When Being a Germophobe Finally Stops Making Me Feel Like a Pariah

Protecting ourselves from germs in the time of the coronavirus pandemic

My brother-in-law gets the award in our family to be “a germophobe before it was cool”. I won’t steal that title from him. I am only his late-adoption second follower. Nowadays, the whole world’s gone apey with buying disinfectants!

The truth of it is, for me, until I had my open-heart surgery, I thought all the precautions were a bit exaggerated. And then, about four years ago, they opened my chest. And cut open my heart. And after all that was over they told me that I had no immunity for a while, because my body was busy creating white cells to heal my stitched-up heart and not creating white cells to protect me from infections. Infections which, in turn, could muck up (that is a very correct, strictly medical term) my newly inserted artificial aortic valve and my artificial aorta and cause me to get endocarditis (heart infection). In which case, I’d have the surgery all over again to redo the transplant. That is, if I were lucky enough to catch that before it would kill me.

I guess what used to be somewhat of a slur word has now become ennobling. Today, we’re all trying to protect ourselves and (hopefully) everyone else around us from spreading the coronavirus, so we all take pretty much the same precautions I have been taking for four years now. Because what we hear is that the number one thing we can do ourselves is to stay clean, kill the virus by repeated cleaning, and not spread it, if we do get it, by staying put. Some of these things I have now done since my surgery four years ago.

Some of the things I have always done:

·       I never put my silverware in a restaurant on the table. I wipe them (sometimes with hand sanitizer) and put them on a clean napkin (inside of the napkin out). Of course, we don’t worry about this right now, since we can’t eat out.

·       I never put my menu on my plates (again, now it’s not helpful, but keep in mind for when we get set free again).

·       I always have at least two small bottles of hand sanitizer with me. I sanitize my hands before I eat in restaurants (even after washing my hands in the same restaurant), after shopping anywhere, after using my credit card, or filling up my gas tank.

·       I try hard not to touch my face until I get home to properly wash my hands with very hot water and lots of soap. I scratch my nose and face with my elbow or my shoulder.

·       When I travel by plane, I travel with Lysol wipes and I disinfect everything around me that I touch: the armrests of my chair, my seat-belt, the table in front of me, the vent above my head, the light switches.

·       I never wear the clothes I wear on planes and airports the day after until after I have washed them again.

·       I never unpack my suitcase and I never touch anything in a hotel room until I wipe down all the hard surfaces, all the light switches, door knobs, bathroom fixtures, toilet, etc …

·       The first thing I do in a hotel room is remove the bed spread. That is infectious! Not traveling now, but this is my usual routine.

·       We (my husband and I both) wipe the handles of carts in grocery stores, even before the pandemic.

·       I have hand sanitizer not only in my purse, but also in my car and my husband’s car, as well as my travel pack and my carry-on pack.

·       I never go to pools or public hot tubs anymore. Not even to dip my toes!

·       Even before my surgery, I would never use the tubs in hotels, but now, I wear beach flip-flops in the shower of the hotels, for my feet not to touch the public tiles in the bathroom.

During this pandemic, I stepped it up a notch to also:

·       Disinfect the outside of boxes and bags that come from the grocery store with Lysol or alcohol.

·       Throw away (recycle) any plastic bags that I bring home.

·       Wear a mask when I go to the hospital for appointments. No, I am not making them unavailable to the medical staff, these are masks I had had for years. During flu season, for four years now, if I have had appointments, especially in a hospital, I have worn the masks. In January, before we knew about the coronavirus, I had an appointment for an MRI. I wore a mask because it was wintertime and I was going to be in a huge hospital where they see thousands of patients a day, either admitted there or from the ER. You just never know. Now, during the pandemic, I wear the mask even when I go to a clinic. I know they said masks won’t help you unless you’re sick, but I can’t help but think that someone who is already sick like a doctor or a nurse who sneezes around me can infect the air which I am breathing in, so I feel like a mask guards me against that polluted air.

·       Both my husband and I try very hard to respect the guidelines of social distancing nowadays, too. We had a neighborhood party where our neighbors placed lawn chairs in a circle in a cul-de-sac on our street, 6 feet apart from one another. They brought their own drinks and they had a “social distancing neighborhood party”. But I didn’t feel safe enough to go to it. They also brought a table where people could share finger foods.  I guess we’re still new to this germaphobia thing and this social distancing, but sharing your cooking with the neighbors is not, in fact, distancing much …

·       We go to the grocery store 2-3 times a week (we try less but they keep running out of things we need so we end up going several times till we find everything we need).

·       We order out from a couple of restaurants a week.

·       Outside of this, we stay put or walk by ourselves a lot.

And that reminds me: I always have appointments. Whether they are specialists’ appointments, or primary care visits, or lab tests, I have one at the very least once a month. This month, I was scheduled for a physical but my cardiologist emailed me to tell me not to go to it. He said the risk of exposure to the virus will be higher than the risk of skipping a routine physical, unless I had serious concerns that I had to clarify with my regular doctor. Which I didn’t. Funny thing was: the next day my regular doctor called to cancel it with pretty much the same reason: routine visits will stop so the staff can be available for the increase demand of possible flu patients.

