Sunday, July 8, 2018

Then and Now. A Path to Recovery


I have been pondering upon life and the resilience we have, the stubbornness we have come equipped with from birth to embrace it. To fight on. To stay on the path of making ourselves stronger and to live.

This piece is for all the people out there who are just now finding out they have to have surgery, or for those who are about to walk into the pre-op appointment tomorrow and are wondering how will they ever come out of this daunting experience. And also for those who have put the surgery behind them but are now going through the hard first days and weeks of finding their new normal. This is also for everyone who, I know, can relate. This is for you all.

I was thinking recently about what all happened to me in early 2016 when I had my surgery. I walked into that hospital in Utah on my own two legs. I was rolled into the anesthesia room at around 7 AM with a smile on my face. They gave me that first (I think) IV shot of whatever … and I slipped away into the big slumber (I think, as I cannot remember anything till the next day around 2 AM when I woke up in the ICU with what seemed like a whole army of nurses around me).

I was thinking the other day about what all happened to my body in those hours, and it made me stop in my tracks. This really did happen. They took me to the OR and they stopped my heart. They cut my chest open, then my heart open (I think). They sunk me in buckets and buckets of ice to “freeze” me during the circulatory arrest procedure they had to do to trick my brain that it did not need that much oxygen to survive. They put me on this machine that pumped the blood and breathed for me for many hours. They removed my aortic valve, and then they removed my ascending aorta. At this point, there was no life-giving blood flowing through my arteries. Only some flowing through my veins, tricking my brain that it was OK not to breathe.

They replaced my aorta with a man-made graft and did the same for my aortic valve and root. They “cleaned out” (cut into the walls and removed the bad tissue of) my aortic arch which was thick with plaque. They “un-froze” me next and then started working on my by-passes. They removed veins from my left leg and sewed them onto my heart and did the same thing with the arteries from my chest – to bypass sick arteries. Somehow, through another big miracle, after they stopped the heart and lung machine my heart jolted itself on its own back into beating and making me a whole person again. Later on, my lungs started breathing on their own.

In essence, I was dead, really, if that machine would have stopped and the three surgeons, one anesthesiologist, one “heart-and-lung machine guy” (as my surgeon called him), three PAs and the army of nurses and other staff would have walked away on me. But they didn't. And I was breathing on my own by the time my husband saw me, in the middle of the night, and then when he left to go home.

When I got home from the hospital, after having a heart attack while in the hospital, 8 days after the surgery, I could not do a lot of things that are routine for any normally functioning human being. I could not open doors that were too heavy, including my refrigerator door. I could not tie my own shoes – I could not bend over at all. I could not clip my nails, because of the neuropathy in my fingers. I could not put on my socks. I took them off with my other foot. I could not wear a seat belt nor carry my purse on my shoulder or on my back. I could not wear a bra. I did not sleep on my back or my side; I slept sitting up for six months. After three months of medical leave, I went to work pulling a dolly that carried my purse and my lunch bag. I snuck into the building and in offices behind someone that would open the large, very heavy doors for me. I learned pretty fast where all the doors that let you push them open, rather than pull are, because I was afraid my chest would pop open if I struggled to open them myself.

Most of all. I was tired a lot. I was tired even after not doing anything at all. I was drained. I did not sleep well, but I watched a lot of TV, spent a lot of time on social media, and read a lot. I was not able to even cook, as a pot of water was too heavy to carry. I just rested. A lot. Well, I laid there – it did not feel very restful at all.

I remember writing during those early days of recovery that I cannot imagine being normal again, traveling, going about my normal life. And someone, a kind soul, told me that then I was praying for “good hours, but in time they will become good days and later good weeks.” I was dubious. But those words turned out to be true.

In the past two years and almost 5 months, I slowly grew stronger, just like that kind person predicted for me (or rather shared from experience). I started taking trips by plane again after a year. I visited three countries and went on a cruise a year after the surgery. This year, I flew across the ocean and visited my family in Europe. I carried my carry-on and my heavy backpack during security check-ins and switching gates in several airports. I drove across the USA last year, all by myself, when we moved from Utah to North Carolina. I did wear a seat belt with no trouble then.

