Sunday, December 20, 2020

The FH Foundation Community Forum

When I started this blog in 2011 (http://livingwithfh.blogspot.com/2011/02/welcome.html), there was little to no information about Familial Hypercholesterolemia online. I knew no other people with FH outside my own family. I had no knowledge about genetic testing for FH and about the two forms of FH (the Heterozygous, more common form, and the Homozygous, less common and more severe form). 


I started this blog out of a need to communicate with others but also from a desire to share my journey with others like me that were perhaps just being diagnosed and did not know what to expect. 


The world has surely changed in the past 9 years! If you follow this blog, you know about my journey, from trying different medications to succeeding and also failing to keep my numbers down, but always going back to the drawing board and always hoping. You also know about the complications brought about by HoFH, about my advanced heart and vascular disease, about my massive open-heart-surgery, ny heart attack, and my recovery. I have gotten lots of feedback from people that this blog helps them through their journeys and gives them a sense of community while assuring them that they are not alone. I am forever grateful for that. 


Besides people like me who share their stories now more and more often, besides the advancements in medicine and the fact that this disease is not as new and uncommon for doctors to spot anymore, there is one other entity in the world of FH that is supporting people like me, and that is The FH Foundation (https://thefhfoundation.org/). Founded in 2013, two years after I reached out a hand towards the world with this blog, it has helped lots of people get diagnosed and shed light into what the possibilities are. They have made available lots of medical resources, untangled the often hopeless mess of health insurance enigmas, and have kept us abreast of the most recent findings and progresses in the world of FH. But more than anything, perhaps, they have created a community where FH individuals don't feel alone anymore and where they can learn from others' experiences and exchange ideas and find support. 


Once a year they organize a Community Forum, usually moderated by a medical professional, where they interview individuals with FH who come from different backgrounds and have different forms of FH. I was lucky enough to be one of these individuals this year and be accompanied by three other amazing panelists who told their families' stories and selflessly shared themselves with the world. These are remarkable stories of people coming from every walk of life, showing the truth about this disease, the struggles, and the triumphs that it brings about every day. 


This one-hour interview is worth watching if you are looking for more first-hand information about what life with FH is really like: https://thefhfoundation.org/fh-community-forum?fbclid=IwAR3YO4Epq-Cs42sALUBf8Ru7wZlB4EiTV9VaZt43oxzWCQmKFRWiMOq53tk 


**There is a registration form, but you can decide whether you allow The Foundation to send you more information or not. 


Much health to everyone! 

Friday, December 4, 2020

“COVID-19: How it worked for us” - a guest blog

 Becky is my team mate. She lives in Utah. She and her daughter and husband were diagnosed with COVID19 around Labor Day (September 7, 2020). This is her story, in her own words, and what she wants the world to know about having had COVID19. 

September 8, 2020: Becky’s announcement in a chat message to our team that her family has been diagnosed with COVID19 (a day after diagnosis)


All three <members of our family> that live here have coronavirus. (My son escaped to college in time.) We're still trying to figure out what exactly that means, like, logistically. But it's a fair bet that I'll be in and out in a pretty random/sporadic schedule. We're okay, mostly. We don't have any health risk factors, and we DO have health insurance,  but this is going to be a weird week for sure.


September 17: Becky’s note to our team after having been sick for 10 days


<rant> I'm pretty frustrated about this. I made good choices, wore my mask every time I left the house, didn't go anywhere I didn't need to go. It didn't matter, because other people didn't wear masks, and then my daughter brought it home. Now I'm sitting here unable to carry things up and down the stairs or EAT CHOCOLATE because somebody else thought it was no big deal. I would be exponentially more pissed if I or anyone I loved would have actually had a bad case. I 100% support a mask mandate and other nanny state behavior and I wish they would shut up and DO it already. I apologize, and I will not interject politics again.</rant>. 


October 8: She sent me this account privately in a Google doc (a month and a day after diagnosis) 


On this day, I had asked her if I might be too paranoid to still obey all the guidelines and restrictions and to still be very guarded and isolated. She said plainly she will send me her full story (below) and then she added: “In short: you are NOT paranoid!”


People are listed in the order that we caught it. Each person’s story is separate, but in real life we all caught it within a few days of each other, so we overlapped a lot.


One of the weirdest things was that we all had completely different sets of symptoms, although we were all definitely sick. The only thing that happened to all of us was losing smell and taste.


Victoria

Age 17, no known risk factors

Main symptoms: Mostly shortness of breath


Tori was the first to get it. We think she got it from school, because when she went back to school after isolation, someone she sits near in one of her classes had only returned from COVID isolation a few days before. Logically, they would have also had it a few days before her. We wondered if she’d caught it from friends, but all the friends she’d been in contact with had to get tested (because they’d been exposed to her). Only one had it, and he had symptoms a few days after her, so we think he caught it from her instead of the other way around. It’s also possible she got it from work (grocery store), but it doesn’t sound like any of her coworkers had it, and there’s no way to know about customers.