As a heart patient, I am considered to be someone with a higher risk of mortality and increased severity if I contract this virus. I am trying to continue my “normal” protected routine as I am adding new guidelines to my caution. I am not panicking and I am not bored yet. There is so much to do in this house, so many projects and things I have always wanted and needed to do that I never had the time for. Time is all I have now – a luxury that might not come around often!

Also, I am not judging but I am shocked that so many people must not have had cleaning products, alcohol, soap and other cleaning supplies in their houses already – because obviously they all needed to get them now?! Or maybe they never got them before and they don’t know that you don’t need to get 10 bottles of Lysol. One will do for a couple of weeks. Or, geez, how long has it been since you really cleaned your house, people?! We were lucky to have most of these products already, but our supplies are dwindling now and the stores are still empty for the most part. Hopefully, people are stocked up for a while and the bounty of what was once overflowing American bounty will return.

Stay clean. Stay safe. Stay distanced. Keep warm hearts, everyone! Let’s see each other on the other side of this, with lots of good stories to tell!

Between Tests, Doctors' Visits, and the Rest of My Life

It's been a while since we chatted. Life seems to have sped up there for the past few months. I guess it's good when you make plans but even better when you get to carry them out. But delay no longer.

I have been traveling, mostly. Some of it for work, and some of it for pleasure. Since the beginning of August, really, I have been hopping airplanes and Marriott hotels like it's my full time job. I am tired. I won't lie. I am doing it, mostly alone, but it's taking a toll on my stamina.

During this whole time, I have also worked full time and have carried on with my cardiac rehab appointments, sometimes as often as three times a week. Just writing this makes me yawn.

In September, my regular doctor did some blood tests to check for a few things, but especially my cholesterol and liver values.

The good news is that my cholesterol values are at an all-life low. It is truly unbelievable how well drugs work for me, and how lucky I am. Not even one hour of apheresis in my entire life, and the drugs I am on just dropped the cholesterol this much. My LDL is still not at the target that the doctors want, which is below 70, but I am happy with it. News like these don't happen often for HoFH patients!

The bad news is that my liver enzymes continue to be elevated. This trend started two years ago when I added the Coumadin, an anti-clotting medicine, after my heart surgery, as well as the Praluent injection. Now, my doctor is ordering a liver ultrasound to understand what is going on with it, if it is visible on an image. I am not really sure what the course of action will be to try to get the enzymes back to normal. Although I do have pain in my upper-right abdomen, I have virtually no other new symptoms from all this medication which seems to work so well. But … we will have to weigh the good with the risks and make some decisions pretty soon.

During one of my work travels, I had the chance to go back to Utah and meet with my surgeon for my yearly appointment. He insists that he still wants to see me every year till further notice. I love this, because I love him. What he has done for me, the life he has put into my remaining years is absolutely humbling. He was truly scared when he realized I had not only had my recommended yearly echo but also an angiogram since I saw him last year. He thought that something bad happened that required the angiogram. I explained that because I had moved to another state, I have a new cardiologist who is trying to understand my angina symptoms and explain my weird blood pressure numbers. Part of that quest was the angiogram to figure out whether there are severe blockages in my heart. (http://livingwithfh.blogspot.com/2018/05/another-cath-some-more-answers-and.html)

I shared with him that the same blood vessels that were 99 and 90% blocked before he did the surgery are now between 30-50% blocked. I asked him how could that happen, because as I said before, I cannot credit the Praluent alone with this huge improvement. He reminded me that not only did he bypass the blocked arteries, he also performed endarterectomies (https://en.wikipedia.org/wiki/Endarterectomy) on all of them. He also reminded me that it is clearly written in my operative report which I have. Now, if I didn't just chalk this up to a “fancy medical term” and I would have actually looked it up, I would have known. But I did not. Now, why didn't my current cardiologist know this, when he has my operative report himself, I am not sure. The cardiologist looked puzzled that I had bypasses at all because the main arteries were in good shape. Again: many thanks to my brilliant surgeon!

He said he not only bypassed them “he also cleaned them out for good measure.” I am telling you – the man is a saint! So, now the mystery of my virtually clean heart arteries is solved: endarterectomy + bypass grafts = functional arteries.

As I mentioned briefly, I have also been going to rehab since August, too. I am still very much underwhelmed with this program: there is not much monitoring, or explaining what is going on. We write our BP and pulse values in our charts ourselves. How long or fast we exercise seems to be up to us only. Whether it's because of my very fast lifestyle this year, running through airports with heavy carry-ons, or rehab, my stamina seems to be much improved and my breathing is also a little less shallow and my chest a little less painful when I exercise. We have this steep hill in our neighborhood and every time I climbed it until recently (maybe a month or so ago), my chest would tighten and my left upper body would be completely numb and painful. These symptoms are gone now, and I can climb the hill, still slow, but with no pain.

