want me back. In fact, I was sleeping on my couch before my kids got home from school the next day.
So what is the result? I can't really say. I think it's too early to tell. I have moments I don't even think about my chest, which is amazing. But then, all of a sudden, it hurts. That all too familiar pain comes back and I try really hard not to get too upset about it, but it's hard not to. I can feel my heart beating throughout my whole body. It's the strangest feeling. It's like it is beating so hard, just trying to escape. I'm sure it has to do with my heart healing and getting used to actually working the way it is supposed to.
I'm hoping there will come a day that I won't even think about my heart anymore. Right now, all this concentration on it is making me feel like it's less a part of my body and more a part of some mad science experiment. I've got a patch and three coils floating around in there somewhere and it kind of creeps me out. I'm half afraid that the more we mess with it the more we'll mess it up. But the other half wants to just fix it already.
I follow up next Thursday with the doc. Guess we'll know more then.
Friday, September 19, 2014
One More Heart Procedure
It seems as though I have one more heart procedure to go through before this long journey can (possibly) come to an end. As I mentioned after I had my heart catheter done, I have some extra veins branching off a main artery in my heart that may possibly be causing the chest pain I have been experiencing over the last four years. The only way to fix that is to do another catheter and to insert little coils into these veins to cap them off.
I had the consult with the specialist yesterday. He spoke to my husband and me very candidly and while he wants to be optimistic, he also wants us to be realistic and know that this may not work. All he can do is perform the surgery and hope for the best. Yes, this can be the reason for the discomfort. Yes, it could work. Yes, I could feel better very soon. But I also need to be aware that it may do nothing at all to alleviate the pain and shortness of breath.
And then we would be back to square one. And I would be devastated.
Thinking realistically, I thought, I have nothing to lose. It took me two years to find a doctor to even listen to me and believe me in the first place when I complained about chest pain and shortness of breath. It took another two years to find what was even a possible culprit. I feel satisfied with the answers I have been given as to my "condition" because of the pain I felt when my doctor was tinkering around inside of my heart during the heart cath, particularly when he got to the spot we are currently discussing. Furthermore, I have no better answers or options given to me. None of the medications have worked. And while I certainly don't want to go through this again, I see no better way towards a more productive life.
I don't know if you're the praying type or the good vibes type, but if you find yourself with nothing better to do on Wednesday, I good use some good juju. I'm nervous and scared and hopeful, but I'm finding it hard to be optimistic after being let down so many times. Not to mention that apparently, once again, I have the privilege of having something rare wrong with me so nobody seems to know much about what the outcome is going to be. Yea me.
I had the consult with the specialist yesterday. He spoke to my husband and me very candidly and while he wants to be optimistic, he also wants us to be realistic and know that this may not work. All he can do is perform the surgery and hope for the best. Yes, this can be the reason for the discomfort. Yes, it could work. Yes, I could feel better very soon. But I also need to be aware that it may do nothing at all to alleviate the pain and shortness of breath.
And then we would be back to square one. And I would be devastated.
Thinking realistically, I thought, I have nothing to lose. It took me two years to find a doctor to even listen to me and believe me in the first place when I complained about chest pain and shortness of breath. It took another two years to find what was even a possible culprit. I feel satisfied with the answers I have been given as to my "condition" because of the pain I felt when my doctor was tinkering around inside of my heart during the heart cath, particularly when he got to the spot we are currently discussing. Furthermore, I have no better answers or options given to me. None of the medications have worked. And while I certainly don't want to go through this again, I see no better way towards a more productive life.
I don't know if you're the praying type or the good vibes type, but if you find yourself with nothing better to do on Wednesday, I good use some good juju. I'm nervous and scared and hopeful, but I'm finding it hard to be optimistic after being let down so many times. Not to mention that apparently, once again, I have the privilege of having something rare wrong with me so nobody seems to know much about what the outcome is going to be. Yea me.