The first day (September 4), she had a fever and felt yucky. Her fever was only 100.something, and it never really got any higher than that. She had some pretty bad muscle pain that day too. She called in to work and they told her she had to get tested before she could work again. So I took her down and got her tested. Results back 24 hours later, positive. She only felt rotten for a couple of days, but she was short of breath for like a week. At one point (I want to say day 4?) she wasn’t feeling so bad, but she was getting short of breath. Her oxygen levels were okay (we had a finger tester) but a doctor friend said he’d probably take her in. I took her to the ER because her regular doctor and insta-care didn’t want us to come in and spread germs. The ER x-rayed her for pneumonia (she didn’t have it) and gave her a prescription for an inhaler. She used it every few hours for a couple of days, then less and less and now I think it’s been more than a week. She did lose taste and smell, but seemed to have it mostly back in a couple of weeks. She says it’s hard to know exactly if it’s all back, because she didn’t pay enough attention before she lost it, and it’s hard to compare and judge. She was 90% better in 2 weeks, and I would say is totally better now (October 8).


NOTE: Of the 6 friends that had to be isolated and tested because they’d been exposed to her, only 2 had gone into self-isolation when she told them they’d been exposed. 4 had to be told to isolate by the health department even though they knew they’d been exposed, and 2 were actively mad at Tori for giving their names to the health department because they’d have to miss work and not get money while they were tested. This is probably why, at least in Utah, cases are going up among young people: because at least some of them are idiots.


NOTE: HOORAY FOR HEALTH INSURANCE AT THE ER


Joshua

Age 45, no known risk factors

Main symptoms: Coughing, headaches


Josh caught it a couple of days after Tori. We think he caught it from her. As soon as she was sick we isolated her, brought food to her room, wiped everything down with Lysol, everything, but it was already too late. He had a cough for a couple of days, but it was so smoky here (in Utah) that we’d just assumed that he was coughing from that. Then when Tori tested positive we thought “uh-oh” and he got tested. He was of course positive, although before we heard back about his test the health department called and said they were going to put us down in the computer as positive anyway since we lived with Tori.


The cough was about the same as a cough from a regular cold. It lasted for about a week. Nyquil helped some. The headache was pretty bad and lasted for, I want to say, 5 days (off and on, but mostly on). The health department said to take Tylenol, but you can’t take much of that. Ibuprofen they said might not hurt, but other articles said it might, so we tried to avoid that. We didn’t have any aspirin. The headache was mostly in the forehead, like a really horrible sinus headache, but his nose was clear. Josh was never short of breath.


Josh was tested on September 7, and went backpacking on September 26, so he was feeling completely better by then. He’d been feeling better for a while, but I think if you go hiking in the mountains and overnight backpacking and you’re just fine, you’re pretty much completely healthy.


Becky

Age 45, no known risk factors*

Main symptoms: Muscle pain, fatigue (sleepy), fatigue (weak), shortness of breath, lack of smell


*My family has a history of autoimmune disorders, but I don’t have one that I know of. Also I should probably mention that my cholesterol tends to be a bit high naturally (despite diet and exercise) but not enough for medication (190s).


This one has more details because it’s the one that I saw from the inside, so to speak.


My first symptom was a scratchy throat. I started feeling it on the day Josh was tested, so I went and got tested even though it was just a little scratchy throat. At that point, we thought Tori had it, and Josh maybe had it, and I didn’t have it, so we were all living in separate parts of the house and not interacting at all. The health department said to assume I had it, and that was nice because then at least we could talk to each other and watch movies together and stuff. Then I got a positive test result even though I wasn’t feeling very bad yet. Then I started to feel rotten. 


I did get the same sinus headache, but only for a couple of days. I was a little bit congested, but not very, even though I apparently snored a lot. I had some bathroom trouble one day. But the main symptoms for me were:


Muscle pain. So much pain. More than I’ve ever had without an actual injury. It was mostly concentrated in my hips and legs, but even my teeth hurt. And it lasted for like five days. Tylenol helped some, but again you can’t take it very often. It just made the pain a little less painful for a couple of hours. Tori said she was in a lot of pain too, that first day, and that her friend also commented on how much pain he was in. It surprised me because for how much pain it was, you’d think it would be in the news more.


Fatigue (sleepy): It’s hard to know where the fatigue was coming from because there was a lot going on. I was sick, which makes you tired, but also I wasn’t sleeping well. The pain kept me awake, and also I was extremely stressed out because we all had COVID. That was the first week. The second week I slept like 12 hours a day. The third week I had trouble sleeping again, but I think that was just stress and bad luck. This week my sleep schedule’s out of whack so I don’t know if I’m still having fatigue or not.


Shortness of breath: This one’s weird, because it didn’t show up until I was mostly feeling better. I was sick for two weeks, then improving for one week, and then the shortness of breath kicked in and I’m way worse than I was a couple of weeks ago. I went to the library yesterday and by the time I got back to the car I was breathing like I’d been running. I breathe hard after gathering up laundry. I breathe hard when playing Guitar Hero. It’s ridiculous.