I am sure that since we moved closer to sea level (we were at 4000 ft in Utah, and we are at 500 ft now), my breathing has gotten deeper and my heart feels better overall. Every time I go to Utah for work now, I clearly see the difference between how I breathe at home and how I breathe there.

There are days when I want to call the cardiologist and quit rehab altogether (still have 17 sessions to go – argh!), but I am really hating having to argue with him. He believes very strongly in this rehab business and that this alone will improve the blood flow in my heart, grow new arteries, and improve the pump function. I might just stick it out. Or at least I will try my best to for as long as I can. Trying to balance work and travels with a very strict rehab schedule, though, might decide otherwise. If I truly saw the full benefit of this exercise alone, without what I do on my own, I would definitely put my health first and finish the 36 sessions that come with this program. But I don't see that going in for an hour and 45 minutes a couple of times a week and walking on a treadmill (which I can do at home, with no schedule, no driving for an hour one way, etc) makes that much difference for my health. We shall see …

I hope that all of you had a great summer and are having a beautiful fall. I hope you are ready to close out this year in health and peace.

Much health, to all!

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!

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.

When I Met My Extended FH Family and Learned a Thing or Ten

“There are no strangers here; only friends you haven't yet met.” (W.B. Yeats)

I have recently had the rare opportunity and honor to attend the training for FH Advocates organized by the FH Foundation which took place in Arlington, VA. If you're not familiar with this organization by now, you should be. They are doing great things to advocate for, educate and inform patients and medical staff about our condition. They have a terrific website, full of good information. If you or someone you know has been diagnosed with FH or is wondering whether they should be screened for it, and you don't know where to start, start there: thefhfoundation.org.

The training for advocates is just as it sounds: the staff and other resources hand-picked by The Foundation train people to be advocates for this disease. Individuals with FH, their family members or parents or anyone who has worked with people with FH can be an advocate. You learn everything from what this condition is all about, what makes it unique, what makes it like other conditions (here's a hint: nothing!) to what to say to patients, doctors, or the media when you advocate for it. There are two days of intense training followed by an elective day of going to Capitol Hill and speaking with senators and representatives about this condition, why it's important that people are aware of it, and how they could help bring awareness to their constituents.

I know, that sounds like a lot, and trust me, at the end of the three days my brain was absolutely fried. My brain was fried, but my heart was full. I am not sure how the FH Foundation staff has pulled this off, but they seemed to have painstakingly hand-picked the most amazing and nicest people on the planet. In the US, for sure. Never in my life have I met such wonderful folks: friendly, kind, humble, and giving. They shared each and every one of their experiences with FH, their heart stories, their family's stories as if we were olden friends, gathered 'round the ceremonial fire of cleansing, of letting go, and of taking in new life.

I have known that I have FH for 36 years now. Wow, just seeing that written down, it feels like a lifetime – which I am sure it is, for a lot of folks. In my family, everyone jokes about my cholesterol levels, because at 600 mg/dl, they call me a “champion”. My dad's family has it, so to us is just part of who we are (I suspect mom's family does too, but data is fuzzy on that side of the family). I never met anyone else outside my family, barring the folks I occasionally chat with online, that has FH. I have always wondered if other people can relate to my journey – with everything from the many doctor's appointments to being frustrated with the answers we receive, from insurance coverage challenges to what we should be eating every day, from the many a drug cocktails we feed ourselves every day to all the heart complications that ensue after some time.

I have found 30 or so complete strangers that shared the same questions and the same hopes and fears as myself. The most interesting thing to me was that we were all very different, coming from all four corners of the US, from different layers of the social web, of different ages (think 12 to 70 or so), at different stages in our medical journey, but all with a common denominator: we have FH and we're all living with it. For better or worse, through pain and through doubts, through successes and losses, we are here today to tell our story.

I think this, our being alive, is what unites us all into being advocates – because we want people to know, to be aware, and to find a way to manage this disease so that they, too, can continue living. We are all driven by this passion for life, and we want to continue with that, before any “events” get the better of us.

I have learned in my short time with these folks that we are all living proof that we love life, and we want to live it to the fullest. We all want to be here for our future. Whether we have 30 years to live, or 80 years to live, we all want to squeeze every drop of life out of this existence here, and we're ready for it. With needle marks on our arms, and stents in our hearts, we're doing it.

I grew up in a world that always puts the bleak and dark in front of any prospect: “Ah, well, you know, we all owe a death at the end.”, we say back home. They told me I was going to die by 25. But here, in Arlington, we talked about everything you can imagine except about death and about the end. We all want to be here for our kids, for our parents, for our nieces and nephews' graduations and weddings. Our collective spirit was smiling ear to ear the whole weekend.

Don't get me wrong: we are not delusional. We all have very grave stories to tell, but a grave outlook on everything would make this journey that much harder. And we're done with the hard parts. Those are a given. The hope and the lust for life is what we need – and from what I have seen, we all have plenty. It is this drive, and this spirit, this virtual smile on our collective face that should, I hope, drive us, as advocates, to spread the word about this condition.

