Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
Two years ago, right before Christmas, my cardiologist at the time called me to share with me the results of my latest yearly echo. Things were starting to get worse. My aortic valve was still shrinking, and it was 1.1 cm2 in area now. I remember his words: “I am not sure when you’re going to have surgery, but if it dips below 0.9 cm2, it will be time. You’re very close to that.” My aortic valve was born healthy, but years of calcification from FH caused it to collapse and shrink and become dysfunctional. A year went by, my cardiologist then retired and referred me to a new one. So, last Christmas, the new cardiologist calls me with the yearly echo results, around December 20th and says: ”It’s time. Your aortic valve is now 0.4cm2, and we must operate to replace it as soon as you can. Don’t wait for longer than 3 months. Tops.” I requested a repeat of the echo just to make sure they measured right. The repeat echo was done on Christmas Eve of last year. The second echo confirmed the findings: the area of the aortic valve was too small to be deemed safe, so surgery was imminent. I am sure a lot of you who have been faced with heart surgery can relate to what was going on in my heart (literally and figuratively) around Christmas last year. I was scared. I was in a lot of ways hopeless and very, very afraid. I live in a small state (barely 2 million people), with very rare good medical care. I didn’t know where to go and how to ensure I’d have the best surgeon, the best nurses, the best care possible. I didn’t want to travel for this surgery, because I wanted the people who operated on me to be close by, during my recovery. I was terrified. How I didn’t go into the abyss of some sort of depression is beyond me. Christmas and New Year were bleak last year. I know I was supposed to be hopeful, and part of me knew this was coming for most of my life, but this was right in front of me, staring and in the way – I could not divert it or go around it any longer. This was it. When it was finally time for surgery, they found out from an angiogram that my heart was even in rougher shape than they initially thought: on top of replacing my aortic valve, they have repaired my aortic arch as well as replaced my ascending aorta. And if that was not enough, they also did a quadruple bypass on the left side of my heart. It felt, for a while, like my heart was hit by a Mack truck. In essence, it was! But the name of the truck was ‘cholesterol’ instead. I won’t go into the details of my past year – you can always read my past blog posts to find out how it went down. But I am sitting here today, typing this and, for the first time in a long time (2 years) I feel like the monkey on my back has taken a hike. I can now make plans, and actually enjoy Christmas and New Year’s without wondering what the monkey will do to me if I don’t ‘feed’ it. It’s an incredible feeling of peace and gratitude. The tech from my last year’s echo said: “It’s pretty bad, but you have to wrap your head around this huge surgery a little bit, and then, you’ll bounce back after a short time. I see people do it all the time.” I honestly thought she was on crack: how the heck do you ‘wrap your head’ around your heart being stopped and being cut in two, and parts of it being removed and replaced with God knows what? And how the double heck do you ‘bounce back’ from that?! Looking back at this year shows me that she was mostly right. What cholesterol does to us in unequivocally bad. When I hear people say that watching your cholesterol and how it can affect your heart and brain is a myth, I just want to jump right out of my skin and give them a good shake. Cholesterol damage is real and I have this past year to prove it. Send me a note and I’ll ask my surgeon to call you and tell you what state my heart and aorta were in at only 41 years of age. And this is also after 20 years of medication for lowering cholesterol. I am not sure what state they would have been in without medication. I visited with my surgeon this past week. He got together with my cardiologist and they both read my latest echo together. The surgeon called me this week with his interpretation of my results, which, he said, agree with the cardiologist’s opinion, too, for the most part: my replaced On-x aortic valve is doing great and he said “it will last you for the rest of your life, as long as you don’t clog it.” It does still have a leak, more than what he normally sees on these types of valves, but the leak is trivial. He is not concerned about it. He said it all comes down to how I feel, and I feel great. My left ventricle (on which he placed 4 bypasses and which had an MI while I was recovering in the hospital right after surgery) is “incredibly strong” and my ejection fraction is back to around 70% which he says it’s almost the number for a “healthy heart”. I still have a very low systolic BP, which he cannot positively diagnose. He says as long as I am not dizzy and otherwise feel OK, the number won’t matter much. I know the cardiologist is concerned about the number, but I have felt great, too. I do have occasional spikes in BP which I also had before the surgery, but they are short lasting. Alcohol seems to cause this sometimes, too. But that is something easy to live without, or with very little of. It is a miracle to me to not have angina anymore. I believe my first bout of