Thread by @pamelarbishop

Tomrrw I leave my family for a mo to try #helpapheresis for #LongCovid. I know it isn't a cure & results vary & understand my privilege for being able to try it. But I'm going to give an honest, real-time account of it here bc so many are curious. Watch this space #TeamClots

Day 1: up @ 5AM thinking of all the things I shld do today before I leave. Realizing last night was our last fam dinner at home for a mo was tough. Hubs & kids so hopeful this will bring back some of the person I used to be. We all miss her. #LongCovid #HelpApheresis #TeamClots

Two legs of the journey down, one to go. Exhausted but in good spirits. Traveling is hard with #LongCovid & #POTS (understatement of the year). My companion is good company and keeps me smiling.

Day 3 (Day 1 eve/2 were travel). Travel was long and difficult. If parents hadn't gifted business class for the long flight to Europe (= lie down for several hours), wld have been v v bad. ~18 hours total travel. What else helped: 1. Massive hydration 2. Salty snacks 1/

3. Amazing support person 4. Neck brace 5. Lying down however and wherever possible (or at least putting feet up). Wld have slept 24 hours but amazing Cypriot hosts stopped by to see if we need anything. V fatigued today. But woke up to this 2/

Clinic makes you wait at least 4 days after 10+ hours of travel for apheresis treatment. Today and tomorrow I rest in this beautiful place. Friday is my intake appointment (blood test, health info, etc). Will report on what that is like. /End

Forgot one very important piece for the travel: I got my PCP to prescribe two days worth of pain medication for the trip here and back. When the pain became unbearable in my neck and spine, I took it.

Day 4: Not much to report. Took it easy. Drank a lot of water. Met a friend w LC in person (finally!) who had her 1st #helpapheresis treatment yesterday. Always great to exchange notes w other ppl w #LongCovid. Intake appt tomorrow. #TeamClots

Day 5: Finally had my intake appointment. Everyone at the clinic was very kind. I saw Dr Irina, who discussed my #longcovid history and symptoms (I had already shared all of my medical records electronically). Then I saw nirse Silke, who checked my veins with ultrasound 1/

To see if my veins were suitable (i.e. large enough) for the IV needles. We will try Monday to use the IV lines, but if it does not work I will have a port inserted. There are advantages/disadvantages to both, so we will see. Overall v impressed with the clinic and the staff./End

Day 6: Down day. Staying in bed. Missing my family. Hydrating and resting.

Day 7: woke up at 6AM to blaring Guns N Roses 😂 Larnaca International Marathon is right outside my apartment. Great view of the finish line! Vid is man from Estonia finishing 1st. Back to rest and hydration. 1st #helpapheresis treatment tomorrow.🤞 #LongCovid

I have to add that when I heard cheering for the the back of the pack I came back out to the balcony and was moved to tears. A woman in a wheelchair crossed the finish line, as did a man pushing a clearly quite disabled adult in a custom mobility device. 1/

Another young man with a visible disability who was clearly in pain sprinted the last few yards and collapsed right past finish line (medics immediately attended to him and he was up after a bit). If I needed inspiration for what I am abt to undertake, this was it. #LongCovid

Day 8: Today is the day. I leave in 20 min to go to clinic. I am a mix of nerves and excitement. Having done much research prior, I know that it can be difficult to get veins to cooperate w large needles. Hoping for a good 1st try. Will update after. #LongCovid #HelpApheresis

The good thing about traveling halfway around the world for treatment is that you don't run into anyone you know wearing giant lidocaine patches in public.

Day 8 update: TL;DR treatment did not go as planned. On to plan B.

I got to the clinic and was taken back immediately. Everyone there is very kind. Once in my treatment chair, Silke checked my veins with ultrasound again and said they were much improved (so all that rest and 1/

Hydrating helped). I sat with hot water bottles on my as for about 30 minutes. The (massive) needles went in no problem. BUT my blood would not flow well through one of my arms when tested. Apparently it needed to be at 60 (?units?) and mine was at 30. The other arm was fine 2/

So, I was given a vitamin infusion, scheduled for HBOT tomorrow, and awaiting the email with my appointment for a catheter, which probably won't happen until Friday. I'm disappointed, but knew this was a possibility. Dysautonomia throws a wrench in everything. I just never 3/

Know what my body will do (or not do) anymore). But the catheter will ensure that enough blood flows. Still could be problems of course, but hopefully not. For now, drowning my sorrows in halloumi cheese. #LongCovid #HelpApheresis

Battle wounds, treatment attempt #1. End/

Day 9: strap in, this may be a long 🧵. Here goes: After my failed attempt at apheresis yesterday, I was told I need to get a port inserted to be able to have the treatment. This is done in Nicosia at a hospital. I am supposed to have it done Friday but that is not confirmed 1/