Archbishop Desmond Tutu said in “The Book of Joy”: “...as we discover more joy, we can face suffering in a way that ennobles rather than embitters. We have hardship without becoming hard. We have heartbreak without being broken.” This is what comes to mind now, as I write this and think about these new wonderful friends I made.

You would think that someone who is taking 10+ drugs a day every day, and a couple of shots a month, someone who visits doctors more than they go out to eat, someone who gets so many stents placed in her heart that she has lost count, someone with quadruple bypass surgeries, replaced aorta, or valve surgeries in her 40's or 50's, someone who is in his early 20's and has been diagnosed with coronary artery disease in their teens, someone who is going in for apheresis twice a month and gets their blood drained three times over in one session is bleak, and cynical, and dark, and has lost hope. But this cannot be further from the truth.

This was the most energizing, the most fun, the lightest, along with the spiritually deepest group of people I have ever met. You can almost taste the maturity and wisdom that only hardships can teach us in the rooms these people filled this weekend. We are all great story tellers, and great listeners. I was grateful to each and every person in the room for the way they shared themselves with everyone. I have known all my life that battling disease leaves you naked and exposed. Raw, against the elements. There is power, strength, and true grit that you must amount when you go through life like this.

Apart from the human factor which was by far my favorite part of the weekend, this weekend has opened up new doors of understanding this condition for me. I thought, after 36 years, and virtually hundreds of doctors, I knew everything. But I have learned some new things, still. I have also realized that I have a long way to go before I truly know everything.

Here are some of the new (to me) learnings from this weekend:

1. There could be hundreds, maybe more, mutations for FH. Not two FH cases are alike. Depending on what receptor is missing or not working correctly in our bodies, we are all different cases of FH. This also includes members of each family within which the genes were passed.
2. Because of this, no two therapies are alike. Some of us are on statins, some are on pcsk9 inhibitor drugs, some are on apheresis, because they cannot take any drugs, and some are on a combination of all or some of these and more.
3. There are two types of diagnoses of FH: the genotype (looks at the mutations in your genes) and the phenotype diagnosis (looks at the levels of cholesterol). For a more in-depth description of what they mean, please refer to this site: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3104361/
4. A level of cholesterol of more than 400 mg/dl (mine is in the upper 500's – low 600's without therapy) could indicate more accurately a Homozygous FH. So, I am now not only more inclined to believe I have the HoFH kind, but also to be more sure that my mother probably has FH as well (her levels have been in the upper 200's and lower 300's all her adult life). Another possibility would be that I have a complex double HeFH mutation.
5. To know for sure what type of FH you have and what mutation, you must undergo genetic testing. I am looking into that with my cardiologist as my next step.
6. One in every 250 people has FH – so, it is not as rare as one thought. No one truly knows how rare HoFH is. The overwhelming lack of diagnosis of this condition is largely to be blamed for that.
7. Speaking of which: 90% of all FH people are undiagnosed, because the disease is easily confused with regular high cholesterol due to an unhealthy lifestyle. If your cholesterol is not lowered by diet and exercise, and you have a family history of high LDL cholesterol or cardiac events at an early age, then you should be screened for FH.
8. Apheresis is really amazing. I have met this wonderful lady whose LDL cholesterol is 220 mg/dl before apheresis, and this procedure takes it down to 22 mg/dl. Twenty. Two. I was in awe. I am still not running up to sign up for it, though. This is just a personal choice, of course, and I salute and bow to the people who have the gall to do this! It takes guts, folks!
9. I now know what a “high intensity statin” is, and that there are only two of them: Crestor and Lipitor – which are deemed to reduce LDL cholesterol by up to 50%. All others reduce LDL by less than 50%.
10. Along with coronary artery disease, aortic valve stenosis is also a complication of FH.

These are just the 10 that just came to mind. But my notebook is full of other goodies which I will share with my cardiologist.

I have also learned that all of us have encountered more than our share of clueless doctors, in want of a better word. We have all felt, at some point or another, like we are educating them on treating us. This was not totally surprising to me, but it does give me additional drive to continue spreading the awareness – not only through this blog, but with every doctor's visit.

I could write a whole book about how amazing this experience was. Not only how information packed, and numbers driven (I am a sucker for statistics) and educational it was, but also how life-affirming and spiritually rich it was. I will be forever grateful to the FH Foundation folks who are tirelessly fighting for us all, but also to all the strangers now become friends who shared themselves with us.

An old Tibetan saying goes like this “Wherever you have friends, that's your country, and wherever you receive love, that's your home.” Thank you all for welcoming me home.

The FH Foundation Advocates and some staff

Labor Day Adventures

We have not done many travels this year, given my recovery, my tiredness, my quirkiness about my sleeping arrangements and my paranoia that I have to be close to my doctors before I know for sure if this 'new heart' actually works on its own. 

But given that we both love to travel and photograph, we have gotten around close to home and either gone camping a couple of times, or visited some destination towns that are within driving distance. 

My doctors have not advised me against it, but I do not feel comfortable (or wise) to travel by plane right now. I am still adjusting in my new skin, really. 

