Sunday, February 11, 2024

Eight Years Later

I read a meme on the internet the other day. It said "You're only as old as your heart is." So, I must be 8.


It’s that time of the year again - February 11th ... 8 years ago today, I was dead. They made me dead. Only to bring me back to life, if I (and if they) was (were) lucky ... And lucky I was and lucky I am today, too.


Eight years ago today, I had my open-heart surgery. My big, scary, always-had-known-I-would-need-it-one-day surgery ... Every year, on this date, I skim through my operative report and I feel humbled, small, and oh, so beyond-words grateful for everything that came together to save my life and give me a new lease (renewed now for the 8th year) on life ...

I went into the surgery with 3 diagnoses. After the good man, Dr. John Mitchell from the Provo Utah Valley Hospital and his team, were done with me (after 12 and a half hours or so), they put down on paper 5 diagnoses ...




Some scary stuff! Each one of the 5 diagnoses is enough to independently kill someone. I, ever the overachiever, needed to have not one but 5 risks for cardiac death ...


But God and fate were not done with me. I do remember when going in that I told my family: I am not scared that this will kill me. I feel like there is so much more life after this for me. I feel like it’ll be hard, but I will make it ... That premonition or guess has come true ...


There has been so much life after that day ... There have been trips, and new jobs, and meeting new people, and spending time with our families and friends. There has been learning and trying new things, shooting (maybe) millions more pictures, and squeezing more kitties ... There has been building of memories, watching nephews grow and become almost young people now.


There have been some of the biggest heartaches of my life too. It’s like they prepared me for what was to come by fixing my heart to be able to take more sadness: loss of jobs, loss of friends, moved across the country, our kitty died alone when we were traveling, a parent got cancer, we buried another parent ... But my heart keeps going ...


Just like the good doctor said in one of the days after the surgery while I was still in the hospital: it was “up and at them after I left the hospital”. I guess I never quite felt like “up and at ‘em” to me, exactly (I felt as slow as a snail and as weak as a feather), but compared to that day, when I was practically dead, with the heart-lung machine breathing and beating for me, it must have felt like “up and at ‘em” even if all I did was little as getting out of bed in the morning ...


But I have been lucky to do much more than that ...


After learning my new routine in the first couple of years, I have been able to have a new life, a different life than before, but still a good one.


The operation (or, as you can see from the operative report excerpt above the “operations”) did change my entire life’s routine: the anticoagulant forces me to manage my food even more closely than I normally do, it also has me OCD paranoid about measuring my INR (blood “thickness” levels) weekly and I never leave the house for more than a week without my INR machine; I get tired easier than before, still; I have learned how to live with permanent neuropathy in my left arm which still feels like my hand is permanently stuck in a bucket of ice; my chest still feels different than ever before, including my spine and ribs - it cramps and it hurts at certain times; my medical wires left in my chest forever after the surgery still poke into my chest wall at times (and I have not figured out why and when they act out); my blood pressure has been on a new and more noisy roller coaster than ever before, my heart muscle is stiffer and it needs extra meds to relax ... and I could go on and on ... Living through increased inflammation and through several years of Covid that threatened to kill people like me, with a cardiac condition and with high cholesterol, has meant yet a new way of life. A new lesson in living this new, changed life ...


Yes, things have changed. But what I now know for sure is that we are adaptable. We learn to grow around the boulders put in our path, and still are able to shoot towards the skies, kicking and screaming ...


I have a much better understanding of limitations and of giving up things to feel “normal” ... But I also cherish every second of every accomplishment of just going through the day and the night and waking up to a new morning day after day ... There is no price I can place on this blessing and this gift called life ...



First day after the surgery, in the ICU. And 8 years later ...

Thursday, January 25, 2024

Even After 41 Years ...

Happy new year, everyone! I truly hope for a better and healthier year, for all of us! 


It’s a rainy and unseasonably warm evening here in North Carolina tonight. It’s around 65 at 8PM which is unreal for a January day ... But there you have it ... The fog is rolling in, making it feel very British ... 


