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.
Showing posts with label heart catheter. Show all posts
Showing posts with label heart catheter. Show all posts
Thursday, April 30, 2015
Tuesday, October 14, 2014
Follow up to Heart Coiling Procedure
To make a long story short, I feel a lot better. In fact, I feel better than I have in a very long time. Perfect? No. But I wasn't expecting perfection, just hoping for some relief and that is what I got. And that makes me happy.
I had my follow up appointment with the specialist last Wednesday, which served to remind me how thankful I am that I no longer have to drive downtown to the Medical District on a regular basis to seek medical treatment. I left my house at 1 o'clock in the afternoon and didn't get home until 6:30 that evening. All to see the doctor for five minutes to tell him that the procedure worked, mostly, and to be told to follow up with my regular cardiologist (who is on my side of town). I could have phoned in. Oh, well.
I'm not complaining, mind you. In fact, this time I had an easier time recovering from the catheter than the last time. I had much less bruising and less pain overall which is a win in my book. I had lingering chest pain for about a week after the procedure. I was desperately afraid that it hadn't worked. Granted the pain wasn't as bad as it had been, but it was still at a level that I didn't think I could continue to live with.
After that first week, I began to feel better. It felt like a vice had loosened on my chest. I could breathe freely, and I hadn't even realized that I had felt restricted before. It was like being able to completely fill my lungs for the first time. I have times when I have no chest pain at all. Most of the time I feel anywhere from 50-80% better than I have in the last few years.
I have no idea if is there is anything else to be done. I have been told that I can now go and lead a normal life with no restrictions, even with a bunch of coils and a patch in my heart. Well, as normal as be expected considering the very abnormal situations I have been thrown into.
And that, my friends, is finally a solution that makes the journey worth fighting for.
I had my follow up appointment with the specialist last Wednesday, which served to remind me how thankful I am that I no longer have to drive downtown to the Medical District on a regular basis to seek medical treatment. I left my house at 1 o'clock in the afternoon and didn't get home until 6:30 that evening. All to see the doctor for five minutes to tell him that the procedure worked, mostly, and to be told to follow up with my regular cardiologist (who is on my side of town). I could have phoned in. Oh, well.
I'm not complaining, mind you. In fact, this time I had an easier time recovering from the catheter than the last time. I had much less bruising and less pain overall which is a win in my book. I had lingering chest pain for about a week after the procedure. I was desperately afraid that it hadn't worked. Granted the pain wasn't as bad as it had been, but it was still at a level that I didn't think I could continue to live with.
After that first week, I began to feel better. It felt like a vice had loosened on my chest. I could breathe freely, and I hadn't even realized that I had felt restricted before. It was like being able to completely fill my lungs for the first time. I have times when I have no chest pain at all. Most of the time I feel anywhere from 50-80% better than I have in the last few years.
I have no idea if is there is anything else to be done. I have been told that I can now go and lead a normal life with no restrictions, even with a bunch of coils and a patch in my heart. Well, as normal as be expected considering the very abnormal situations I have been thrown into.
And that, my friends, is finally a solution that makes the journey worth fighting for.
Monday, September 29, 2014
Coiling Procedure in the Heart
On Wednesday I went in to have the coiling procedure that capped off the extra veins branching off one of the coronary arteries in my heart. I literally have tiny coils of wire or some other synthetic material blocking the flow of blood to my extra bits and pieces.
The way it was explained to me is that because my blood has been diverted to fill these extra vessels, there are parts of my heart that may not have been getting the right amount of oxygenated blood. Additionally, the internal blood pressure of my heart may have been compromised due to these extra vessels. Both of these things came about once the hole in my heart was repaired back in 2010. The hole was allowing the blood to flow more freely, not affecting the pressure of these vessels. Once the hole was closed these vessels started filling up more and more because blood was diverted a different way. The right way, but a different way. So granted I was now no longer throwing clots and having strokes, but now I was having chest pain and shortness of breath.
Fast forward four years, I am now lying on an operating room gurney awaiting my fate. I figure I have a 50/50 chance of this procedure giving me any relief. I had been warned that it may not work at all. I'm listening to all the beeps and whirs of the medical devices I am hooked up to. There is a selection of uplifting classical music playing, the doctor's personal preference. I am shivering slightly because it always cold in operating rooms. But I don't know what's more uncomfortable at the moment, the sub-zero temperature or the fact that everyone will be focusing on my groin for the next hour.
And then we begin.
I get a local anesthetic so the catheter can glide through. And it does, presumably. I'm talking to the doctor and then he shifts something near my hip and I nearly jump. It hurts! Really badly. I'm explaining to him that there's a pain spreading throughout my entire hip region, hip bone to my pelvis, and he's searching for the cause. Bear in mind that I've had a local so I can feel the pressure of his hands while he's palpitating but not really tell what he's doing.