For this past Labor Day, though, we drove to Moab, UT, which is only about a 3 hour drive away from us. Our previous extended trip was on July 4th, to Idaho, and I have to say I did much better this time in Moab than back in July! The heat was not as intense, either, which helped a lot. We rediscovered this desert town which we know fairly well, by visiting a new (to us) National Park (Canyonlands), a winery (I know, in Utah of all states!), and by eating at a couple of new eateries, one of them (Sunset Grill) with an amazing view of the valley. 

We did not hike very much, outside of getting out of the cars to capture some of the landscape in Canyonlands, and outside of walking the downtown from one end to another a couple of times, but I did spend lots of time in the car, which did not seem to bother me as much as before. 

Little by little, I am building more endurance, I think, to do things outside of my routine and to do them for  longer stretches of 'discomfort'. 

This is me, above above one of the overlooks in Canyonlands.  I felt very victorious climbing up on this high rock, with gusts of wind trying to pitch me in the abyss below. What beautiful country we have and how lucky I am to be able to be well enough to travel and take it all in!

Much health to all! 

About Camping and Life in the Past Six Months

I still remember every day the words of my surgeon, on the first day I saw him in ICU. Drugged up and all, I still remember him saying “Alina, this will be a loooooonnnggg recovery ...”, and he made this gesture with his hand, as if he were showing a long, wavy and bumpy river flowing in front of me. This is what drives me, most days, when I get impatient with myself and with being pulled behind.

This month, I have reached 6 months since surgery, a milestone that was only a dream when I came out of surgery. I’ve had undoubtedly less bumps than most people on here, but I had some, and I know today that my life before the surgery will never return. But that only means that I have to learn to live the new life, for which I am grateful and humbled! I’m not missing the old life, most days, but then what would be the point, right? Onward is the only direction I know.

I follow this site (www.heart-valve-surgery.com) where heart valve patients tell their stories. Reading about all their journeys and living my own is amazing to me - we’re lucky to have such great gifts: our lives, to begin with, and then this Heart Valve/ OHS community and leaning on and learning from each other. Such a blessing. The opportunity that I have had to meet my medical team, other patients, in rehab, and people online, in such forums, has been a true gift. The knowledge I have gathered during this time will save my life. I know this! This gift alone has made this journey worth it to me.

While living through the past 6 months, I’ve always thought that we all went in this thinking we’ll fix our hearts and we’ll be better. And I think some of us will do just that. But at the same time, for me, I’ve also learned that I’ll never be ‘OK’. I’ll never be “not” a heart patient. I’ll never be able to leave my house without my Coumadin, or my MedicAlert bracelet. I’ll always have just a little bit of an odd feeling in my chest. Different than before, but always a reminder. I’ll always check my heart rate and my BP almost daily, sometimes more than that. And these are all OK things. These are my new reality. I try to not label it, and just be aware of it: it’s not ‘good’, nor ‘bad’. It’s just there.

This journey gave me a new life, for sure. Not one without pain and worry, but one that is more grateful. More patient. Slower and more in-tune to my body and the world around it. I pick my battles very carefully nowadays, and I know, at the end of the day, what was important to me on that day, when I went in for OHS. For this life I am grateful and humbled, and I would not trade it for the world. Even if it will never be devoid of bumps.

We tried camping for the first time in the beginning of June - just for  one night, at a campground about 45 minutes from our house, and I thought, then, that I was going to die. My heart felt heavy and was beating erratically, my chest and back were killing me, and I felt extremely tired, and fainty.

A couple of weekends ago, we tried camping for one night again. This time, we camped “off the grid”, just on the side of a national forest road, by a stream, in the middle of pretty much nothing. Lately, I have felt better and I am s-l-o-w-l-y pushing boundaries, and try to venture out where there is no cell phone signal, although in close proximity to our house (this time we were only about 45 away, too).

This second time, I felt really good. I don’t sleep very much elevated anymore, so just a couple of pillows were enough for my sleeping arrangement. I actually could go to work and not feel like I was going to faint or die the next day, too. I did get some pains in my ribs and spine and lower back, but they were probably from being in the camper bed, which is not as comfy as my own, at home. The first time I went camping, I worked for a half day the following day, and then I came home and crashed! I could not even cook, or wanted to eat, or anything, I was drained and my blood pressure was odd. This second time, I worked full days, on Monday and Tuesday and then I came home, after 5 PM and worked in the yard for about an hour and a half each night, watered plants, planted some new ones, and cleaned up rose beds. Wednesday, I finally felt exhausted! I still worked a full day, but I came home after 5 PM and crashed! It was time - my body had had enough.

We went camping this last time at altitude, again (over 6000 ft; our house is at 4000 ft), but it didn’t seem to bother my chest at all. We went for two short hikes (less than a mile), before sunrise and after sunset, and one of them was uphill, but it was not hard to do for me. No out of breath feeling, or anything - which always surprises me.