Last year ended on a not so good note for me, healthwise ... My liver values (AST and ALT) started going up and my cardiologist and I have no idea why. We have not changed anything in my drug regimen, nor in my diet. Outside of a (much) higher level of stress, we cannot figure out what could be making my liver enzymes go up, and - at the same time - my cholesterol levels as well. Maybe a sign that whatever drugs need to be processed in the liver are not being processed well anymore. Or who knows?! 


Since September of last year, when my LDL levels jumped from 125 to 144 mg/dl and my AST/ ALT levels jumped from 47/44 to 125/95 U/L(normal values are up to 41/49 U/L), we have been trying to switch drugs around to see which one of them if any, are causing the jump in the liver enzymes first ... 


We know that taking the statin drug (Lipitor) away from the regimen makes the enzymes come to completely normal levels. Leaving the statin in but taking the Bempedoic Acid (the other drug in my cocktail that is known to modify liver enzymes) away makes the enzymes close to the normal levels but not fully normal - still a little elevated. 


We never tested for the cholesterol levels during this time of starting and stopping the drugs, because we figured it would be high since we were reducing the amount of drugs in the mix. In December, the doctor replaced the statin (Lipitor) with a less strong one (Pravastatin) for a month, then he did a cholesterol check in January. The liver enzymes were totally normal, but the cholesterol ... oh, wow! 


At that time, while taking Pravastatin (40mg), Ezetimibe and Praluent, my cholesterol values were 423 mg/dl (total cholesterol) and 358 mg/dl (LDL cholesterol). Both the doctor and myself were shocked. Shocked and defeated that the Ezetimibe and the Praluent were not making more of a difference. Last time my LDL cholesterol was anywhere near this level (it was 344 mg/dl) was in 2014. 10 years ago! 


My big LDL jump to 358 mg/dl - January 2024


It’s been over 20 years since I have measured my cholesterol with no drugs at all. In 1999, my total cholesterol was 526 and my LDL cholesterol was 475 mg/dl with no drugs. That is, if you will, my
baseline ... As you can see above, being on three drugs is not moving me  much more away from those numbers. None of the promised “up to 50% reduction” in LDL cholesterol with Praluent is happening in my case ... 


As many of you know, an LDL cholesterol of 300+ and a total cholesterol of 400+ spells more than “trouble” for anyone (not just for an FH patient), especially one with a massive history of cardiovascular disease, open-heart surgery, multiple bypasses, aortic valve replacement and a heart attack ... 


I have always felt like a timed bomb but seeing these numbers again in my chart is scary. Also, given the fact that I am no longer 24 like I was in 1999, but almost 49 now ... this doubles the worries. 


For now, the cardiologist put me back on Lipitor (40mg instead of the 80 mg I was on when the liver values were going up) and I continue to take Ezetimibe and Praluent. We need to test for both the liver and the cholesterol in February and make a decision what to do then. 


He says “he has other options”: he can add the Bempedoic Acid back in for another drug, if the liver can take it - we’ve been testing for liver enzymes every month since September. The lab people and I are on a first-name basis now. We all know what each other has done for Thanksgiving and Christmas. I know that Bill, the nurse, has a step-mother-in-law with dementia and Michelle, the front-desk receptionist has a pitbull lady dog and that her birthday is in April, like mine ... 


The cardiologist is also wanting to start a new drug, Evkeeza - an infusion that works differently than any other drug I am on, but not before we stabilize the liver ... I have asked to try for this drug for years now, and if you have read here before, you know the stories ... 


I have always felt like a Guinea pig since I was 8 and they discovered my FH. And things sometimes never change, no matter how far science goes ... So here’s back in the spinny wheel for a while to try to get my numbers down again and keep my liver (and the rest of me) healthy, otherwise ... And as always: there are options. I can’t help but feel almost back at square one, though which is a bit of a let-down after 20+ years of doing so much better than this ... 


More to come, I am sure, in future posts. 


Much health to all of you! 

Saturday, December 30, 2023

The Wins and Up-hill Journeys of 2023

Boy, it’s been an interesting year, to say the least. But then again: aren't they all?!

At the end of 2022, I lost my dad to several massive strokes (I spoke about this in my first blog this year - https://livingwithfh.blogspot.com/2023/01/new-year-new-thoughts.html) . Always the overachiever, he could not get just one stroke when his time came. Instead, he stroked in every area of his brain - small brain, large brain, and the brainstem, for safe measure ... All because of atherosclerosis due to untreated FH. 


