PET scan of the heart

The last few conversations I've had with the cardiologist have left me feeling like I'm either not being taken seriously or that I'm just some hopeless case but everyone is just too polite (or too greedy) to let me know. In fact, at the appointment before last the conclusion was that perhaps heartburn was causing the sensation of uncomfortable chest pain. I wish you could see my face as I explain this to you. I do have bouts of heartburn, but I have not had it for the last five years straight. I went by his recommendation anyway, and took an antacid everyday for a month before returning to tell him just exactly how stupid that plan was.

At least that last appointment was blessedly more productive. He asked me a question that I think is one every patient with chronic pain needs to ask themselves. Not because a doctor is ready to give up on you, but because they need to know how willing you are to work with them for answers. He asked me, "How much does this pain impact your life? Is it just a minor annoyance that you can live with? Or is it something more serious that we really need to explore?" He needed to know because he had done everything he could to fix my chest pain. I had already had a heart catheter and a coiling procedure. I'd had three stress tests and everything was healthy and normal. I answered that I needed to fix this. It wakes me up at night. It keeps me from participating in life. It was decided that I would be scheduled for a PET scan of the heart. It would give him a definitive result of whether or not there were anything left to correct or any blockages in my heart. If they were, we would know where to proceed. If not, he would have an idea of where to look next.

A PET scan is a Positron Emission Tomography scan that uses a radioactive tracer to look for disease, injury or poor blood flow in the affected area. Pictures are taken using a combination of CT and PET scans.

To do the test, you have to lie on your back with a bunch of wires connected to your chest to monitor your heart rate (EKG) and an IV stuck in your arm to pump you full of radioactive tracer (superpowers not included). First, images are taken of your resting heart rate. Then they give you a concoction of an aerobic workout in a bottle to get your heart rate up and your blood vessels open, all while you're still lying flat on your back. More pictures are taken. Then you go radioactive. More pictures. Then you are given the antidote to the workout concoction. More pictures. And, voila! You're done.

Unless you're me. And you have really low blood pressure.

In which case, when your pressure dips down in the low 80's and your blood doesn't flow like they want it to, you have to spend a great deal of time pedaling your feet and squeezing balls in your hands. But they got what they needed and that's all that matters.

Even better is that the cardiologist running the show gave me the results a few minutes later.

Good news is that my heart is 100% normal and healthy. Woo hoo! He also said that I'm not crazy. Pain is real. And that often, by the time patients get to him, it's the doctors that are crazy. His thoughts were that the pain was one of four things:

1) Nerves got cut during my open heart surgery and were damaged, causing pain.

2) Nerves were cut and are now dead causing phantom pain much like an amputated limb will still feel pain.

3) Something inside my chest wall is inflamed or I formed an allergic reaction to something within my chest wall after my surgery, causing pain.

4) I have a very minor leaky valve (which I knew about). It is very common, especially in women. It is minor enough that it should not be causing me any pain, but it is always possible.

These were the first real answers I have gotten in the last five years. Well, since we tried to correct the situation with the coiling procedure. This doctor said he would stay with me until we corrected the situation, but also said no more surgeries! He thinks we can correct the pain with either medication or injections. Our first step is to try a beta blocker.

I'm to try the new medication for at least one month. If it doesn't work he is going to refer me to a pain specialist for nerve blockers. Now the hard part is getting used to the side effects. And keeping my blood pressure up...

No Pain, No Gain

It has been a couple weeks since the cardiologist told me to start pushing myself when it comes to overcoming my chronic chest pain. I'm finding that it's not that difficult to get my heart rate up, but all this physical activity is taking its toll. Not only do I have the chest pain to contend with, I have neuropathic pain from my stroke to battle against as well. The right side of my body is in a constant state of "Ouch!" and that ain't good. Especially the more active I get.