Saturday, August 2, 2014
The Truth About Heart Catheters
My cardiologist had been putting off doing a heart catheter on me because of the invasive nature of the procedure. I did my research. I knew what I was in for. I've been scoped, poked and prodded for the last four years. I've been accused of making up phantom pains and told I'm just seeking attention. And now I finally have a good doctor that is listening to me but he was putting off a procedure that could potentially diagnose my problem, so you could imagine how frustrated I was. So after trying all the heart medications he could think of and all the diagnostic tools he could think of, we were left with nothing but the heart catheter.
About ten days ago I went in for the procedure. The nurses were fantastic. Everything was explained perfectly. When I was taken back to the heart cath lab, I had the option of being put under twilight anesthesia or no anesthesia at all. I chose no anesthesia. Crazy? Maybe. But I had waited so long to find out what has been causing my chest pain that I wasn't going to miss a moment of this. And seeing as how it was going to be my cardiologist performing the heart catheter, I wanted to be fully aware when he discovered what was wrong.
And in they went. The catheter tube goes in through an artery in the groin, which gets numbed up with a local. It's a very odd feeling as the catheter finds its way up through your hip and your ribs to your heart. Though your veins and arteries have no nerve endings, you can kind of feel it 'knocking' around inside of you. (Sorry Dad. If you're reading this, you may want to skip ahead a few paragraphs.) Once it was in my heart I felt a lot of pressure. Now, I don't know if that's normal or not because of the issues that I have; this is just my experience.
Once inside my heart they were able to inject dye in order to act as a contrast to see the inner workings of my heart. With the dye the cardiologist was able to check for any blockages or further heart defects (I had previously had a hole repaired). What he found was pretty cool and I became the case of the month.
Coming off my right coronary artery are a bunch of extra blood vessels that don't belong there. I was born with them, apparently, but they didn't start causing me pain until after I had the hole in my heart repaired four years ago. Me and my crazy anatomy. They were able to conclude that these little guys were the culprit by injecting the dye in them more than once and hearing me openly complain about it more than once. I'm sure it's more scientific than that, but I'm going to go with that.
What's the solution? Well, we tried a beta-blocker drug for about ten days. That didn't work to relieve the pain. Now we're trying a calcium channel blocker. I have a follow up appointment in two weeks. If that doesn't work we have two more options before possibly resorting to another heart surgery. I'll stick with the drugs, thank you very much.
Recovery from the heart catheter was not exactly what I expected. The next day I was in a lot pain. I have had a lot of surgeries and this groin pain still reduced me to a whiny baby. Thank God my husband stayed home and literally did everything for me from fetching my Tylenol to making me a sammich. He's the best.
Incidentally, today is my anniversary. Four years STROKE FREE!
About ten days ago I went in for the procedure. The nurses were fantastic. Everything was explained perfectly. When I was taken back to the heart cath lab, I had the option of being put under twilight anesthesia or no anesthesia at all. I chose no anesthesia. Crazy? Maybe. But I had waited so long to find out what has been causing my chest pain that I wasn't going to miss a moment of this. And seeing as how it was going to be my cardiologist performing the heart catheter, I wanted to be fully aware when he discovered what was wrong.
And in they went. The catheter tube goes in through an artery in the groin, which gets numbed up with a local. It's a very odd feeling as the catheter finds its way up through your hip and your ribs to your heart. Though your veins and arteries have no nerve endings, you can kind of feel it 'knocking' around inside of you. (Sorry Dad. If you're reading this, you may want to skip ahead a few paragraphs.) Once it was in my heart I felt a lot of pressure. Now, I don't know if that's normal or not because of the issues that I have; this is just my experience.
Once inside my heart they were able to inject dye in order to act as a contrast to see the inner workings of my heart. With the dye the cardiologist was able to check for any blockages or further heart defects (I had previously had a hole repaired). What he found was pretty cool and I became the case of the month.
Coming off my right coronary artery are a bunch of extra blood vessels that don't belong there. I was born with them, apparently, but they didn't start causing me pain until after I had the hole in my heart repaired four years ago. Me and my crazy anatomy. They were able to conclude that these little guys were the culprit by injecting the dye in them more than once and hearing me openly complain about it more than once. I'm sure it's more scientific than that, but I'm going to go with that.