This past year’s been largely spent in the shadow of this very, very dark and sad event that I started the year with. Dad was my beacon, the guiding force in my life ever since I can remember. Without him, I have felt like someone just turned the lights off all around me and I have been feeling around, trying to figure out how to live in complete darkness. 


It’s been a year of emotional un-health for all of us left behind, but mostly for my mom, for me and my sister. Our center, our patriarch is gone and the balance is off for all of us. The common belief in my family is that I am the strongest one. So, I have tried hard to be here for my sister and my mom. But even the stronger ones need strength - and I have surely felt this this year and have struggled to find it ... Trying to stay mentally afloat has been hard. Working and focusing on my physical health have been good distractors. 


My physical health has not been the best, but I’ll have to say it has not been the worst in my life, either. I am grateful for this. At the end of the day, truly, I am just simply grateful for another day. A friend of mine living with lupus has said to me something like this year “doesn’t every day feel like a victory?” - and she is so right. 


I am happy that I made it into the last days of 2023 - here I am adding another year to my life bouquet. Remember, I was told I was not going to make it past 18, or 25 at the most. Here I am stepping into my 49th year next year - God willing! This is definitely the best accomplishment of this year and of my life, really. The fact that I have stayed away from the ER and the ICU this year are the cherries on top! 


As I am looking back and drawing the line to close out this past year (something my dad always did), I think of all the good things, but also of the let-downs and disappointments about my health this year. Worth mentioning:


  • We still have not figured out if my GI issues are caused by abdominal stenosis or not. We are still investigating this with both specialists (vascular surgeons as well as a GI doctor). More tests to come. I can only hope that it is not my stenosis because a whole year is a long lease if my gut is not getting proper blood-flow. 
  • We have not figured out my dizzy spells. After years of my cardiologist refusing to do a scan of my brain blood vessels, I have finally gotten a vascular PA (that is right, not a surgeon, but a vascular PA working for a vascular surgeon) to admit that a head CT is past due for my advanced atherosclerosis, family history of strokes, and for my symptoms of dizziness that no other tests could elucidate. So, the test is coming up but it has not been done yet. I hope we find out something ...
  • We have made almost no progress in improving my shortness of breath, despite achieving some good heart numbers this year ... (more about this below). I still get very winded when I do very light chores around the house. Climbing a hill or walking is much worse. 
  • My cholesterol values started climbing, despite continuing the same combination of drugs that has been beneficial in the recent past. No idea why the numbers are up, but I wonder if stress has something to do with it ... The LDL cholesterol is 144 mg/dl (up from 101 mg/dl last December) and my total cholesterol is 210 mg/dl (up from 164 mg/dl last December). 
  • Despite this trend, I am still waiting for my clinic to approve my Evkeeza treatment. Apparently, the insurance approved it but the bureaucracy of the clinic itself of trying to figure out how to manage a new drug as an infusion is crazy complicated. So, we are still waiting. We're also waiting for my liver to get better.
  • To that point: my liver enzymes are also climbing. They have gotten as far as more than three times the upper limit (the AST and ALT values). They tell me they need to be much, much higher than these numbers for liver failure, but they are still concerned and trying to figure out what’s happening.

    We have been trying for months to stabilize them and they remain high as long as I am on a statin drug. I am planning to come back with a more detailed post about this, but I am currently “playing with drugs”, as I call it - trying to turn meds on and off and see what will keep the liver levels down and get the most benefit for lowering the cholesterol too. So, until I have the full picture and until we pin down what’s causing this and what drugs I will be on going forward, I will keep the confusion to myself for now.

    Right now, they have stopped the one statin that works best for me (Atorvastatin) and they are asking me to take a lower strength of a less potent statin (Pravastatin) to see what the liver is doing next. When I take no statin at all, the enzymes are normal.

    We have not checked the cholesterol levels during this trial-and-error period, but logic and experience tells me the levels are high, even higher than the ones listed above. The levels I wrote above were trending higher when I was on the full-strength of all four medications I normally took for cholesterol (Lipitor, Zetia, Praluent, and Nexletol).  Of course, the longer I go with higher cholesterol levels the worse it is for my vascular and heart health. But I’d rather not add liver damage to my laundry list of problems, so I am willing to try this new experiment to revamp the drug cocktail I am on.