All this time, while I was out there, and in the two days following the camping trip, my blood pressure inched towards being close to normal, too. Usually, at rest and with no exercise, the numbers are odd, 140 over 40 or some such thing, but after exercising (yard work, mostly), I saw the numbers getting closer to what is considered normal - like 113 over 48 or 113 over 52. So, although I am not ready (nor will I ever be) for a marathon, yet, I think my heart wants to start moving again.

I still live with constant reminders of my OHS, of course, and I am aware that I will never be fully free from thinking about it, or adjusting my days around it. My chest is still sore; I still call it “crunchy” as I think I have the distinct feeling that it’s made of multiple pieces, and is not one, solid bone. My incision is still sensitive - I still cheat on my seat belt, as it’s too heavy on my chest.  I still cannot lift much (like my computer bag and lunch box), and I still use a dolly for all my “work stuff” and I park in the handicap parking, at work.

My nerve damage in my left arm is still there and actually, I think it’s been getting worse. I have this frozen feeling in my pinky and ring finger which is constant; sometimes, my whole left arm feels frozen. My left leg is still numb, but different than my arm. It’s more like a log that I am pulling around. (they harvested an artery and a vein from my left chest and left leg, respectively, for the 4 CABG’s they did along with my aortic valve and ascending aorta replacements).

Heat still bothers me to no end. Even when I do nothing, even when I just sit there, the heat makes me short of breath and tired. This was the only thing that bothered me during our camping trip - it was supposed to be in the low 80’s but it was in the low 90’s instead. And even in the shade, and drinking water constantly, I felt lethargic and my chest felt heavy, as if my heart was working overtime.

I still obsess over my INR. Now, I measure it at home, and I panic when it’s something like 1.7 (my range is 1.5 to 2), because I know there is a margin of error of something up to 0.3 points. But so far, knock on wood, no bleeding nor clotting events, than Goodness! I have my cell phone alarm set permanently for 7 PM at night, to make sure I take my Coumadin the same time every day and not miss it. This will be set forever, I am sure.

I am still nervous about flying, and I think I’ll wait for up to a year before I venture out on a plane. This is just my own decision, I have not run this by any doctor. I just want to make sure I can rely fully on the new equipment I have in there. But every day, I gain a little more trust in it. I used to be nervous to be alone in the bathroom, taking  a shower, with my husband just downstairs. But now, he goes to work before me, and I am alone in the house, as I get ready for work. I drive 30 minutes to my office and I am in one piece, thank Heavens, every day. I had to get used to feeling OK about being independent again in these past months, but it’s happening.

For those of you just starting these heart journeys, all the doubt, and the questions and the fear are very normal. There is no such thing as a dumb question, so ask here, ask your medical teams and probe them till they make you feel at ease. This is about your life, and they owe you all the answers you need to know.  Learn as much as you can to set your minds at ease.

I found, for me, that knowledge has been power, and that helps me through the days when my body feels sorta shaky. Because I know some things, and because my doctors schooled me, I can trace why my body is feeling shaky some days - work, heat, non-sleep, eating or drinking the wrong things, stress all affect the way my heart feels. And as one of my PA’s said “you gotta respect the heart, man!”, so the way my heart feels is the way my whole body will feel. This journey teaches me that with every step.

Much health, confidence and strength to all of you. Smooth roads, and heart hugs to everyone. 

 

At the campsite, in the dusk, awaiting dinner. The leaves are changing already, in The Rockies. I feel like the whole year is behind us already ...  

Life at Five Months after Open Heart Surgery

Tomorrow it's five month to the date since my OHS. To recap, they replaced the aortic valve with an On-X valve, they replaced my ascending aorta with a Dacron graft, they cleaned out my aortic arch from all the cholesterol calcification (they needed to put me in circulatory arrest for these two) and they did 4 by-passes, so they harvested a vein from my left leg, and an artery from the left side of my chest. What can I say? They hacked me up pretty good.

Life has been s-l-o-w-l-y creeping back to 'normal' in the past 5 months – whatever that 'normal' means nowadays. I have started working on May 17, and initially I was working 4-6 hours a day, with working from home one to two days a week. Now, I work pretty much full time (no overtime anymore, just 8 hour days), every day of the week from the office, which is about 30-45 minutes away.

I have really good days, when I move freely and I can accomplish a lot, physically (commuting just fine, cooking dinner, watering my yard by hand some days, house chores, light shopping) and I have days when everything screams in pain: my chest, my back, my whole upper body, generally, my hips. My left arm and leg are still numb, same amount as 5 months ago. Some days they aggravate me, and they feel swollen, and some days the pain is bearable, and they just feel like annoying needles poking me.

My blood pressure has inched itself up to close to normal values and I only take it about 2-3 times a week, now, not twice a day, daily. Last time I took it, it was 126 over 50, so slowly getting the diastolic closer to 60 (used to be in the 30's and low 40's for months).

I am still not able to carry much weight. I still use a dolly for my work bags and I push my laundry baskets with my feet till they make it to the laundry room. I still “cheat” on the seat belt, and I leave it very loose across my body, because if it's tight, it bothers my chest a lot. I still need help with my heavy pots, when I am cooking, and help pilling my cat, because my left hand is half frozen, still. I still need help with grocery shopping, too. I go in for a couple of things and I manage fine, but when I have to push a cart full of stuff, I need my husband every time. Unloading and loading them from/ into my car is hard, too, so I can't do it alone, either. I tried a couple of times, and I start panting like a dog!