What's the solution? Well, we tried a beta-blocker drug for about ten days. That didn't work to relieve the pain. Now we're trying a calcium channel blocker. I have a follow up appointment in two weeks. If that doesn't work we have two more options before possibly resorting to another heart surgery. I'll stick with the drugs, thank you very much.
Recovery from the heart catheter was not exactly what I expected. The next day I was in a lot pain. I have had a lot of surgeries and this groin pain still reduced me to a whiny baby. Thank God my husband stayed home and literally did everything for me from fetching my Tylenol to making me a sammich. He's the best.
Incidentally, today is my anniversary. Four years STROKE FREE!
 |
| Stroke Free Anniversary Picture by Laura Romero |
Wednesday, July 16, 2014
Muddy Waters
It's no secret that I have been struggling with chest pain for a long time. Off and on for about four years now in fact; ever since my heart surgery in 2010. My first cardiologist told me it was part of the recovery process, my surgeon told me I was making it up and my current cardiologist has actually been trying to help me. It has been very slow going, but it seems that we are starting to narrow down the suspects.
We have tried all the usual tests and medications. I've had stress tests, EKG's, echo-cardiograms, chest x-rays and CT scans of the chest. All of which has always come back normal so we have never been able to pin down a reason for the chest pain. We have tried Ranexa, isosorbide di-nitrate and nitroglycerin tabs as well anti-inflammatory meds with mixed results. Some didn't work at all and some only worked for a short period of time before the chest pain returned and back to the doctor I went.
I suppose on the plus side I have already met my deductible and my out of pocket maximum for the year. And we're only half way through July.
The latest thing we have decided to try is a heart catheter. The reason my cardiologist wanted to put it off for so long is because of the invasive nature of the procedure. It's not normal for someone in their early thirties undergo such a procedure. But I also pointed out to him that it's not normal for healthy 29 year old women to have strokes. He concurred. During the heart cath, the doctor is looking for anything that could be causing the chest pain; scar tissue, heart disease and malformations of the heart. While we're hoping that there is no need for further surgery, I have been made aware that is a possibility, albeit a slim one.
So now I'm just in that place of limbo where obviously I don't want there to be anything wrong but I want there to finally be a solution to one of my problems. The sooner we can take care of this one, the sooner we can take care of the rest. Oh, how I hate saying that there is still more to work on...
Till next time my friends.
We have tried all the usual tests and medications. I've had stress tests, EKG's, echo-cardiograms, chest x-rays and CT scans of the chest. All of which has always come back normal so we have never been able to pin down a reason for the chest pain. We have tried Ranexa, isosorbide di-nitrate and nitroglycerin tabs as well anti-inflammatory meds with mixed results. Some didn't work at all and some only worked for a short period of time before the chest pain returned and back to the doctor I went.
I suppose on the plus side I have already met my deductible and my out of pocket maximum for the year. And we're only half way through July.
The latest thing we have decided to try is a heart catheter. The reason my cardiologist wanted to put it off for so long is because of the invasive nature of the procedure. It's not normal for someone in their early thirties undergo such a procedure. But I also pointed out to him that it's not normal for healthy 29 year old women to have strokes. He concurred. During the heart cath, the doctor is looking for anything that could be causing the chest pain; scar tissue, heart disease and malformations of the heart. While we're hoping that there is no need for further surgery, I have been made aware that is a possibility, albeit a slim one.
So now I'm just in that place of limbo where obviously I don't want there to be anything wrong but I want there to finally be a solution to one of my problems. The sooner we can take care of this one, the sooner we can take care of the rest. Oh, how I hate saying that there is still more to work on...
Till next time my friends.
Monday, June 2, 2014
Fun Friday
My husband has Thursdays off right now so we used that day to run our errands. I also enjoyed an evening out listening to my son's band concert. (He was amazing, as always.) So while Thursday was a little bit busy, it was nothing out of the ordinary. Until that night. I was sitting and watching television after the kids had gone to bed. Nothing unusual there, but suddenly I felt an incredible pressure on my chest; like someone was standing on me. Then it felt like someone was squeezing my rib cage together.