My morning routine consists of a short, targeted strength training workout (Denise Austin's Get Fit Fast) and walking the dog. If I choose not to do the strength training I do yoga and got my stretch on (JJ Gormley's Yoga Complete for Every Body). And I do this nearly every single day. So pushing myself means what, exactly?

I have a fitness tracker to help keep me motivated. I do my best to walk to the dog farther now; at least one mile every day. Either one long walk in the morning or two short walks throughout the day. If I am lacking in steps for the day I will hop on our stationary bike to try to catch up. I put on some music while I'm cooking dinner and dance in the kitchen while slicing and dicing. Other than that, I'm not really sure what else to do. I'm a broke writer working from home, for Pete's sake.

I raise my heart rate too much, my chest pain gets too severe to continue normal activity. And when I'm very active for more than a couple of days in a row, the right side pain is so severe I have to spend several days laid out to recuperate from that. So then the fitness tracker is useless, all the work I did previously is useless and I just have to start all over again in a few days. My whole system has become moot.

Total Catch 22. The more I work the more pain I'm in the more I have to rest the more I have to work the more pain I'm in the more I have to rest...

I'm kind of honestly at a loss as to what to do. I think the next step is just to check in with neurology and see if there is another increase I can do with the Lyrica to help with the pain management. Other than that...?

Stress Test, Stress Test, Stress Test

I think by now I've had just about every type of stress test there is; run-of-the-mill-treadmill, nuclear, and cardio-pulmonary. The only one I can think of that I haven't done is chemical. And I'm ok with that. I also hope I never have to see another treadmill as long as I live.

About a week and a half ago I had a nuclear stress done to try to determine to cause of my chest pain. Doing a nuclear stress test is a long game of "hurry up and wait". I went in and was hooked up to all the leads for the heart monitor (EKG) and an IV for my radioactive dye. Then I sat for an hour so they could get x-ray pictures of my heart at its resting heart rate. Then I got to hop on the treadmill. Oh joy! Having already done a regular stress test I knew what to expect. The treadmill starts off slow and gets more and more intense. I was told the goal was get my heart rate up to at least 150+ beats per minute. I only made it to about 140 beats before we had to stop because of pain and shortness of breath. Then I got more radiation and some medication to open my blood vessels. Then it was hurry up and wait again, but this time for about 15 minutes. More pictures were taken of my heart. All in all, this whole process took about four hours.

The results were that my heart is completely healthy and normal. So my cardiologist referred me back to the doctor who did my coiling procedure in September to see what his opinion was. My cardiologist told me that if I stayed with him, the best he could do was treat me with medication and he didn't want to keep throwing more and more pills at me. So off to the specialist I went.

At his office, he suggested we do a cardio-pulmonary stress test to see if there was a correlation between the shortness of breath and the chest pain. This stress test is a little different in that you are hooked up to a breathing apparatus that measures your oxygen intake and carbon dioxide output. It also keeps track of your heart and watches to make sure it isn't being deprived of oxygen while it is doing its job. Good news is, my heart and lungs are healthy and normal. Everything looks great. Although I wouldn't suggest doing this test when you have a sore throat like I did. It's like tiny fire icicles being driven into the back of your throat and you can't swallow because your mouth has a giant plastic tube shoved in it! But I'm ok.

So. What does all this mean now?

It means that I have to push through this setback. The chest pain is not something that is going to hurt me, it is not warning me that something is wrong and I'm certainly not going to die because of it. In fact, it's quite the opposite. I have been told to start pushing myself. I need to get out and start moving; get my heart pumping again. Get it used to the lifestyle I want to live. I can't help but remember five years ago after my first stroke when I was told to stop all activities until they figured things out. And then it took five years to figure things out. In fact, it wasn't until this past September I was finally released to resume normal activity. And now that my chest hurts when I resume normal activity... AAAHH! It's enough to drive a person crazy.

This is going to take some getting used to.

And I didn't even get superpowers from all the radiation I've been exposed to the last five years.