Fatigue (weak): I suspect this is a side effect from the shortness of breath. I was okay right after I started feeling better but now I’m so weak. I can’t get through a grocery trip without crying when I get back to the car. I can’t go for a walk because it’s hard to get back up the hill to home. If I overdo things, it feels like really low blood sugar or something where you can feel your muscles desperately searching for energy and there just isn’t any. It’s super frustrating for a few reasons. It’s frustrating to have to depend on people to do stuff I feel like I should be able to do myself (shopping, chores). It’s frustrating to be stuck at home because it’s so boring here. When video games are too tiring, all that’s left is movies and needlework. I’m running out of movies, and needlework has its own way of driving you slowly crazy. That’s probably not useful info to you but ARRRRGH I’M SO FRUSTRATED.


Losing smell and taste: You can function just fine without smell and taste, but it’s very weird and surprisingly depressing. Whether we want to admit it or not, comfort food cheers people up, and when you’re already stuck at home feeling rotten, losing taste feels like kicking you when you’re down. Also there was this weird not-quite-smell-not-quite-feeling that was there for the first week or so that was weird and unpleasant. And I was like, well, none of us can smell so hopefully we don’t get a gas leak or anything this week! That lasted longer than any other symptom for any of us, and it came back in bits and pieces, so I could smell flowers, but not cooking meat, and cloves smelled weird because I think I was only detecting some of the chemicals or something. Weird and unpleasant.


I don’t know why I’m having trouble so long after the rest of the family is better. Bad luck I suppose. I have a checkup on the 25th (of September) so if it’s still going on then I’ll find out more. 


Michael

Age 19

Michael left for college on August 19, and didn’t ever show symptoms, so that was a huge relief that he just missed it completely.


October 9: Becky’s note to me (a month and 2 days after diagnosis):


Update on coronavirus in case it's useful to know: I did have to go to the insta-care clinic this morning because my breathing took a turn for the worse. They x-rayed me (I'm fine) and gave me an inhaler and also some pretty heavy doses of prednisone (steroid) for the next five days. I do feel a little better this afternoon, so here's hoping it helps. 


October 23: another update from Becky (a month and 2 weeks after diagnosis)


I went into the ER Friday because I was having trouble breathing and my chest hurt. I probably didn’t need to go to the ER, but I was freaking out. They took another x-ray and an EKG and tested me for blood clots (my mom died from blood clots). That was all fine. The doctor told me I have “Reactive Airway Disease” which is apparently what they call asthma when you haven’t been specifically tested for asthma. They put me on some pills (generic Singulair) and some powder that I have to breathe in (Advair) which are both asthma medications. The good news is that they seem to be working! The doctor said that I’d probably be on them for several months.  I still get winded and tired easily, but I don’t have to lie down nearly as much, and when I’m not active I feel totally fine, which is new and exciting for me.


I asked her if she had ever been diagnosed with asthma before or any other lung disease. She answered: No, I don't think so. I can't remember having anything like this before. I get hay fever sometimes, but I don't think that involves your lungs. I do have a cousin with asthma, but no one in my immediate family has it. I'm just glad the doctor figured out what was going on and how to treat it. I'm not thrilled about possibly having asthma, but it's way better than having breathing problems that I don't know what's happening or what to do, if that makes sense.



December 2, 2020: I asked Becky for an update on this day. This is her note ( 5 days shy of 3 months after diagnosis)


Becky’s been wonderful: she is one of the hardest-working people I know. Incredibly smart, too, and even more, incredibly humble. On the virtual calls we have, though, she always looks very tired. So, I checked in with her and asked her today how she feels and whether the doctors have any idea when her life will be back to normal. This was her answer: 


My doctor said 3-6 months. 3 months is next week so I'm pretty sure I'm not going to make that goal.  If I'm not noticeably better in February I'm supposed to go back and she'll start sending me to specialists. It wouldn't do me any good to go to specialists yet because I might still get better by myself. Personally, I don't know if I will. I haven't made any improvement in a while, so right now it's less "rest so I can get better" and more "rest because this is what life is like now." 


Honestly it's kind of rough, emotionally. I am trying very very hard to be patient and optimistic, but some days that's kind of hard to do. I don't mean to complain. I really don't. I know that other people have it much worse. No one I know has died from COVID, and my sister has MS and has been dealing with this sort of thing for years. But I don't love it, and I wish people would understand that this is just not worth the risk. I do have LOTS of support, so that's good. I have no idea how I would cope if I was alone.  


... it's been nearly 3 months, I'm still on Advair and Singulair, and I'm still only able to walk around the block, and not even every day. If I do more than that it's a bad time.  


I thank Becky tremendously for letting me share this with you all and I respect her courage for fighting this, as well as her selflessness for sharing herself so kindly, honestly, and thoughtfully with the world. She is my hero! 


Much health to you, Becky, and thank you, again, for the gift you have given us of your story.