I know this update has taken a while, but I had to do a lot of research before I could update this appropriately.
I had an appointment with my cardiologist on September 9th to review the results of my MRI. As I've already shared, the most important information that I received is that I am tumor free!! However, I did receive a lot of information on what's been going on with my heart at this appointment. Dr. A talked for quite some time about a congenital heart defect that I had and how it was affecting me. He referenced lots of pictures of hearts and talked a lot about veins and blood flow. I thought it was making sense at the time, but after the appointment I felt really lost. I obtained a copy of my MRI report from the hospital, did some research, and now feel like I understand what's going on. I was taken off of coumadin and put on a daily aspirin regimen.
I am missing the left superior pulmonary vein in my heart. It's a congenital heart defect called a partial anomalous pulmonary venous return with the absence of the left superior pulmonary vein. I found a terrific website the explains everything so clearly. In a nutshell, this is a defect that I was born with. It's considered very rare and is usually not discovered until adulthood. It doesn't cause problems until later in life when the part of the heart is being taxed too much.
Please check out this very simple website: http://www.pted.org/?id=papvr1
Here is the basic info from the website:
This rare defect, one or more of the pulmonary veins carries blood from the lung to the right side of the heart, rather than to the left atrium (LA) as in the normal heart.
The anomalous (abnormal) pulmonary vein or veins may be connected directly to the right atrium (RA). They may also be connected to one of the veins that carry oxygen-poor blood from the body to the right atrium, such as the inferior (IVC) or superior vena cava (SVC) (as shown in the diagram). There are many variations of this anomaly, which occurs in boys and girls with equal frequency.
This defect often remains undiagnosed during childhood, and even during adulthood. Later in life, however, symptoms may arise that make surgical repair necessary. These include dyspnea (breathlessness) in response to exertion, atrial arrhythmias (flutter or fibrillations), or, more rarely, right heart failure and pulmonary hypertension.
Adult patients who have not been operated on in childhood may need to undergo repair if right heart enlargement (dilalation) occurs. This will be recognized through a heart murmur or through echocardiography.
Overall this isn't the worst news. Dr. A thought this easily could have contributed to the TIA. Also, it explains why he thought there was a mass in my heart. Blood is mixing and my heart is being "pulled" creating the appearance of a tumor. Because the left vein is missing, it's causing stress on the right side of my heart. I will have a CT every year (as long as insurance approves it) to keep an eye on the pressure in my heart.
Here's why:
The right ventricular end diastolic volume index in the right chamber of my heart is 117.5mL/m2.
Normal is 60-88. The definition is the amount of blood pumped out of the heart per beat
Right Right ventricular end systolic volume index is 54.2mL/m2
Normal is 19-30. The definition is lowest volume of blood in the ventricle at any point in the cardiac cycle.
The left side of my heart is doing well.
Diastolic volume is 61.7 with normal being 50-84
Systolic volume is 24.3 with normal being 17-37
I know that's a lot of technical informaiton, but at least all of this explains what has been going on. I feel very relieved knowing what's happening with my heart and that I will be fine. I'm under the care of a cardiologist and if my heart ever gets too sressed, we'll know.
Thank you for all of your support over the last three months. Hopefully I won't have any more news to report for one full year.
Wednesday, September 21, 2011
Wednesday, August 31, 2011
MRI completed
I went in for my MRI yesterday. I took 1.5 mg of Ativan prior to the MRI. Thank goodness I did because I was in the tube for two and a half hours! I was very relaxed for the MRI and did a good job of following directions. I spent the entire time in the MRI holding my breath every 30 seconds or so. I would be told "breathe in and hold" and then could hear the MRI machine taking the images. I was able to have headphones on and listen to music while I was in the machine. It was actually fairly comfortable. About halfway through I was injected with dye via IV and they did more images.
The tech told me that the Radiologists would review my MRI and send the results to my doctor. I already have an appointment to go over the results on Friday September 9th at 4:15pm. I hate waiting!!! I am just not patient enough to wait over a week to find out if I have a tumor or if I just have a bulging wall or oddity in my valve.
I feel like if I actually make it to my September appointment the news will be good. If anything is wrong I think they'll call me in earlier. I am cautiously optimistic that on September 9th this whole fiasco will be over. I am hopeful that there is nothing seriously wrong with me. I can get off of the coumadin and move on with life. But I'm also prepared if the news is bad. I just want to know.
The tech told me that the Radiologists would review my MRI and send the results to my doctor. I already have an appointment to go over the results on Friday September 9th at 4:15pm. I hate waiting!!! I am just not patient enough to wait over a week to find out if I have a tumor or if I just have a bulging wall or oddity in my valve.
I feel like if I actually make it to my September appointment the news will be good. If anything is wrong I think they'll call me in earlier. I am cautiously optimistic that on September 9th this whole fiasco will be over. I am hopeful that there is nothing seriously wrong with me. I can get off of the coumadin and move on with life. But I'm also prepared if the news is bad. I just want to know.
Monday, August 15, 2011
3rd Echocardiogram
I went in for my 3rd echo today. It was very amusing!
I started with one sonographer who was searching for my mass and quickly found it. Then a second sonographer came in and they were discussing if they could find the mass, and which angles they could see it from, etc. They did this for about 15 minutes. Then Dr A came in and took over the echo with the techs still there. He ran the echo for about 30 minutes. He looked at the mass from all different angles. He and the techs were discussing the motion of the mass, how it related to my heart anatomy, etc. Dr A kept saying over and over "what is that? What is that?" He discussed how it could be part of my wall that has an odd thickness and is bulging, how it could be an odd part of my valve, or that it could be a mass. The good news is that he said it's not moving in the direction a myxoma usually moves. But they have no idea what it is.
