Catching up to the present

Alright, today I wanted to just try and kind of catch up to present day. For the last 6 1/2 years, I really had felt great and had no major problems. Ok....maybe that isn't quite true. I did have a couple of "adventures" along the way. In December of 2003, after having an echo done to check for any changes in my heart condition, I got a call that the doctors office wanted to start me on Coumadin (blood thinner). The office didn't tell me why but I do know that Coumadin is usually given when someone has a blood clot. The office had "accidentally" given me a copy of my echo I had done the week prior to this call. It's funny, I had just come from the office and the doctor didn't say a word or mention I needed to go on Coumadin. The whole thing kind of aggravates me! You really have to be you own advocate! Anyway, I started reading my echo and it mentioned in it I had a "thrombosis". Since I know medical terminology, I knew that I had a blood clot in my heart. I called to speak to the doctor just to confirm this but he was already gone for the day. I got the doctor on call and read my report to him and he said..."yep, that's what that means." like it was nothing. I guess for him it was nothing! I would say this was the first time since my diagnosis that I really felt anxious about things. I wondered why I was not in the hospital to keep an eye on this and I wondered if it would move. If it moved, that wouldn't be good! I broke down in tears and I have to say I was very scared. I started calling friends to pray for me and then I realized, I had not even prayed about it myself! I was reminded by one friend that God had already brought me through so much and that he could bring me thru this. It was then I realized the reason I felt so anxious.....it was because I went to friends instead of going straight to God with my concerns.

I had also started feeling tired and run down all the time, so my heart failure specialist suggested I get a bi-ventricular pacemaker. The device was pretty new at that time but had done great things for other patients. My doctor said it could really improve my heart function and also help decrease the size of my heart. I remember him say if it were him, "he'd run naked to get it!" I told him he wouldn't see me doing that but I would consider getting one. So, In January 2004, I had a Medtronic bi-ventricular pacemaker implanted and I have to say I have had no regrets about doing so. The left and right side of my heart does not beat together like a healthy heart does. This pacemaker is different from other pacemakers because it is constantly working. It doesn't just kick in when your heart slows down or speeds up, it constantly works. It keeps the left and right side of the heart in synch. It did amazing things for my energy level. I could really do anything, hike, shop all day, etc and I never felt run down. If you're reading this and a doctor has suggested this to you, I highly recommend it. The procedure itself is not that bad. The doctor did "nick" an artery while putting mine in but it healed fine so I had no problems from that. You are awake while they do it but you don't feel a thing. The hardest part for me was lying still in the hospital bed for 6 hours afterward since the procedure was done thru a cardiac catherization. That was my second time having a cardiac catherization and let me tell you, lying still wasn't any easier the secone time! Other than that, it was pretty easy.

With that device, I felt great. It was really back to the life I love doing more with my family. Then, in February 2005, I started having problems with my Coumadin. I started having some bleeding issues and ended up have a 14 day long, extremely heavy menstrual cycle. I called the doctor on about day 8 because it was just so heavy and I was feeling so weak due to this. They couldn't get me in for 6 more days so I had to wait and endure. By day 14, I couldn't even walk on my own because I was so weak. Steve had to put me in a wheelchair and wheel me into the doctors office that day. They ran some tests and sure enough I was extremely anemic........(I could have told them that without the lab test!). They also did a biopsy just to make sure I had no other problems other than the Coumadin causing this. Biopsy was negative so they were pretty sure the Coumadin had caused this. I ended up spending a night in CCU getting a vitamin K injection and a blood transfusion. They had to keep a very close watch on my heart to make sure it was not "overloaded" by the blood transfusion. When I went to the hospital this day, I felt 10 times worse than I did when I was intially diagnosed with heart failure! After my release, it took me 3 or 4 days before I felt "normal" again. They did also take me off the Coumadin!

After that episode, it was life as normal. I felt great and spent my time with family and friends and pretty much did whatever I wanted without feeilng run down. I had several echos over the years but the bi-ventricular pacemaker had done nothing for my heart function or the size of my heart. My echo's results have stayed with a heart function of 15-20%. What it did was give me energy and allowed a better quality of life, so for that I am thankful.

