My Love Affair with the Mountains

I grew up in the mountains, more or less. My parents lived in a hilly city, but during all the school breaks, we lived with family in the mountains, on a farm. I have always loved them. There is hardly any place on this planet more peaceful than a mountain crossed by a trickling spring, at sunset. 

Ever since I can remember, I wanted to live in the mountains full time. To me, smelling the pines, lumber, seeing the patterns their spines make against the sunset is pure health and happiness. And for the past 6 years, this dream became reality and I live in The Rockies now.

However, since I got older and my heart was getting weaker, the mountains took my breath away quite literally. Altitude bothered me, more and more. Activities hurt my chest more. I would last very little if I hiked a steep hill or if I walked a brisk walk. Even on a high altitude drive, I would struggle for air, sometimes. A small part of me still wonders if my heart didn't get sicker sooner, just because I live at altitude now.

After my surgery this February, I wondered how altitude will affect me further, or at least how it will affect me now, while I am still recovering. And this weekend, I pushed the limit a little, and we took a mountain drive, where we had to pass over a mountain that was over 8000 ft. I think my paranoia and nervousness was the worst of it. My heart did fine. 

 

Made it!

 
We did not hike, so it was just a drive in the rarefied air of the peaks, but I never had angina and did not become out of breath, like I thought I was going to. I was so happy and grateful once I made it to that one peak. A huge relief doubled by a great feeling of accomplishment overwhelmed me. It energized me for at least another month or so while I muddle through this recovery, still, numb nerves and wacky heart numbers and all.

My long weekend has been very busy, with gardening, chores, cookout, the drive I mentioned all packed tightly in, and I am quite drained. But my heart did not pop out of my chest when I crossed over that mountain. And I made it back on solid ground unharmed. 

I wish to all of you many peaks to climb and many milestone to achieve. Life is possible when you stick with it. 

May 22, 2016: The FH Foundation

When I started this blog (5 years ago) there weren't many resources for people like me, with FH. Since then, there is an FH Foundation and a pretty popular Facebook group that keep us informed on what's the newest around this disease. 

5 years ago, with no other references out there, I decided that had more information about how to handle this disease and what the day to day life feels like that I knew what to do with. So, I wanted to document this information somewhere, in the hope that someone just like me, looking for personal accounts, and what the day to day life would entail when receiving this diagnosis, would benefit from it. I have gotten some great responses from people reading here over the years, and I hope at least one article can relate to each one of you. 

With all this in mind, I had to share this milestone with you. This week, on May 22, 2016, The FH Foundation has added a feed from my blog to their News & Blog section: https://thefhfoundation.org/first-week-back-at-work-and-meeting-the-vascular-surgeon/
 
To say that this is an incredible honor for me is an understatement. I am so glad that I can share my experiences with a wider group of people and I am so excited that this foundation full of great spokespeople for FH has found an interest in my writing. 

Make sure you check out their site, if you have not done so already, and visit all the links to the right of this blog that connect you to more resources that I hope you will find useful. 

Thank you for reading and asking questions, and giving me ideas for writing, over the years. The fun is in the journey together. 

Much health, to all. 

First Week Back at Work and Meeting the Vascular Surgeon

I made it!! I cannot believe I made it in one piece, but I did - I lived through my first week back at work, after being away for 3 months to recover for open heart surgery. 

My cardiologist wrote me a note, to not work more than 4 hours a day for the first 1-2 months. Well, I am not one person to watch the clock, really. So, this first week, I did anywhere between 4 hours a day to as much as 7 hours a day. It turns out, HR doesn't know how to manage a part time schedule for a full time employee, so ... I'll try to stay closer to a full time day of work if I can. However, I am incredibly lucky to be able to work from home some, too, and this way I can  cut my commute a little during this time of adjustment. 

First week was much as any other week in the recent past: good days and bad. Some days, I could pull through with not much thought about it, and some days, I felt like I got hit by that truck again. One of the days, I lost my peripheral vision for some time (hours), but it came back. That same day my blood pressure was yo-yo-ing all over the place: from 95/40 to 155/50 in the same hour, and all at rest. The pulse was high, too ... No idea why, other than being tired. 

It's been hard to maneuver my "luggage" for work - I have a dolly that carries my bags but putting it in the car and taking it out is working my every muscle, and my chest, most of all, and it's making everything pop and painful. Driving has been a challenge, too, just the sheer tenseness of it, and the tiredness that comes with the adrenaline pumping with every cowboy passing me at 100 mph.

