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!

A New Member of my Health-care Team – a Vascular Specialist

You will learn fast that when it comes to FH you very often don't take just one medication. You take several. You don't follow up with just one test. You follow up with multiple tests (blood tests, imaging, etc). Very often, you don't see one specialist, but you see several, as a routine. This is a story about all that. 

Following up on my January appointment with my cardiologist (http://livingwithfh.blogspot.com/2020/01/the-en-garde-life-of-fh-patient.html), I got an MRI of my abdominal aorta in February. The list of findings was long, but the most important ones are the following:

1. There is a significant stenosis at the origin of the celiac trunk (>75%).
2. There is moderate proximal stenosis in the superior mesenteric (~50-75%)
3. The right renal artery has an acute take off. There is moderate stenosis (eccentric in shape) at the ostium of the right renal artery (~50%).

These are the most important concerning areas that this latest MRI revealed.

I will also have to add that for the first time in … I am not sure how long of a time, the MRI tech chased me down the hallway after the test was over and after the nurse took out my IV to ask me about my history. He, of course, did not say anything about the findings, as they never do, but he had a cheat-sheet with hand-written notes in his hand and he wanted to understand my history, my background, and why I had such an involved surgery four years ago (https://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html). I wondered when he did that what he found or whether what he found was unexpectedly worse than what he was hoping for… Maybe this is why no techs ever talk with you when you have these tests – because if they do, you start wondering and worrying. I wondered, but not worried. With my history, you take pretty much each day as it comes and try not to expect too much.

A couple of days later, I got an email from my cardiologist saying something to the effect that “it all looks good. Abdominal aorta unchanged from the ultrasound we did in December.” I pulled my December results and the findings then were quite different than what this MRI showed. Then, they noted the following:

Mild to moderate calcified plaque was identified in the proximal to distal segment of aorta. Elevated velocities were recorded in proximal to distal segment of aorta,
suggesting a greater than 50% stenosis by velocity criteria. The
bilateral common iliac arteries were visualized (…)  with mild to
moderate calcified plaque identified. Elevated velocities with biphasic
waveforms were recorded in proximal segment of common iliac arteries
bilaterally, suggesting a greater than 50% stenosis by velocity criteria.
(…) Elevated velocities were recorded in the proximal segment of celiac axis artery and superior mesenteric artery, suggesting a greater than 50% stenosis by velocity criteria. Decreased diameters in caliber were identified throughout.

As you can see, the findings were quite different. So, I questioned him. He insisted that the findings are “the same, but the tests are different, so we can’t compare apples-to-apples: one was an ultrasound, one was an MRI, so the measurements are different but the diagnoses is the same: I have disease, but there is nothing they want to do now because it’s not near 90%, so I need to just wait it out.” (pretty much an actual quote from the cardiologist).

I did not feel comfortable about his answer. I do like the work he is doing for my heart, but I felt like he was taking my aorta findings quite lightly. I pulled out my operative report and started to highlight all the references the surgeon had made to my “porcelainized aorta” and the “severe stenoses” he had found in multiple arteries. The aortic valve was so calcified only one leaflet (out of three) was functional. And I wanted to sit down with a vascular specialist to understand exactly what kind of a risk my arteries are facing. From my annual heart echo, I have a pretty good understanding of my heart, I think, but I feel like I need a “watch” plan for my arteries just the same, in addition to my heart.

When I had my surgeries, the three surgeons that were in the OR all told me the state of my arteries was one of the worst they had ever seen and my own surgeon repeatedly told me that I need to monitor them closely, not only in my heart but everywhere else in my body.

So, I pushed for more answers. I asked the cardiologist for a referral to a vascular specialist and apologized if he thought I didn’t trust him – I do, but I need someone more specialized in arteries the way he is in the heart. He didn’t take it the wrong way (I hope) and he made an appointment himself with one of the interventional cardiologists and vascular specialists in the same clinic. I met with this new doctor last week and it was quite a different conversation than I had with the cardiologist.

He does manage hearts, but his specialty is all “the other” arteries, outside of the coronary ones. He agrees that I should be equally concerned about my arteries as I am with my heart. He explained that the difference between the ultrasound and the MRI is that the tests are indeed different and the level of detail is higher on the MRI.

He would like to monitor me, and get on a yearly monitoring plan, probably a CT – Angiogram scan every year to all the arteries between my jaw and my knees. Although he agreed that the most accurate test would be an MRI (and with the least amount of radiation), he would need to order three MRIs to capture the length of the arteries he wants monitored, whereas with a CT-A, he can order one test. The MRI, although the most accurate, would triple the cost. 

The main area of concern is my abdominal aorta and especially my celiac trunk, but also the mesenteric and renal arteries, as well as the subclavian arteries which come up as stenotic in the carotid ultrasounds.

Now, I add one more test to my yearly plan: in addition to a heart echo, we will add a CT-Angiogram scan which will probably also replace the yearly carotid ultrasound that I normally do.

The vascular specialist will work together with the cardiologist to follow the development of my disease closely, both for my heart and for my other areas of my arteries. 

I’ll have to say, I feel better about having a plan. The cardiologist was maybe going to repeat the tests, but the thing with him is: he keeps doing a different test every time – an ultrasound, an MRI, a CT scan. I felt like we need some consistency, to build a baseline, and to see a clear progression from where we started, over time. This is what I did for the heart and this is how I knew when things were bad enough in the heart that I needed to have surgery. The vascular specialist agrees. He also “promised” me that I will probably have more surgeries in my lifetime to correct some of these areas as the disease in them looks pretty advanced for a person my age. So, watching this closely is that much more important, so we know when we need to act, hopefully before some major event should happen.

I guess, the moral of this story is like always: if you have doubts, if you need more answers, ask, explore, push and get them. There is no shame and no guilt in wanting to be in the know about your own body. It is your life, after all!

Happy health, you all! And I wish you all answered questions, and answered prayers!