I just took my first trip alone for a week, for work. I packed my carry-on with clothes, shoes, toiletries and gifts for a week, and had again a very heavy backpack with my purse and computer in it. Carried them all on my body, and lifted the heavy carry-on above my head and put it in the overhead bin with no problem, not even a sweat. My husband and I just finished staining our screened-in patio a couple of weeks ago on a Saturday. We worked together, side by side. We did about the same amount of work, although he did most of the “up high” areas, and I did the floor and the lower areas. It was 95F and about 70% humidity that day, and about half of that day we were in direct sunlight. I did fine.

I remember I did not plant a garden the year of my surgery because I could not sit or bent over in the sun at that time. Sunny days (even with no humidity) tired me so easily. While staining my deck I was in awe at how much different, stronger, my body has become in just two years and a little bit … I never hoped I could come this far. And I am not perfect, and there are still things I am working on two years and five months later, but I know one day I will reach most of them, just like I did all these other milestones …

If I have learned anything from this experience is that we are strong. We are built to fight, and we should give ourselves and our bodies more credit than we are inclined to to begin with. Thinking back at all these things that happened to my body and knowing how I feel today fills me with humility and gratitude!

I wish everyone happy summers, strong recoveries (they can be only as fast as you are comfortable with), and the faith that one day you will be whole again. I am just one living example that that is possible …

Much health and … keep on ticking!



Saturday, May 26, 2018

CVD "Improvement" which Seems Truly Amazing


If you might remember and follow this saga, my new cardiologist suggested that I needed to have a heart catheterization, to find out more details about the status of the blood flow in my heart (http://livingwithfh.blogspot.com/2018/04/more-questions-than-answers.html) . This is because I complain of chest pressure, lack of air when I exercise, and general running-out-of-steam after so much as a few minutes of exercise. All these get worse and come on even sooner if I do this in the heat, or cold, or at altitude, or on an incline.

He did do a stress test first, and the test found that there is a portion of my heart (the bottom part) that does not get a proper blood supply when my pulse accelerates (so, during exercise).

So, this past week, he followed up with a cath. I was not crazy about the idea, especially when he said that they might insert a stent, in case they do find blockages in my arteries. They believe that these blockages might be giving me the symptoms. I was not thrilled about the idea of inserting yet another prosthetic in my heart (besides the grafted aorta and my mechanical aortic valve), and complicating not only my heart function, but also my treatment, especially my anti-coagulant treatment. If they had added a stent, I would have had to add Plavix on top of Warfarin, he said. Needless to say, I was not looking forward to this cath! But … I wanted it behind me!

This was my third cath in 13 years now. It was the first one when my regular cardiologist was not also the cath doctor. The way they do it at Duke, they have super specialized cardiologists, so the “office” cardiologist you see for your regular check-ups is not the “interventional cardiologist” that does caths and implants pace-makers, etc. This was new to me and I was very scared. The office cardiologist is the one I have worked with for the past months. I feel like he is the best one to know what is in my heart (literally and otherwise), and to really understand what he would be looking for in the cath test. But … I had no choice. I had to go to the hospital and meet with the cath cardiologist only a few minutes before the actual cath and then wheeled in on a stretcher to the cath lab.

I was, once again, like so many times in my life, very lucky. The cath doctor and I (and my husband) really clicked – he was a very compassionate and thorough man, and also a knowledgeable cardiologist, I thought. He had read up on my case and knew what to look for. My regular cardiologist was there, too, in and out of the hospital, and he did come into the cath lab and discussed the results as the cath was being performed. So, yes, I did feel like they were taking really good and thorough care of me, at least during the procedure.

The cath findings were somewhat of a shock to me, and I think to everyone else. Three main arteries in my heart had been by-passed two years ago when I had my open heart surgery (the LAD was one of them, and two others as well). An additional smaller branch of the LAD was also by-passed at the same time, giving me a quadruple by-pass on my heart resume. At that time, they saw 90-99% blockages in these arteries and hence the need for the by-passes.