    I wondered if stress has something to do with the liver functions too, till I saw the liver enzymes come to the middle of the normal range only by stopping the Atorvastatin for 10 days! 

Despite all these setbacks I have had some brighter spots this year too: 


  • I finally made some progress on Evkeeza with my cardiologist. The jury is, of course, still out on this newer than new drug, but I am hopeful it will do something (good) to my numbers!
  • Earlier this year I barely got the doctor to pursue setting me up with this (https://livingwithfh.blogspot.com/2023/08/access-to-newer-treatment-might-not-be.html), and now I am waiting for my liver numbers to stabilize before we introduce the new drug, but the clinic is finally ready to start. 
  • I have managed for another year to keep my carotid stenosis at a lower than 50% amount of plaque build-up. After having had it as high as 65% in the past, having the readings come in as 50% or lower than 50% in some areas is an accomplishment. (The theory here is that Praluent has helped with stabilizing and stopping the progress of the plaque - just a theory from doctors). 
  • I had a xanthoma successfully removed from under my eye (https://livingwithfh.blogspot.com/2023/12/xanthoma-removal-surgery.html) . This is the fourth fat deposit (most likely caused by high cholesterol) that I have had to remove in 48 years. 
  • I have finally (after two years of trying different treatments) pinned down the right drug and the right dosage for my blood pressure and I have improved my BNP number (which shows the severity of your heart failure).

    What is even better than seeing lower numbers of the BNP (still not normal but lower), is that I feel better, especially when I walk. In normal weather, my angina and the cramps in my extremities are much less than they were before I started Amlodipine. My BNP has come down from 692 pg/mL (end of last year) to 323 pg/mL this past September (the normal values should be under 190 pg/mL). In weather that is too hot (above 80 F or too cold (low 40’s or lower), the angina and cramps are still pretty bad ... And the shortness of breath has not improved. The blood pressure numbers are more often “normal” with only weekly spikes (as opposed to daily). I take the little bit of good news where I can. 

All is not perfect. But all is not bad ... One foot in front of the other and I hope I can live another year to tell that year’s tale going forward. 


From all the good that’s in my life, I am most grateful that despite all the (un)health bumps,  I enjoy a full life, with good people, good food, and lots of travel and freedom to move about. Yes, being tied to a pill box, a blood pressure taker, a bi-weekly injection pen, an INR meter is not a completely care-free life, but I am never taking the freedom to move my body and drive and jump on a plane for granted. They are precious gifts! 


Going to New Orleans for Thanksgiving was one of the highlights of this year - here is me, in the French Quarter on Thanksgiving night: 





Other adventures included visiting three very different national parks for the first time (Saguaro National Park in Arizona, Indiana Dunes in Indiana and Jean Lafitte in Louisiana), two Frank Lloyd Wright homes (Taliesin West in Arizona and the Westcott House in Ohio), going to Europe and celebrating mom’s 70th birthday, spending a week with my nephews in the summer and taking them to their first baseball game and their first musical (Wicked), among other fun things. So looking forward to more adventures!  


I wish each and every one of you reading here much health and strength. They are so important to keep us going. Whatever makes you happy or makes you whole - hold on to that and you’ll stay afloat! 


Happy New Year! 

Thursday, December 28, 2023

Xanthoma Removal Surgery

A little behind on this post: at the end of October, I had a xanthoma (or it could have been a lipoma, or a fat deposit - the jury is still out on what exactly they wanted to call it) removed from under my left eye. This was the fourth fat deposit that I have had removed or treated in my 48 years. They are pesky things that show up on various parts of your body if you live with high cholesterol. They show up small, in the beginning, and if left alone they grow sometimes to a painful or an esthetically displeasing size. 


I had one removed from the tendon in my right elbow when I was in my early 20’s, a xanthoma removed from my eye lid in my mid-20’s, a large (bigger than a golf-ball) fat deposit removed from my neck a couple of years ago, and now this last deposit from under my left eye. The surgeon called it “a mobile orbital mass, firmer but consistent with orbital fat” in his post-op notes. Regardless of what you call it, the surgery to remove it might be similar to what happened here.