Mentally, I think this is been a good change of pace. I can feel I am useful to some people, again, and not totally reliant on everyone around me. I am taking it easily, though - walking slower, using my handicap sticker to park closer to the building, and taking naps every day once I get home. I do try to leave the house and my office after rush hours are passed, to avoid the stress from driving 30+ minutes on an open highway. 

This week I have also met with a vascular surgeon for the first time ever. I have always known I have carotid stenosis, of various degrees. But I have never had this evaluated by a vascular surgeon. Given the dire state my aorta was in once they opened my up for heart surgery, I wanted to make sure that a similar operation is not needed for my carotids, given the history of multiple strokes in my family. He did an ultrasound right then and there, and he also did a doppler for the circulation in my legs. He qualified my carotid stenosis as a 50% overall, which does not require intervention (surgery or stents) at this time. Those will be options we'll discuss if the percentage goes anywhere around 75. However, he was hopeful that now with Praluent, I will be able to stop the progression of the plaque and I won't need surgery/ stents for a very long time. For now, just keeping an eye on it (with repeat ultrasounds) every year will suffice. My leg blood flow is also good, he said. 

I take all the good news I can get right now. 

I'll have to say, moving about, although with big pauses, slowly and still relying on others for carrying weights, makes me feel almost normal again. I am excited to plan our summer with my husband and get out of house a little. Despite all the "crunchiness" still in my chest, my heart numbers all over the map, my INR still up and down, my numbness in half of my body almost, I am lucky and grateful I am here and somewhat mobile. Looking forward to slipping little by little into a new life, closer to what I had before. I am aware that exactly what I had before is no longer possible. That life is long lost in my rear-view mirror. But the road looks wide open ahead. I'll tread gently. 

Hope everyone is healthy and having a good spring so far. 

 

My dolly loaded with my work bag and lunch bag

Three Months from OHS and One Month of Praluent

All the things I have to watch now ... The good things:
 
I met with my cardiologist yesterday, for a 3 month post-op and for going over my latest blood tests and echo. I'll try to summarize the whole visit. There were some good things and some ... so-and-so things. And here they are:
- well, I am alive, right? That's the best one; :-)
- he thinks I am doing well, and gaining strength and looking good (but we all know we don't always look how we feel, right?!);
- the cholesterol (the only culprit for ALL my heart problems, as far as we know) is going down fast as a result of Praluent,  but it's not where he wanted to see it after a month of treatment; (more below)
- according to the surgeon, and the cardiologist agrees now, there is no scare about a repeat surgery: my valve is leaking, but that leakage is normal and not too heavy (he qualified it as "mild" and both the surgeon and the cardiologist agree that it should not get any worse, given the nature of my artificial valve;
- the left atrium is "borderline" enlarged, by some people, but not by most books/ guidelines. He is not worried about it at all.
- my systolic (first number) pressure is back to normal, or even slightly high - it's way better than 100, at 120-130. This is why I am no longer dizzy;
- I can start working this coming week, but at a limited schedule (4 hour days), not full time, for a month maybe two;
- (not sure if this is a good thing, but it is for me, so I am listing this here :-)): he gave me a handicap sticker for the car. I cannot carry any weight, still, so I bought a dolly for my huge purse, computer bag, lunch bag. I can park in designated spots at work and roll my dolly in the office a short distance, rather than having to trek across 2-3 parking lots (since I go in later all the close spots will be taken) with 15-20 lbs of stuff. 

The borderline good/ so-and-so thing - not sure where to list it:
- my INR tanked yet again. I swear, I try, but there is no getting this right yet. It dropped from 2.4 (which was in range) to 1.8. However, after 3 months from surgery, which is where I am now, the new range for the On-X valve is 1.5 to 2. So, I am luckily in (the new) range, although out of the one that was acceptable before yesterday. So, they didn't adjust the dose this time. Will check back in 10 days to see if it holds. 

The so-and-so things:
- he is not happy that the cholesterol is not at normal values; he said he always sees the numbers in the normal range after treatment with just 2 shots (this is one month of treatment), which is what I have done so far. Mine are significantly lower then before the Praluent (below), but he was hoping it'd be more around 170, instead of 230; so, he doubled up the dose from 75 mg/ every 2 weeks to 150 mg/ every 2 weeks; so far, I have tolerated the Praluent well - liver tests are within normal ranges, and I have no visible side effects. I hope nothing bad is hiding in the shadows of this, though. All I have is hope for this, as there is limited research so far.

