This is my new normal as a Covid long hauler, 6 months after contracting Covid.
They are discovering that this disease is a VASCULAR one, not a respiratory one, per the news this morning.
If you are also a covid survivor, consider joining the facebook group Survivor Corps for updates on long term health effects, newest findings, and just to share your stories with others going through the same nightmare.
We fell ill with Covid19 in March 2020.
Months later, I am still not 100%- and to add insult to injury, we were exposed AGAIN.
Right now, I am in the middle of the worst panic attack. We’re coughing, I have a sore throat- no fever, but apparently fevers only account for 7 percent (roughly) of symptoms.
Stay safe, everyone.
Category Archives: Pulmonary Embolism
Rebounder Set Up, New Stability Bar, and Cake the Kitten (plus video) and 10% off!
It wasn’t a difficult set up, except for the part where the man boinged himself with a bungee… absolutely LOVE the new rebounder and can’t wait to get it into the RV.
(also, to get it out of the little house. I have no room in here for 2 rebounders)
Cake the kitten was RIDICULOUS about the new one. He was bouncing and dancing all over the thing for a solid 2 hours.
I really LOVE the new stabilizer bar. I thought I ordered one for a larger trampoline, but I was mistaken. Keeping it, though. It’s great to have something to hold onto when one is feeling off balance or dizzy.
I got the bar for my dad’s rebounder originally, but it doesn’t fit the 48″ ones (It only fits the smaller ones). It really improves the experience, even for me. It makes me feel safer when I am wobbly. I suffer from vertigo and weird dizziness leftover from being sick still. My dad has essential tremor and balance issues (thanks, Vietnam War). Having a stability bar is a must for those of us with issues such as these.
The bar has 3 height adjustments, with the highest being comfortable enough for someone about 6′ or more.
I really love this new addition to our rebounder, I will probably order a big one for both dad and me.
I haven’t had time to write the lonnnng (and it will be long) PTSD filled trauma surrounding my covid and pulmonary embolism recovery, due to beginning home schooling the kiddo and other weird snafus (like 3 people in my family, including the kitten, injury their right legs/paws).
I am still offering the 10 percent discount from Leaps and Rebounds for any of these purchases if you would like one of these for yourself.
In this post, you can get 10% off Rebounders from www.leapsandrebounds.com
âď¸Follow their page at https://www.instagram.com/leapsandrebounds/
âď¸use MissMaisie10 at checkout for your discount OR
âď¸go to this link:
https://leapsandrebounds.com/discount/MissMaisie10
Get 10% Rebounders & Accessories from Leapsandrebounds.com!
We are covid survivors- I am also a pulmonary embolism survivor.
I will write more about it in this blog at a later date, but I believe in this company.
The one in the pic was purchased by me, but the company was kind enough to send me a smaller one to try out for the RV with a stability bar and provide me with a discount code for everyone.
â¤ď¸In this post, you can get 10% off Rebounders from www.leapsandrebounds.com
âď¸Follow their page at https://www.instagram.com/leapsandrebounds/
âď¸use MissMaisie10 at checkout for your discount OR go to this link:
âď¸https://leapsandrebounds.com/discount/MissMaisie10
đđđđ
New Year’s Resolutions
Completed an 8 day water fast- back on strict keto and every other day intermittent fasting; quit coffee, because it gives me reflux; started imbibing homemade bone broth regularly; incorporated mini trampoline rebounding into my Fitbit 10k or more steps a day; started Jillian Michael’s Beginner 30 Day Shred.
Still alive, focused on my health… and not very chatty right now.
Still Alive- Still Recovering from Pulmonary Embolisms and Pseudomonas Infection
Been a rough few months. Post PE syndrome is no joke. Glad to still be alive, though.
Found out that the hospital I had my surgery in for the hysterectomy gave me an almost fatal superbug uti (they sent me home with a catheter AND TOLD ME TO REMOVE IT MYSELF)- a pseudomonas infection.
I spent a week at the local cancer center getting antibiotic infusion treatments via IV. Since then, I’ve been much less chipper and so tired.