I got up and walked over to husband, who was standing in the kitchen, and told him I didn't feel well. It didn't occur to my to take my nitroglycerin because I wasn't in severe pain. There was just a squeezing sensation. A little later I felt dizzy and there was a throbbing in my temples followed by a headache. Then I couldn't talk. My speech was slurred and I was having severe difficulty finding my words. My right arm and leg were weaker than usual and were experiencing pain.
I suppose any other person would have gone to the hospital right then and there. But not me. These symptoms, especially the aphasia, come on pretty frequently and without warning. So we decided to go to bed and wait it out. When I woke up, I felt pretty much the same, sans headache, and still couldn't speak.
Victor took an unscheduled day off, helped me get the kids ready for school and acted as my interpreter all day. We called the neurologist. She suggested the symptoms were brought on by a seizure or by a migraine and to monitor the symptoms. If they got worse, head to the ER. We called the cardiologist. He said that it sounded like on aura brought on by the headache and that he would head to the ER if symptoms did not resolve in the next few hours.We waited about another hour and decided to go to the hospital because the aphasia had never before lasted more than an hour and we were heading into hour 12.
I hate heading to the hospital whenever I experience a neurological event. One of two things always happen. One, I am not taken seriously. Or two, I am made into a science experiment. On Friday, I they took Door Number One.
After all the tests (electrocardiogram, chest x-ray, CT-scan of the brain, blood work), I am told everything is fine. There was no reason for my symptoms and I can go home as is. With no relief for the chest pain and no explanation for the event. They tried to relieve the pain with both morphine and toradol but to no avail. All I was told was that when patients come in with chest pain with no reason that can be pinned down, they usually chalk it up to stress and anxiety.
I'm not going to deny that I have stress in my life. That would be stupid. I have three kids, a husband, a mother in law and a dog to take care of. I do all the laundry, all the cooking, a large majority of the cleaning, I can't drive till October, I hate being a housewife but I love writing everyday, and I probably won't ever get to back to work ever again. But my kids are a huge help around the house, my husband takes me out whenever he can, and I don't feel particularly anxious and overly stressed. In fact, I have had less migraines in the last few months than I can remember ever having in recent years thanks to changes in diet and household environment. I have had a definite problem with chest pain since my heart surgery in 2010 that we are just now getting under control. And we are only just now starting to under the repercussions of my stroke in 2010. So while stress may have played a part in Friday's events, I feel like it was not the whole story.
This week I am focusing on creating a healthy environment. I feel better when my house is clean and smells nice therefore I am taking that little extra effort to make sure that my house is the way I like it. I am making doubly sure I am eating right, drinking plenty of water, exercising and keeping a daily journal to help get out anything that is bothering me. At this point, I will do anything to keep my heart and brain healthy and working together like clockwork.
I got up and walked over to husband, who was standing in the kitchen, and told him I didn't feel well. It didn't occur to my to take my nitroglycerin because I wasn't in severe pain. There was just a squeezing sensation. A little later I felt dizzy and there was a throbbing in my temples followed by a headache. Then I couldn't talk. My speech was slurred and I was having severe difficulty finding my words. My right arm and leg were weaker than usual and were experiencing pain.
I suppose any other person would have gone to the hospital right then and there. But not me. These symptoms, especially the aphasia, come on pretty frequently and without warning. So we decided to go to bed and wait it out. When I woke up, I felt pretty much the same, sans headache, and still couldn't speak.
Victor took an unscheduled day off, helped me get the kids ready for school and acted as my interpreter all day. We called the neurologist. She suggested the symptoms were brought on by a seizure or by a migraine and to monitor the symptoms. If they got worse, head to the ER. We called the cardiologist. He said that it sounded like on aura brought on by the headache and that he would head to the ER if symptoms did not resolve in the next few hours.We waited about another hour and decided to go to the hospital because the aphasia had never before lasted more than an hour and we were heading into hour 12.
I hate heading to the hospital whenever I experience a neurological event. One of two things always happen. One, I am not taken seriously. Or two, I am made into a science experiment. On Friday, I they took Door Number One.