I am usually nervous about any procedure that puts me under general anesthesia because I just never know how my heart will behave during the drug-induced “nap”. This time, it didn’t help that the anesthesiologist did not agree with the surgeon on what type of anesthesia I should be under: the anesthesiologist wanted a light anesthesia, where I am coherent and talking back but not remember much and the surgeon wanted me “completely out”. The surgeon won, eventually, and I agreed with him (general anesthesia is usually my least favorite kind), considering how he went in to get this fat deposit: he had to make an incision behind my cheek’s skin, in my internal lower lid. He recommended general anesthesia so I would not move during the procedure and cause any other complications. And I agreed, although I am sure I didn’t have much choice if I wanted the surgery. 


I had a black eye for a couple of weeks and I still feel some firmness in that area, possibly from the scar tissue, but the visible bump is gone from my face, so I consider this a success. The deposit he pulled out was small compared to the ones I have had removed in the past - the one I had removed from my eye lid of the same eye when I was younger was probably the smallest. This year’s “fat mass” was actually made up of two pieces measuring 0.8 x 0.7 x 0.4 cm and 1 x 0.5 x 0.4 cm, so anywhere between half and one full centimeter each. 


I originally went to a dermatologist for this growth but he would not touch it because it was too close to my eye, so he sent me to an ophthalmologist. I tried to make an appointment directly with an oculoplastic surgeon, but the clinic would not have it. They said I need to see a regular ophthalmologist first and let them decide if I need a surgeon. I told them it’s useless and pleaded to please let me skip a useless step and make the appointment (in the same clinic) with the right specialist, but they would not budge! 


So, I went to a regular ophthalmologist who decided my vision was just fine and who ended up referring me to their coworker who is an oculoplastics surgeon who finally performed the procedure. I tell you, the mystery and the maze of the medical world never ceases to surprise and bewilder me ... 


Here are the before and after pictures and if you can’t really tell where the bump was (under my left eye in the picture to the left) you’re not alone. It was not very visible but it was palpable and I knew it would only grow bigger, having had the experience of at least two other ones that got enormous and prevented function in either my elbow or my neck. To prevent scarring too badly when it ended up being much larger, I decided to take care of it now. The surgeon agreed.



In the first picture, you can see it under my eye, closer to my nose. Click the picture for a larger view.

Just another procedure that us, FH folks, might have to tackle. 


Much health, all!


Sunday, December 10, 2023

The Loss of the Blood Sample

This will be a short post just for a bit of comic relief, I hope. 

Well, it finally happened to me too! 

I have been at this for a really long time. 40 years to be exact, this year! I should have had a party or something but I didn't. 

I have felt like a pin cushion with many doctors repeating the blood tests because they could not believe my numbers were real. I have felt like a Guinea pig trying to figure out what drugs and what diets might work for me, often with little or no results, often disappointed, especially in the beginning. Often feeling empty, because if all the science in the world fails you, what hope is there?!  

But I always manage to fight back with what I can. I always think that knowledge is power and even if I don't have all the answers, and even if there are no drugs to cure me and magically prolong my life, I at least know what I have to do: I need to know my body and my symptoms better than anyone, I need to always advocate and insist on getting tested every year to learn and know the progress of my atherosclerosis, before this disease throws me into some sort of "event" from which I may not come back ... There are ways to stay on top of this, even with bad numbers and no treatment at play ... 

I have fought with insurance companies, and bureaucrats who think they know better than medical professionals what is best for me, even when they had no medical code for my disease. 

Of course, every failure of a drug working or every encounter with a doctor who does not know their stuff and refuses to learn me as the patient with a unique history that I am, every battle lost and appealed with the insurance company is frustrating and sometimes even maddening. 

I have been embarrassed in the hospital when recovering from open-heart surgery when I could not so much as walk to the bathroom by myself and I did everything in bed ... Oh, I have many stories ... I know this disease is not for the faint of heart - and no pun is intended. 

But till this week, I have not had this happen to me ever before. I have heard of people going through this, but never me. 

They lost my blood sample! 