Yet. In the meantime, Silke recommended 2 days of HBOT. I had done HBOT in the US and found it not very useful, but was told it is much stronger here. Understatement of the year 😂 HBOT is at the clinic next door to the apheresis clinic. They work together to offer services 2/

So I thought I would give it a whirl. Unfortunately I woke up in a huge POTS flare, but went anyway. Everyone at the clinic is super kind and accommodating. Over the top kind. I was slumping in the waiting room because of my dizziness and an employee offered me a pillow and 3/

A spot to lie down while waiting. One thing that strikes me as very odd, however, is that the employees often aren't wearing masks until they see me come in with one, and none of the patients were required to wear them. This is different next door at the apheresis clinic, 4/

Wouldn't be more cautious. Anyway, I had to sign a form saying that I wouldn't bring in anything combustible. It was fairly lengthy and precise It made me worry that I might combust in there (kidding). The HBOT chamber is like a submarine. It had I think 10 seats. Everyone 5/

Comes in and has a seat. We were all made to change into scrubs and Crocs so that we would have nothing combustible on. Once inside, The chamber was closed and we all sat there while the pressure was increased to 10 km below sea level. It took ~15 minutes. 6/

Being overly cautious to not catch COVID, It was a bit uncomfortable being in the chamber with other unmasked people. There were two ladies from Russia and one from Israel. Plus the employee who was asked. The ear pressure was way more than I had experienced, but was able to 7/

Manage to equalize the pressure. When we got to 10 km, we were each given individual oxygen masks that were strapped on. I got a bit panicky because it felt like I couldn't breathe. There was more pressure in the mask than I had experienced. I kept being told to read regularly 8/

But with the pots flare and the autonomic dysfunction I was struggling. So I was doing box breathing. It was the best I could do. About halfway through I was starting to feel like I was going to pass out, so the employee made an accommodation for me to lie flat. This was much 9/

Better. After that I just closed my eyes and focused on a regular breeding pattern. They were televisions for everyone sitting up and they could watch a documentary with headphones. After the session I was quite dizzy and needed help walking out. 10/

Unfortunately today I am in between support people so everything was just so much harder. If you decide to make this journey, I strongly suggest having someone with you with the entire trip. I don't feel anything but exhausted right now, which I would expect 11/

Given all that I had to do today (call cab, wait outside in sun, wait in waiting room, HBOT, make it back to apt, find food). Maybe tomorrow I will wake up feeling refreshed, who knows? As always, I'll keep you in the loop. Take care all. #LongCovid #helpapheresis

I will just add that being in a country where multiple languages are spoken can be a bit cognitively overwhelming. All the clinic staff speak English, but ppl are from all over and even communicating with the other pts took a lot of cognitive effort. /End

Day 10: Another HBOT today. Hopefully will be easier now that I know what to expect. Still do not have appointment to get catheter placed for apheresis, which is disappointing as I have now been here 10 days w no successful treatment. Messaged Silke and she said the Dr is 1/

waiting for the catheters to arrive and it "should be any day". So just here in limbo for now.

Yesterday I had my regular breakfast of yogurt and fruit, which did not stick withe during the many hours it took to go to clinic, undergo HBOT, get back to apt. So today I 2/

Decided to eat a large breakfast so I would not get so dizzy. I ordered "protein pancakes" and this is what I got 🤣 Not sure if they were rlly healthy but were delicious! Got abt 1/3 of the way though.
In positive news my husb and kids arrive today for a week! Very excited! 3/

As far as how I'm feeling after yesterday's HBOT--no difference. Still a bit POTSY, tired. Slept well. My ears hurt a bit from the pressure. Hopefully they won't hurt worse today. Will update later. #LongCovid #helpapheresis 4/

HBOT was much easier today. Managed to snap a few pics of the chamber to better explain the setup. Am feeling a bit more energized. Perhaps the O2, perhaps LC rollercoaster. Too early to tell yet 5/

Day 11: I got the message this AM that the catheter supplies are in & I have an appointment at 2PM today! Hooray! Tomorrow will be my first real apheresis treatment.

Yesterday I felt really great after HBOT and went to dinner with my family & took a little walk to show them 1/

My little neighborhood. The kids were amazed by how different it is from home. Not sure if the HBOT was giving me energy or having family here, but I will definitely try to get more sessions in before coming home. Will update on how the procedure goes later today 2/

So catheter placement went fine, but things are definitely different here from the U.S. My husband drove me to a private hospital in Nicosia (~45in). There is a doctor there who works with the apheresis clinic to place the catheters (relatively new for the center, I was the 3/

PT, they said). We had to have certificates from Silke saying we had taken covid tests to enter. This was a challenge because the guard did not speak English and he kept asking for our "vaccine" but we finally got that sorted. Then we were directed to an office where we waited 4/

For who I thought was the Dr, but was actually some sort of assistant. He literally came in at 2:00 carrying the boxes w the supplies that had just arrived (whew!). He was so kind (as literally *everyone* has been so far on this journey). He showed me the Cather and I just 5/