After 45 minutes of watching my echo and listening to the doctor and techs talking he decided I should be sent for a Cardiac MRI. This has to be done at the hospital. He plans on giving my a medication to slow my heart rate to improve the pics. As far as the size goes, he didn't measure. He said he was more concerned about the location and movement in order to determine if he wants to send me for the MRI.
The hospital should be calling me in the next day or two to schedule the cardiac MRI. Hopefully after this MRI they can finally determine once and for all what the mass DEFINITELY is and what to do about it.
More waiting!!
I started with one sonographer who was searching for my mass and quickly found it. Then a second sonographer came in and they were discussing if they could find the mass, and which angles they could see it from, etc. They did this for about 15 minutes. Then Dr A came in and took over the echo with the techs still there. He ran the echo for about 30 minutes. He looked at the mass from all different angles. He and the techs were discussing the motion of the mass, how it related to my heart anatomy, etc. Dr A kept saying over and over "what is that? What is that?" He discussed how it could be part of my wall that has an odd thickness and is bulging, how it could be an odd part of my valve, or that it could be a mass. The good news is that he said it's not moving in the direction a myxoma usually moves. But they have no idea what it is.
After 45 minutes of watching my echo and listening to the doctor and techs talking he decided I should be sent for a Cardiac MRI. This has to be done at the hospital. He plans on giving my a medication to slow my heart rate to improve the pics. As far as the size goes, he didn't measure. He said he was more concerned about the location and movement in order to determine if he wants to send me for the MRI.
The hospital should be calling me in the next day or two to schedule the cardiac MRI. Hopefully after this MRI they can finally determine once and for all what the mass DEFINITELY is and what to do about it.
More waiting!!
The Cardiac MRI is scheduled for Tuesday August 30th.
Follow up appointment to review MRI results September 9th.
Follow up appointment to review MRI results September 9th.
Wednesday, August 10, 2011
Monday, August 8, 2011
Follow-Up w/ my Regular Cardiologist--A Positive Appointment
I had a follow-up appointment today. It was loooong, but rather uneventful and somewhat positive.
Dr A. was running 2 hours behind schedule. John came with me to my appointment and we waited a very long time, but Dr A was cheerful as usual. He asked how I'd been feeling and how things are going. I told him I feel great!
We discussed the fact that some of the other doctors are un-concerned about the mass on my heart. He did show my films to a few other doctors and they didn't know what the mass was, but initially didn't see it as well. Dr A said that he is still concerned and that he would rather be wrong than be unconcerned and miss anything. He had me repeat an echo cardiogram in office today. The mass was still there in the same place. The sonographer thought it was probably just a shadow, but what's the likelihood of there being a shadow in the same place on 2 echos and 1 TEE? Dr A wants me to come in for another echo cardiogram next week some time and Dr A will be present during the echo to guide the sonographer and try to get exactly what he wants. He wants a measurement of the mass and wants to compare that to the last measurements. Then if he is still concerned (which he believes he will be) he will schedule the iodine test, 3-D imaging of my heart, in one month.
Dr A did mention a few times that the mass could be nothing more than a bulging wall, or it could be something more serious (like a myxoma?). So more waiting it is. The only bad news is that my theory that this could be a thrombus, blood clot, is gone because if it was nothing more than a blood clot the mass would be gone now. Coumadin would have destroyed it. So we're back to a mystery mass in my heart, or a bulging wall.
Dr A. was running 2 hours behind schedule. John came with me to my appointment and we waited a very long time, but Dr A was cheerful as usual. He asked how I'd been feeling and how things are going. I told him I feel great!
We discussed the fact that some of the other doctors are un-concerned about the mass on my heart. He did show my films to a few other doctors and they didn't know what the mass was, but initially didn't see it as well. Dr A said that he is still concerned and that he would rather be wrong than be unconcerned and miss anything. He had me repeat an echo cardiogram in office today. The mass was still there in the same place. The sonographer thought it was probably just a shadow, but what's the likelihood of there being a shadow in the same place on 2 echos and 1 TEE? Dr A wants me to come in for another echo cardiogram next week some time and Dr A will be present during the echo to guide the sonographer and try to get exactly what he wants. He wants a measurement of the mass and wants to compare that to the last measurements. Then if he is still concerned (which he believes he will be) he will schedule the iodine test, 3-D imaging of my heart, in one month.
Dr A did mention a few times that the mass could be nothing more than a bulging wall, or it could be something more serious (like a myxoma?). So more waiting it is. The only bad news is that my theory that this could be a thrombus, blood clot, is gone because if it was nothing more than a blood clot the mass would be gone now. Coumadin would have destroyed it. So we're back to a mystery mass in my heart, or a bulging wall.
Monday, July 25, 2011
2nd Opinion Appointment
I went for my second opinion appointment today. Unfortunately I feel like I just wasted 3 hours of my time today.
My appointment today was with a very large group of cardiologists. My mom went with me to this appointment and when I walked in the door I was just overwhelmed. There were probably 50 people in the waiting room. It felt like I was at the DMV. I was called back 3 separate times to different windows to do different things--registration, signatures, check-in, history, etc. It was very factory-like. And I felt much too young to be there!! It felt like a senor's center, not a cardiologist's office. =)
When I was finally called back and the doctor came in, the doctor glanced over my medical records that I brought. I literally brought an entire binder full of records and the doctor just glanced through them. Dr. R was very polite, but just seemed kind of cold and un-concerned. He took my DVD that has a copy of my TEE on it and left the room. He returned about 10 minutes later and explained that he had to try a few computers before he could get the TEE to open.