 

These are the numbers in: March (before I started Praluent), through April, after one dose, and then after 2 doses, just this week (May). Notice the increase in the HDL and the drop in the ratio

 
- my diastolic (the second blood pressure number) pressure is still very low - it was 40 yesterday. He has no explanation for it, and he is worried about it. The only thing he can do at this point is watch it and I must take is SLOW. No running, no heavy lifting, no stress, just don't overwork the heart. I need to exercise, but slowly, without rushing the heart. He will meet with the surgeon again about this and try to figure out what other cause can it be. He said leaky valves bring the diastolic down, but not this much down. It could all be just part of the healing process after OHS and heart attack, and it will bounce back up, but we'll see in time. For now, he is mystified.
- my pulse is very high, even at rest, so he increased the beta blocker some more, only slightly, by 12.5 mg/ day. He can't do more than this because he is afraid it will also bring down the diastolic, which is already too low. 

So, all in all a good, informative visit, and I am so lucky and excited that I get to go back to work, even part time (4 hour days for at least a month, maybe two). I hope it will all go well and I'll feel good doing this. 

This week (my last week off), I tried to do a little more each day, and I took a couple of day trips around our area. I felt OK, but extremely tired when I got back. I also had a day of rest in between the trip days. My chest gets very sore and stiff in the car, so with a 30-45 minute commute (one way), we'll see ... 

For now, I am still, three months later, trying to find my new normal. Between checking blood pressure and pulse every day, watching the atenolol daily, and coumadin weekly, and feeling literally different every single day, I can say I am pretty busy. And life and now work has to fit in there somewhere. Easy does it, I guess. We'll keep plugging in and hoping for the best while learning this body of mine once more, once anew. 

Much health to everyone and a good Sunday and week!
 

Park City Main Street

I just wanted to stop by today and add a post where I celebrate a huge milestone, for me. I have moved to Utah 6 years and 2 days ago. Ever since, I have gone to Park City in every season. It did not matter whether it was too cold or too hot, or like today, just perfect, every time I'd walk the whole stretch of Main Street (which is all a huge hill), I was completely out of breath and feeling like my heart will be jumping out of my chest and beating itself to death on the ground!

Today, we took a slow stroll (which we normally did in the past, too), and initially I said "Oh, let's just do half the hill to see how I do". And we ended up parking in the middle of the hill, first going down to the bottom, then climbing all the way back up to the top of the hill and then climbing down another half of the hill, back to our car. I did not lose my breath once. My pulse was 107 at one point, sure, but I did not feel like my chest will explode for even one second of this whole short journey. 

When I first moved here, going to Park City alone would give me an instant migraine and my chest was heavy just because of the altitude (7000 ft), but today was another story. No migraine. Just beautiful spring weather and a nice, refreshing walk. Sure, I was pooped by the time I made it home, but I really do feel like this surgery changed something. I just hope it changed it all for the very much better and I hope, for a while to come. 

 

This is me at the top of that Main Street hill today. See?! No panting!

What the Last Three Months Have Taught Me

I cannot believe this week it'll be three months since my heart surgery. Where has time gone?! Apparently it flies by, even when you're NOT quite having so much fun.

I am starting work next week. Ready or not, I have to, lest I should lose my job. So … off I go. 

 

I have one more blood check this week (mostly for cholesterol and the effects of Praluent) and then one appointment with my cardiologist after that, to assess how many hours of work a day I am allowed to perform when I go back. He called me last week and he said he wants me to go in for at least one month of part time work before I start my regular schedule. Luckily, I can do that, and I have a reasonable team that will support me in this.

As far as I how I feel, I would say “fair” if I compare myself to the “before surgery me”. I do some things (light chores, laundry, with help, cooking, with help, light gardening, with lots of help, driving but not long distances, dusting, feeding my cat, small dishes, not heavy ones), but I am also limited in my abilities and also in my stamina. I still last for about 3-4 hours of slow to medium activity max, and if this time includes a drive, I last for a shorter time for “actual” active time. I still sleep in a funky position, propped up by 6 pillows and a thick folded duvet, to ensure my upper body is reclined. Still sleeping fully on my back, which is not my normal, but I sleep with less interruptions (1-2 compared to 3-5) during the night. So, comparing myself to 3 months ago, right after surgery, this is HUGE progress and I would say I feel great.

As far as the limitations in my body: I still can only lift about 3-4 lbs with no discomfort (my work purse is about 15 lbs, since it has my computer in it too). My right arm and right side of my chest are still numb (I cannot cut my nails, for instance, by myself, on my right hand). I still cannot open jars, or use my left arm to steer much, or to open heavy doors. I still type slower than normal and the left hand keys need help from the right hand to get them right, or capitalized. My chest still feels like a huge bottle of superglue has been spilled on it and it's holding my skin back from stretching properly. My left leg (from the knee down) is also still numb. 