After all the tests (electrocardiogram, chest x-ray, CT-scan of the brain, blood work), I am told everything is fine. There was no reason for my symptoms and I can go home as is. With no relief for the chest pain and no explanation for the event. They tried to relieve the pain with both morphine and toradol but to no avail. All I was told was that when patients come in with chest pain with no reason that can be pinned down, they usually chalk it up to stress and anxiety.
I'm not going to deny that I have stress in my life. That would be stupid. I have three kids, a husband, a mother in law and a dog to take care of. I do all the laundry, all the cooking, a large majority of the cleaning, I can't drive till October, I hate being a housewife but I love writing everyday, and I probably won't ever get to back to work ever again. But my kids are a huge help around the house, my husband takes me out whenever he can, and I don't feel particularly anxious and overly stressed. In fact, I have had less migraines in the last few months than I can remember ever having in recent years thanks to changes in diet and household environment. I have had a definite problem with chest pain since my heart surgery in 2010 that we are just now getting under control. And we are only just now starting to under the repercussions of my stroke in 2010. So while stress may have played a part in Friday's events, I feel like it was not the whole story.
This week I am focusing on creating a healthy environment. I feel better when my house is clean and smells nice therefore I am taking that little extra effort to make sure that my house is the way I like it. I am making doubly sure I am eating right, drinking plenty of water, exercising and keeping a daily journal to help get out anything that is bothering me. At this point, I will do anything to keep my heart and brain healthy and working together like clockwork.
Wednesday, May 21, 2014
What the Heart Wants
I have been struggling with moderate to severe chest pain off and on for nearly four years, ever since my heart surgery. The reactions I have had from the medical community have varied. I have been pushed aside, ignored, regarded with suspicion, told I was lying and told I was crazy. I have been fortunate (finally) after all this time to have found a cardiologist who not only listens but agrees that a normal, healthy woman in her early thirties should not be experiencing chest pain and shortness of breath.
For just over a year he and I have been working together to try and find a root cause to the symptoms. My doctor is not always as aggressive as I would be, but at least he hasn't given up on me. Recently we tried a different approach with my medications. The Ranexa I had been taking had ceased to be effective in controlling the pain so we stopped it all together. He gave a prescription for nitroglycerin pills to try out. When my chest pain got really bad I was to take one, under the tongue. After trying it out five times I was to call him and, if it worked, I would get a new prescription for a new heart medication.
Well, within a week I had given the nitro a good trial run so I called the doctor back. I have a new prescription for isosorbide. It's a medication designed to relax and dilate blood vessels so blood can flow more easily. So far it seems to be working. I have a steady low ache instead of a stabbing pain, so that's some improvement. I have the nitro for sudden, strong pain. I'm supposed to keep them with me all the time. I feel like one of those old men in the movies who suddenly collapses and gasps for his pills.
There are still no clues as to the reasons for the pain and my doctor hesitates on running any further tests. I understand why. Everything so far has declared me fit and healthy and he is doesn't want to put me under undo stress for nothing if more tests also reveal no answers. I get it, I do. But my thinking is that where there is pain (and has been for a long while) there has to be a reason. Right?
For just over a year he and I have been working together to try and find a root cause to the symptoms. My doctor is not always as aggressive as I would be, but at least he hasn't given up on me. Recently we tried a different approach with my medications. The Ranexa I had been taking had ceased to be effective in controlling the pain so we stopped it all together. He gave a prescription for nitroglycerin pills to try out. When my chest pain got really bad I was to take one, under the tongue. After trying it out five times I was to call him and, if it worked, I would get a new prescription for a new heart medication.
Well, within a week I had given the nitro a good trial run so I called the doctor back. I have a new prescription for isosorbide. It's a medication designed to relax and dilate blood vessels so blood can flow more easily. So far it seems to be working. I have a steady low ache instead of a stabbing pain, so that's some improvement. I have the nitro for sudden, strong pain. I'm supposed to keep them with me all the time. I feel like one of those old men in the movies who suddenly collapses and gasps for his pills.