Yesterday, during the cath, they found that all the by-passes have closed up and that my heart is still using my God-given blood vessels to function. Now, these arteries that once sported 90-99% blockages only show 30-50% blockages and are generally working fine on their own. At this time, the by-pass grafts have closed up and will never be used by the heart, while the original arteries seem clean enough to be functioning on their own.

The cath (and also the stress test) did show signs of mild ischemia (https://www.mayoclinic.org/diseases-conditions/myocardial-ischemia/symptoms-causes/syc-20375417) which could explain some of the symptoms.

They could see my main arteries and their immediate branches clearly during the cath procedure, but they could not see the very small arteries, the peripheral ones, the capillaries, because they could not find a catheter that was small enough to access the arteries at that level. They tried all the small catheters they had, but they could not find one small enough to access those smallest blood vessels nor to be mobile enough once they get to that level so they can really search for problems. However, they determined that I had good blood flow to the heart, overall, from the main arteries, and they should just leave it at that.

I, of course, have no explanation for why my ever worsening arteries (from many years of very elevated cholesterol running through them) have seen a turn for the better – and my only guess (and that is all that it is: a guess) is that Praluent might actually reverse atherosclerosis, like it has been speculated. I asked my cardiologist about this possibility and said at this point this would be pure speculation. He said whatever the reason is, he'll take it and he is happy with the blood flow he is seeing in my heart. I think this was the first time in my life when a cardiologist did not predict a gloomier, darker prognosis for my health going forward, and was actually pleased with the results.

This was by far the first time in my life when a result is actually better than everyone expected. I am thrilled because I think having my cholesterol as low as it's been on Praluent has everything to do with this. But I am so new to a good prognosis that I am not really sure what to do with myself. I must say, it's a good problem to have.

I still have tons of questions, like what is going on (still!) with my very weird blood pressure - they took my blood pressure five times at the cath lab yesterday before the machine could record a number (and then the number was 130 over 40), and is the Aortic Insufficiency (AI) caused by my leaking aortic valve the cause of these symptoms, perhaps?! But I will follow up with the office cardiologist in about a month on those. 

The next step is to basically continue to keep my cholesterol low (my most recent numbers are here: http://livingwithfh.blogspot.com/2016/07/my-current-cholesterol-numbers.html) and to go back to cardiac rehab. What he wants to get out of rehab is more understanding about my symptoms ( when they happen and what brings them on), and to give me more confidence to exercise in a controlled environment where I am monitored, and to learn how much I can actually “push myself.”

This “pushing myself” has been a matter of disagreement between a lot of my cardiologists: some of them say “do as much as you're able; don't do more than what you can, and when you reach that threshold, you just stop” and others say “push yourself beyond your limit, because I can guarantee that your heart is OK with it, based on what the tests show.” I want to believe the latter crowd, but I am human. So, typically, when I reach my limit, I stop.

And that's the verdict. At least for now. Now, I am determined to going back to my life and actually enjoy the rest of this year, of the summer, and beyond …

Happy Memorial Day Weekend, everyone! I hope you are all enjoying what's ahead. Much health and strength to everyone.




Thursday, May 17, 2018

A Full Circle: Bringing FH Back to Romania

I was given a rare opportunity this spring, to speak to a class of Medical and Pharmacy students at the Medical School in my home town of Iasi, Romania. I did not even blink when my friend, who teaches English there, asked me to come and speak to her students (in English) about anything I wanted. She was thinking of this lecture more as their chance to enhance their English skills. I was thinking more as their chance to enhance their English skills while listening to something that might be interesting to them, like a medical system, or a rare disease. Or both.

My friend and I kept going back and forth about what the topic of my lecture would be, and we could not decide. So, I gave the power to the people: formulated three topics and let the students vote. They selected what I was guessing they might choose: “Managing a Genetic Disease in the USA. Navigating the American Medical System and Surviving to Tell the Story. A Patient's Perspective.”


So I proceeded to putting together a presentation about the medical system in the States, which is, as you might expect, quite different from that of a former Communist country like Romania. I presented our medical system through the lenses of FH, explaining the appointment and referral process, the tests that are necessary, sometimes mandatory, to perform every year, sometimes more often, the process of filling prescriptions, and a brief overview of what it all costs. I gave them an idea of what life with FH would cost in the USA if I had no insurance, or not as good as an insurance as my employer is providing for me. The whole concept of private insurance is completely foreign to Romania. The concept of a “pre-existing condition” is also.