About had a panic attack. The thing is Enormous. I was expecting a small thin line but this was huge. Wish I had taken pics but was just trying to keep up. So he took me to the surgery room and we were chatting about the procedure while he got things together. Then when 6/

He got it all together he said "ok, drp your pants" 😳 🤣 in the U.S this would never happen w out a nurse in the room, but this seemed very procedural (my husband wld have been allowed back but I told him to just wait in the waiting room). So I did & hope on the table. 7/

He proceeded to prepare the catheter area (groin, I'll spare the details but there was a lot of cotton placed in areas and a razor involved 😳) all the whole chatting away. Then the surgeon came in and asked if he cld bring students, which I am always on with (the professor 8/

In me I guess. Everyone was v kind, respectful, and professional. It was local anesthetic so we chatted the whole time and the surgeon was quizzing the students on things. All very pleasant. I barely felt a thing. So now I can have treatment w out worry of blood flow! 9/

I have to be very careful and rest. No shower for two days, no bending, squatting, etc. Overall a v good experience. Including a pic here to show size, but of course all wrapped up and sterile. End/

A funny lost-in-translation note: my weight was in my chart as 120..kg. So ~265 lbs (@ 5'2"). The dr & team got a kick out of that as I am only 120 lbs. They were expecting a v different patient! My fault I'm sure. U.S. 1 of the only countries that doesn't use metric sys, sigh.

Day 12: Slept fine w the catheter. Kept a pillow between knees which helped. It's a bit sore this AM now that the anesthesia has worn off. I am following directions exactly bc I really want this to work! Treatment this AM. Will update after #LongCovid #Helpapheresis 1/

Just got back to my apt. Apheresis success! My blood was very thick and did not want to cooperate fully but Silke seems to know exactly how to handle any problem that arises, so she got it flowing. The process was painless with the catheter and I chatted w my new friend E, who 2/

Is also having treatment. Overall an easy process now with the catheter. There can still be issues of course, but today was great. Can't say enough how kind and thoughtful the staff are. You are never left alone and any discomfort is addressed immediately 3/

I feel a bit worn out as I wld after any exertion these days, but not much different yet. Whole process took ~4 hrs. I had quite a lot of particulate filtered (lrg mid container is filter, dark line at bottom is top of particulate that had settled + more in filter). 4/

Now I rest for the weekend and go back Tues for #2. Here is a pic of the catheter lines during trt. Can see large volume of blood is moved. Overall, went well today. Now to spend time w my family before they go back to U.S. /End #Helpapheresis #LongCovid

Day 13: Tired today from the Larnaca partying noise last night (knew this wld happen Fri/Sat when booked, but wanted ocean view!) But otherwise well. Catheter bled some last night but Silke checked in w me this morning and I showed her & is not to worry abt (never wld happen 1/

In U.S. that physician wld call to check in, much less on a Saturday! Wish I cld bring her home w me!) Cather a bit sore, not unbearable. Overall feeling fine. If I had slept wld be able to better guage changes, but hard to tell. Beautiful sunny Cyprus day! 2/

Fortunate family is still here for a few days. Husband is grocery shopping to stock me up for the rest of the trip as I can't walk much w/catheter. Apheresis removes fibrinogen so easier to bleed & must be careful. Happy Saturday all! /End

Day 14: crashing today. Felt well yesterday and went for a walk (800 meters) to a restaurant w my family. Paying for it today, so I will rest. Hard bc I want to soak up every precious min w them before they leave and I don't see them for 2 (poss 3) more wks 1/

I have walking sticks and we went v v slowly, but it was too much. Cather still good 👍 Wish I cld take a nice hot shower, but afraid to wet the dressing too much. Lucky to have daughter wash my hair for me yesterday 💕 Will update later #LongCovid #Helpapheresis 2/

Why crashing in Cyprus is better than crashing at home: I can hear ocean waves and someone playing hauntingly beautiful accordion music by the sea.

If I haven't mentioned it, I love my acupressure mat for back/neck/head pain. Today rolled up to get neck 3/

Ended the day by watching official lighting of the town Christmas tree w fam and dinner next door with two (now) dear friends who are here for the clinic also. It wasn't a lot, but I wasn't 100% to start so I know tomorrow will be rough. Some things are worth the spoons End/

I'll just add that the lighting was preceded by Mezzo-soprano Tsveta Christoforou singing Por ti volare live in Greek and it was incredibly beautiful ❤️ End for real/

Day 15: Woke up to a beautiful Cyprus day again. Today is my last day w family, so trying to soak them up. Resting while they walk the city. One last dinner together tonight. Trying to stay in the moment & not be sad abt their leaving. Trt #2 tomorrow #helpapheresis #Longcovid 1/