There are still no clues as to the reasons for the pain and my doctor hesitates on running any further tests. I understand why. Everything so far has declared me fit and healthy and he is doesn't want to put me under undo stress for nothing if more tests also reveal no answers. I get it, I do. But my thinking is that where there is pain (and has been for a long while) there has to be a reason. Right?
Thursday, May 1, 2014
National Stroke Awareness Month
May is National Stroke Awareness Month!
I guess it is only appropriate because it was in May four years ago that I had my first stroke. It was in August that same year that I had my last one. Recovery has been a very long road and I'm not done yet, but I faith that one day things will get back on an even keel once again.
So how did I know I was having a stroke? I didn't. I was 29 and completely healthy. I had a migraine the previous night and was still feeling bad that day, but I had a history of migraines and thought nothing of it. My right arm starting tingling and my hand was feeling numb. My right arm and leg felt like they weighed about 20 pounds. The right side of my face felt numb. I felt dizzy and lightheaded. I was slurring my speech and felt very drowsy. I went to the hospital. The admitting nurse believed that I had a stroke and pushed me through. However, when I went to the back, the doctor didn't take me seriously. He barely touched me during his very brief examination. My pupils are two different sizes, a condition known as anisocoria. Every single doctor I have come across has questioned me about my pupils. Except this one. Because he didn't care.
My final diagnosis from this particular doctor from this particular hospital low potassium and a sinus infection.
It was nearly 48 hours later that I got the final diagnosis from my neurologist via MRI that I had indeed had a minor stroke. Over the next few months I was subjected to numerous tests to discover the reason as to why. The cause of my stroke was an un-diagnosed congenital heart condition. I had a hole in my heart that produced no murmur, no chest pain, no shortness of breath, nothing. What it did do, was allow blood clots to flow up to my brain, causing a stroke.
In August 2010, I underwent open heart surgery to correct the situation and suffered another stroke during the operation. When I woke up, I had no feeling in my right hand, parts of my face and couldn't talk. Now, four years later, I still have a loss of feeling in two of my fingers, parts of face, and I still garble my words from time to time but that is nothing compared to the phantoms pains I have in my right limbs. I now have chest pain and shortness of breath, but the causes of those remain a mystery. Good news is, I have an appointment tomorrow with my cardiologist to be reevaluated. Again.
That's my stroke story. What's yours?
I guess it is only appropriate because it was in May four years ago that I had my first stroke. It was in August that same year that I had my last one. Recovery has been a very long road and I'm not done yet, but I faith that one day things will get back on an even keel once again.
So how did I know I was having a stroke? I didn't. I was 29 and completely healthy. I had a migraine the previous night and was still feeling bad that day, but I had a history of migraines and thought nothing of it. My right arm starting tingling and my hand was feeling numb. My right arm and leg felt like they weighed about 20 pounds. The right side of my face felt numb. I felt dizzy and lightheaded. I was slurring my speech and felt very drowsy. I went to the hospital. The admitting nurse believed that I had a stroke and pushed me through. However, when I went to the back, the doctor didn't take me seriously. He barely touched me during his very brief examination. My pupils are two different sizes, a condition known as anisocoria. Every single doctor I have come across has questioned me about my pupils. Except this one. Because he didn't care.
My final diagnosis from this particular doctor from this particular hospital low potassium and a sinus infection.
It was nearly 48 hours later that I got the final diagnosis from my neurologist via MRI that I had indeed had a minor stroke. Over the next few months I was subjected to numerous tests to discover the reason as to why. The cause of my stroke was an un-diagnosed congenital heart condition. I had a hole in my heart that produced no murmur, no chest pain, no shortness of breath, nothing. What it did do, was allow blood clots to flow up to my brain, causing a stroke.
In August 2010, I underwent open heart surgery to correct the situation and suffered another stroke during the operation. When I woke up, I had no feeling in my right hand, parts of my face and couldn't talk. Now, four years later, I still have a loss of feeling in two of my fingers, parts of face, and I still garble my words from time to time but that is nothing compared to the phantoms pains I have in my right limbs. I now have chest pain and shortness of breath, but the causes of those remain a mystery. Good news is, I have an appointment tomorrow with my cardiologist to be reevaluated. Again.
That's my stroke story. What's yours?