Now I've opened this disc myself and it has about 30-45 videos of about 5-30 seconds each that can also be viewed frame by frame. My current cardiologist, Dr A, told me that when he initially viewed my TEE that he didn't see anything. He only saw the mass when he looked frame by frame. Dr R who I was seeing for a second opinion told me he didn't see anything at all and that it was probably only a shadow that Dr. A saw. Dr. R recommended that he do a TEE himself and that he could do it soon. He also said it was a fine plan for Dr. A to do another TEE in a few months as planned.
I would be thrilled if this was nothing more than a shadow that happened to show up in the same spot in both my echo and TEE. Or, as Dr R suggested, maybe it's just a blood clot. However, I don't feel convinced of much that Dr. R is saying simply because he spent maybe 5 minutes looking through 45 minutes worth of echos. I'm concerned that he didn't look long enough to really make sure there's nothing there. He didn't even see the "shadow". And then he recommends doing a TEE?? It just seems odd. And I felt like just a number in the bunch. And even worse I'm young and healthy looking compared to all of the other very elderly patients at the office--I think that leads to some bias. I just didn't get a good feeling at that office.
So here is my plan...hope for the best, plan for the worst!!
I'm going to stick with Dr A and do the TEE and 3D imaging in September. He knows what he's looking for in my heart and on the TEE. If Dr A is still concerned in September, then I'll go for another opinion at that time. Right now, I'm going to try and forget about everything and just relax. It MIGHT be absolutely nothing. Wouldn't it be great if this was all nothing more than a shadow or clot in my heart? I can't think of a better outcome! But if it's not, I would definitely rather be cautious and have a Dr. who seems to have my best interest at heart (excuse the pun) and treats me like a person.
I have a follow up appointment with Dr. A 2 weeks from today.
So my goal in the meantime---RELAX!!! I will stop researching this and go with the fact that the myxoma may not be a myxoma and stop worrying until the next tests are in.
My appointment today was with a very large group of cardiologists. My mom went with me to this appointment and when I walked in the door I was just overwhelmed. There were probably 50 people in the waiting room. It felt like I was at the DMV. I was called back 3 separate times to different windows to do different things--registration, signatures, check-in, history, etc. It was very factory-like. And I felt much too young to be there!! It felt like a senor's center, not a cardiologist's office. =)
When I was finally called back and the doctor came in, the doctor glanced over my medical records that I brought. I literally brought an entire binder full of records and the doctor just glanced through them. Dr. R was very polite, but just seemed kind of cold and un-concerned. He took my DVD that has a copy of my TEE on it and left the room. He returned about 10 minutes later and explained that he had to try a few computers before he could get the TEE to open.
Now I've opened this disc myself and it has about 30-45 videos of about 5-30 seconds each that can also be viewed frame by frame. My current cardiologist, Dr A, told me that when he initially viewed my TEE that he didn't see anything. He only saw the mass when he looked frame by frame. Dr R who I was seeing for a second opinion told me he didn't see anything at all and that it was probably only a shadow that Dr. A saw. Dr. R recommended that he do a TEE himself and that he could do it soon. He also said it was a fine plan for Dr. A to do another TEE in a few months as planned.
I would be thrilled if this was nothing more than a shadow that happened to show up in the same spot in both my echo and TEE. Or, as Dr R suggested, maybe it's just a blood clot. However, I don't feel convinced of much that Dr. R is saying simply because he spent maybe 5 minutes looking through 45 minutes worth of echos. I'm concerned that he didn't look long enough to really make sure there's nothing there. He didn't even see the "shadow". And then he recommends doing a TEE?? It just seems odd. And I felt like just a number in the bunch. And even worse I'm young and healthy looking compared to all of the other very elderly patients at the office--I think that leads to some bias. I just didn't get a good feeling at that office.
So here is my plan...hope for the best, plan for the worst!!
I'm going to stick with Dr A and do the TEE and 3D imaging in September. He knows what he's looking for in my heart and on the TEE. If Dr A is still concerned in September, then I'll go for another opinion at that time. Right now, I'm going to try and forget about everything and just relax. It MIGHT be absolutely nothing. Wouldn't it be great if this was all nothing more than a shadow or clot in my heart? I can't think of a better outcome! But if it's not, I would definitely rather be cautious and have a Dr. who seems to have my best interest at heart (excuse the pun) and treats me like a person.
I have a follow up appointment with Dr. A 2 weeks from today.
So my goal in the meantime---RELAX!!! I will stop researching this and go with the fact that the myxoma may not be a myxoma and stop worrying until the next tests are in.
Wednesday, July 13, 2011
Great appointment with my PCP
I had an excellent appointment with my Primary Care Provider (PCP) today! Here are a few things we discussed:
- She agrees with the neurologists that my admission to the ER was more than likely a complicated migraine. She reminded me that migraines frequently do not involve headaches and that ALL of my symptoms correlate with that of a complicated migraine
- She called me a "Red Herring". She explained that this means although I was admitted to the hospital for one thing (TIA) what they found was even more important--the mass on my heart
- She told me I don't have to continue to follow up with any more neurologists unless I experience any more migraine like symptoms. She said I may never again have these symptoms or they might occur regularly or sporadically
- She told me to stay on Coumadin. She also said once I have a few weeks in a row of good INR readings I can switch to blood draws every 2 weeks, then once a month.
- She suggested that I seek a second opinion from a cardiologist outside of my Doctor's group. She told me that she has a great respect for my cardiologist and feels he's doing a great job, but with something so serious it's excellent to have a second opinion from a different group of doctors. Sounds great to me!!