Return of the Chest Pain

Last summer, I had a heart catheter that determined I had some abnormalities in my heart that could possibility be causing my chest pain. Then I subsequently had the procedure to fix the abnormalities. I had some relief for a short while but the chest pain came back. And now I'm afraid my poor doctor doesn't know what to do with me.

We've already tried different blood pressure medications (to regulate the internal blood pressure in my heart) and now I'm on the last vasodilator that is available to help expand my vessels and create better blood flow. And it still hurts. I can place my hand over the exact place on my chest where it hurts. Sometimes it even radiates up my neck, wraps around my back or down my left arm.

And the crazy thing is, I felt perfectly fine until they went in and "fixed" it.

I keep trying to tell myself it's better than having another stroke. But the worst stroke I had was on the operating table, not the first minor stroke I had that led to the discovery of my heart defect. But then again, is there really such thing as a minor stroke? See why I get so frustrated? I go round and round about this. One moment regretting the decision to have the ASD repair, the next thinking that maybe it was worth it.

Fast forward four and a half years, and I'm still having chest pain (which only started after the heart surgery). I've had numerous tests, one exploratory procedure, my coiling procedure and all for what? To still be in pain. To still be short of breath. To still tired out easily.

My doctor has warned me that he has done just about everything he can do for me. It might be time to move on to see the specialist that did my coiling procedure full time. I really don't want to do that. Not only is the specialist down town (which is a pain in the ass), I love Dr. Morris. We have a great rapport. The nurses at his office are friendly and knowledgeable. I don't want to leave him. His next, but hopefully not final, suggestion is to do a nuclear stress test.

I've done a stress test before, but this time I get to be hooked up to an IV and pumped full of radioactive dye. Too bad I haven't gotten superpowers from all the radiation I've been exposed to. That would definitely be a happy ending to this story. As it stands now, the results determine which doctor I will go see next; the one I have grown to trust and know and love or the one that has seen my groin up close and personal.

Things are Looking Up

Recovery has been a long and (very) difficult road for us. If there was a roadblock to encounter, I found it. But it looks as though (fingers crossed) things are finally on the upswing. After that last coiling procedure, I have had less pain, I had a successful neurologist appointment last month and I am enrolled in college again to complete my bachelor's degree.

I had a coiling procedure in my heart last September to block the flow of blood to some extra veins in my heart. I do feel a lot better most of the time. I have only needed my nitroglycerin pills twice since then and both times were when I just wore myself out; which isn't hard to do. I definitely have less chest pain but I still get short of breath and tire easily. I have hope, however, that I can continue to build my endurance by simply continuing with my exercise routine and building upon that. I started gardening, which is a whole other story in itself, so that helps keep me active. As if the kids, the dog and the normal foundation of my life weren't enough.

Last month I had a six-month follow up with my neurologist. We made some changes to my medications. We decided to increase my Lyrica and get rid of the Neurontin. The insurance company, however, thought they were smarter than my wonderful doctor and took an extra month to approve the medication increase. So I spent a short while with no pain relieving medication at all while they farted around. But everything is fine now and I do feel slightly better. I have a hard time telling if the extra pain in my right arm and leg is due to my being more active lately (which I am doing on purpose - I am so sick of being static) or if it is genuinely increasing on its own or if I am only growing more tolerant of all the medications. The other plus has been a decrease in my migraines. I had one not too long ago, but it only lasted four days; so that wasn't too terrible. I think my diligence for to sticking to my migraine diet helped that.

Everything seemed to be going so well that my husband, Victor, and I sat down and mapped out a future plan that includes me going back to school to finally finish my Bachelor's Degree. Granted, it won't be in forensic science like I originally thought it would be, but I have to continue on the path that I have ended up on. I have been writing seriously for about 18 months now and it is time to get a formal education in English and Creative Writing. I have a few ideas of what I want to do with my degree when I am done and am very hopeful that I will continue to get better and be able to take advantage of the situation. And it has been so important to me to finally finish my degree.