I also talked to them a bit in depth about FH: what it is, why it is not widely diagnosed, but how it is believed to be widely common and widely devastating, as well. I talked to them about my own family. I also talked to them about the FH Foundation, and how I never knew anyone else outside of my family with FH until I met the folks at The Foundation. Kids nowadays are more familiar with the concept of a virtual family than I was when I was their age, but they were still impressed with this whole initiative and drive that The Foundation has to bring people together, to get us educated so we can get diagnosed and to help build bridges, and make resources available to us.



I was sure this will all be very interesting and captivating to them. What I did not foresee was that they would be more interested in the disease itself than the medical system that's helped me live with it. When I opened the floor for questions, they asked things like “So, how did you feel when you grew up almost all your life with being told you will die by the age of 25?” or “Do you think you would have made different choices in life had you not known about having FH at an early age?” or “So, do you feel less of a woman because you could not have children?” or “Was it hard for you to make the decision to not have any children?”

They also asked about the quality of my life, and the quality of my life after heart surgery. About the recovery time and “what hurt” and for how long after the surgery.

They also asked more “medical system”-related questions about how prescriptions are honored and the relationship a patient might have with a pharmacist in the US. But what shocked me the most was the “human” aspect of their questions, the interest in me, as a person, and as a patient.

At the end of it, I could not help but wonder: who beats the humanity out of the doctors by the time they get to actually practice? Because as students, at least if this one example showed me anything, they all come equipped with compassion, empathy, and the “human factor.” Or at least these students did.

It was an amazing opportunity and I would do it all over again. Speaking about my story, and the roads that got me here is always humbling and uplifting at the same time. I was honored to share myself and my experiences with these beautiful, eager minds and I look forward to more chances to do it again.

Sunday, April 8, 2018

More Questions than Answers


Sometimes I wonder: “What is purpose of seeking to feel better? Have I not learned that I will never ever feel like I am running on 100% capacity, firing on all cylinders?! My HoFH will continue to do damage, my heart has had a major overhaul AND a heart attack. There is never hope for really feeling truly healthy and truly at full potential, as if I were a healthy person. So what is the point of all the tests and all the interventions that doctors still want to pursue?!”

And then there is this other little voice inside my head that says “Why not?! Medicine is so much more advanced than even 10 years ago. If there are ways, and procedures, and meds, why not seek the best life possible? Why not trust a doctor or two that do believe in the silver lining?!” The trouble with that is all the risks involved, and all the doubt, that despite all the advancement, I still have an unbelievably broken body, which is irremediably damaged for good, and forever, which will never ever run at 100% capacity, even with the best care.

Let me bring this in focus: I met with the second cardiologist since I moved to NC. He struck me as somewhat of a bully, a rushed maniac with a weird passion for treating hearts and somewhat of a bull in the China shop. Definitely not a boring guy! He initially was “guessing” based on what he has heard about my history (mostly from my previous cardiologist's notes) that the biggest problem with my heart is my AI (aortic insufficiency), caused by my (still) leaking aortic valve. Although, just like my previous cardiologist, he could not hear my AI (the leaking), he said the reason my blood pressure sometimes has “no bottom” (or a very low one) is because of the AI. He also guessed that my heart probably has fluid in it because of this and this is why my legs swell up sometimes. He also chalked the shortness of breath, the dizziness and other symptoms of fatigue and slowness to the AI as well.

He recommended a heart echo and then a nuclear stress test. After both were done, he called me and the conversation went into a completely different direction that before. He said “according to your echo, your heart is good.” That's it! He didn't say why, and he did not mention one word about my AI (which he believed to be severe before the echo, just based on the notes he read and on my symptoms). He said nothing about how badly my valve might be leaking, if at all, and whether there is a concern even about the leakage at all.