- She told me that if I am scheduled for heart surgery to seek opinions from at least 2-3 heart surgeons before scheduling
Monday, July 11, 2011
My Own Research
So I've been doing some research this week and here are two things that I have found:
- I have found many cases of people diagnosed with small atrial myxomas that actually turned out to be a thrombus (blood clot). My doctor won't officially diagnose me with a myxoma as of yet, so that gives me hope that he might still have a small part of him that wonders if this could be a thrombus instead. I won't get my hopes up too much, but I do like to know that this is a possibility.
- I've been reading up on these complicated migraines--aura migraines. From what I've read they are almost identical in initial symptoms as a TIA and many doctors have a hard time, if not impossible time, in differentiating between this type of migraine and a TIA. This type of migraine often doesn't even involve a headache at all. I'm still reading up on these, but it's certainly interesting that no one my never really know if I had a TIA or an aura migraine.
Friday, July 8, 2011
Feeling Better Today
I called my PCP today and also called a Health Coach through my insurance company to discuss the contradictory information that was given to me regarding my Coumadin. Both my PCP and the health coach highly recommended that I stay on Coumadin and listen to my cardiologist. They both said that only my cardiologist can decide what is safest for me regarding my heart. And at this point it doesn't matter whether I was admitted to the hospital with stroke or complicated migraine, there is a mass on my heart and that's why I'm on the Coumadin.
The health coach even said that it sounds like I have a great cardiologist if he was talking about getting second and third opinions on the myxoma without me even asking.
I'm feeling much more calm now. These neurologists were beginning to make me think that my cardiologist was crazy.
The health coach even said that it sounds like I have a great cardiologist if he was talking about getting second and third opinions on the myxoma without me even asking.
I'm feeling much more calm now. These neurologists were beginning to make me think that my cardiologist was crazy.
Thursday, July 7, 2011
Pulling My Hair Out!! Neruo Appointment Today
July 7th, 2011
I had a neurologist appointment today. It was a follow up from the hospital. I feel like pulling my hair out now I'm so frustrated. Here's what happened:
The Neurologist called me into his office to chat. He reviewed my MRA and MRI of my brain that I brought on DVD. I also brought about a 75 page stack of paperwork from the hospital with doctor comments, notes and diagnoses. He did a quick review of the DVD and then talked to me about why I went to the ER on June 23rd. After chatting with me for a few minutes he told me that he strongly believes that I had a complicated migraine, not a TIA. He told me that there may or may not be a heart issue, but that I should NOT be on Coumadin. He stressed how dangerous coumadin is and that I didn't have a TIA, so it would be unnecessary. I am usually a very non-confrontational person, but I did get a little snippy with him and told him that maybe he and the other doctors should get together and make up their minds! I cannot have one doctor telling me to take Coumadin or risk a massive stroke, get discharged from the hospital with TIA written as my diagnosis, and then have other doctors telling me to get off Coumadin and that I didn't have a stroke. Make up your damned minds!! The neurologist recommends I get a second opinion from another cardiologist. I totally agree with second opinions--My cardiologist was already sending my films off to other cardiologists for second and third opinions on the myxoma. The neurologist told me several times that he doesn't want me on Coumadin, but it's my choice. Sorry, but I'm going to listen to the Cardiologist on this one. If my heart doctor who HAS seen my TEE films and my echo tells me that the myxoma puts me at high risk for stroke, I'm going to take his word. This neurologist hasn't seen my TEE films or my echo. So how can he tell me to get off of Coumadin.
And now, really, did I have a TIA or not? The neurologist did say that even though he thinks I only had a complicated migraine and not a TIA, he still believes that I should see a different cardiologist and make sure that I don't actually have a myxoma.
I just don't understand how two different neurologists can tell me that there's probably nothing wrong with my heart when they haven't even seem my TEE results. And reading TEE results isn't their specialty, so why are they telling me what to do when it comes to my heart health?!
My plan is to call my cardiologist in the morning and see what they have to say about this. I am finding this entire thing to be incredibly frustrating. It's quite the roller coaster to have one doctor tell me I have a heart tumor and will need surgery and then another one tell me the next day I'm fine.
Grrrrr.
The one thing that made me feel a bit better is what my dad told me today: the more complicated the case the more varied opinions from doctors that I'm going to have. I just have to accept that fact now and not let them get to me. And then John said something that made sense too---If I was a 60 year old overweight woman would the neurologists be saying anything different, or are they biased because I am young and healthy?
I had a neurologist appointment today. It was a follow up from the hospital. I feel like pulling my hair out now I'm so frustrated. Here's what happened:
The Neurologist called me into his office to chat. He reviewed my MRA and MRI of my brain that I brought on DVD. I also brought about a 75 page stack of paperwork from the hospital with doctor comments, notes and diagnoses. He did a quick review of the DVD and then talked to me about why I went to the ER on June 23rd. After chatting with me for a few minutes he told me that he strongly believes that I had a complicated migraine, not a TIA. He told me that there may or may not be a heart issue, but that I should NOT be on Coumadin. He stressed how dangerous coumadin is and that I didn't have a TIA, so it would be unnecessary. I am usually a very non-confrontational person, but I did get a little snippy with him and told him that maybe he and the other doctors should get together and make up their minds! I cannot have one doctor telling me to take Coumadin or risk a massive stroke, get discharged from the hospital with TIA written as my diagnosis, and then have other doctors telling me to get off Coumadin and that I didn't have a stroke. Make up your damned minds!! The neurologist recommends I get a second opinion from another cardiologist. I totally agree with second opinions--My cardiologist was already sending my films off to other cardiologists for second and third opinions on the myxoma. The neurologist told me several times that he doesn't want me on Coumadin, but it's my choice. Sorry, but I'm going to listen to the Cardiologist on this one. If my heart doctor who HAS seen my TEE films and my echo tells me that the myxoma puts me at high risk for stroke, I'm going to take his word. This neurologist hasn't seen my TEE films or my echo. So how can he tell me to get off of Coumadin.