My chest is very sensitive, still. My incision (full sternotomy) has keloids from space to space, and it's still very sensitive and bright red. Sun hurts it even more, so I cover it pretty carefully when I am outside. I have days when my drainage tube scars are very touchy, as well, and sometimes itchy. I had a mammogram a couple of days ago, and when they did the left side (which is still frozen, numb), I thought I was going to pass out from pain. The nurse almost didn't want to do it at all, because “the scar looked fresh” and you're supposed to wait for at least 6 months to do this test, after heart surgery. I had put off mine for so long, that I went ahead and did it. But if you can wait more than 5 months for yours, do it, because I think it will hurt, otherwise.

I went on my first real overnight trip (two nights), in a hotel over July 4^th. We went to Sun Valley, ID for two nights. The drive up there was about 5 and a half hours, and the time in the car bothered my ribs. Once there, I took my sleeping setup (thick blankets to place pillows on top of, to sleep almost sitting up), but I discovered after two nights that I can get rid of the blankets and I could sleep with just two pillows and I was fine. That was a huge milestone, as now I can sleep almost flat again. I still cannot sleep on my side, though, which is my favorite position. But it will happen, with time. I know it will.

The trip was great, overall, but I did get very tired the one full day we were there, from walking around in the heat, in a hilly town. I had to rest for about an hour- an hour and a half between my two couple of hour walks that day. But I made it.

I find out that heat is my biggest enemy. The minute the temps make it over 90F, I cannot be out there and JUST BE, for more than half an hour, before my heart starts pounding and I feel like I am about to pass out, veins swelling up on my hands and feet. If I 'do work' in that temperature, I last even less than half an hour.

I have had a couple of episodes of feeling fainty/ dizzy, and feeling like my head is too heavy, where I have to sit down and rest a bit, but those are very rare now, maybe once a week or so, and they are very short lived. They usually come when I am extremely tired, after doing too much, or when I am in the heat.

This past weekend, we had a house visitor, and she had never been in our area, so I had a lot of things planned for her. Just to give you an idea, I took her to dinner on Thursday night (about an hour away from our house). Then, we drove to a resort about an hour away from our house again, and had lunch and shopped for about 3 hours, in 85F weather. The walk between the stores was all outdoors and on very steep hilly streets. Then, I drove us another 30 minutes to another resort where we met my husband for dinner. Then, Saturday, we went to a lavender farm, where we walked around for about an hour in 95F heat (or more; it was very, very warm out there!!), and then we had a cookout at our house (heat again). My ribs were hurting big time by the end of the day yesterday, from all the car rides, and driving and I was very much drained – just kept yawning early last night. This morning, I slept in, and I did get dizzy in the shower, and very tired. Today, I am taking the day off, nap, sit on the couch, and just catch up on life.

Five months ago, or even 2 or 3 months ago, all this would not have been possible! I am amazed every day at what my body can do. I still get no warning about being tired. When I have the stamina (and that has improved amazingly over the past 5 months!), I just go-go-go, and usually the following day, the tiredness hits and I have to just stop the show!

My biggest disappointment is my INR values. I am still struggling with keeping it within its range (which is 1.5 to 2 for me). Two Fridays ago, I went in for an INR check and it was 1.6 – which is good, but … it was too low for my comfort. So, I ate just foods with very low vitamin K (like tomatoes, cucumbers, pickles) for a couple of days, just to make sure I won't get it too low. About 4 days after that, I took it again and it was 2.8! I ate a serving of peas, just to make sure I bring it down a little, and in another 2 days, it shot up to 3.1! I did not change the dose, of course, and I left several days go by, with diet in between to help it down … But no way, it shot up to the skies.

In the past, when I had my 3 servings of greens a week (always the same quantity, about a cup), it was on the lower end of the spectrum and at that time, too low (after surgery my range was 2-3 and then, the INR was hanging in the 1.5 to 2 range). It's bizarre, and I have not figured out yet what I am doing wrong … Still looking for ideas and ways to manage it, and to keep it somewhat consistent. Watching what I eat every meal, like a hawk, does not seem to cut it.

I am going to the clinic every 2 weeks now, and I measure it at home, too, myself, on the “off” week, when I don't go in. I wish I could rest assured for about a month that it can live in the right range, but it has not happened yet. I am happy that it's not typically too low. Lately it's been either within my new range, or very much higher. The danger of bleeding is bigger for me than the one of clotting the valve, and for now, I am learning to live with that fear. I'll have to say, it seems to be easier to handle the fear of bleeding than the fear of clots.

I sometimes lie awake at night thinking of my “fake parts” inside of my heart – the artificial valve and the artificial aorta. I am visualizing them, and imagining them at work, and praying and casting a small blessing on them, asking them kindly to keep working for me. It's kind of eerie what they can do nowadays. I am so grateful that I had something that could be fixed. There are so many hundreds of thousands of afflictions out there that are hopeless for so many people. For innocent babies and unborn children, even. I got lucky! I am also learning to trust them more and more and seeing them as part of me, and not a strange 'body' anymore.