I don’t trust American hospitals anymore.
I started a cpap machine for sleep apnea 2 days ago, after having a sleep study done last month. I was having moderate apnea.
This is a fantastic article:
Sorry for the short blog post, but super tired!
Really Fantastic Article on Life After Pulmonary Embolisms
having a particularly bad night: chest pains, shortness of breath, sweats, tachycardia.
Recovery from PEs is rough- and scary.
Luckily, tomorrow I see my new cardiologist about a holter monitor for the racing pulse.
This article helped me so much:
https://healdove.com/disease-illness/Recovering-From-A-Pulmonary-Embolism#_=_
Back in Hospital 4 Days Ago- Out Now
this is getting tediously repetitive- found out the other day that my ovaries were about 10 yrs younger than the rest of me or more- and to not expect menopause for another 10 yrs or so, give or take.
Good thing I’ve no more uterus, or I could have been shooting out more babies far into my dotage!
Updates on Last Hospital Visit/Pulmonary Embolisms
at Kalamazoo Hospital- warts and all, no fuckin’ filter.Â
Consolidating everything here:
I had a DaVinci Robotic hysterectomy on 12 July- they kept my ovaries (and doc says I may not go into menopause til near 60, as I apparently have abnormally young bits, yikes)- this surgery cured a lot of pain, but caused even worse. I almost died suddenly from blood clots to both lungs which were directly from the surgery, they surmise.
3 Weeks after my initial diagnosis and my embolisms on both sides are exactly the same as they were on August 8, but have not gotten new ones and they havenât grown- had chest CT at Bronson last night.
Doc believes the first embolism may have occurred on July 27th, as I had an ‘attack’ that I thought was a newfound food allergy- but consistent with PEs.
However, it doesnât sound like theyâve gotten any smaller, eitherâŚ
I need to see a cardiologist at Bronson ASAP and have a Holter monitor done to find out what is going on, but they cannot do that In the ER.
They seem to think that my symptoms are because of this PE and I need to take it easy until the cardiologist fits me with a Holter-Â
I feel very frustrated that I am basically supposed to be bedridden. The doctor said it was more important for me to hydrate than to move around at this point
Hospital cut me loose last night with a long acting beta blocker (metoprolol)- I am only supposed to take a fraction. He wants mr to start with half at bedtime, but Iâve played this bp med game before. I will do a quarter tonight.
I am waiting for the referral to go through with the cardiology department at Bronson in Kalamazoo, MI- which is 45 min from me, but a better hospital than the one around the corner.
Until then, I am basically supposed to act like a vegetable and keep hydrated.
My resting heart rate is higher daily, no matter what I do. This morning I woke up to it being 83 on avg while flat on back. I am power hydrating. My old avg per fitbit was 69-70. It goes up every day now this week. If I stand, it shoots up to 120-130 minimum.
Took over a dozen sticks, an u/s, and 1.5 hours to get a 20 port IV into me so I could have a CT. The head mosquito vascular nurse said I broke her streak. Iâm a horribly terrible poke. LOL. Basically, I am the micropenis of the vein world. That’s a comforting thought.Â
However, probably the nicest hospital experience Iâve had in years. Immediate, prompt care- real eye contact. Immediate info and they didnât hold us hostage for 3 days and keep trying to drug me with hysterical Victorian woman meds.
There you have it.
Still recovering or holding steady
Went to the ER again, this time in Kalamazoo. CT shows that both pulmonary embolisms have not grown, though they’ve not shrunk yet. I am having tachycardia (high heart rate), even if I walk across the room- so I am bedridden a lot, which is not cool.
I used to have to run or workout hard to get to 140 beats per minute- now I can do that walking down two flights of stairs to my kitchen. My resting heart rate is around 81 right now, which is INSANE for me.
I was pretty fit right up til 20 min before my clots (for someone with my genetic and age related crap). I ran, I walked, I was a fitbit freak. I don’t do drugs, I don’t smoke, I rarely drink- but when I do, it is with friends and family- I stopped eating carbs until my surgery. I felt amazing til the hysterectomy… ok, well, I AM a little reclusive by nature. I like just being with my kid and doing stuff quietly. I can’t even do that now.