And now, really, did I have a TIA or not? The neurologist did say that even though he thinks I only had a complicated migraine and not a TIA, he still believes that I should see a different cardiologist and make sure that I don't actually have a myxoma.
I just don't understand how two different neurologists can tell me that there's probably nothing wrong with my heart when they haven't even seem my TEE results. And reading TEE results isn't their specialty, so why are they telling me what to do when it comes to my heart health?!
My plan is to call my cardiologist in the morning and see what they have to say about this. I am finding this entire thing to be incredibly frustrating. It's quite the roller coaster to have one doctor tell me I have a heart tumor and will need surgery and then another one tell me the next day I'm fine.
Grrrrr.
The one thing that made me feel a bit better is what my dad told me today: the more complicated the case the more varied opinions from doctors that I'm going to have. I just have to accept that fact now and not let them get to me. And then John said something that made sense too---If I was a 60 year old overweight woman would the neurologists be saying anything different, or are they biased because I am young and healthy?
Wednesday, July 6, 2011
A pic of a Left Atrial Myxoma
I found a great illustration of what the Dr. thinks I have. The myxoma the Dr thinks I have starts more with a stem with the tumor blob (like my fancy medical terminology?) on the end than in this pic, but the location is the same. This helps to see how the tumor is IN my heart, but is still easily accessible. Enjoy!
Left atrial myxoma
A myxoma is a benign tumor in the heart most commonly found in the left atrium. About 75% of myxomas are in the left atrium, usually beginning in the wall that divides the lower chambers of the heart (ventricles) and growing into the atrium. Treatment is necessary to avoid metastasis and the formation of clots. In addition, untreated growth of the tumor can obstruct blood flow through the heart. Myxomas are curable with surgical removal.
Review Date: 6/1/2010.
Reviewed by: Issam Mikati, MD, Associate Professor of Medicine, Feinberg School of Medicine, Director, Northwestern Clinic Echocardiography Lab, Northwestern University, Chicago, IL. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
Review Date: 6/1/2010.
Reviewed by: Issam Mikati, MD, Associate Professor of Medicine, Feinberg School of Medicine, Director, Northwestern Clinic Echocardiography Lab, Northwestern University, Chicago, IL. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
Tuesday, July 5, 2011
From the Beginning
Hi, Everyone!
I'm writing this blog as a way to keep everyone informed and make sure that my information is shared accurately. If you have any questions, just let me know!
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From the beginning....
I have always been a pretty healthy person. Yes, I get sick sometimes, but I've never had anything significant. However, on June 23rd, my husband John's birthday, that changed. Here is what happened:
June 23rd, 2011
John wanted to go out to dinner for his birthday. So around 4:30pm we all piled in the cart to head out to dinner. Now the next hour or two are a bit fuzzy, so I'll tell you what I remember. John started driving and we were discussing where to go for dinner. John told me to pick a restaurant. I started feeling very off and a bit confused. I tried to think of somewhere to eat, but couldn't think of anything at all. I couldn't think of the name of a single restaurant. John then suggested we eat at Red Robin. Red Robin is my absolute favorite restaurant. But when he asked me, I truly had no idea what Red Robin was. I remember being very frustrated that he was asking me to go somewhere that I had never heard of and was getting mad at me for not knowing what this restaurant was. The kids were cranky and now I was acting strange, so John decided to to through a drive thru instead. We went to Taco Bell and John asked me what I wanted. I was trying to explain to him that I wanted a drink for Kira, but I couldn't think of the word "cup" or Kira's name. At this point I was getting very confused. I don't even remember John ordering anything there. We then drove to McDonalds to get the kids some happy meals. The only think I recall from this drive thru is being very frustrated that John and the employees weren't speaking English. I couldn't understand anything anybody was saying. However, I couldn't tell John how confused I was. When we got home I was extremely tired and John had me go lay down. By this point I was also having some vision problems. I was having a hard time seeing out of my right eye. It was like I had a blind spot on my right eye. I laid down for a little bit and about 30 minutes later or so I called John in because I couldn't feel the right side of my face or my entire right arm and hand. It wasn't like they were asleep, they were numb. It was as if someone had injected Novocaine in my face and in my entire arm. At that time, John told me he was taking me to the ER. I told him there was no way I was going to the ER. My mind was a bit more clear by now, but I was definitely still fuzzy. My neighbor came over to watch the kids and between her and John they convinced me to go.
Once we got to the ER, it was packed and I was even more frustrated at being at the ER. Once John told them my symptoms, they took me back immediately. I was immediately given a CT, chest x-ray and EKG. I had a ton of doctors looking at me and talking with me. They told me they thought I had a TIA or transient ischemic attack. It's basically a mini stroke. This stroke is where there was a blood clot that traveled to my brain, but that my body did it's job and dissolved it. I was quickly admitted to the hospital with a slew of tests scheduled for the next day.
June 24th, 2011
I "woke" up in the hospital this morning. I say "woke" because I never really got any real sleep. Hospitals are NOT restful places. I was hooked up to cardiac monitors and was bothered all night long. Today I was scheduled for:
That night at about 11:30pm my cardiologist walked into my room and flipped on the light.