Rested much of the day to get one last dinner together (always our family time w kids and husband in all sorts of sports, etc). Walked a bit w my husband to the Larnaca Pier where we "locked our love" as is tradition. 2/

Catheter site is aching a bit, lower back aches some on occasion as does abdomen. Otherwise no change. Curious to see how it works tomorrow after sitting unused for days. Hydrating like crazy today so blood will flow tomorrow. /End #Helpapheresis #LongCovid

Day 16: #Longcovid #Helpapheresis Treatment #2 today! Family left v early, which was good bc we were too sleepy to get emotional. I watched their plane fly out from my balcony. It was good for my soul to see them, but I didn't rest as much as I should bc I wanted to be with 1/

Them. So on to the business of why I traveled halfway around the world.. treatment and radical resting. Hoping catheter cooperates w little trouble. Blood was v thick 1st trt so imagine it may need some work to flow. We will see. 1/

(Just realized both Tweets this AM were labeled as 1/, sorry!) At the clinic, catheter completely cooperating, on the machine now and all is running smoothly. I had noticed color in my face this AM for the the first time since I became sick, thought maybe just imagined it, but 2/

Silke commented on it immediately (even w my mask on). She says this is a v good sign & I agree! Excited that the catheter makes the rest of trts so easy. It's a bit of a pain to manage bc must b careful, but so worth knowing I don't have to worry abt needles 2/

Was chatting w the fellow next to me from Sweden who is here for his 2nd time for #HELPapheresis. 1st time he returned to close to baseline, then got reinfected and here again bc of the relapse. This is going to keep being a major problem until society takes 3/

This virus seriously. Those who already have #LongCovid will keep getting worse upon reinfection. Those who don't have it yet will likely have LC after multiple reinfections. This is not sustainable. 4/

Just got back from a very successful #helpapheresis session. Although I did not feel differently after trt #1, this time I began to feel a "lightness" during trt. Hard to explain other than the yolk of being so sick for ~2yrs weighs heavily on the body, and I felt it lifting 5/

Today. Now home & still feeling it. My driver Stavros (whom I adore & drives me to all appts) said he could see I was very happy. I know that many ppl crash after 3 trt & I am ready for the possibility. #LongCovid is a wildcard. For now, hydrate, rest, halloumi cheese 😁 5/

I am *really* struggling with the post numbering today sorry! Still have #longCOVID brain. Forgot to add my filter post. Still pulling out a lot of microclot "gunk." Also, saw a rainbow on the way home. Taking it as a good sign. 6/

Last update for night. Been resting since trt. Feel fine, but HR unusually high. Resting usually low 60's, this eve 80-90 so far, just lying on couch. Not worried, just interesting. /End

Day 17: Slept like a rock. Woke up to another beautiful Cyprus day sunny and 70F (yest was the 1st cold stormy day & Stavros had on a huge winter coat & said "this is Cyprus winter." If this is winter, I'll take it!). Still have color in my cheeks. I know vanity goes out the 1/

Window w chronic illness, but it sure is nice not to look like the walking dead. Catheter area is a bit sore, not too bad. Physically, feeling pretty great. I would go for a walk but I know I have to rest. Starting to see the half moons (lunae) in my nails again, 2/

They disappeared (except my thumb) sometime along the illness journey.

It has been a long time since I've had to force myself to rest. That feels pretty good. I hope it continues. 3/

Mid afternoon update, day after #helpapheresis trt #2. Woke up slowly as usual, had breakfast, then I would usually lie back down. But I became so energetic that I literally could not sit still. Tried hard to do v little but ended up doing dishes, sweeping, doing laundry 4/

Realized I was probably way overdoing it. I haven't had this kind of crazy energy since the last "energy medication" was tried on me (modafinil, which I had to stop taking because it induced artificial energy and made me crash horribly in the afternoons). So I made myself 5/

Go to the beach and lie down. I don't know what's going on, but curious to see where this goes. I have a friend here who has done more trts and has not had this response. I had so much energy I felt like I was vibrating. Who knows where this will go? Will update #LongCovid 6/

So it's eve now, and I still have a higher than normal HR (80-90 resting, but it jumping super high when I stand as it usually does). I'm starting to be tired, but not "mitochondrial" tired (as I think of the fatigue w #POTS & #MECFS), but more 7/

Like the way I used to feel after a good productive day at work running my research center. I forced myself to rest after doing some cleaning this AM to get energy out. I know rest is key. So hard w energy I didn't have tho. Rest again tmmrw #LongCovid #helpapheresis /End

Day 18: Rlly thought I would b crashed today, but still doing ok. Not buzzing like yesterday, but also not fatigued. Just feel like a *sort of* normal person. HR went back to normal sometime in the night. Thinking of staying another wk to get 6 #helpapheresis trts 1/