As every FH patient knows, the only way we know what our numbers are and what our livers are doing if we choose to be on some of the treatments that cause liver damage is with a "simple blood test" - the literature will tell you. Well, except it turns out that these blood tests are not ... so simple, after all. 

I am going through a bit of another Guinea-pig moment (for the umpteenth time in my life!)  where both my cardiologist and my PCP are playing with my drugs and every two weeks I have to go in for blood tests to see how they influence my liver numbers (which are high lately, but we're not sure why yet). So, every two weeks, I go and have a blood sample drawn to see where my liver numbers are after they have switched (added or removed) another drug in my cocktail. 

This has been my routine for the past two months (I have one more blood test later this month and then we make a decision in January about what drugs I will be on). So, this week, I went to my bi-weekly blood draw and the "regular" blood test results failed to post in MyChart the following day (which they have always done for the past 6 years since I have been seeing these doctors). 

I knew something was wrong from the minute I left the office when they drew the sample, because the phlebotomist printed the wrong labels first - they had my name on them but the wrong tests. I thought it was an easy mistake because I have several standing orders from two doctors in the computer and they are very similar. But then, she reprinted the labels and never asked me to check the information on it, like they normally do (name and date of birth). At the end, she had the label at the bottom of a tray with a bunch of throw-away junk. They usually stick the label on the bottle before I even leave to ensure I see this being done and to feel confident that the sample truly is submitted. But not this time. This time, she shooed me out the door with "have a nice day, ma'am", my sample sitting in a tray full of garbage and no label on it either ...  

I called three days later to inquire where my blood test results were. After I had to put up with abuse of the sassy and not-so-helpful receptionist who ensured me sometimes it takes longer than 72 hours for blood tests to be processed (and after I ensured her that not for this blood test!), she begrudgingly took my complaint and number down and ensured me "someone from leadership" will call me back with an answer. 

The nurse (I guess the nurses are now "leadership" too? Good for them. They deserve it!) called me to apologize and tell me they have a record of me coming in and giving the sample but the lab has no record of my blood sample ever being received. 

"We are so sorry, ma'am. Can you please come back now and give us another sample? Do you mind?"

Of course I mind but I have no other choice. So, I dropped everything at work and drove myself back to the clinic and gave another sample in my bruised right arm (the only one with the good vein). An hour and a half later, they had a fresh sample which I was hoping had better odds of reaching the lab than the first one. 

So, here I am, inaugurating another bump in the road of a perpetual patient: the loss of the blood sample. Hurray! 

I won't ask "what's next?" because I know I am asking for trouble! 


Thursday, October 26, 2023

Abdominal Stenosis

As I mentioned in my previous post (https://livingwithfh.blogspot.com/2023/09/old-test-new-reaction.html), my cardiologist and the vascular surgeon ordered a CT scan with contrast of my abdominal aorta. This test was done in 2021 and it showed several areas of atherosclerosis of basically every branch of my abdominal aorta. 


Now, two years later, it shows the same areas of problems - some of the areas look stable (yay!), and some are slightly worse, or show new developments. For example, I have developed “collaterals”, which means additional (new) branches of the abdominal aorta that naturally grew to bypass the areas that are stenotic. So, the fact that the collaterals are there at all, to help with the proper irrigation of the gut area, is good, but the fact that they had to form at all says the original branches don’t provide proper circulation to the abdomen. 


In addition to the stenoses caused by the calcified plaque, because this is me, and I am not easy,  I also have a congenital defect of my celiac abdominal aorta called “median arcuate ligament compression“ (or MAL compression) which is rare condition in which the median arcuate ligament compresses the celiac artery which impairs blood flow to the liver, stomach and other organs. The median arcuate ligament  is the muscle and fibrous structure that wraps around the aorta at the diaphragmatic opening. So, this compression in addition to the atherosclerotic celiac artery causes a reduced flow to my abdomen. 


Here are the test results of the two scans, over the past two years: 


The December 2021 abdominal CT scan results show the following: 


  • Small caliber abdominal aorta with extensive soft and calcified plaque

  • Narrowing of the infrarenal abdominal aorta

  • Two areas of moderate to severe stenosis in the proximal celiac artery and atherosclerotic plaque at the ostium and compression from the median arcuate ligament (MAL) with mild poststenotic dilatation. 