He, however, spoke a lot about the results of my nuclear stress test: he said when at rest, my heart gets an adequate amount of blood (and oxygen), and the vascularization is appropriate in my entire heart muscle. However, when my pulse raises to even as little as 120 (my goal was to hit 150 beats per minute, but I started getting short of breath and dizzy around 120, so they stopped the test), there is a corner in my heart (lower left ventricle to be exact) that does not receive blood at all. He said it's either a scar from an old heart attack (my MI was localized in the same area he saw on the test), or there is a blockage there that needs to be opened up.

So, his number one concern now is to get to the bottom of this mystery: he now believes that my shortness of breath, my dizziness, and all my other symptoms of fatigue come because of this area of my heart is struggling to work without proper oxygen.

He wants to do a cath next to understand which is the cause: if the cause of the lack of blood in that area of my heart is an old scar from the MI, I am not sure what he can do for that, really. But if the cause if a blockage, he wants to put a stent in to open it up. After which, he wants me (like he said the first time he saw me) “back in rehab”, because the heart has to start working better after the blood flow is opened up. The first time he mentioned rehab to me it sounded bogus, but this makes sense. Not sure what the course of action will be if we're not talking about stenosis but rather some other traumatic damage from my heart attack. He seems to be pretty certain that it's a stenotic spot where maybe a bypass was not done before, or where it was done and it didn't take. (have I mentioned that this doctor guesses a lot?! He does.)

I am, of course, not crazy about a stent, because that can also be a liability (stents can clog, too, with scar tissue). A little voice inside tells me also: “what is the point of all this? Can a stent really make you feel like a normal person? Can any procedure ever make you feel like a normal person? Of course not! So why add more side effects and worries, when you can just cope, like you have done for two years now, since surgery, and for 20+ years now since the first sign of cardiac problems?!” But not doing anything to help beaten heart (no pun intended) sounds just as crazy.

The doctor wants me to come up to the 150 bpm pulse and keep going with no symptoms for at least 15 minutes. But I have had angina before my surgery for years. Now, I have had early fatigue and shortness of breath after just a little bit of walking. Is the goal (for my age and weight, height, etc) of 150 bmp really realistic?! With everything that went on in my heart and with the constant abuse of high cholesterol (which will continue), is it really possible to hit the targets of a normal person?!

The one thing that motivates me to really look for answers and for a possible solution for getting my whole heart irrigated properly is that my symptoms kick in even without extensive exercise. They kick in after speaking for a longer period of time, or when I am nervous about a seminar I am presenting, or speaking in front of a crowd. So, simple things like these make me symptomatic. And to me symptoms means more damage to the heart, inherently. The heart cannot be healthy when it's struggling for air like this, when I do the simplest things. And I don't want it to quit on me when, say, I need to run across an airport dragging luggage during a short layover.

He wanted to do the cath within a week from my test (it's passed already), but personal conflicts for both me and the doctor have postponed this till a month from now. He wants me to increase my Atenolol to ensure my pulse rate stays low. In the meantime, he told me “not to go crazy: no jogging, no hiking steep hills, no pushing heavy carts. Just keep the pulse under 100, he said, or lower, as low as I can.

I am planning to have at least one more office visit with the doc before I go in for the cath, just to ask him all the questions I still have about all the tests he has done and about his overall opinion about my heart: some things that I knew I had from before (like the AI) – how severe are they? Should we worry about them? And also: is my heart ready for a stent?! What is the maintenance we need to consider when that will be implanted? What are the steps to take if I don't need a stent? If my heart is damaged otherwise from the MI, is there any remedy for that? If yes, what is it?! Lots of questions, still, as you can see …

I feel sometimes like trying to see this doctor is worse than trying to get approval for Praluent. You cannot get an appointment sooner than 6 months ahead. Now, because I am somewhat of an acute patient, I had to beg his office assistant (his nurse told me she cannot schedule anyone sooner than what the public calendar shows, and I have to work with his personal assistant) to schedule the appointment at least 2 months after my previous one. When we do meet, he is incredibly rushed and off to the next patient, so I have to really come prepared every time, with written questions to ensure I don't miss anything from what I want to know.

But we do what we have to do to get our answers, don't we?! A busy schedule, a rushed physician, or an inflexible insurance company should not stop us. Here's to resilience! 