I was right about the robot trepidation, I guess. They suspect that surgery caused this shite.
I am getting referred to a cardiologist to be put on a Holter monitor- and see a blood specialist about my genetic clotting disorder this week.
I am too stubborn to die. I refuse to leave my little girl. I’ve advocated for patients in the past- it is more difficult to advocate for yourself when you are infirm.
This morning I dreamed of my childhood bestie, Roger. He died about 6 yrs ago, suddenly. Had the same thing the actor John Ritter died from, just fell down and died at not even 40. He’d broken up with his boyfriend some time earlier, but had his room mate living with him at the time, who called the paramedics when he heard it happening.
I dreamed I was in Roger’s old bedroom from when we were teens on Red Arrow Highway in Watervliet. It was empty except for a waterbed and a little dog was hiding under the covers, and I pet it- it was a white small dog, not like the ones he owned that I remember. I had to go in his old closet to get a checkbook and get some of his bills paid- and his old closet was far deeper and larger than it had been. He was nowhere to be found, but I talked to the air and told him his bills were paid, then I saw another old friend (not Rog- and I presume still alive) whom I haven’t seen in over 2 decades- but none of my friends in the house could see him and asked me who the hell I was talking to…
The most comforting thing was seeing my other friend, who I believe is still alive, but lives abroad. It was so real. I put on a brave face to most people and really don’t get into the emotional aspects or fears associated with this crap, but it does scare the shit out of me.
People EXPECT me to be the tough bird, the crutch for them… except for this blog or my other writing outlets, I tend to not let people in. I suspect a lot of folks are like me, IDK.
Life, for me, is stop whining and get the fuck on with it, usually.
I almost died this month, suddenly, from bilateral pulmonary embolisms. I don’t want to die. I REFUSE.
Rog, I love you, but I don’t want to see you anytime soon. Maybe in 40 yrs. XO
My other friend/s. I love you all, too- even the ones I haven’t seen or neglected to reach out to for a million years. Thank you for reading this and I am sorry I have not been updating very often.
Rough morning after 2 weeks of smooth recovery
Been feeling better than anyone could have imagined, with having pulmonary embolisms in both lungs. My lung sounds and functions were clear, my ‘spells’ less so- I felt fantastic… until this morning when I woke abruptly this morning.
I woke up at 6 am, sweating and not able to catch breath. It’s 2 weeks since I was diagnosed with bilateral PEs and I haven’t had a ‘spell’ like this in over a week. I’d been feeling better.
I feel like it burns all the way into the middle of both lungs, hard to catch an inhalation, feel like I have to cough phlegm, but nothing.
My bp is lower than normal 102/80. I woke with tachycardia (fast heart rate) over 120, that went down to the 90s.
I’ve not had spells this bad since the hospital. My pulse ox reads anywhere from 93-98, depending.
I still can’t take a deep breath right now… it’s getting better, but it’s scary nonetheless.
I don’t drink, don’t smoke. I just started getting my steps back up from nil to 7k the last three days. I’m on the ketogenic diet.
When they said recovery is a process with pulmonary embolisms, they were not kidding. I can have relatively normal, excellent days- then BAM! Scary, back to square one.
Some folks in my support group say it takes months to years to recover.
My stubborn self was hoping for WEEKS. I push myself too hard. I am depressed, as much as I can be. Mostly because I don’t like to be idle.
Saw my gynecological oncologist this week and everything in that area is looking great since the hysterectomy. This surgery caused my PEs, btw.
I am too ornery and cantankerous to die. Too much to do… and I have a child to care for.
I refuse to succumb, but if anything happens to me, tell my baby I loved her.
So far, I am told I am lucky to be alive as it is. For this, I am absolutely grateful.
I have so many people I love and have loved. I don’t want to go anywhere.
I want to celebrate being alive. 2018 was rough. I am not the only person in my family to nearly lose their life in a sudden accident this year. We are blessed to be here right now.