Which was my initial plan, set back by catheter surgery. Then would add several HBOT for good measure. As I said, this feels like my hail Mary and I want to make the most of it bc I doubt I'll be able to come back. It's not a cheap trip from the U.S. & trt is all out of pocket 2/

Afternoon update: pretty day, headed to beach to lie down. While walking started feeling quite POTSy and realized I forgot my walking stick. Back at apt now, still feeling a bit wonky/head trippy. Going to hydrate/electrolyte myself & see if that helps 3/

Just realized at 3:42 PM local that I forgot to take my morning meds 🤦‍♀️ explains a lot. Came in, drank a lot of water + LMNT, ate lunch (which I had also forgotten), and proceeded to "shut it down" (term we use in our family that means I go I to a dark room and wear eye mask, 4/

Earplugs for a period of time), which I usually have to do multiple times a day --after any exertion. Lying here and realized forgot meds, but also realized I didn't shut it down once yesterday. Not once. It was like going from 0 to 60 health-wise. 5/

Obviously need to be more deliberate while I am here. Going to shut it down for a while now that I have meds, food, water in system and see if I can recalibrate. Will update later. 6/

Well that was an unnecessarily difficult afternoon. I'm coming back around now. I made the mistake of acting like I'm not sick, when in reality I still am. But yesterday and this morning I actually felt *human* again for the first time in 2 yrs. I know LC folks will get 7/

What that means. The illness takes away everything about us that we knew. To have that back for a moment was amazing, but something that I need to not take for granted moving forward. I still have to take the steps necessary to be well. But if I could get back to that place 8/

Again, I swear on my life I'll never take it for granted again. That doesn't mean I won't make mistakes, but I had a taste of *normal* and learned a hard lesson today that I won't soon forget. /End

I was waffling on showing this pic bc age 46 (47 tomorrow!) & no makeup/no filter = not exactly flattering. But, the pic on the left is my crash day after intake appt, no trts. Right was this AM after 2 HBOT + 2 #HelpApheresis. I can literally see my skin getting oxygen again.

Day 19: treatment #3 happy birthday to me! Looking forward to seeing what it brings. 1/

Birthday breakfast view ❤️ Hello 47, nice to have made it to see you! 2/

Shout out to my incomparably amazing husband, who apparently scheduled text messages to me every hour this this AM (I'm 7 hrs ahead here) for my bday w sweet messages & pics. This was when they were here & we we're all crammed into the impossibly tiny elevator at my apartmnt 😂3/

Clinic a bit busier today so I'm going to share something while I wait.t covid-versary is Dec 5, so right after I turned 45. Last year ony bday I was so depressed that I couldn't even look at my phone all day. I didn't answer texts or calls. I didn't want to celebrate a year 4/

I'm which I lost my career, my ability to exercise, specialize, be a good wife, mother, and friend. I had been in steady decline for almost a year. To say I was depressed is a pretty major understatement. Maybe one day I'll delve into the mental health roller coaster of all 5/

This, but suffice to say at this point that it got bad. I never thought on this day last year that I would make it to 47. Yet here I am, 6k miles from home doing "experimental blood washing" (H/T BMJ 😂) feeling amazing w hope for the future 6/

I guess my point here is that this illness has taken me to the depths that many of you are in now, but you just never know what will happen. Please hang on. I want to inspire you to hang on. There will be a way forward. Just hang on. ❤️❤️ 7/

Also sorry for typos. Brought wrong glasses (less reading power, hello middle age! 😂) 8/

#LongCovid #HelpApheresis trt 3 in the books! Filter is getting less gunk according to Silke, which is a good sign. Took a pre/post of the filter this time for comparison. Still feeling amazing, but am ordering in from my favorite restaurant and taking it easy for my bday 9/

For comparison, filters over 3 trts. Less sediment over time & more visible details in filter = less gunk (i.e. microclots) to filter out of my plasma. #TeamClots #LongCovid #HelpApheresis 10/

Evening update: feeling great, but having some chest pain. Nothing to make me concerned, but 1st negative side effect for me. Several patients have complained of this when I have been in treatment. Silke gave a very in-depth scientific explanation about it when I asked 11/

But of course it flew out of my brain. Something to do with the reperfusion of the muscles (?) At any rate, at least I know it is fairly common and it isn't too bad. Hydrating and resting! 12/

And good night all! Thank you for the love and supportive bday wishes today. Was very special as I am alone here until tomorrow. Next trt is Tuesday, so long weekend to rest. Curious to see how I feel between now & then. Feel like I must crash at some point. Maybe not. /End

Day 20: a bit late on the update as I went to brunch w my new friend E, who surprised me with a birthday candle in my breakfast ❤️. She gave me a bday card w a chicken on it - turns out it is *her* chicken. We chicken ppl just find each other, I think 🙂 1/

So back to why you are all following me here: feeling well again today. So we'll that E and I took a v slow stroll to some old art/book stores that were just fascinating. While we strolled, however, we both started feeling a bit woozy so we stopped when we found benches 2/

And cut our excursion short when my catheter leg got achy. Still good to be out, but a reminder that I still have #LongCovid, even though I'm feeling quite a lot better from the #helpapheresis trts. So now resting, hydrating, waiting on my next support person to arrive this 3/

Afternoon. A dear friend from Denmark whom I haven't seen in years. Will be wonderful to catch up. Health wise, not buzzing w energy but still not crashing. Will see what the walk does.