The unbelievably great news is that no re-surgery is required or needed, or advised at all at this time. My surgeon reviewed the last echo with my cardiologist and said that my aortic valve will forever be leaking (given that I was given an aortic composite graft as opposed to just a valve), and the leaking is normal. However, it's sitting at "mild regurgitation" and it should stay there for the rest of my life. This is normal. When I heard the news that they won't call me back in to replace the valve, my legs cut from under me - I was so filled with joy and gratitude! What a huge favor!  

I am still playing with the Coumadin dose, especially since this week my INR range will go down from 2-3 to 1.5 to 2. So, I have to go in this week for a dose readjustment again, and play with the new range for another month or so, after weekly appointments. I am also still playing with my Atenolol dose, as my BP and pulse are still all over the map. After cutting off the Atenolol completely, I had to be back on it, at a smaller dose (25/ day rather than 100/day). This improved my diastolic pressure a bit (from 30-40 to mid to upper 50's), but my systolic is higher than before (upper 130's and 140's) and the pulse is also higher (70's and lower 80's, at rest, compared to 60's from before). We're still trying to figure out what dose works, or maybe change the beta-blocker.In the meantime, I will have to take things slow, no running, nothing to cause my heart to work extra, for the foreseeable future. I think I can do this. 

The other day, I tripped on my patio and fell on my left shin. It hurt like crazy and I felt this huge rush of blood in my shin. I got a bruise, instantly, and for a minute there I thought “holy hell, I am going to have internal bleeding in my shin and I'll lose my leg!”, or something. Coumadin paranoia kicked in, of course. I do still have a bruise, 2 days later, but nothing that I have not seen before on my body.

I have also had a throbbing tooth and I thought “oh, no, tooth infection! It'll go into my heart!”. I went to my dentist and then to an endodontist, to make sure there is no infection in the tooth, and there isn't. They don't know why sometimes my tooth throbs, but if it's not hurting and it doesn't look like it's cracked, or leaking, they will leave me be for now. They both said there is positively no infection, at this time. But it did scare me there for a bit.

All these (and then some) will be constant concerns going forward, so somehow I will need to incorporate these in my regular “go to work” routine from here out.

All in all, though, I am so incredibly grateful I am mobile and I can do the things I do today and that for the most part, all my other organs function well. This is NO small thing to be lucky to enjoy, as most heart patients will tell you!

I thank God, my team of doctors, this wonderful community of people on this site, and last but definitely not least my family, especially my husband for helping me get here. I took one day at a time and as you know, each day will bring new things you never thought about with it.

All I can say is that what helped for me is the fact that I stayed flexible. I keep telling myself this is what it is (if every day is a square, I don't wish for it to be round), and I deal with every day's new reality as it's given to me. I have no preconceived notions about anything anymore. I make no more plans, really. I know now that anything can happen and nothing, not even our own breath, or especially our breath, belongs to us to control. Whereas before I was more like a rock, strong, stubborn and unbreakable, I am now more like a willow – just very humbled and definitely bending, so I won't break.

I have no idea what tomorrow will bring, or a month, or a year from now, and this is not the purpose of this life, for me, anymore. I finally understand the meaning of “the journey is more important than the destination”, because I have no destination, all of a sudden. Every second is new and I cherish it with the most thirst and curiosity I can muster. In the end, looking back, the trail I leave will be what it will be. But I no longer can say I can see the end or care much about it. All I care about is right now and how I can bridge the breath I am taking now to the next one. This is as far as my eyes can see anymore.

I wish all of you out there, on either side of this, or in the middle, will find the strength and power to go on. I know it is in each one of us. Trust your teams, and love your support groups, and together you will build a wonderful life. Despite the fact that this is a disease of the heart, it is definitely not for the weak hearted, and we're all here to prove this.

Much health and strength on all your journeys.

Thinking especially of all of you who are in surgery this week, and who are struggling every day to find your new normal.

In Search of a New PCP and New Numbers after One Shot of Praluent

I still remember the day back when I was in college when one of my medical school friends exclaimed “That is SUCH a cool disease!!” when I told him I had FH. He was studying to be a general practitioner, and he just thought this disease was so complex, that allowed him to know the human body like no other disease. He saw me as an opportunity to learn medicine and see the dependencies in the body as a whole, not just in a slice of reality.

Unfortunately, there are less and less people in the medical world that I come across with that find this disease “interesting” if they even bother to learn anything about it at all.

It's been years (at least 12 if not more) that I have found a general practitioner (PCP, family doctor, internist – call it what you will) that truly understands FH and tries to keep me healthy in its context. As of late, they take a step back and say “oh, you gotta see a cardiologist” and that is that. They don't even read my list of medications and they seldom ask about other problems. They treat me, at that point, as “whatever is wrong with me must be FH and they're not qualified to fix it”, or so it feels.

