Ranexa

So the last time I went to the doctor I realized that I hadn't been journaling my chest pain and activity level, which tends to be a huge help when I go in to see her. So I will try to recommit myself. Unfortunately I hate being negative and it feels as if that is all the news I have to give.

My last visit to the doctor's was great. I get around my doctor's and feel so secure. They remind me that I am receiving the best care...far better advice than my previous cardiologist that told me I was beyond his scope of practice, so this is reassuring. Leading up to this appointment I was getting more symptomatic and discouraged. In my appointment I mentioned that I was having daily chest pain, that I would rate a 5. As a result they prescribed me a new drug Ranexa, it is supposed to help people with chronic angina without affecting heart rate or blood pressure (a great thing). Unfortunately the drug is still under patent, which translates into expensive!! Despite that sad news I have been on this pill for about 2 weeks (I wasn't taking it quite right at the beginning). It really has seemed to help. My daily pain tends to be faint until the drug starts to wear off mid-day, when I need to take another dose (in the beginning I was taking it right before I went to bed...the dreams I was having were crazy!! I felt like I had lived out another day by the time I woke up in the morning!) Anyway the drug seemed to be doing wonders until yesterday, let's hope that this is only a small hiccup. It has been 2 days where my nitro has really come in handy. The doctor's have expressed their excitement that I haven't had another heart attack and that I am still alive so the medication is doing its job. I, on the other hand, have always viewed meds as a bad thing and have wanted to cut back, apparently I didn't take into account all they were preventing. I will continue to dream of days sans meds.

I am back to 10 hour nights. This really seems to help me throughout the day but is hard for an active little boy, result = not time with the hubby:(. I have been loving the sleep though!! I can hardly believe I sleep as long as I do. I never understood how my brother could sleep well into the afternoon, mind you I still cannot do this but I can easily sleep from 9:30-7:30 and still want to stay cuddled up in bed!!

Another small note, the doctor's are still very persistent that I need to keep exercising, which is a good thing. I have lost a bit of my drive but at least I know I need it. Apparently with a large aneurysm you are at 2x the risk of developing atherosclerosis (hardening of the arteries) and exercise is the best way to keep forcing them to contract and dilate...in other words force them to move so they can't stop working!

In Need of More Answers

So last week was another week of consistent chest pain. This meant more nitroglycerine and a little more confusion. At least I made one discovery...based on research, a woman's menstrual cycle has a direct effect on the amount of chest pain and how quick ischemia (lack of blood flow to the heart) onsets. They said that is why a woman's risk for angina and heart related issues dramatically increases when a woman hits 55 (the hormonal changes). Maybe it is only a fascinating discovery for me...but I appreciate learning something new. I starting realizing some of the rythmic nature of my more constant chest pain and eventually started raiding the internet.
Another small opportunity has presented itself. The Director of women's heart health at the Cooper Clinic in Dallas has asked to look over my recordsand meet with me. She specializes in dealing with athletes, but she also specializes in non-invasize cardiology. Possibly not perfect but I am not at the point of turning away opinions and help. Otherwise I was referred to the Cleveland Clinic's Heart Institute, they have been #1 in the nation for the past 15 yrs, which is nice but also a huge trip expense etc.
Over the past month I have been more and more interested in the surgery option. Unfortunately that option is extremely risky and very invasive...not exciting. So as for now, unless it becomes a necessary step, we will keep riding the medication management train to allow surgery measures to improve.
I will be back at Cedars in a little over a week. I hope that means quality time with the doctor but I am not sure what I am scheduled for. Funny how tired you get of hospitals yet how excited you are to see your doctor in hope of more help and answers. Catch 22...otherwise things are going well. Still working and playing hard with my little man!

Running Away?

I feel as if I have been trying to run away from it since I got the news. I have been reading a lot of books and finally feel like I have a better idea about what I am dealing with. I assumed that understanding my problem a little bit better would ease my spirits or that the new medication would improve my overall health. Currently I don't know that either are really working.
I failed to post about my first Nitroglycerine pill I had to take when I was again faced with that all too familiar pain again. Nitro provides you with a crazy headache and really lowers your blood pressure, that was a long day. Thankfully I was feeling better by the next day. I was hoping that with the coumadin I would be pain free, but there must be a clot still in there somewhere. Right now the blood thinners (or anti-coagulants) are only going to assure that in a years time that I will not be producing any more clots, but doesn't erase any that have formed. So the doctors weren't too surprised (while definitely not excited) when I called to say that I had my pain return. This meant another EKG and more doctors visits. I have also been having my INR checked weekly and I have having some problems with that, not to mention insurance issues...I am tired:) I am focused too much on the future tests I will need to have done later and the idea of surgery...no thanks. I need to get back to enjoying the present, it has just been a big month!
I have been jumping at every opportunity to get away and thankfully I have been presented with a few. So I had a great family reunion, tomorrow I am off to send my little sister off to college and then to Michigan. I want the breaks. August cannot end soon enough. Hopefully this feeling will subside soon. I want to calm down! Sorry just a chance to vent a bit.