Tuesday, April 22, 2014
Heart of the Matter
I think I tend to hold off on updating this blog most often of all my blogs because I feel sometimes like I am just coming here to complain. But I don't want to sound like I am complaining. This is about stroke recovery. I have a wonderful life. Sure, there are things I would change if I could. I would love to be able to go back to work or at least make a living working at home. Unfortunately, my health has taken a toll on me in such a way that is just not going to happen any time soon.
I had a date in mind. On June 24 I was going to be allowed to drive again. You have to be six months seizure free before you are allowed to drive. In the state of Texas, physicians don't have to report patients to any authorities when they are experiencing seizures. However, if someone were to have an accident and it were to come out that they have a history of seizures, their license could be taken away permanently. So it's better to be safe than sorry. On April 8, my six months started all over again.
And that has been followed by two weeks of dizziness, nausea, weakness and sometimes periods of disorientation. So I have been a mess. To top it all off, about a month ago I began experiencing chest pain again. I went back in for a visit with my cardiologist. We bumped up the dosage of angina medication. But if in two weeks of taking it, it doesn't work I may have to go in for a heart catheter to look for any blockages or abnormalities that could be causing the pain. It has been one week and I have seen no change.
What bothers me the most about feeling so bad is that it cuts into the time spent with my kids. I had to quit walking them to and from school after one day when I barely it back home. That is valuable time I lost talking and playing with my children. Not to mention the fact I probably embarrassed the hell out them when I sat down on the sidewalk with my head on knees when I got so dizzy I was afraid I would collapse. I also lost several days not meeting my goal this month for my Writing 12 in 12 challenge. It's National Poetry Month and I was trying to write a poem a day, but I couldn't even look at a computer screen for more than a week.
And to my precious nephew, who had to turn four without his Aunt Lala, I am so sorry I couldn't make it to your party. I hope it was wonderful and fantastic and everything you wanted it to be. You are such a big boy and no one will ever love you like I do. I promise I will do my best to be there for every one of your milestones but sometimes I have some hurdles I have to jump over to be there. Hugs and kisses to mommy and daddy. Lala loves you.
I had a date in mind. On June 24 I was going to be allowed to drive again. You have to be six months seizure free before you are allowed to drive. In the state of Texas, physicians don't have to report patients to any authorities when they are experiencing seizures. However, if someone were to have an accident and it were to come out that they have a history of seizures, their license could be taken away permanently. So it's better to be safe than sorry. On April 8, my six months started all over again.
And that has been followed by two weeks of dizziness, nausea, weakness and sometimes periods of disorientation. So I have been a mess. To top it all off, about a month ago I began experiencing chest pain again. I went back in for a visit with my cardiologist. We bumped up the dosage of angina medication. But if in two weeks of taking it, it doesn't work I may have to go in for a heart catheter to look for any blockages or abnormalities that could be causing the pain. It has been one week and I have seen no change.
What bothers me the most about feeling so bad is that it cuts into the time spent with my kids. I had to quit walking them to and from school after one day when I barely it back home. That is valuable time I lost talking and playing with my children. Not to mention the fact I probably embarrassed the hell out them when I sat down on the sidewalk with my head on knees when I got so dizzy I was afraid I would collapse. I also lost several days not meeting my goal this month for my Writing 12 in 12 challenge. It's National Poetry Month and I was trying to write a poem a day, but I couldn't even look at a computer screen for more than a week.
And to my precious nephew, who had to turn four without his Aunt Lala, I am so sorry I couldn't make it to your party. I hope it was wonderful and fantastic and everything you wanted it to be. You are such a big boy and no one will ever love you like I do. I promise I will do my best to be there for every one of your milestones but sometimes I have some hurdles I have to jump over to be there. Hugs and kisses to mommy and daddy. Lala loves you.
Tuesday, January 28, 2014
Let's Get Physical
I had a frank discussion with my neurologist about my physical well being. Over the last three years, my right side has progressively gotten weaker and weaker. Because of the neuro-pathic pain (a present from my stroke) that we just haven't been able to get a handle on, I have gotten less and less active. It can now be a struggle to do my daily activities due the pain and weakness I am experiencing.