  • Mild stenosis at the origin of the small mesenteric artery. 



The September 2023 abdominal CT scan results show the following:

 

  • Stable: Severe calcified and noncalcified atherosclerosis of the entire abdominal aorta which is overall small in caliber, unchanged.

  • Stable: There is mild to moderate relative narrowing of the infrarenal abdominal aorta at the inferior mesenteric artery, also unchanged.

  • Slightly worse: Severe stenosis and angulation of the proximal celiac artery likely owing to a combination of atherosclerotic plaque and the median arcuate ligament (MAL) compression. (previously: “moderate to severe”)

  • Slightly worse: Persistent moderate stenosis of the proximal superior mesenteric artery (previously: “mild”)


New (good and bad): 


  • The presence of arterial collaterals between the celiac-superior mesenteric artery and to a lesser extent the superior - inferior mesenteric arteries territories suggest the presence of long-standing, hemodynamically significant stenosis in at least one of these vascular territories. 



In this scan, the white part to the left of my spine is the calcified aorta. The smaller vessels springing from it are my celiac (the one in the shape of a backwards L which shows the MAL compression) and the mesenteric arteries


Although the tests seem virtually unchanged, I have new symptoms that could be related to the various stenoses in my abdominal aorta. Some of these symptoms are a fairly consistent upper-abdominal pain, which is worse after I eat; the feeling of being “full” even when I first wake up in the morning and I have an empty stomach; occasional nausea with even mild exercise, softer and more often stools. 


When I went in to the vascular surgeon this past week to review these results, the surgeon got called into emergency surgery and was not able to make our appointment. I spoke, instead, to one of the PAs (not his own PA, who I knew and who knew my case, but a new one), and having just seen me for the first time, he said that the new symptoms worry him and he will need to chat with the doctor and see what, if anything, needs to be done next. But he also said that in his opinion, the results are not much different than the ones from two years ago, so the symptoms might not be related to the stenoses. 


I also mentioned that I have been examined by a gastro-enterologist earlier this year, to ensure none of these new symptoms are GI related and they are not, according to those tests. He said he will follow up with them and then he and the vascular surgeon will follow up with a plan, if there is anything to be done differently. At the very least, he suggested that I’d move the scans to every 6 months rather than every year to keep a closer eye on the abdominal aorta. 


Because the risk of too much radiation during a year’s time is there, he suggested I’d alternate between an ultrasound and a CT scan, every 6 months. Although I dread all these different tests (I have another one for my carotid arteries and another one for my heart - both yearly), I know that keeping a close eye on these conditions is really the best way to catch some huge change in time, before having an event. If my annual heart echos taught me anything before I had my open-heart surgery, they taught me this. 


 

Friday, September 8, 2023

Old Test. New Reaction.

One of the reasons that prompted me to start this blog was so that I can share with others the many different tests and interventions I was going through with FH. I sometimes felt like a human guinea pig - and I still do, 40 years later, with every test and every new drug they send my way. 

In addition to the quarterly lipid and liver panels that I have had done since I was 8, many other tests and investigations were added after FH had caused atherosclerosis and heart disease: yearly ultrasounds, CT scans and MRIs, every-five-year angiograms, yearly ABIs, which are like a radio-wave test (I think) checking for narrowing of your peripheral arteries. To say nothing of all the X-rays for every cough you can’t explain. 


I wanted folks that might be diagnosed with FH to have some expectation of what tests are needed or required and for what purpose. 


Every type of radiation ever invented, I believe, has gotten through this body at various intervals. I know not to wear my jewelry (or anything metallic) when I do an MRI and I know that the CT contrast solution will make you feel like you just wet yourself. 


When the technologist walks you to the CT/ MRI/ X-ray/ Ultrasound room and asks (they ask every-single-time) “have you ever had a CT/ MRI/ X-ray/ Ultrasound before”, I roll my internal eyes and always say “yes”. I know that I am not allergic to the dye in the CT exam and that I taste metal whenever they flush the IV lines with saline. I know I am allergic to the glue on the EKG stickies as well as the glue of medical tape, after they tape up the IV to my arm, or after they pull the IV line out or collect blood samples from me and apply pressure to send me home, covering the gauze with said tape. 