Answers

It has taken me a week to post about the doctor's findings. I was very happy to hear that they had a diagnosis and some form of a treatment plan. On the other hand, it wasn't quite what I was hoping for...so I have a few issues, that largest of which being that I have a giant sacular aneurysm in my right coronary artery. So it turned out that the bulge they found was indeed an aneurysm. It also happens to just fit in the "giant" category...nice huh! Well the director at Cedars consulted with some other doctors and decided that right now they don't have a procedure in place to fix my current problem, but hopefully in the next 10-20 years I will be able to have surgery to repair it. As a result I will now move to Coumadin, a much stronger blood thinner. This is the part I was least excited about, but I know it will be for the best.
The director was actually going to keep me on my Plavix, but after hearing that I ended back in the hospital a couple of weeks ago and after comparing the EKGs she said that I had bypassed another heart attack. That I had in fact passed another clot...well thankfully it wasn't another heart attack (I don't have the energy or resources to go through that again any time soon).
Then based on my holter monitor tests, they determined that I have some autonomic issues that cause my heart rate to jump rapidly and for no know cause. So this is part of the reason my HR is so high when I train, so I have been put on a beta-blocker metoprolol. This is to suppress my heart rate...it decreases my performance and energy levels. To be honest, I have been so on and off tired I don't notice much of a difference. Then I also have the issue of the angina in my heart while I exercise...she is hoping that with the help of the beta-blocker that my heart can rest enough to repair itself. So we are hoping at least some of that will clear itself up.
I still have the green light for exercise...so I am still teaching spin and trying to go out for runs. They are still difficult and maybe a little more so now, but I am headed to the beach this weekend and I hope the cooler weather will make it easier on me.
There have been a few rough moments looking at few unknown that lie in my future, but all in all this was the best news. The doctor found something and could diagnose it...oh and I forgot to mention that they believe that I had Kawasaki's Disease as a child and that is what has caused this aneurysm...look it up, it really is interesting. Well I am happy to be here with my wonderful husband and have a cute little boy to show for all of it. I truly am blessed. Just another little hurdle!!

Learning to Pay More Attention

After having my Cardiac MR results read to me the Doctor expressed my absolute need to stay at around 150bpm when I workout. This was after I mentioned that ended up back in the hospital after hitting 192 bpm on a run. Mind you when I hit 192 I was not running...this was definitely a jog and nothing more than that. So on my next run I looked down at the heart rate monitor as I approached the first stop light, which is no more than a quarter of a mile from the start and my heart rate was at 156. I think I kept it around or under 180 for that particular jog. This is when I realized that maybe my heart just beats a little faster. So Justin and I decided to compare. We went out for a run while we both wore HR monitors. Once we hit mid-way, we did a check to see how we compared: Justin 146 Danielle 188. Mind you Justin is about 5 years older than me and not really a runner. All the running he does, we do together. I must also note that we never "ran" this was a slow jog, probably 10min mile pace! This is when I realized that I cannot even fathom what 150 would really feel like. I just don't know if I have always run this high or not. To make matter even a little more interesting...you can tend to train at a higher HR when you RHR (Resting Heart Rate) is higher to begin with. Well I happen to have a really slow Resting Heart Rate at 45bpm vs. 67bpm (avg.). So who knows!!
The doctor's office called today, which made me a little nervous...only to find out if I wanted a slightly earlier time for my appointment! I think my heart would have been in better shape without that call! Haha..my life!

Cardiac MR Results

So in my last post I explained the joys of the MR, but it was all worth while...it seems as if they have something. Keep in mind that I will not get a final reading and plan until I meet with the doctor to go over the test, but one of her doctor's in her group read me the report. It seems as if I have another heart defect. While I undergo stress (exercise etc.) 5% of my heart does not receive blood. This is coupled by the fact that 4% of my heart has been permanently damaged from the heart attack, so that puts me at 9%. I have been told that anything under 10% is considered mild, which is good news. The only problem is that when my heart under went stress during the test it only got to 98bpm, so when it gets higher it is likely that less blood is getting pumped. This is most likely the reason I ended up back in the hospital. I was working out a bit harder and for too long, which caused a little more damage. Some day I will find a good balance:)
Now the doctor has instructed me to stay at 150bpm, which might be a little difficult, but I will try hard. I actually think that my heart rate is higher when I work out because it has to work harder trying to get more blood to my heart. For those that know me, they know how much I love to train and how hard I like to train...I guess this might be my breaking point. Either way it was nice to have some reports back with new information. I still haven't gotten the results back from all of my tests, but I will just have to wait until mid July for those.