It's a vicious cycle that I haven't figured out how to break. I try to work out and go for walks. In fact I walk my daughters to school on average about three times a week. The walk is one mile round trip. Granted, after half a mile, I am already ready to call it quits, but I try and fail and try again. Thus prompted the discussion with my doctor. Something has to change. I am on lifelong medication, some of which has made me gain weight, and I need to get more active to lose the weight to keep a healthy heart and reduce the risk of another stroke.
We decided on a round of physical and occupational therapy to help my body get back to where it needs to be. I had my first appointment last Thursday. It was my evaluation day. After that, the insurance company gets to decide whether or not to continue paying for the therapy. The evaluation went well. I have lost a lot of strength in my right side as well as range of motion. Cindy, my therapist, was great. She was knowledgeable and patient. She answered all of my questions. I honestly couldn't have asked for better.We didn't get to the occupational therapy, something I will have to address at my next appointment, but I was sent home with plenty of exercises to do everyday to help build my core strength and my balance back up.
All that's left is waiting to be sure there are no hiccups with the insurance company. I spoke to them on the phone to confirm my benefits and they gave no indication that there would be any refusal for treatment. The only reason it is even on my mind is because I was asked to fill out more paperwork to send off to them. I had physical, occupational and speech therapy right after my initial stroke in August of 2010. I was 29 years old at the time. I recovered remarkably well, considering. I am also worried because my occupation is "homemaker". It wasn't a job that was important enough to fill out the JOB section of the insurance company's questionnaire. Never mind the fact that the reason I have no job is stroke related.
It's the after effects of living with a stroke that seem to have done me in. The neuro-pathic pain, the seizures, memory loss and problems with retention have led me to quit school and my job. But I can't quit the most important job I have, that of raising my three kids. They are counting on me and I can't let them down. So even though it really hurts, you'll have to excuse me. I need to go do my exercises now.
E-mail your members of Congress and ask them to stop therapy caps for Medicare patients who have had a stroke.Without therapy, vital skills could be lost.
It's a vicious cycle that I haven't figured out how to break. I try to work out and go for walks. In fact I walk my daughters to school on average about three times a week. The walk is one mile round trip. Granted, after half a mile, I am already ready to call it quits, but I try and fail and try again. Thus prompted the discussion with my doctor. Something has to change. I am on lifelong medication, some of which has made me gain weight, and I need to get more active to lose the weight to keep a healthy heart and reduce the risk of another stroke.
We decided on a round of physical and occupational therapy to help my body get back to where it needs to be. I had my first appointment last Thursday. It was my evaluation day. After that, the insurance company gets to decide whether or not to continue paying for the therapy. The evaluation went well. I have lost a lot of strength in my right side as well as range of motion. Cindy, my therapist, was great. She was knowledgeable and patient. She answered all of my questions. I honestly couldn't have asked for better.We didn't get to the occupational therapy, something I will have to address at my next appointment, but I was sent home with plenty of exercises to do everyday to help build my core strength and my balance back up.
All that's left is waiting to be sure there are no hiccups with the insurance company. I spoke to them on the phone to confirm my benefits and they gave no indication that there would be any refusal for treatment. The only reason it is even on my mind is because I was asked to fill out more paperwork to send off to them. I had physical, occupational and speech therapy right after my initial stroke in August of 2010. I was 29 years old at the time. I recovered remarkably well, considering. I am also worried because my occupation is "homemaker". It wasn't a job that was important enough to fill out the JOB section of the insurance company's questionnaire. Never mind the fact that the reason I have no job is stroke related.
It's the after effects of living with a stroke that seem to have done me in. The neuro-pathic pain, the seizures, memory loss and problems with retention have led me to quit school and my job. But I can't quit the most important job I have, that of raising my three kids. They are counting on me and I can't let them down. So even though it really hurts, you'll have to excuse me. I need to go do my exercises now.
E-mail your members of Congress and ask them to stop therapy caps for Medicare patients who have had a stroke.Without therapy, vital skills could be lost.
Subscribe to:
Posts (Atom)