9 Years

When I went into my open-heart surgery, 9 years ago today, I never thought I would live to see 9 more years. My heart was in bad shape. The surgery ended up being even more involved than the plan outlined it to begin with. But more than that, I never thought I would live a full life after the good surgeon took apart my heart and stitched it back together. 

I knew I had more life in me, and I knew this surgery was not going to be the end of it. But I never imagined that 9 years later I would look back and say that I have lived a full life, either. 

But here I am. A life beyond any expectations.

A full job, all the trips I wanted to take. Buried one beloved pet. Buried one parent. Taking care of the second one from across the world. Watched my nephews turn into teenagers and young adults. Moved across the country. Zoomed over the ocean a few times, zoomed across the country for work, sometimes on my own. Medical bracelet on my right wrist, and tons of notes in my wallet that tell the world that I have a heart and a clotting condition (because of my mechanical aortic valve and because I must take Warfarin to prevent my blood from clotting and blocking the valve). Praying that whoever needs to know this information will find it. And off I go. Always cautious, always with all the risks in the back of my mind, always prepared for what would happen if I can no longer speak for myself, but I am not about to lock myself in a bubble, either. Time is always of the essence and time is short, for all of us. 

As I said 9 years ago, I say this again today: once you’re a heart patient, you are always a heart patient, but you learn to live with your limitations because there is no other way. Your limitations become your new boundaries, but you learn how to fit your dreams within those boundaries and you move on. 

There have been scares over the years. In the first couple of years, I went to urgent care when I cut my fingers in the kitchen and learned how to deal with the bleeding. I went to ER every time my blood pressure was off and I was dizzy, light-headed, or my pulse would race.

When I travel, my INR (coagulation marker) tends to go very high. I am supposed to keep it at 2.5 (for the upper limit), but it sometimes wanders off to 3.8. I am terrified I would bleed internally so I limit my physical activity for fear of bumping my head or something and I eat more greens to try to lower my INR.

I fell several times really hard. One time, I got a large open wound (as big as one whole thigh) in the muck of a dirty beach. I thought for sure I'd get some flesh-eating bacteria in my blood and the valve will have to be replaced, but it didn't happen (I drowned my wounds in hand sanitizer and alcohol which I keep in my car).

Covid just about paralyzed me with fear! With all the statistics of it damaging your heart, your lungs, and reputation of being harder on cardiac patients, I thought if I get it, it would surely kill me or at the very least land me in the ICU. But I have had it twice now (not for lack of protection as I am one of the most careful people I know - I still wear a mask in crowded places), and I have been very lucky to come out on the other end unharmed.

My valve is fine. But my heart is weakening because of my underlying cholesterol issues which continue to damage my coronary arteries. My heart muscle has thickened and I now have what they call “heart failure”. I am one of the lucky ones, though, because my ejection fraction (my "pump") is still high and strong - this is the more rare heart failure.

I learned to keep an eye on the “heart failure indicator” (called BNP, which is measured by a simple blood test) and with the proper medicine and the proper cardiologist I keep that number under control, as much as I can.

I still have neuropathy on my left hand, but there is nothing that can be done about that. I type fine with both of my hands, and sometimes I am spotty on the letters meant to be typed with my left hand, but I know to keep an eye on those and go back and fix them right away. It’s second nature now. I have some shortness of breath and the chest pains come and go, especially with exercise, extreme heat, or extreme cold. 

My blood pressure wanders upward sometimes, but most days it’s normal (staying on top of the meds is key). When I go to some place with an altitude higher than 2000 ft, my pulse races, but when I am at sea level, it’s a lazy 55-60 beats per minute. I have some dizzy spells, tinnitus, and something which I call “pixelated vision” at times (all these started happening right after my surgery and they are still here), where the image in front of me breaks up in what I can only describe as pixels. But again, all these have become old friends and we have learned to coexist. 

As always, today, I read some excerpts from my surgery report and some of my husband’s emails to my relatives and friends while I was in surgery for 12+ hours and hanging between life and death. 

More than anything, today I feel humbled. I feel lucky beyond bounds and humbled. I am not sure why God wanted me to live through this surgery and much, much more beyond. But I am looking forward every day to find out.  

Much health to everyone and as a heart warrior friend once said: “keep ticking!”

The day after my surgery, and today. 9 years is a long time.

 

 

Eight Years Later

I read a meme on the internet the other day. It said "You're only as old as your heart is." So, I must be 8.

It’s that time of the year again - February 11th ... 8 years ago today, I was dead. They made me dead. Only to bring me back to life, if I (and if they) was (were) lucky ... And lucky I was and lucky I am today, too.

Eight years ago today, I had my open-heart surgery. My big, scary, always-had-known-I-would-need-it-one-day surgery ... Every year, on this date, I skim through my operative report and I feel humbled, small, and oh, so beyond-words grateful for everything that came together to save my life and give me a new lease (renewed now for the 8th year) on life ...

I went into the surgery with 3 diagnoses. After the good man, Dr. John Mitchell from the Provo Utah Valley Hospital and his team, were done with me (after 12 and a half hours or so), they put down on paper 5 diagnoses ...

Some scary stuff! Each one of the 5 diagnoses is enough to independently kill someone. I, ever the overachiever, needed to have not one but 5 risks for cardiac death ...


But God and fate were not done with me. I do remember when going in that I told my family: I am not scared that this will kill me. I feel like there is so much more life after this for me. I feel like it’ll be hard, but I will make it ... That premonition or guess has come true ...