After a moment he tells me that there are no blood clots and that I'm fine. I say that my hip is killing me and I feel like something warm is running down my leg. At this time, the nurse had decided to give me something to calm me down. I let her know that I'm calm I'm just in pain and if possible I'd like to be awake during the procedure. Finally, the doctor hits something and I let out a groan. That's the spot. He tries three more times to give me a local to numb the pain. The last thing I remember is him explaining that they had hit a nerve bundle in my hip and that was causing the pain. I was crying it hurt so bad.
When I woke up, I had been cleaned up and transferred back to a hospital bed. Before we left the room I asked if I could see the coils in my heart. It would probably be the only chance I would get to see it in Hi Definition on a flat screen TV. He showed me where they had put three coils in my poor abused heart, gave me a moment, and wheeled to my room and my husband.
This time around, I was told that they clamped off the femoral artery (the groin one) instead of applying pressure like the last time so I had to lie flat for 6-7 hours instead of 4 hours. It was horrible. I had to pee like nobody's business by the time I was allowed out of bed at one in the morning. Plus I had to stay overnight because they had to tinker with my ticker. But the stay was, all in all, not that bad. They did an excellent job at managing my hip pain, which was still pretty bad for the first 24 hours. After that it was the usual bruising from the procedure.
I was even a minor celebrity on the recovery floor. Most of the nurses had never heard of the procedure I had done. Others had heard of it, but I was their first patient. My doctor, the cardiac recovery specialist, only does three coiling procedures a year. If he's busy. I was also the youngest patient at the time on the recovery floor. They were sad to see me go, but didn't want me back. In fact, I was sleeping on my couch before my kids got home from school the next day.
So what is the result? I can't really say. I think it's too early to tell. I have moments I don't even think about my chest, which is amazing. But then, all of a sudden, it hurts. That all too familiar pain comes back and I try really hard not to get too upset about it, but it's hard not to. I can feel my heart beating throughout my whole body. It's the strangest feeling. It's like it is beating so hard, just trying to escape. I'm sure it has to do with my heart healing and getting used to actually working the way it is supposed to.
I'm hoping there will come a day that I won't even think about my heart anymore. Right now, all this concentration on it is making me feel like it's less a part of my body and more a part of some mad science experiment. I've got a patch and three coils floating around in there somewhere and it kind of creeps me out. I'm half afraid that the more we mess with it the more we'll mess it up. But the other half wants to just fix it already.
I follow up next Thursday with the doc. Guess we'll know more then.
The way it was explained to me is that because my blood has been diverted to fill these extra vessels, there are parts of my heart that may not have been getting the right amount of oxygenated blood. Additionally, the internal blood pressure of my heart may have been compromised due to these extra vessels. Both of these things came about once the hole in my heart was repaired back in 2010. The hole was allowing the blood to flow more freely, not affecting the pressure of these vessels. Once the hole was closed these vessels started filling up more and more because blood was diverted a different way. The right way, but a different way. So granted I was now no longer throwing clots and having strokes, but now I was having chest pain and shortness of breath.
Fast forward four years, I am now lying on an operating room gurney awaiting my fate. I figure I have a 50/50 chance of this procedure giving me any relief. I had been warned that it may not work at all. I'm listening to all the beeps and whirs of the medical devices I am hooked up to. There is a selection of uplifting classical music playing, the doctor's personal preference. I am shivering slightly because it always cold in operating rooms. But I don't know what's more uncomfortable at the moment, the sub-zero temperature or the fact that everyone will be focusing on my groin for the next hour.
And then we begin.
I get a local anesthetic so the catheter can glide through. And it does, presumably. I'm talking to the doctor and then he shifts something near my hip and I nearly jump. It hurts! Really badly. I'm explaining to him that there's a pain spreading throughout my entire hip region, hip bone to my pelvis, and he's searching for the cause. Bear in mind that I've had a local so I can feel the pressure of his hands while he's palpitating but not really tell what he's doing.
After a moment he tells me that there are no blood clots and that I'm fine. I say that my hip is killing me and I feel like something warm is running down my leg. At this time, the nurse had decided to give me something to calm me down. I let her know that I'm calm I'm just in pain and if possible I'd like to be awake during the procedure. Finally, the doctor hits something and I let out a groan. That's the spot. He tries three more times to give me a local to numb the pain. The last thing I remember is him explaining that they had hit a nerve bundle in my hip and that was causing the pain. I was crying it hurt so bad.
When I woke up, I had been cleaned up and transferred back to a hospital bed. Before we left the room I asked if I could see the coils in my heart. It would probably be the only chance I would get to see it in Hi Definition on a flat screen TV. He showed me where they had put three coils in my poor abused heart, gave me a moment, and wheeled to my room and my husband.