Talk with the Cardiologist....June 24th/June 25th
The cardiologist woke me up because he had a concern about my echo cardiogram. It took me a few minutes to really wake up and understand the gravity of what he was telling me. The cardiologist was explaining that there was an abnormality on my echo cardiogram. He said that there appeared to be a mass on the left wall of my heart. However, because I am so thin, it was possible it was just a shadow from my ribs. He wanted to perform a transesophogeal echocardiogram (TEE) in the morning. This is a procedure where they put a tube with ultrasound machine on the end of it down my esophagus and take a new echo from inside. This should prevent any shadows. The Dr. encouraged me to call my husband right now to discuss it with him. I called John at about 11:45pm to discuss this with him. He was pretty groggy from two sleepless nights with the kids! I didn't get to discuss much, but I made plans for the TEE at 11:30am and called it a night. Some night, though! I was so stressed out I barely slept at all.
June 25th, 2011
This morning was the TEE. I was cranky and tired. I hadn't had anything to eat or drink since about 7pm the night before and wasn't going to be allowed to eat until about 2pm or so. John came in to see me at about 10am this morning along with my step-dad, brother, sister-in law and niece. Oh, and did I mention we had plans to go to Prescott, AZ for a wedding today? We had been looking forward to this for a loooong time. Anyway, they came in to start setting up around 11am. They gave me phentynol and valuum. I also gargled with some awful, thick "mouthwash" that was supposed to numb my throat. I don't remember much except trying to tell the doctors during the procedure that the tube was hurting. Of course, no one could understand. And I DO remember throwing up on doctor. LOL. That's what happens when you shove instruments down some one's throat! I recall being very groggy and asking John how thing went. I THOUGHT he said everything looked fine.
Hours after the procedure and when I was a bit less groggy the cardiologist came back in to talk to me about the results. There was STILL something on my heart. There was a mass that was visible on the left wall of my heart. He was calling it an atrial mass at this point. This was very stressful, but I was so sleepy I was too tired to be stressed. I was starving and thirsty, but my throat was killing me at this point. It hurt to talk and to swallow. I was cranky, sore, and tired. John brought me some delicious soup from Souper Salad and he stayed with me until bedtime that night. I was also started on the evil Lovenox injections that night. I was told that I needed these injections to prevent me from any further blood clots. These were extremely painful!
June 26th, 2011
I thought this was the day I was going home. I was done with my tests. I had been on cardiac monitors non-stop and was fine. I felt great other than being very sore from the Lovenox shots and having a very painful throat from the TEE. I had passed every test except with my abnormal TEE results. The only thing that was preventing me from going home at this point was my injections. I was on twice a day Lovenox injections and they are VERY expensive. My insurance had denied these at this point. John came in to talk with the doctors, nurses and staff to see what could be done about getting me discharged. The director worked very hard, but being that it was a Sunday, I couldn't be discharged because my meds were still not approved. So John brought Isaac to visit me in the hospital. We had a great time! He played with my bed, snuggled with me, and we walked around the hospital floor. Kira was too freaked out to visit again, but that was ok.
June 27th, 2011
Today was the day...I was going home! At about 10am I received a call from Walgreens that my prescriptions were ready to be picked up. Everything had finally been approved!! I anxiously waited to be discharged, but I wasn't released until 5pm. Grrrrr. But I was free and I was thrilled! I was released on twice a day Lovenox injections, Coumadin daily, aspirin daily and Lipitor as well. I was told to follow up with a neurologist in 2 weeks, cardiologist in 1 week and family doctor in 2-3 weeks.
Being out of the hospital was amazing. I was sooo excited to be with my kids again. I missed them like crazy. And there is nothing like sleeping in your own bed.
June 28th-July 4th, 2011
It was taking me some time to get recovered. I was still so exhausted and sore. The Lovenox injections were painful and I couldn't even wear regular pants or shorts anymore with all of my bruises. However, on the 31st my INR levels were finally high enough. An INR level is a measure of your blood coagulation. Doctors want my blood nice and thin. The Lovenox was there to protect me as an instant blood thinner until the Coumadin was built up in my system. Now that the coumadin was built up, I can continue on daily coumadin and discontinue the Lovenox. I will be going for weekly blood draws to check my INR levels. This is typical of anyone on Coumadin.
July 5th, 2011
The Initial Diagnosis
After a great 4th of July, it was time to head back to reality and go to my cardiologist today. I was armed with a lot of questions after having time to absorb all of the information that I had received.
I had a 1pm appointment today. They started me off with an instantaneous INR reading done with nothing more than a pin prick and an INR reading machine. It was so much easier than doing a blood draw! My INR was great at a 2.4 My ideal INR is a 2.5, but anything between 2 and 3 is acceptable. So I'm doing great there. I was then hooked up to a machine to get a quick EKG reading. Then the Dr. came in to talk with me.
We talked for a long time. The Dr. took me into his office to spend about 30 minutes with me showing me my TEE films along with the original echo. He showed me where the mass was and talked to me for a long time about it. So here it is...it's an atrial myxoma, that's fancy talk for heart tumor. Never in a million years did I think I would be sitting in a cardiologist's office at 31 years old after feeling fully healthy all of my life being told I have a tumor in my heart. The good news is that it can be operated on. And no, I don't know at this time whether it will be an open heart surgery or done laproscopically. At this point, I'm just stressed out about the idea of having heart surgery at such a young age with 2 kids to raise. The plan of attack is to wait three months and repeat the TEE. At that time I will also have a more advanced test done to give a 3D image of the myxoma. The Dr. is going to see if my insurance will cover an iodine test where they inject me with iodine and get a great image of my heart. If not, I can still get an MRA done and get an even better picture. At that point, we'll discuss if the mass has changed size at all and how surgery will be performed. The cardiologist is hesitant to give me a firm diagnosis until he gets to see more tests. He kept telling me what an interesting case I am. It's so rare to find a myxoma this early on. Usually people only find out they have a myxoma when it's too late. I am so lucky to have had the TIA and that John made me go to the ER,.