Did notice a bruise on my shin when I woke up a few days ago 4/

That I didn't remember creating. It is right at the level of the bed frame so assume I bumped it as bedroom is quite small. But it looked like a bruise I would remember making. It has grown ea day and I showed it to Silke year. She said to keep an eye on it 5/

It makes sense that we would bruise easily by removing clotting agents. I don't have any other unusual bruises so not terribly concerned but do wish this one would stop getting worse and start getting better. Bc I document everything, I'll share the progression w you 6/

With permission, I'm sharing the card E gave me w her chicken, Lindyhop, on it bc I think it will make ppl smile. It makes me smile every time I look at it! That face! ❤️ 7/

Evening update: dear friend from Denmark has arrived. What a good rush of serotonin! Spent the afternoon/evening catching up, having dinner. For anyone keeping tally, today I went to brunch, went for a walk, had a very long conversation, and went to dinner 8/

Where we had more conversation, and walked back to the apt where we chatted some more. Huge day for me. And I'm only regular tired (but going to bed v early). Definitely not overly energetic, but enough energy to do all that, which is a lot for me! #LongCovid #Helpapheresis /End

Day 21: Last night was typical for my location--noisy until 1:30ish when the bars seem to close. But after there were ppl making quite a lot of noise until ~3:30 AM, which made sleep difficult. Starting getting a migraine ~4AM & realized I haven't had a headache or migraine 1/

Since trt day 1, when I woke up w the usual pain. Interesting. Glad the noisy nights are only Fri/Sat. Took Zomig and knocked out migraine. Typically when I would get a migraine I would feel horrible the whole day, but woke up feeling fine. I wouldn't consider 2/

My current condition anywhere near pre-COVID "normal" but I'm definitely feeling much better consistently than before treatment. Denmark friend brought the sun figuratively and literally. Today is the warmest sunniest day I have seen since I've been here! We went to the beach 3/

This morning and relaxed. But after learning my first lesson about overdoing it, I came back to the apartment to rest *before* I felt I needed to. Remembered to take my medicine this morning, staying hydrated, eating, now resting while friend soaks up the ☀️ 4/

I will add to my "sunshine and roses" Tweet today that my memory is still shite, which makes me wonder which damage is perm and which might be reversible. I still continually forget what I said, repeat myself, and forget what I was planning to do next (obv w the meds fiasco). 5/

Tomorrow is my 2 yr covid-versary. This photo was taken one day before I lost my taste and smell. Husb had a PCR test for travel and we didn't have results back yet. He was completely asymptomatic. We had no idea that the next day, life would change so much for us all ❤️‍🩹 6/

I took my friend to my favorite restaurant for "linner" today. One of the fun things about Cyprus is that there are hundreds of cats that just live around various shops and restaurants. They are well fed and taken care of. Tonight, this little cutie was our 3rd dinner guest 7/

After dinner we took a short stroll. I could have walked more but *pacing* now. I still feel really well. Bruise on my leg is finally getting better rather than worse. Resting HR is actually back in 60s (for now at least). #LongCovid #HelpApheresis trt #4 Tuesday🤞/End

Day 22: Woke up w a migraine but didn't take med bc I thought maybe I could hydrate it away. Wrong. Took meds, stomach got upset, blah blah blah (have had migraines for 14 yrs, were completely under control B4 covid infection, now get them again, so used to the routine). 1/

I ate something new to me before last migraine & this one, so I think that is the culprit. Starting to abate now. Otherwise, still feeling ok. Was thinking yesterday that being here w beautiful weather, no responsibilities also must rlly play into feeling better. Curious how 2/

Things will go back home w busy kid schedules, home responsibilities, etc. Only time will tell. 3/

While I rest in prep for #HELPapheresis trt #4 tomorrow, I'll write a short 🧵 about my #LobgCovid journey. I had been following news abt covid-19, & in March 2020 when my kids' school shut down I packed up my whole office and (as it turned out) never went back. 1/

I was a research professor directing a v busy & growing res center at a large university. Was able to do this all remotely, thankfully. We were so careful. Kids virtual schooled, no visits w ppl, grocery delivery, all of it. After summer 2020 decided to keep kids virtual 2/

& put them in small "learning pods" a few days a wk for social interaction. Created a "Quaranteam" w 2 other families that were taking same precautions so we all could have social interaction. 5 days a week, I worked out virtually w a friend via Zoom. 3/