I am very worried about what's in my heart, and I am doubly worried that he has little time to really know what's going on. Maybe he's used to this rushed schedule and to him is second nature to run off from one acute case to another … We can only hope …

I wish everyone smooth rides and easy questions. Much health and a beautiful spring, everyone!



Sunday, April 1, 2018

New Numbers and a Slight Change in Drugs

My then new cardiologist recommended I'd see an endocrinologist for treating my cholesterol back in December (http://livingwithfh.blogspot.com/2017/12/the-tricky-balance-between-trusting.html). He tweaked a couple of my drugs then, in the hope of getting my LDL cholesterol down some more, and my HDL a tad up. 

At the time I was taking 5 mg/ day of Zetia and he doubled that to 10mg/ day. My previous cardiologist said there is little to no difference in the amount of Zetia you take for how much percentage of cholesterol that is lowered. He said taking 5 or even 2.5 mg is just as good as 10 mg. Since even the generic Zetia is $80 a month, I used to cut it in half to save on the money, since the benefit was not said to be great. But I gave it a shot and increased it at the advice of the endocrinologist. 

The endocrinologist also recommended I would add Metamucil to my diet which is also proven to have some benefit (being a fiber) in getting rid of some of the cholesterol. So, I also added that in December, as well. 

Last week I got new numbers and as you can see, they are not very much different that the ones in December. In fact, the total cholesterol, the LDL and the triglycerides are slightly worse. This time, these tests were not taking while fasting, so I think that matters, especially for the triglycerides. 



The endocrinologist also suggested that I would try Juxtapid, but after thorough research and hearing from folks who have taken it, and my liver enzymes going back up on their own, I decided not to go that route. I am way too nervous about the drug being too strong and damaging my liver to try it out. 

Since December, I switched my cardiologist and the new one might be able to manage my lipids himself, he said. We have not gotten to the part where we talk about my lipids, as he is more interested in figuring out my heart first. So, till we get to that point, I am deciding a few things on my own. Given the lack of improvement on the numbers in the past three months and the fact that my stomach is further upset by the Metamucil, I am deciding to: 

- stop the Metamucil
- go back to 5 mg/ day of Zetia

In the long run, I am also: 

- not signing up for Juxtapid (my new cardiologist agrees with this) 
- maybe canceling the appointment with the endocrinologist.

I have had some experience with most of these drugs and I just feel like the regimen and the diet (http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.htmlI am on now has given me the lowest numbers that I could hope for, at this time. 

As always, this is a personal post and a personal decision. I always try to stay informed and weigh in what is best for my cholesterol as well as for my quality of life. 

Monday, February 26, 2018

The Power of a Community


When I first started this blog there were virtually no resources to use as reference for my disease. All I knew is that I have a rare form of Familial Hypercholesterolemia, but at that time I didn't have a name for it. I knew my dad and his dad had a lesser form, and I knew what that did to them. But outside of my own family I had no resources to learn more about what this disease means for me, in the long run, and what are all the available tools where I can learn more about it, or learn more about managing it. More than that, I never knew whether my fears and my apprehension was mine alone, or those feelings were normal, as we are trying to understand this disease.

Most of my doctors were themselves in the dark about what it means and what to do with it.

Fast forward a few years later, I found a discussion group on Facebook (the Familial Hypercholesterolemia (FH) Discussion Group - https://www.facebook.com/groups/47098836197/) which made me feel a little bit less alone in the world. There, I started seeing comments and questions from people just like me who wanted to know more information or just wanted to share their journeys with others like them, and to be heard. A feeling I knew too well.

Fast forward yet some more time, and The FH Foundation was founded and even later than that I became personally engaged with it. They are great for a lot of reasons (just check out their website and learn for yourself: http://www.thefhfoundation.org/), but the one reason I love the most is, again, because they bring people like us together. We can learn from each other and feel that we are not alone.

Medicine has advanced and I find that now more doctors know, for the most part, how to deal with our disease, or at the very least they know what specialty care they can refer us to so we can find proper management for FH. It is with this advancement that I now know for sure that I have HoFH, because genetic testing is now more available than before. But if it hadn't been for these resources and these groups of people and their experiences, I would not have known what would have been possible for me.