The Dr showed me in a LOT of pictures what they myxoma looks like on my films. It looks like a finger with a big blob on the end. Apparently this is called a stalk and is typical of a myxoma. It kind of flows or moves back and forth with the beating of my heart. I asked the Dr. to write down how to spell "myxoma" and he told me whatever I do, don't Google it when I get home. And of course I did! LOL There is some scary stuff out there, so maybe I shouldn't have looked it up online, but I can't help it.
So the plan is to go see the Cardiologist every month until October when I'll get another TEE and a dye test of my heart. Then we'll discuss surgical options. Until then, I'm on coumadin every day and go for blood work every week. I'll also be seeing a neurologist soon to discuss my TIA.
I plan on updating this blog only when I have news to report. Hopefully there won't be any news for another month, but if I have anything new to share I'll be sure to post. If you have any questions on anything feel free to ask!
I'm writing this blog as a way to keep everyone informed and make sure that my information is shared accurately. If you have any questions, just let me know!
From the beginning....
I have always been a pretty healthy person. Yes, I get sick sometimes, but I've never had anything significant. However, on June 23rd, my husband John's birthday, that changed. Here is what happened:
June 23rd, 2011
John wanted to go out to dinner for his birthday. So around 4:30pm we all piled in the cart to head out to dinner. Now the next hour or two are a bit fuzzy, so I'll tell you what I remember. John started driving and we were discussing where to go for dinner. John told me to pick a restaurant. I started feeling very off and a bit confused. I tried to think of somewhere to eat, but couldn't think of anything at all. I couldn't think of the name of a single restaurant. John then suggested we eat at Red Robin. Red Robin is my absolute favorite restaurant. But when he asked me, I truly had no idea what Red Robin was. I remember being very frustrated that he was asking me to go somewhere that I had never heard of and was getting mad at me for not knowing what this restaurant was. The kids were cranky and now I was acting strange, so John decided to to through a drive thru instead. We went to Taco Bell and John asked me what I wanted. I was trying to explain to him that I wanted a drink for Kira, but I couldn't think of the word "cup" or Kira's name. At this point I was getting very confused. I don't even remember John ordering anything there. We then drove to McDonalds to get the kids some happy meals. The only think I recall from this drive thru is being very frustrated that John and the employees weren't speaking English. I couldn't understand anything anybody was saying. However, I couldn't tell John how confused I was. When we got home I was extremely tired and John had me go lay down. By this point I was also having some vision problems. I was having a hard time seeing out of my right eye. It was like I had a blind spot on my right eye. I laid down for a little bit and about 30 minutes later or so I called John in because I couldn't feel the right side of my face or my entire right arm and hand. It wasn't like they were asleep, they were numb. It was as if someone had injected Novocaine in my face and in my entire arm. At that time, John told me he was taking me to the ER. I told him there was no way I was going to the ER. My mind was a bit more clear by now, but I was definitely still fuzzy. My neighbor came over to watch the kids and between her and John they convinced me to go.
Once we got to the ER, it was packed and I was even more frustrated at being at the ER. Once John told them my symptoms, they took me back immediately. I was immediately given a CT, chest x-ray and EKG. I had a ton of doctors looking at me and talking with me. They told me they thought I had a TIA or transient ischemic attack. It's basically a mini stroke. This stroke is where there was a blood clot that traveled to my brain, but that my body did it's job and dissolved it. I was quickly admitted to the hospital with a slew of tests scheduled for the next day.
June 24th, 2011
I "woke" up in the hospital this morning. I say "woke" because I never really got any real sleep. Hospitals are NOT restful places. I was hooked up to cardiac monitors and was bothered all night long. Today I was scheduled for:
- MRI and MRA of my brain
- ultrasounds of my neck
- echocardiogram
That night at about 11:30pm my cardiologist walked into my room and flipped on the light.
Talk with the Cardiologist....June 24th/June 25th
The cardiologist woke me up because he had a concern about my echo cardiogram. It took me a few minutes to really wake up and understand the gravity of what he was telling me. The cardiologist was explaining that there was an abnormality on my echo cardiogram. He said that there appeared to be a mass on the left wall of my heart. However, because I am so thin, it was possible it was just a shadow from my ribs. He wanted to perform a transesophogeal echocardiogram (TEE) in the morning. This is a procedure where they put a tube with ultrasound machine on the end of it down my esophagus and take a new echo from inside. This should prevent any shadows. The Dr. encouraged me to call my husband right now to discuss it with him. I called John at about 11:45pm to discuss this with him. He was pretty groggy from two sleepless nights with the kids! I didn't get to discuss much, but I made plans for the TEE at 11:30am and called it a night. Some night, though! I was so stressed out I barely slept at all.
June 25th, 2011
This morning was the TEE. I was cranky and tired. I hadn't had anything to eat or drink since about 7pm the night before and wasn't going to be allowed to eat until about 2pm or so. John came in to see me at about 10am this morning along with my step-dad, brother, sister-in law and niece. Oh, and did I mention we had plans to go to Prescott, AZ for a wedding today? We had been looking forward to this for a loooong time. Anyway, they came in to start setting up around 11am. They gave me phentynol and valuum. I also gargled with some awful, thick "mouthwash" that was supposed to numb my throat. I don't remember much except trying to tell the doctors during the procedure that the tube was hurting. Of course, no one could understand. And I DO remember throwing up on doctor. LOL. That's what happens when you shove instruments down some one's throat! I recall being very groggy and asking John how thing went. I THOUGHT he said everything looked fine.