This time around, I was told that they clamped off the femoral artery (the groin one) instead of applying pressure like the last time so I had to lie flat for 6-7 hours instead of 4 hours. It was horrible. I had to pee like nobody's business by the time I was allowed out of bed at one in the morning. Plus I had to stay overnight because they had to tinker with my ticker. But the stay was, all in all, not that bad. They did an excellent job at managing my hip pain, which was still pretty bad for the first 24 hours. After that it was the usual bruising from the procedure.
I was even a minor celebrity on the recovery floor. Most of the nurses had never heard of the procedure I had done. Others had heard of it, but I was their first patient. My doctor, the cardiac recovery specialist, only does three coiling procedures a year. If he's busy. I was also the youngest patient at the time on the recovery floor. They were sad to see me go, but didn't want me back. In fact, I was sleeping on my couch before my kids got home from school the next day.
So what is the result? I can't really say. I think it's too early to tell. I have moments I don't even think about my chest, which is amazing. But then, all of a sudden, it hurts. That all too familiar pain comes back and I try really hard not to get too upset about it, but it's hard not to. I can feel my heart beating throughout my whole body. It's the strangest feeling. It's like it is beating so hard, just trying to escape. I'm sure it has to do with my heart healing and getting used to actually working the way it is supposed to.
I'm hoping there will come a day that I won't even think about my heart anymore. Right now, all this concentration on it is making me feel like it's less a part of my body and more a part of some mad science experiment. I've got a patch and three coils floating around in there somewhere and it kind of creeps me out. I'm half afraid that the more we mess with it the more we'll mess it up. But the other half wants to just fix it already.
I follow up next Thursday with the doc. Guess we'll know more then.
Friday, September 19, 2014
One More Heart Procedure
It seems as though I have one more heart procedure to go through before this long journey can (possibly) come to an end. As I mentioned after I had my heart catheter done, I have some extra veins branching off a main artery in my heart that may possibly be causing the chest pain I have been experiencing over the last four years. The only way to fix that is to do another catheter and to insert little coils into these veins to cap them off.
I had the consult with the specialist yesterday. He spoke to my husband and me very candidly and while he wants to be optimistic, he also wants us to be realistic and know that this may not work. All he can do is perform the surgery and hope for the best. Yes, this can be the reason for the discomfort. Yes, it could work. Yes, I could feel better very soon. But I also need to be aware that it may do nothing at all to alleviate the pain and shortness of breath.
And then we would be back to square one. And I would be devastated.
Thinking realistically, I thought, I have nothing to lose. It took me two years to find a doctor to even listen to me and believe me in the first place when I complained about chest pain and shortness of breath. It took another two years to find what was even a possible culprit. I feel satisfied with the answers I have been given as to my "condition" because of the pain I felt when my doctor was tinkering around inside of my heart during the heart cath, particularly when he got to the spot we are currently discussing. Furthermore, I have no better answers or options given to me. None of the medications have worked. And while I certainly don't want to go through this again, I see no better way towards a more productive life.
I don't know if you're the praying type or the good vibes type, but if you find yourself with nothing better to do on Wednesday, I good use some good juju. I'm nervous and scared and hopeful, but I'm finding it hard to be optimistic after being let down so many times. Not to mention that apparently, once again, I have the privilege of having something rare wrong with me so nobody seems to know much about what the outcome is going to be. Yea me.
I had the consult with the specialist yesterday. He spoke to my husband and me very candidly and while he wants to be optimistic, he also wants us to be realistic and know that this may not work. All he can do is perform the surgery and hope for the best. Yes, this can be the reason for the discomfort. Yes, it could work. Yes, I could feel better very soon. But I also need to be aware that it may do nothing at all to alleviate the pain and shortness of breath.
And then we would be back to square one. And I would be devastated.
Thinking realistically, I thought, I have nothing to lose. It took me two years to find a doctor to even listen to me and believe me in the first place when I complained about chest pain and shortness of breath. It took another two years to find what was even a possible culprit. I feel satisfied with the answers I have been given as to my "condition" because of the pain I felt when my doctor was tinkering around inside of my heart during the heart cath, particularly when he got to the spot we are currently discussing. Furthermore, I have no better answers or options given to me. None of the medications have worked. And while I certainly don't want to go through this again, I see no better way towards a more productive life.
I don't know if you're the praying type or the good vibes type, but if you find yourself with nothing better to do on Wednesday, I good use some good juju. I'm nervous and scared and hopeful, but I'm finding it hard to be optimistic after being let down so many times. Not to mention that apparently, once again, I have the privilege of having something rare wrong with me so nobody seems to know much about what the outcome is going to be. Yea me.