Medicine advancement is great, for sure, but the strength we can find in the community of people that share the same experiences, fears, as well as successes and victories as us is invaluable! It's like a much needed virtual hug. 

Every day, I thank people who have put these types of forums and resources together for their time and their drive to fill a void that was very much painfully felt for people like us.

This week is Rare Disease Week (February 28 is Rare Disease Day). Because I have HoFH which is the rare form of FH, I want to use the platform that I have to thank all of you for sharing your experiences with me, over time. I hope my journey is also helpful to some of you. To all of you, I say: you are not alone. We have each other, and I hope you reach out and know this to be true. I hope you will use the platforms that you might have (groups, and social media accounts) to share with others and make other lost people feel less alone. The power of a community of like-minded people is truly priceless.

Much health and hope to all of you!

Sunday, February 11, 2018

Two Year Anniversary Since OHS


It's been two years now, since my very involved heart surgery, and what I consider my re-birth, really. Every year on my anniversary, I read through my story which I wrote right after being released from the hospital, and I look at the pictures I took during my recovery year. It is a therapeutic remembrance, and it also puts things into perspective: if I am still worrying now, I need to see how bad off I was and how far I have come and I need to appreciate the life I have managed to live since then. The time I got after this surgery is bonus time which might not have happened without it. For that, I am forever grateful!

I will always be a heart patient. I wish I could be here today and tell you that you get your surgery and you're done worrying and you're done thinking every day about whether your heart is healthy or not. I don't care who your surgeons and your cardiologists are and how wonderful they are (and they are truly miracle workers), you will always wonder “is my heart truly all right?! Am I truly OK?!” At least I do. I wish I could say you're done seeing doctors and getting tests done, but it would be a lie.

But have you ever seen those trees that grow up crooked in the forest?! A brand new tree springs up, and they are straight and pretty when they're a sprout. And then, they hit a rock in their growth towards the skies, and the rock is right there, on top of them. But do they die?! No. They learn to grow crooked and around the rock. Their trunk bends around the obstacle and eventually they come back springing towards the skies, again, when they have grown past it. They will always look more interesting than the others which grew uninterrupted and straight. They will be crooked, but alive, and strong. Maybe that much stronger. This is how I feel, too: not perfect, not worry free, not whole but alive and with so much to live for!

Although there are plenty of things different for me, different than before the surgery and different than a healthy person, I can say that I feel like I do have a full life. I work full time, I travel, I write, I advocate, I walk (although not very fast, nor running), I eat what I want to eat, for the most part – a proof of this is all the 10 lbs I gained over the past year! I could be skinnier (I am 115 lbs) and less out of shape, and I wish my heart could do more to support that plan. Ever since I moved to lower altitude, my energy level is much better than when I lived at 4000+F. I still get tired, but I feel like I last longer than before.

How I have felt since surgery seems to be changing constantly. Some things have been the same since the first day after surgery (the numbness in my left arm, the shallow breathing, the raspy voice which sometimes completely vanishes, the difficulty remembering common words, the occasional stutter, the very weird blood pressure), but some things are new: the shortness of breath when I exercise or walk up the stairs is still lingering on, which is surprising to me, the occasionally high pulse (even on a beta blocker), the dizziness and ringing in my ears, the feeling of the earth opening up under my feet and having no stability at all. A new thing is also the fact that now, I can hear my valve even when it's not completely quiet in the room. My valve had been so quiet for the longest time after surgery. But now, I can hear it, and my husband, who would be sitting near me, can, too. It took almost two years to get to hearing it and I cannot tell you why that is.

Every now and again, I have this claw-like feeling in my chest, like someone is squeezing my heart really strongly. I take my blood pressure when that happens and it is as weird as it always is: either 160 over 50 or 130 over 40 – so nothing really strange there. I am not sure why this happens and this unsettles me, but so far no doctor has been able to explain this to me.