Hours after the procedure and when I was a bit less groggy the cardiologist came back in to talk to me about the results. There was STILL something on my heart. There was a mass that was visible on the left wall of my heart. He was calling it an atrial mass at this point. This was very stressful, but I was so sleepy I was too tired to be stressed. I was starving and thirsty, but my throat was killing me at this point. It hurt to talk and to swallow. I was cranky, sore, and tired. John brought me some delicious soup from Souper Salad and he stayed with me until bedtime that night. I was also started on the evil Lovenox injections that night. I was told that I needed these injections to prevent me from any further blood clots. These were extremely painful!
June 26th, 2011
I thought this was the day I was going home. I was done with my tests. I had been on cardiac monitors non-stop and was fine. I felt great other than being very sore from the Lovenox shots and having a very painful throat from the TEE. I had passed every test except with my abnormal TEE results. The only thing that was preventing me from going home at this point was my injections. I was on twice a day Lovenox injections and they are VERY expensive. My insurance had denied these at this point. John came in to talk with the doctors, nurses and staff to see what could be done about getting me discharged. The director worked very hard, but being that it was a Sunday, I couldn't be discharged because my meds were still not approved. So John brought Isaac to visit me in the hospital. We had a great time! He played with my bed, snuggled with me, and we walked around the hospital floor. Kira was too freaked out to visit again, but that was ok.
June 27th, 2011
Today was the day...I was going home! At about 10am I received a call from Walgreens that my prescriptions were ready to be picked up. Everything had finally been approved!! I anxiously waited to be discharged, but I wasn't released until 5pm. Grrrrr. But I was free and I was thrilled! I was released on twice a day Lovenox injections, Coumadin daily, aspirin daily and Lipitor as well. I was told to follow up with a neurologist in 2 weeks, cardiologist in 1 week and family doctor in 2-3 weeks.
Being out of the hospital was amazing. I was sooo excited to be with my kids again. I missed them like crazy. And there is nothing like sleeping in your own bed.
June 28th-July 4th, 2011
It was taking me some time to get recovered. I was still so exhausted and sore. The Lovenox injections were painful and I couldn't even wear regular pants or shorts anymore with all of my bruises. However, on the 31st my INR levels were finally high enough. An INR level is a measure of your blood coagulation. Doctors want my blood nice and thin. The Lovenox was there to protect me as an instant blood thinner until the Coumadin was built up in my system. Now that the coumadin was built up, I can continue on daily coumadin and discontinue the Lovenox. I will be going for weekly blood draws to check my INR levels. This is typical of anyone on Coumadin.
July 5th, 2011
The Initial Diagnosis
After a great 4th of July, it was time to head back to reality and go to my cardiologist today. I was armed with a lot of questions after having time to absorb all of the information that I had received.
I had a 1pm appointment today. They started me off with an instantaneous INR reading done with nothing more than a pin prick and an INR reading machine. It was so much easier than doing a blood draw! My INR was great at a 2.4 My ideal INR is a 2.5, but anything between 2 and 3 is acceptable. So I'm doing great there. I was then hooked up to a machine to get a quick EKG reading. Then the Dr. came in to talk with me.
We talked for a long time. The Dr. took me into his office to spend about 30 minutes with me showing me my TEE films along with the original echo. He showed me where the mass was and talked to me for a long time about it. So here it is...it's an atrial myxoma, that's fancy talk for heart tumor. Never in a million years did I think I would be sitting in a cardiologist's office at 31 years old after feeling fully healthy all of my life being told I have a tumor in my heart. The good news is that it can be operated on. And no, I don't know at this time whether it will be an open heart surgery or done laproscopically. At this point, I'm just stressed out about the idea of having heart surgery at such a young age with 2 kids to raise. The plan of attack is to wait three months and repeat the TEE. At that time I will also have a more advanced test done to give a 3D image of the myxoma. The Dr. is going to see if my insurance will cover an iodine test where they inject me with iodine and get a great image of my heart. If not, I can still get an MRA done and get an even better picture. At that point, we'll discuss if the mass has changed size at all and how surgery will be performed. The cardiologist is hesitant to give me a firm diagnosis until he gets to see more tests. He kept telling me what an interesting case I am. It's so rare to find a myxoma this early on. Usually people only find out they have a myxoma when it's too late. I am so lucky to have had the TIA and that John made me go to the ER,.
The Dr showed me in a LOT of pictures what they myxoma looks like on my films. It looks like a finger with a big blob on the end. Apparently this is called a stalk and is typical of a myxoma. It kind of flows or moves back and forth with the beating of my heart. I asked the Dr. to write down how to spell "myxoma" and he told me whatever I do, don't Google it when I get home. And of course I did! LOL There is some scary stuff out there, so maybe I shouldn't have looked it up online, but I can't help it.
So the plan is to go see the Cardiologist every month until October when I'll get another TEE and a dye test of my heart. Then we'll discuss surgical options. Until then, I'm on coumadin every day and go for blood work every week. I'll also be seeing a neurologist soon to discuss my TIA.
I plan on updating this blog only when I have news to report. Hopefully there won't be any news for another month, but if I have anything new to share I'll be sure to post. If you have any questions on anything feel free to ask!
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