Now, to go to October 2007. I had just come back from a wonderful vacation in Nashville, Indiana. My family had gone and rented a cabin and we fished, hiked, shopped, etc and just had a great time. I felt great while on vacation but had noticed I was getting a little more out of breath than normal. About 2 weeks after vacation, I came down with bronchitis. I got over this bout fine and bounced back as I always had after a bout with bronchitis. I seem to get it every fall. Well, 2 weeks after getting over the first bout, I came down with bronchitis again. This time, I never bounced back. My heart rhythm wasn't right and I could feel my heart skipping beats, beating fast, etc. So, I went for a check of my pacemaker and while I was in the office they told me my hear was in V-tach, which is ventricular tachycardia (rapid heart beat). I felt miserable. The doctor suggested it was time for a new pacemaker, one that included a defibrillator. I wasn't "in the mood" was another surgery but I knew I had to get this. I didn't want it, I had heard horror stories of them going off when not needed, etc and I just didn't want that happening to me. I have a dear friend, Julie Werling, whom I have never actually met yet! We had come to know each other thru email after an article ran in the Dayton Daily News about my heart condition and my experience. In the article, I had them include my email. I look back at this at something God put together in advace for me once again. Julie also had a heart condition and she has a defibrillator. Her's has saved her life! So, I wrote to her and told her what was going on with me. She wrote and told me her experience with the defibrillator and she really helped me make my decision. I decided to take my own advice.....BE HEART SMART, and get the new bi-v pacemaker with defibrillator. So, In January of this year I had this procedure done. I am so glad I did! Now, the nurses try to scare you to death by telling what it will feel like if it goes off, but don't let this keep you from getting it! They told me right after surgery it would feel like I had been kicked in the chest by a horse. TMI! Too much information! The way I look at it though, if it saves your life, what's a little pain! I continued to feel bad for a couple months after my new device was implanted but then I started feeling much better again. Tests indicated at the time of my surgery that my heart was in failure so it's no wonder I felt as bad as I did. My doctor told me my new device has more progamming that can help my heart and so now my heart is beating much more like it should be! It's amazing how good that can make you feel!

During that time period, another doctor had also run a MUGA scan on me. During this test, you are given a series of 2 injections and then you lay on a table with a large x-ray machine moving around you and snapping pictures. It's a very easy test to endure. This scan told them my heart was functioning at 16% and they felt the bronchitis had weakened my heart some. At this time, they felt I needed to be worked up for a heart transplant. Once again, I was on that roller coaster. It was a very up and down time for me and my family emotionally. I had never experienced bouts of depression, but this time when I didn't feel well, I did. I hated feeling that way but was reminded by a friend, I had every right to feel that way! I didn't let it keep me down for long though! Steve and I had come to terms with what the doctors wanted to do and really felt a peace about things. We could look back once again and see how God had worked things out in advance for me. I had met a new cardiologist at a speaking engagement I had done about heart disease. I heard from another doctor how "bright" she was so decided I wanted to see her. So, now I see Dr. Monica Hunter with Ohio Heart and Vascular and Dr. Chung from the same group. Dr. Hunter referred me to Dr. William Abraham from Ohio State University. From everything I have heard about Dr. Abraham, he is tops in the field of heart failure and is internationally known. Once again, I have been blessed to be treated by some top notch doctors! I am so thankful for that. None of this would have happened had I not met Dr. Hunter!

So, I began the process of seeing Dr. Abraham and discussing possibly being placed on the heart transplant list. Dr. Abraham ordered a metabolic stress test to see just where I stand in that regard. During this test, you wear a mask and they collect your oxygen. You are on a treadmill that increases in speed and difficulty. I felt fine during this test and was able to endure so they could collect all the information needed. I went back in a couple weeks to get my results and from that test, Dr. Abraham said my heart is keeping up during exercise so for now, I do not need to be on the heart transplant list! Yay! That was a very good day!

After this, Dr. Chung (heart failure specialist) wrote me an oder to do a cardiac rehab progam to get me exercising again. Since my bout earlier on, I had been afraid to exercise on my own. So, I did this program and I can't tell you how much of a difference exercise makes in the way you feel. If you have been told to exercise.......do it! It makes you feel so much better. I have finished that progam and joined the YMCA so I can keep it up. Dr. Abraham has also suggested to me a procedure that is still in the experimental stages. It's a procedure where they place a mesh heart net around your heart. It is showing promise in some that have had it done. It helps the heart function better because it gives the heart a squeeze and it also has helped decrease heart size in some patients that have had it done. After my stress test though, he has decided to wait on that. So, my Coreg dose was increased and I was to have an echo to check for improvement in my heart function this September.

This brings me to the present. I had the echo last week and got my results this Tuesday. Unfortunately, there has been no improvement. I feel great though and that counts for a lot! So, once again my Coreg dose has been bumped up. Coreg drops my b/p so I have to bump it up slowly. Eventually, Dr. Abraham wants me up to 50 mg twice a day. Right now I'm on 25 in the AM, and 1 1/2 of the 25mg tablets in the evening. So far, no problems with how I feel. If I continue feeling ok with it, he will continue increasing in small increments. In another 6 months he will check for improvement once again. If he doesn't see improvement, he wants me to seriously think about the heart net. So, if you believe in prayer like I do, I'd appreciate prayers for improvement in my heart function! Until then, I'll contine to live the great life God has given me and not worry about things!

So, I hope I haven't bored anyone and if there's anyone out there that wants to share their story of heart disease with me.....Please do! We all NEED each other.

Ok....this weekend I'm off to a Revolve tour with a bunch of teenage girls! When I post next, I'll talk about some of the opportunities that have come my way because of heart disease.

I'll leave you with a quote I love: "Only passions, great passions, can elevate the soul to great things." (Denis Diderot)