Saturday, August 2, 2014
The Truth About Heart Catheters
My cardiologist had been putting off doing a heart catheter on me because of the invasive nature of the procedure. I did my research. I knew what I was in for. I've been scoped, poked and prodded for the last four years. I've been accused of making up phantom pains and told I'm just seeking attention. And now I finally have a good doctor that is listening to me but he was putting off a procedure that could potentially diagnose my problem, so you could imagine how frustrated I was. So after trying all the heart medications he could think of and all the diagnostic tools he could think of, we were left with nothing but the heart catheter.
About ten days ago I went in for the procedure. The nurses were fantastic. Everything was explained perfectly. When I was taken back to the heart cath lab, I had the option of being put under twilight anesthesia or no anesthesia at all. I chose no anesthesia. Crazy? Maybe. But I had waited so long to find out what has been causing my chest pain that I wasn't going to miss a moment of this. And seeing as how it was going to be my cardiologist performing the heart catheter, I wanted to be fully aware when he discovered what was wrong.
And in they went. The catheter tube goes in through an artery in the groin, which gets numbed up with a local. It's a very odd feeling as the catheter finds its way up through your hip and your ribs to your heart. Though your veins and arteries have no nerve endings, you can kind of feel it 'knocking' around inside of you. (Sorry Dad. If you're reading this, you may want to skip ahead a few paragraphs.) Once it was in my heart I felt a lot of pressure. Now, I don't know if that's normal or not because of the issues that I have; this is just my experience.
Once inside my heart they were able to inject dye in order to act as a contrast to see the inner workings of my heart. With the dye the cardiologist was able to check for any blockages or further heart defects (I had previously had a hole repaired). What he found was pretty cool and I became the case of the month.
Coming off my right coronary artery are a bunch of extra blood vessels that don't belong there. I was born with them, apparently, but they didn't start causing me pain until after I had the hole in my heart repaired four years ago. Me and my crazy anatomy. They were able to conclude that these little guys were the culprit by injecting the dye in them more than once and hearing me openly complain about it more than once. I'm sure it's more scientific than that, but I'm going to go with that.
What's the solution? Well, we tried a beta-blocker drug for about ten days. That didn't work to relieve the pain. Now we're trying a calcium channel blocker. I have a follow up appointment in two weeks. If that doesn't work we have two more options before possibly resorting to another heart surgery. I'll stick with the drugs, thank you very much.
Recovery from the heart catheter was not exactly what I expected. The next day I was in a lot pain. I have had a lot of surgeries and this groin pain still reduced me to a whiny baby. Thank God my husband stayed home and literally did everything for me from fetching my Tylenol to making me a sammich. He's the best.
Incidentally, today is my anniversary. Four years STROKE FREE!
About ten days ago I went in for the procedure. The nurses were fantastic. Everything was explained perfectly. When I was taken back to the heart cath lab, I had the option of being put under twilight anesthesia or no anesthesia at all. I chose no anesthesia. Crazy? Maybe. But I had waited so long to find out what has been causing my chest pain that I wasn't going to miss a moment of this. And seeing as how it was going to be my cardiologist performing the heart catheter, I wanted to be fully aware when he discovered what was wrong.
And in they went. The catheter tube goes in through an artery in the groin, which gets numbed up with a local. It's a very odd feeling as the catheter finds its way up through your hip and your ribs to your heart. Though your veins and arteries have no nerve endings, you can kind of feel it 'knocking' around inside of you. (Sorry Dad. If you're reading this, you may want to skip ahead a few paragraphs.) Once it was in my heart I felt a lot of pressure. Now, I don't know if that's normal or not because of the issues that I have; this is just my experience.
Once inside my heart they were able to inject dye in order to act as a contrast to see the inner workings of my heart. With the dye the cardiologist was able to check for any blockages or further heart defects (I had previously had a hole repaired). What he found was pretty cool and I became the case of the month.
Coming off my right coronary artery are a bunch of extra blood vessels that don't belong there. I was born with them, apparently, but they didn't start causing me pain until after I had the hole in my heart repaired four years ago. Me and my crazy anatomy. They were able to conclude that these little guys were the culprit by injecting the dye in them more than once and hearing me openly complain about it more than once. I'm sure it's more scientific than that, but I'm going to go with that.
What's the solution? Well, we tried a beta-blocker drug for about ten days. That didn't work to relieve the pain. Now we're trying a calcium channel blocker. I have a follow up appointment in two weeks. If that doesn't work we have two more options before possibly resorting to another heart surgery. I'll stick with the drugs, thank you very much.
Recovery from the heart catheter was not exactly what I expected. The next day I was in a lot pain. I have had a lot of surgeries and this groin pain still reduced me to a whiny baby. Thank God my husband stayed home and literally did everything for me from fetching my Tylenol to making me a sammich. He's the best.
Incidentally, today is my anniversary. Four years STROKE FREE!
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| Stroke Free Anniversary Picture by Laura Romero |
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