There has been so much life after that day ... There have been trips, and new jobs, and meeting new people, and spending time with our families and friends. There has been learning and trying new things, shooting (maybe) millions more pictures, and squeezing more kitties ... There has been building of memories, watching nephews grow and become almost young people now.


There have been some of the biggest heartaches of my life too. It’s like they prepared me for what was to come by fixing my heart to be able to take more sadness: loss of jobs, loss of friends, moved across the country, our kitty died alone when we were traveling, a parent got cancer, we buried another parent ... But my heart keeps going ...


Just like the good doctor said in one of the days after the surgery while I was still in the hospital: it was “up and at them after I left the hospital”. I guess I never quite felt like “up and at ‘em” to me, exactly (I felt as slow as a snail and as weak as a feather), but compared to that day, when I was practically dead, with the heart-lung machine breathing and beating for me, it must have felt like “up and at ‘em” even if all I did was little as getting out of bed in the morning ...


But I have been lucky to do much more than that ...


After learning my new routine in the first couple of years, I have been able to have a new life, a different life than before, but still a good one.


The operation (or, as you can see from the operative report excerpt above the “operations”) did change my entire life’s routine: the anticoagulant forces me to manage my food even more closely than I normally do, it also has me OCD paranoid about measuring my INR (blood “thickness” levels) weekly and I never leave the house for more than a week without my INR machine; I get tired easier than before, still; I have learned how to live with permanent neuropathy in my left arm which still feels like my hand is permanently stuck in a bucket of ice; my chest still feels different than ever before, including my spine and ribs - it cramps and it hurts at certain times; my medical wires left in my chest forever after the surgery still poke into my chest wall at times (and I have not figured out why and when they act out); my blood pressure has been on a new and more noisy roller coaster than ever before, my heart muscle is stiffer and it needs extra meds to relax ... and I could go on and on ... Living through increased inflammation and through several years of Covid that threatened to kill people like me, with a cardiac condition and with high cholesterol, has meant yet a new way of life. A new lesson in living this new, changed life ...


Yes, things have changed. But what I now know for sure is that we are adaptable. We learn to grow around the boulders put in our path, and still are able to shoot towards the skies, kicking and screaming ...


I have a much better understanding of limitations and of giving up things to feel “normal” ... But I also cherish every second of every accomplishment of just going through the day and the night and waking up to a new morning day after day ... There is no price I can place on this blessing and this gift called life ...

First day after the surgery, in the ICU. And 8 years later ...

Xanthoma Removal Surgery

A little behind on this post: at the end of October, I had a xanthoma (or it could have been a lipoma, or a fat deposit - the jury is still out on what exactly they wanted to call it) removed from under my left eye. This was the fourth fat deposit that I have had removed or treated in my 48 years. They are pesky things that show up on various parts of your body if you live with high cholesterol. They show up small, in the beginning, and if left alone they grow sometimes to a painful or an esthetically displeasing size. 

I had one removed from the tendon in my right elbow when I was in my early 20’s, a xanthoma removed from my eye lid in my mid-20’s, a large (bigger than a golf-ball) fat deposit removed from my neck a couple of years ago, and now this last deposit from under my left eye. The surgeon called it “a mobile orbital mass, firmer but consistent with orbital fat” in his post-op notes. Regardless of what you call it, the surgery to remove it might be similar to what happened here.

I am usually nervous about any procedure that puts me under general anesthesia because I just never know how my heart will behave during the drug-induced “nap”. This time, it didn’t help that the anesthesiologist did not agree with the surgeon on what type of anesthesia I should be under: the anesthesiologist wanted a light anesthesia, where I am coherent and talking back but not remember much and the surgeon wanted me “completely out”. The surgeon won, eventually, and I agreed with him (general anesthesia is usually my least favorite kind), considering how he went in to get this fat deposit: he had to make an incision behind my cheek’s skin, in my internal lower lid. He recommended general anesthesia so I would not move during the procedure and cause any other complications. And I agreed, although I am sure I didn’t have much choice if I wanted the surgery. 

I had a black eye for a couple of weeks and I still feel some firmness in that area, possibly from the scar tissue, but the visible bump is gone from my face, so I consider this a success. The deposit he pulled out was small compared to the ones I have had removed in the past - the one I had removed from my eye lid of the same eye when I was younger was probably the smallest. This year’s “fat mass” was actually made up of two pieces measuring 0.8 x 0.7 x 0.4 cm and 1 x 0.5 x 0.4 cm, so anywhere between half and one full centimeter each. 

I originally went to a dermatologist for this growth but he would not touch it because it was too close to my eye, so he sent me to an ophthalmologist. I tried to make an appointment directly with an oculoplastic surgeon, but the clinic would not have it. They said I need to see a regular ophthalmologist first and let them decide if I need a surgeon. I told them it’s useless and pleaded to please let me skip a useless step and make the appointment (in the same clinic) with the right specialist, but they would not budge! 

So, I went to a regular ophthalmologist who decided my vision was just fine and who ended up referring me to their coworker who is an oculoplastics surgeon who finally performed the procedure. I tell you, the mystery and the maze of the medical world never ceases to surprise and bewilder me ... 

Here are the before and after pictures and if you can’t really tell where the bump was (under my left eye in the picture to the left) you’re not alone. It was not very visible but it was palpable and I knew it would only grow bigger, having had the experience of at least two other ones that got enormous and prevented function in either my elbow or my neck. To prevent scarring too badly when it ended up being much larger, I decided to take care of it now. The surgeon agreed.

In the first picture, you can see it under my eye, closer to my nose. Click the picture for a larger view.

Just another procedure that us, FH folks, might have to tackle. 

Much health, all!