After all these years (40 years of FH and about half of those of heart disease), I pretty much know the drill at every test and I know my reactions, or lack thereof for every test. At least I thought I knew everything. Till today ... 


Today, I had to get a CT scan (with and without contrast) of my abdominal aorta. I knew the drill: they would put an IV in, make me take my bra off and my belt if I had one (I didn’t on purpose), make me lie on a table and put my body through a donut looking machine, move the table with me on it in and out of the donut a few times, tell me to hold my breath a couple of times, and at the half-way point inject the contrast solution in my veins through the IV. They asked me if I have had the test before, and I said yes. They asked if I had ever reacted in any way to the contrast solution and I told them no, but that I hate that it makes you feel like you lost control of your bladder. They said, well, yeah, they can’t do much about that (actually, they can do nothing at all about that unless they put you to sleep but they won’t do that). 


So, we go through the motions. The tech does the first part of the test (no contrast), and then she warns me that she will send the contrast in and she’ll do the test again. All I was expecting was the really warm feeling when the solution goes through my bloodstream and the crazy sensation I have told you about. I knew it should be about 2 minutes and then it’ll all feel normal again. 


Only this time, it was different. This time, that warm sensation did not last for two minutes. After about a minute it got worse. And was getting worse and worse as time went by. It was not just the warm feeling, but my head felt like it was about to blow up. My face was numb and felt paralyzed, and the ceiling of the room (all I could see when lying down) started spinning. The table felt rickety and shaky and my head was so hot I thought it would implode! I kept thinking “I am dying! Oh, Lord, this might be it! I am losing my consciousness and I am surely dying.” It lasted for what seemed like forever, although I am sure it was more like 10 minutes. The tech came in and I was not moving and I could not even answer her. I heard her voice but I didn’t know what she was asking. I vaguely heard her asking if I was OK, and I faintly said “I don’t think so”. 


After I explained to her what I was feeling, she took me to a different room and sent a nurse to come and take a look at me. My speech was slurred and faint, like in a whisper. 


The nurse evaluated my symptoms and concluded that what I was having is what they call a “physiological reaction” - not to be confused with an “allergic reaction”. She said with an allergic reaction, my tongue and throat would swell up, I would have hives and start sneezing and have an itchy face or body, but I was not having all of this. Instead, I was having something similar to a head-rush because the contrast was injected at a high speed. She said your body is kinda confused and trying to tell you “oh, no, what just happened?” - because it got too much dye too fast in a short amount of time. 


She said CT contrast is injected at various speeds and different tests in different areas of the body ask for different speeds. The abdominal CT tests require a higher speed and this is probably what happened. She said there is nothing they can do to prevent this other than just lower the speed. But she said sometimes this is not possible because lower speeds might not capture clear pictures. 


The nurse said for an allergic reaction, they can give you Benadryl, but for a physiological reaction, there is nothing but awareness and taking it easy after the reaction happens ... 


She said next time I am getting another CT like this to warn them that the higher speed will make me loopy but to expect that there is not much they can do about it. 


I was wearing a mask in the office and all I wanted was to be out and breathe some air without a mask. She offered to keep me in the office for a bit as I was still dizzy, even after 20 minutes or so from the test. But I walked out, holding on to walls and slowly making my way to my car. It was another 20 minutes in my car till I felt well enough to drive. 


Even after I got home (45 minutes later from waiting in the car for a while), I was still in a fog. I was still dizzy and unstable on my feet, and after having some lunch and feeling a bit stronger I felt completely drained for the rest of the day. 


I am posting this just as a personal account of what can happen over time - no two tests, I guess, are alike, even if on paper they are virtually the same test. The nurse said anything can happen with time. Your body changes, your body’s tolerance for things changes and the factors that influence your body at the time of the test are always changing. I might have been fine all these years getting CT scans like they’re a fun pastime in the photo booth at the fair, but my body is different now and it can react differently than ever before. You just never know. 


I don’t think I’ll ever discount any new “old” test that I am going to have from here on out - and will look at it with new eyes and know that anything can happen. 


And oh yeah, the tape they stuck on me during the IV and after they pulled it out did break me up all over, but at least this part I was expecting.