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.

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.