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.

National Heart Month

Happy National Heart Month!

Red sweeps the nation this month to raise awareness for heart disease and stroke. According to the American Stroke Association, heart disease still remains the #1 cause of death in the nation while stroke has fallen to #5. What's so sad is that, in most cases, heart disease and stroke are 100% preventable.

I say in most cases because in situations like mine, where there was a congenital heart defect involved, there was probably little we could do to prevent my stroke. 

Stroke still remains the leading cause of disability and the victims of stroke are getting younger and younger. So while the death rate may be decreasing the occurrence of stroke is actually increasing. The drop in the mortality rate due to stroke is due in part to better health care and, possibly, because of the increase of stroke in younger generations. Let's face it, younger people just bounce back faster. But stroke is still on the rise in older generations because we are living longer lives.

So why are younger people having strokes? Obesity? Diabetes? Fatty diets? Un-diagnosed congenital heart defects? Ignorance?

I applaud the American Heart and the American Stroke Association for bringing such serious issues to light. And please, go RED for hearts everywhere. You just might save a life.

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.

Reduction in Headache Days

Something I have always struggled with is controlling my migraines. I am one of those unfortunate few whose migraines are triggered by nearly everything. Sights, smells, diet, hormones; you name it. I have tried nearly everything to control these outbreaks, too, because having a migraine two or more times a week is clearly unacceptable. I have tried all of the preventive medications (and currently still take one) and even did Botox for Migraines.

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

I included a list of foods that are a good alternative or that would help reduce migraine days by giving you the supplements you need to fight the pain as well.

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.

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.

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.

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.

The Scarecrow

We had a change of insurance this year and with that change I opted to find a new neurologist. I grew tired my last one because he began to treat my problems by shoving more pills at me instead of listening and trying to correct the problem. I know that I have some weird problems and I know that I am an unusual case, but if you're not capable of dealing with it, I would much rather be passed on to a colleague than just passed by.

After my stroke, I developed chronic pain in my right side. It is constant but varies in intensity. Some days I can barely walk, but others I can be pretty active. My new neurologist is not willing to rule out a form of epilepsy due to stroke. And finally, my migraines have worsened considerably over the last three years. So you can imagine why I can be a bit of an enigmatic patient.

I am still leery of my new neurologist because she seems very focused on getting one particular new medication to work for me. But she did take me off of two other ones. And as far as I am concerned, the fewer pills, the better. She did refer me to a headache clinic because she realized that my migraines were out of her realm of expertise. I am grateful for that. And when I do go in to see her, she sits and talks to me like a person should. She never rushes, interrupts or makes assumptions. She listens and makes me feel like she may really have my best interests at heart. In between appointments, her nurse calls to check on my progress. So I think I'm going to stick with her a while longer.

My headache specialist has been really impressive. He made me feel normal. I wish he dealt with chronic pain, too. I got re-approved for Botox for migraines. I am really excited about that because Botox was the only thing that helped to prevent my migraines. He is also trying to find out what is causing all my headaches. I have them nearly everyday. And for anyone that has had migraines, I hope you can empathize. For anyone that hasn't, I hope you don't think I'm just whining about a headache. This doctor has told me that if we can get down to the root of the problem, we can help make my days more pain free. That would be grand.

Pain is the biggest side effect I have from my stroke. I remember it setting in right away. I remember being in recovery and being pain. According to the neurologist it happens, but it is highly unusual. So I thought maybe if I deal with the things that aren't so unusual, I can slowly start feeling better. I'm working on my migraines and my chest pain. Writing helps me work on my agraphia, which is trouble writing after a stroke. I am doing really well with my aphasia as well. Every once in a while I slip and say something really off the wall. But my brain seems to be making the new connections I was promised it would.

"Brains are the only things worth having in this world.” 
― L. Frank Baum, The Wonderful Wizard of Oz

The Tin Man

When I had my first stroke in May 2010 I was lucky enough to have a neurologist that went searching for the cause. The cause ended up being a congenital heart defect that had gone undetected my whole life. I never had a heart murmur, chest pains, or shortness of breath. But I had a stroke at the age of 29. I had open heart surgery to correct the hole in my heart and subsequently had another stroke. Since then, I have had a lot of problems with my chest.

I remember very clearly what happened when I saw my heart surgeon after my surgery. I had made an appointment with him because I was experiencing moderate chest pain and shortness of breath with very little exertion. It was quite a while after my surgery. The pains of the procedure had faded and a new pain had set in. My cardiologist wasn't being much help so I thought I was getting a second opinion. The surgeon came in and sat with me for a moment. Literally. His clinical diagnosis after one minute was that I was depressed and that all the pain was in my head.

Eventually the ache did die down but it never fully went away. I never was able to get back up to my previous level of activity because I have never been able to breathe again. I have always had shortness of breath after minimal activity. It doesn't stop me from trying. During the school year, I walk two miles everyday walking the kids to and from school. I do yoga when I can. I still run errands and do things around the house. I'm waiting for this Texas weather to cool down so I can work in my yard more comfortably. So I am not inactive. Just not back to my old self. In March, out of the blue, the pain came back and the shortness of breath got much worse.

Off to a new cardiologist I went. At first I really liked him. He seemed to be excited about the challenge I brought him. He got the old test results from my hospital stays and started ordering new tests. When everything came back normal he started running out of things to test. My EKG was normal. My echo-cardiogram was as normal as can be for someone who had heart surgery. The only blood clot I have is the one in my brain. My stress test was normal, aside from the chest pain and shortness of breath. My lungs are clear of any blockages. My oxygen levels are great. In fact, the only thing that has come back abnormal are my triglyceride levels, which no one has a good explanation for. They are high even though my life style would actually lower them. I've always been a mystery.

After my last test, his nurse called me to give me the results and to schedule a one month follow up. I asked her if there was anything I could do in the mean time to help with the chest pain and shortness of breath. And she said no and proceeded to schedule the follow up. I cried. But I was crying a lot those days. I remember the last time I was in his office. This doctor who had seemed so excited to have a challenge had come to standstill. I saw it in his face. I have seen that look in many doctors before him. And it's not his fault. Not really.

No one knows what to do with me. What do you do with a girl who had two strokes right before her thirtieth birthday? If I was in my eighties, maybe feeling this bad all the time wouldn't be so abnormal. But here I am, in my thirties, trying to raise my kids and have a normal life. Everything has changed so fast that I would really like to have the stability of keeping the same doctors. My follow up appointment is on Monday. I hope he either has new ideas or good news. I guess we'll see.

“I think you are wrong to want a heart. It makes most people unhappy. If you only knew it, you are in luck not to have a heart.” 
― L. Frank Baum, The Wonderful Wizard of Oz