The one thing that open heart surgery has taught me so far, a very powerful thing, is just how much our hearts work. Right after surgery, when my poor heart was beaten up senseless, and so tired and so weak, for month, everything, even breathing, walking up a flight of stairs very slowly, showering took a Herculean effort. Sitting up was an effort, for days and weeks. Putting my shoes on took forever, and it rendered me breathless. This is how I knew my heart was not ready to do all these things yet, it was still recovering. I never take any move of my body for granted anymore, because I know of the amazing hard work that goes into it from my heart. I am so thankful and so humbled! 

The 'rhythm' of the past five months has been just 'one day at a time', and I continue to keep that stride. I never have two days alike, and every day teaches me new things about myself, and about this heart disease journey. As one of my favorite songs goes, "the only way out is through", so I'm happily carrying on through this amazingly lucky journey I have been cast on and eagerly waiting what is behind every corner, of every day. 

Much health to everyone, always!  

Figuring Out How Much Is Too Much

I can't believe it's summer already! We hit mid 90's around here this weekend and that, for sure, is summer. Given that my surgery was in February and the most of my heavy recovery time has been through the spring (not that now I am fully out of the woods!), I feel like I have skipped a season this year.

So, it took my body a bit by surprise when my husband and I decided to go camping for one night this weekend. Am I ready? Will I be tired? Will the altitude bother me? How will I sleep in the camper, since my sleeping “scenario” is so involved at home? All these questions and more bugged me, but we did it anyway.

Altitude didn't seem to bother me, as I was around the camp and as we took a walk around the campgrounds. My blood pressure was still the usual crazy self, with a low diastolic, but my pulse was normal and the systolic in the 130's. Yes, I travel with a blood pressure monitor now, to stay in touch with what's going on “inside” and I do keep a journal with the values I find.

 

This was at the half point or so of our campground walkabout. It was a warm day, and before surgery, by this time, my face would have been completely burgundy red. It never got that way, even by the end of the "hike". As you can tell, the trail was a paved road, so not very strenuous, but you can see the incline. 

The backdrop, like everything around where I live, is stunning. 

  So, it all seemed like my “now, normal” self during the first day we were there. At night, though, just laying down, I could hear my heart beating strong and fast and somewhat arrhythmical, too – faster and slower, then fast again … My chest didn't bother me while walking, but when we hit a steep incline, I felt like I was not taking enough air in. Nothing hurt, but I just needed more/ deeper breaths. It felt very different than the angina I had for years before the surgery.

We didn't do much along the lines of physical activity, on this overnight trip, other than the 20 minute or so very slow walk around the campgrounds. We mostly rested, read, painted, made a fire, played a board game. We took it very slow.

Then, when we came back home, I was out in the 90+F heat for maybe 30 minutes, just helping my husband park our RV and trying to help with unloading. I got extremely tired doing that. I came inside and left the unloading to him, as I washed a couple of easy dishes. Then, I took a shower, and honestly after all that, I felt like after coming home from the surgery – extremely, incredibly, unbelievably tired. I felt like something knocked the wind out of me. Very weak, and like I was going to faint. It was not quite light headed-ness, but it was very marked weakness and a drained feeling. I had to – had to sit down and just do nothing for a couple of hours. I did some laptop work and I ate a salad, but not anything else. My blood pressure was a little high, at this point, too (141 over 53).

No idea why such tiredness after this one night escapade. Maybe just being displaced and not all the way comfortable in the camper took its toll? Or maybe the changes in altitude did have an effect on my heart? Or maybe the 30 minute heat did it? Or maybe all of them. No idea. Just taking one day at a time and finding out where the new boundaries are.

Camping was amazing! So good to be in nature again, and to breathe fresh air, to look at endless mountains with peaks still heavy with snow and to smell sap on the pine trees all around and the smoke of a real fire. It was good to at least try to be “normal” again, and do really normal things.

I am not sure what kind of strength I have at this point (almost 4 months), so I'll keep trying to do things in small bites, just to find that out. I still have range of motion and weight lifting limitations, and I still get tired very easily, so I do take things easily, compared to what I did before the surgery. But I try to push limits just a little bit some days, to see how far I can go into normalcy again. My body always reminds me, though, quite often, that pushing it is OK as long as I back it up by plenty of rest.

 

 This is a "bonus" picture of what I eat these days. And unlike before, when I didn't stick to my diet when I camped or traveled, I do stick to it now, because of my food allergies/ intolerance, which make(s) me feel miserable: I still try to stay very low fat and vegan, with the exception of some wild fish. Here is my camping dinner: corn, vegan baked beans "dog" with organic, low fat potato chips and tomato salad. 

The benefit for my cholesterol (although with FH, diet has little impact on it) is that it's a lot easier to stay low fat/ no fat on vegan foods than it is on animal products.