I say this because after about 3 years with the same PCP that never did one physical on me, or did any blood tests other than lipids and liver panels at my request, I have decided to switch my main doctor again. I asked around in the clinic that I go to for my heart and other specialists and they sent me to this other practice in town – huge inconvenience, because I wanted all my doctors to be in one clinic, and I chose the biggest one in town, but I failed to find a good internist or family doc there. So, I took the plunge and went to the recommended practice.

To the new doctor's defense, he did order a huge amount of blood tests, even before he saw me, for my physical. During my visit, he gave me a hard copy of the results and of course all my cholesterol numbers are high, so he had written a note next to them: “Tried diet? Exercise? If yes, what RX?”. Now, if he had bothered to read through the 10 page form I filled out, he would have seen my health history (it contains FH, as you'd expect), my family history (you guessed it again!), the complete list of medications I am on and the amounts for each, so he would have known right off the bat (I hope!!) that he's dealing with an FH patient. But that's about all they are trained to see for a high cholesterol patient: diet and exercise - which is fair, but for the love of life, read the whole profile on the patient before you walk in. With as many doctor's appointments as I have, I rarely understand the purpose of us filling out so many forms, and spending hours with the nurse going over our history. The doctor never uses those notes for anything at all.

He asked the same questions of me, as he scribbled on the blood results paper, and when I told him I have FH, he cut me off with “well, I am going to leave you be in the care of your cardiologist then”.

I had questions about other conditions, for him, like my low vitamin D, whether I should take CoQ10 or not, whether I should take any other supplements for my heart to stay healthy, also about my continuous hives – but I felt, just like I felt before, many a times with many a general practitioners, that since I uttered the words “FH”, he was going to screen save me and listen to nothing else. When you tell them about this disease, it's like the kiss of death to them – they stop having any other professional opinion about anything else. He had no opinion on the vitamin D nor anything else I asked. I had other concerns, but I decided to drop it.

Like I said: I did have, in the past, generalist practitioners that questioned my medications, they added more, they changed doses, and they were also checking for other potential risks of my medicine, they recommended tests, to see how much damage has been done from my cholesterol, etc. But I have not had this experience as of late. What's more, they never want to treat anything else, because … who knows, maybe everything else that is wrong with me is because of the FH and they let the cardiologist figure that out?! I have no answers here. Just a bitter taste.

So, it makes me wonder: what changed in the medical world for the general practitioner to be so terrified (or dare I say, unprepared) of treating a patient as a “full spectrum” of health concerns? I know they teach the whole body and its various afflictions in medical school, and I know some general doctors paid attention and have the ability to treat everything under the umbrella of an existent disease. But why are these people so rare nowadays?!

My cardiologists have always been top notch about FH and about the effects it has on my body as a whole, and my heart in particular. The fact that I got great heart doctors happened simply by luck, I had no personal referrals to them. I have always been pleased with the care I received from them. But they don't know everything, as their specialty is the heart. The generalist doctor, in my mind, is the “everything” doctor. But those have been a disappointment in my recent past.

I told my husband I'll give this new doctor a chance for at least another year, but I feel like that is even generous given the first visit. His goal at the end of my physical was to “recover from heart surgery and report back in 3 months”. Hmm... yes, that is the goal for my cardiologist, too, and for my surgeon, but … I exhaust my arguments.

I (and we) have no choice but to be tied to medical professionals to maintain my (our) health. But if I have one wish, one request from the medical “gods” out there, is more education. More education, and info sharing between all the specialties out there, about all the diseases (at least basic knowledge). I wish when they all get together for their yearly conferences, there was one forum where they would all share and get a deep understanding of drugs, lifestyle, family history as a composite spectrum of facts for each patient, and I wish this would render them to not be afraid to come to the healing chair with us, the patients, and share what they have learned. It would help us so.

On another note … like I mentioned, he did do a very extensive list of blood tests. When he did these tests, I was after a week from my first shot of Praluent. I have read in many articles and even my cardiologist said that you can usually (he said it with caution) tell that the Praluent is working even after the first shot, “in most patients”. Well, here are the numbers from April (after Praluent – last column), and the before last column will show you the numbers from March (before Praluent). Evidently, it was not working for me, yet. 

I have since taken a second shot of the drug, and I am getting my values checked again in a week, prior to my appointment with the cardiologist, who of course was the one who put me on this therapy. I will report back with that finding, then. For now, insert your own disappointing tune here …

Hope everyone is finding true compassionate care and knowledgeable help out there. It makes all the difference in the world!