I do know that my heart is not 100% strong and healthy, and I have learned to accept that, like I said: I will always be a heart patient and I will always have to keep an eye on it. Diagnostically, they continue to find one thing or another: I have aortic insufficiency and my new aortic valve is still leaking (mildly, though). They also think that my body gets about 64% of the oxygen that it needs to get, something they call cardiac impairment. More tests are needed to determine this for sure and to determine the cause, so more will be scheduled.

I take 10 pills every day plus a shot every other week (I am treating my HoFH along with my heart disease). Sometimes I wonder what it would be like to just stop it all and just see what life would be after that. But I know that’s not possible. I know there is no life if I stopped this all. And I love life way too much to experiment that …

Another constant since my OHS is my relationship with Warfarin. Although I have learned to trust it more, and although I have been on a dose now for a year or so that has not needed to be changed because I am constantly in range, I do always fear that something (anything, really) will make the INR dip low or sky-rocket. I have learned that antibiotics make it sky-rocket and apples do, too. I have also learned that since on Warfarin my liver responds faster to other liver-poisoning drugs (like antibiotics or even pain killers).

I have stayed away completely from spinach and kale, but I still eat peas, green beans, broccoli and salad several times a week. It was hard to get used to this “consistency” thing – you have to have the same amount of greens every week. It was hard to figure out a cup of veggies every day in my diet, but I have learned to think in weeks instead of days when it comes to Warfarin: if I have those 4 cups of greens (or whatever it is) in a whole week, I call it good. I don't obsess so much over what I eat every day, or with every meal.

My life with INR is like that night-light you have in your bathroom that shines from under the door at night: you know you're settled for the night and it's nice and quiet and ready for slumber, but there is one light which will not turn off, as a reminder that it's not completely dark, after all. But you can still sleep through it, nonetheless.

I have not cut off a piece of any of my fingers anymore, and with an INR range of up to 2.5, I fear internal bleeding less and less. I am still very much afraid and paranoid about infections. I have become your worst nightmare germaphobe, but I can live with that. I get frequent UTIs which throw me in long psychoses, obsessing terribly over whether the infection will get in my blood stream!

My relationship with alcohol has changed, too: I drink mostly non-alcoholic wines and beers (yes, they make them!), and I have an occasional glass of something “real” which will always raise my pulse and make my heart beat so hard and fast I feel like it will pop my chest open. I don't like that feeling, so I stay away from it … I don't think this is a huge sacrifice since I feel great when I don't have alcohol – so, it's all good. Coffee is much the same as alcohol: I have only had decaf for two years now and some weeks I have no coffee at all. I seldom crave it anymore.

I keep telling myself that this is all a process, and things will change as my body changes and ages and develops. And it's true. I expect my symptoms to be different over time and changing, to some extent. But every time something new happens I wonder is it just a change? Or a change for the worse?! I wish I had a doctor I could trust again to explain all these to me, but not yet.

I have moved to NC late last year and the doctors that went through my heart surgery with me are not near me anymore. I tried to see a cardiologist in my new home town and it was a bad start. She did not get what I had gotten through and the seriousness of my heart condition at all. Now, I am starting anew with another cardiologist, but it will take a while to see him. I have learned that bigger cities means bigger waits to see people and do tests. I worry about not having a heart doctor at the moment. Having one I trusted and one that was involved was my security blanket. And I miss that dearly. I never underestimate the peace of mind that comes with a good doctor who knows you and gets your condition. Knowledge has always been power in my opinion, and I miss that!

But aside from all these symptoms and fears, I think life is good. With every morning when I see the sky first thing, I thank God and my surgeon for giving me another day. Life is what you make of it, they say, and with my limitations and nervous worries and all I am trying to make a good one. I love my husband, I love my family and although far from them geographically, I try to stay as close to them as Facetime and Skype allow. I am there for my team at work, sometimes for 10-12 hours every day (I work from home now, by choice, not because of a disability). I am planning trips and looking forward for more camping this year. There are so many trails unexplored out there! Life goes on, obstacles and all, crooked body and all. We just need to find that clear blue sky to rise towards. The rest is a miracle!

You can read about my surgery and hospital stay in this blog which I wrote two years ago: http://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html

For a visual journey (through pictures) of my first year, you may scroll through these shots: https://wanderworldpics.shutterfly.com/22602

Much health to all and much hope!