You're looking at the newest Undergrad at University of Houston Victoria, majoring in Creative Writing. I hesitated to tell anyone because I was so upset when I had to quit school back in 2012 due my memory loss and then quit my job due to my seizures. But now seems that I have a good handle on things. The memory is still a problem, but it has gotten better and I haven't had a seizure in 11 months. 

Go me!

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.

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.

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.

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!

Stroke Free Anniversary
Picture by Laura Romero

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.

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.

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?

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?

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.

Laura's Bad, Awful Day

Whenever I have a bad day, or even an unlucky string of them, I often think back to a Sesame Street book I remember reading when I was a child. Grover's Bad, Awful Day is a book about how things in Grover's world went from bad to worse to truly awful in the eyes of a child. I can really relate to that right now. As an adult I no longer get too bent out of shape when I spill my milk or leave my lunch at home. The things that get me down are no longer the problems of little monsters. I have adult size problems now that require more than my Mommy and a little ice cream to help me figure them out.

It has been so hard lately not to get discouraged at the lack of progress I seem to be making. If anything I feel like with every step forward I make, I take two steps back. This week alone I had a debilitating migraine, killer chest pain, nearly unbearable right pain side, and two seizures. I have had to face the facts that even if my heart is in the right place, I can't do everything on my own.

I realized that I am still just so angry. Not in a "Why me?" kind of way, but more in an "I don't understand" kind of way. I don't understand why I can't just hop back on where I left off. I don't understand what I'm supposed to do now. I don't understand how I'm supposed to fix this. I don't understand why my case is so special that no one can figure it out. I can't figure out how best to make myself understood.

The only solution to my problems has been to let go. I don't have the luxury of being too proud to accept help. It's ok to let people in and let them do things for me and for my family. They wouldn't offer if they didn't want to do it. I offer to help all the time because I truly want to be of assistance. Why should I feel so skeptical of others? I need to accept my limitations and move on. No big deal, right? (I say that, but it is still a big deal)

So maybe my bad, awful days aren't as bleak as I imagine. I have family and friends to help me through, if only I will let them. Bad days are good if for nothing else but to make the rest of the days look good by comparison.

One Week Later

It has been one week since I started taking Ranexa for my chest pain. The good news, the very good news, is that I can walk across the parking lot without sounding like I ran a three minute mile. That brings me one step closer to my goal of being able to work out again. Then maybe I can counter act the weight gaining side affect of my other medication. The bad news is that it still makes me really nauseous so I haven't been able to eat as much as I would like. My chest pain has decreased as well. I am so much more comfortable than I was a week ago. Not perfect, but a significant improvement.

Today I am going to call the neurologist and talk to her about the side effects of the Neurontin. That's the one that is making me gain weight. But I can't exactly call in and say, "Hey, my vanity is getting the best of me, is there anything else we can do to help with my chronic pain?" But it does make me really drowsy during the day. And that is a really big problem because I have things to do that don't always include sleeping on the couch. Then again it is a really good excuse not to do housework...

I may have to rethink this...

Cardio Says What?

Yesterday I had my follow up with my cardiologist. He hasn't given up on me yet. We went over all my test results again, talked about how I was feeling, and tried to come up with a plan. And I found out I lost two pounds.

One of my previous test results indicated that I had an increased risk of having a blood clot somewhere. We had decided that it was probably because of the existing clot I have in my left carotid. We know that I don't have any clots in my arms, legs or lungs. So now the current theory is that I may have some very small clots in the vessels in my heart. I think it's similar to angina. When the oxygen gets cut off to those parts of the heart, it can cause pain.

To help out, we are going to try a new medication that is for chronic and recurring angina. If it works, great! If not, we'll revisit the situation in two weeks. I'm not a big fan of the side effects, though. The medication is Ranexa. It makes me feel dizzy and nauseous but I'm going to stick with it. It's too early to tell if it's working or not yet. But considering that I've been living with chest pain and shortness of breath off and on for three years, I'm willing to try anything.