angina was when I was in college at 21 and it was happening weekly, sometimes daily (depending on what I did) for 20 years now, before my surgery. I have not had that since surgery. This tells me my heart is now on the mend and has been freed to work as it should. I have been lucky beyond belief that I have managed to go back to work after 3 months of medical absence and I have not taken many sick days since (7 months ago). Ironically, the only sick leave I took after the surgery was for stomach flu. I have had only one ER visit (for low BP and dizziness), and only one Urgent Care visit to stop a bleeding finger which I chopped while cutting up onions. I have been incredibly blessed with not only good doctors, but a great family and husband who has done pretty much everything around the house so I can rest and take it easy. I have taken this past year “off” from traveling which I love, just so I will be gentle to my heart. We did take road trips but I have now flown. Being ‘grounded’ was not all bad. I have gotten more in touch with my crafts and they have helped me lift my spirit. I have also spent some time learning and finding new beautiful places around our home, which I never would have made time for otherwise. My surgeon was shocked that I have not flown yet. He said: “Go out there, and live your life! This is why we did this, so you can have a good, happy, meaningful life. Go and enjoy!”. It felt so freeing to hear him say that. And as a good patient that I am, I am about to follow orders. As you all know, I have a new life and new routine after this surgery. I watch what I eat constantly, and I am hooked up with apps that tell me how much Vitamin K is in anything. Both my doctors always tell me that the only ONE thing that I must ensure I do to protect the valve is to ‘not clog it.’ I have other food allergies, too, and watching what I eat and where I eat it is almost second nature now. I don’t think about having to think about it. It just happens as routine. I have 10 medications I have to take every day, for the rest of my life. This includes prescription and non-prescription drugs and supplements. I have one shot I take for cholesterol, every two weeks. I go to the clinic for my INR check every month now, and I check it at home about every week. I have a cardiologist appointment every 3 months (for now), and I meet with the surgeon after every echo (about 6 months now). It’s all in my planner and every “thing” I have to do is just part of my daily routine, like brushing your teeth or doing your laundry. My regimen of drugs and doctor’s appointments include a double focus nowadays: the cholesterol numbers as well as how the ‘repaired’ heart is doing. Cholesterol has always been in the front and center focus, but now, the heart is very much there, too, as you can imagine. We’re no longer trying to prevent affecting the heart with what the cholesterol is doing. That’s already happened and has had some mending. Now, we’re watching how the mending is doing as well as whether there is further injury to it from the still slightly elevated cholesterol. My new numbers (https://livingwithfh.blogspot.com/2016/09/numbers-come-back-to-their-normal.html) look pretty close to normal, however, and I am hoping that I can keep taking the new PCSK9 drug I am on. Its affordability, though, is a huge challenge at this time. As long as my cardiologist can supply me with samples, I pray that this will help the numbers stay low. One thing that still worries me about caring for my heart, are infections, because we have so little control over those. I have had an infected tooth for a while (doctor doesn’t know how long, because it has not really hurt, so I didn’t complain about it). They have treated it for now, to let me go through the holidays, but I must have the tooth pulled to prevent the infection for really drilling into my sinus and spreading in my body. I am more vigilant now, when it comes to my teeth – I go to the dentist for every new throb, or pain, or sore gum. I just don’t want to risk some pesky bug going into my blood stream. But outside of all these, which are truthfully my new normal, I am happy and I feel complete, and so lucky. I thank God every day for giving me such a challenge. I never knew I could do these things before I had to do them, and coming out on the other side of it is like being born again, truly. You know how a puppy scared of water feels like when you throw him in the lake and he realizes he can swim and he’ll be fine, after all?! That’s exactly how I feel. For Christmas this year, I feel peaceful and healthy, despite all the limitations that I was left with after surgery (consult previous posts here, too). I feel ready to enjoy my family, my memories and my foods and to plan for what it is ahead. After all, planning the rest of my life is quite a chore. Merry Christmas to all and much health and strength in the new year! And lastly, I am sharing with you my “Open Heart Surgery Year” album – there are pictures in here when I am at my worst (not awake yet from surgery) all the way to the newest picture which I took about 2 weeks ago, with our Christmas tree. If you hate bruises and cuts, maybe it’s not for you:https://wanderworldpics.shutterfly.com/22602
To view original post visit: https://livingwithfh.blogspot.com/2016/12/a-challenging-and-blessed-year.html
Blog Post by A.W. About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.