ENERGY LEVELS
I cannot explain why or how, hopefully the doctor will have some insights, but my energy level is like a light switch. I found myself with what felt like tons of energy yesterday (this means that I got 8 hours of sleep and was able to go all day and get 8 hours the next night). I felt like an entirely new person:) I have felt this before but it was shortly after the heart attack(7-8weeks post) and only lasted for a couple of days; I hope it is here to stay but I will have to wait to know for sure. I even taught Spin yesterday and felt awesome...I love being able to say that. I am going to be teaching it 2x/week starting next week so lets hope that it keeps getting better.

2 Steps Forward, 1 Step Back

Back to the ER...I am not a huge fan of the ER but I am even less of a fan of the Hospital. I have decided that I would much rather spend hours in the ER be told I am fine and go home then spend more time in the Hospital. Well last Thursday I went for what I felt was a much needed jog. Let me preface this with saying that I went for a hilly 3 mile run on Monday, Spin class on Tuesday, rested Wednesday and then went for a run at 2pm on Thursday. The only notable difference about Thurs. was the increased temperature. It was probably high 80s - low 90s, this must have been what did me in. I have been running in this heat just not for a couple of weeks, because as most fellow Californians know we have been experiencing June gloom. Well I went for this run and felt good until about 1.75 - 2 miles in (this is a 2.5 mile run)...my heart rate that hovered at 186 took a jump up to 190 - 193. It was right around 191 that I started to struggle. I was having trouble getting it to drop...I would slow down my pace but it wouldn't help. Finally at about 2.2 miles I had to start working because I really wasn't feeling right. I let my heart rate drop back down to 150 and then I started up again...only to have my HR quickly spike back up to 192. I forced myself to finish the rest of the jog, which I can immediately admit was not one of my better ideas. By the time I came back inside I knew this was a poor decision. my chest was tight and it felt as if the air just wasn't getting there or the HR wasn't going to fall...I cannot put my finger on the pain. I can say that I was over heated and in a sense over exerted. I guess over exertion is the word...but how is a 2.5 mile run at a 9-10min mile pace over exerting myself!! This is where a bit of my anger kicks in...I need to find a way around this.
Well after the run I drove home...the drive was not fun. I felt my throat tightening up and I wanted to dry heave...but I didn't know if I could. By the time I got home I was thrilled, I went straight for the floor and lied down. At this point I was still having trouble cooling down, but I felt a bit pale. I ended up taking a swim in a rather chilly pool, which helped to cool me down, but after about 15-20 minutes, I started having trouble breathing...so I was done swimming (or floating rather). I made it through the rest of the day until that night. At about 10pm I started realizing that my chest was tightening up. My husband was listening to my heart and was having trouble catching my S1 or the initiating of my heart beat....anyway, it eventually came back strong and then I went back to the pre-heart attack pain I had experienced but 4 months prior. I felt as if I had swallowed an egg, that it was stuck in my chest and I was feeling pain in my chest and back. We waited it out a bit but after about 25-30 minutes we called my mom and drove my son over to her place. I decided that if the pain had died by the time I got there we would just stay the night there...well once I put my son down and sat back down my chest really started to hurt. This is when the pain turned into a feeling of really tight plastic wrap and rubber bands that were wrapped really tight around my heart. Then we decided to make our way to the ER. The Hospital saved my life but I really didn't want to go back.
This time what took 8 hours to accomplish the first time I went to the hospital I had done in 1 hour...insane how much different the experience was this time. I must mention that I didn't have the heart attack pain just all of the bad signs that led up to it. Unfortunately the only real advice I have been given is that with persistent chest pain lasting over 5 minutes I need to call 911...so I went to the hospital. Well thankfully most everything ended checking out okay (mind you I was there from 11:30 - 3-4pm Friday. They were going to keep me until Saturday until I saw my cardiologist, assured him I hadn't had a heart attack and that I would be undergoing the most conclusive cardiac test and blood work on Monday at Cedars...finally I got to go HOME!!
I will preface the next entry by saying that I had my tests run...needless to say I am exhausted and do not want to see another needle for a long time. Too many all week long, but the tests are done. Some of the results are back but not all of them, so I will just have to wait. I am pretty sure that nothing will show up (I like being pessimistic so that I can only be pleasantly surprised). I just hope that there might be something that helps to explain my discomfort and new found lack of energy and exercise capacity...