An avid gardener, I spent all my extra time in the yard. It never looked better! Dec 2020 my husband and I caught covid anyway (he still had to go to office for work). Thankfully the Quaranteam & learning pods were not infected by us. Neither were our kids 4/

Interestingly. Husband completely asymptomatic, I became v v sick for 3 weeks. Never had cough or fever, all neuro. Did not go to hospital bc at the time, they could do nothing unless your oxygen was low. I checked my oxygen everyday and it never dipped. 5/

But every single day I thought I was going to die. Literally. I had a severe headache, insomnia, chest pain, aching joints, painful feet, twitching muscles, GI issues, horrid brain fog, dizziness, derealization, hallucinations. So much. I remember thinking there's no way 6/

My body can endure this without permanent damage. But by Christmas I was better. Went back to work virtually in January. Still had bouts of fatigue nausea and headache. I thought it was just the healing process. Would work, lie down, work, lie down, repeat all day. 7/

But the episodes became more frequent and by March I was sick every day. Remember sitting down to dinner after reading about something called Long COVID, and telling my husband "You know I don't think this is the healing process. I think something is damaged." 8/

That began the quest for answers. I took medical leave from work and devoted all my energy to trying to figure out what was wrong. All ppl w #LongCovid know what came next. Dr after Dr. Gaslighting. Blaming me. Psychosomatic. Hopes up/hopes dashed. Symptom mgmt by 9/

Throwing medications at me to see what sticks. All the while I slowly declined. I had to leave my career. Dx w #POTS, #MCAS, #MECFS. Terrifying cognitive and memory problems. Massive PEM w exertion. Life as my family knew it halted. No more active mom, just tired & sick mom. 10/

For almost 2 yrs. I read all the research I cld find. I did interviews to raise awareness and plead for research. I was deteriorating feeling like watching myself dying slowly. I read the research abt microclots & followed #TeamClots. Which led to res abt #HELPApheresis 11/

Reached out to ppl who had had it. Learned all I cld, then decided it might help my body reset, give me more time.

We are not wealthy ppl, but we have worked hard and saved for emergencies, and this sure seemed to qualify. So here I am. Here we are as a family, 12/

Investing in a treatment that may give me back to them. May make me feel human again. So far, I have responded well, but am so cautious not to get my hopes up. Living in the moment, missing my family, grateful to be able to try this, and hoping it gives me back to my family 13/

More of the person I was before this day two years ago. And hoping my journey can somehow make a difference for others who are suffering ❤️‍🩹 /End

Day 22 eve update: had a crash this afternoon. Went for morning walk and was hotter than expected. Rested after but super fatigued GI unhappy leg muscle twitches. Fitbit congrats 4 meeting fitness HR goals all day in apt resting. Reality check, I guess. #HelpApheresis #4 tmrrow

Day 23: Woke up early to watch the sunrise and caught this beautiful pre-dawn pink sky. Renewed conviction to fight this nasty virus 💪 #Helpapheresis #4 today. #LongCovid can bite me 1/

Trt #4 successful & easy. Seriously felt like skipping out of the building. Went to early dinner w friend and now tired. Not #LongCovid "mitochondrial malfunction" tired, but tired like a regular human who had a busy day. Catheter is a bit more sore this time, maybe bc blood 2/

Pressure wasn't stable & had to adjust some things? Or maybe having a giant tube stuck in your vein for 2.5 wks just gets sore. Anyway, last appt is Fri & then out it comes, hooray! Plasma filter much clearer today, so Silke thinks that will do it. Then HBOT final wk. 🤞🤞/End

Day 24: Still feeling pretty well. Resting. Looking forward to getting the catheter out Friday after #LongCovid #HelpApheresis trt #5. It has been very helpful but it feels a bit sore today and I'm a bit achy in the abdomen, which the surgeon said may happen. 1/

My husband & children decorated the house for Christmas, something we always do together. Missing them and home today, but 🤞 to come back to them a healthier person. Counting down the days. 2/

Day 25: Sorry for the lack of eve update, but I had a good reason. A fellow patient here recommended a nearby spa for lymphatic drainage massage, so I did it. Not realizing fully what this type of massage does (help rid the body of toxins). Apparently my body is hella toxic 1/

Bc I went in feeling fine & after felt like my body went through an exorcism 😂 Hours of chills, sweating, eyes watering, nose running, etc. I was so exhausted that I went to bed v v early. Was worried I had caused a crash, but today, feeling great! 2/

My visiting friend, who is one of the healthiest people I know, is going for her massage this morning. Curious to see how a healthy person reacts.

Anyway, doing great this AM. Catheter area no longer aching. Another rest day then trt #5 & catheter out tmmrw 3/

Afternoon update: healthy friend did not undergo exorcism. A bit dizzy after, rested for 1/2 hour, showered, then we went for a walk. Both resting now. Have decided to stick w my original plan for 6 apheresis trts as I likely won't make this trip again ($$), so keeping my 4/

Catheter friend until after trt #6 on Tuesday. #5 still happening tomorrow. I feel at peace w this decision. ICYMI, @amayoco shared this b interesting paper on #LongCovid & lymphatic drainage massage 5/ ncbi.nlm.nih.gov/pmc/articles/P…

Day 26: up early to watch the sunrise, but clouds on the horizon today. Still feeling ok, catheter & abdomen a bit achy again. I have decided to take this final week to focus on healing, reflect on my time here, and consider what re-entry to my regular life will bring. So I 1/

Won't be updating as much, or maybe at all, until after I get home and get settled. But I will definitely let you all know how I am feeling longer term after I get back. That's an important piece of all of this. Take care all. #LongCovid #HelpApheresis /End

Day #?? (Time has no meaning anymore 😂): I know I'm taking a break, but I wanted to share something bc 1. It's kind of funny & 2. Maybe it will help someone. While my friend from Denmark (who is actually Ukrainian) was here, we had long conversations about life, health, 1/

Illness, wellness, spirituality-- basically covered everything possible. She gave me a lot of advice that was really helpful about moving forward from here. One of the things she told me was every morning to put on some music I like and move. Not necessarily dance, 2/

But move any body part that feels like it needs to move. So, this morning was sunny and I went to the beach. Earbuds in, I cranked up one of my fave artists (Jack Johnson, if anyone is interested), closed my eyes, and had a (very gentle) silent disco. Think less dancing and 3/

More swaying and arm noodling. I got pretty into it and it not only felt good, but also lifted my spirits. I did this for about 20 minutes, eyes closed. When I opened the there were ppl all around looking at me 😂 I think someone was even recording me (so if a video of a 4/

Middle aged woman in a long blue sundress dancing to music no one else can hear shows up on your feed, that was me 😂). Anyway, it was funny but it was also nice to lose myself in some good tunes for a bit. I highly recommend it for #LongCovid /End

Just a quick update on my #LongCovid #HELPapheresis journey. First the facts:
*I was gone Nov 12 - Dec 19
*I had 6 trts total
*1st trt I didn't feel much.
*2nd trt I started to feel "lighter" and more energetic
*Ea subs trt I felt less sick and more human 1/

Here are pics of my progressive filters from trt for comparison (yes I know angle/light is not consistent, was doing the best I cld!) Huge difference in clarity of plasma & visibility of filter structure for trt #6. After cath removal was going to do HBOT but crashed hard for 2/

3 days. Worried I had just done it all for nothing. BUT fast forward to home, and I feel really great. I went to daughter's last bball game yesterday and not only stayed the whole time w out needing to lie down in the car, but also chatted w someone the whole time. IYKYK-huge 3/

I never thought this was be a cure and I still don't. I think it is a reset for now and until the viral reservoir is addressed, my body will again build #microclots. We are living in the moment and soaking up the human-ness that I had lost for two years while we have it. 4/

Next steps will be discuss clopidogrel w my PCP and start back on natto/serra to combat this.
I feel it necessary to add that not everyone responds this positively. I thought I might after extensive research, but it was not a guarantee. This was gamble. I know others 5/

Personally now who did not improve from this trt. We need #ResearchLongCovid on #HELPapheresis in such a bad way. Why does it help some and not others? How do we sustain progress? Currently there is *zero* res on this for #LongCovid. Only anecdotes like mine 6/

Only time will tell where my life is going from here. I'm grateful for the reset, have no idea how long I will feel this way, and wish with everything in me that this would be researched.

I will temper this by saying that I am NOT pre covid well. Not by a long stretch 7/

I still have #POTS and #MECFS but my symptoms for now are milder. My tinnitus is still raging, nausea still present, and I haven't even considered exercise yet. I'm trying v hard to pace. One symptom that did disappear, for which I have zero explanation, is severe neck pain(!)8/

My neck pain was so bad that I was in a brace much of the day, lying down, heating pad on. After the 2nd trt it disappeared and I am at a loss abt that one!
So summary: #HELP apheresis significantly improved my #LongCovid symptoms, but does not have the same affect on all 9/

Ppl w #LongCovid and NO ONE KNOWS WHY BC THERE IS NO RESEARCH. I was lucky that I had no complications but I know others who did. W permission, I will say that a friend I met there developed a DVT and sepsis infection and is still in hospital there 10/

She cannot fly home. She is now alone. So this journey is not without potential for dangerous situations. Ppl w #LongCovid have many unknowns wrt to health situations and an invasive trt halfway around the world carries risk. I was lucky I had none. 11/

I won't say more about her situation as I only asked permission to share that. But know it can come with risk. Happy to answer any questions about my treatment! I know I rlly benefitted from hearing from ppl who had been there while I was researching. /End

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