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.
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!
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#_=_
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!
at Kalamazoo Hospital- warts and all, no fuckin’ filter.
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 haven’t 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 doesn’t sound like they’ve gotten any smaller, either…
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-
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 I’ve 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. I’m a horribly terrible poke. LOL. Basically, I am the micropenis of the vein world. That’s a comforting thought.
However, probably the nicest hospital experience I’ve had in years. Immediate, prompt care- real eye contact. Immediate info and they didn’t hold us hostage for 3 days and keep trying to drug me with hysterical Victorian woman meds.
There you have it.
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.
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.
I haven’t been updating my hysterectomy saga, as I’ve been recuperating- or trying to.
Almost died this week, and am still in hospital. I have Factor V Leiden, a genetic condition that makes me prone to blood clots- and they formed after my surgery.
More:
I am in shock.
Dr came in, they found two blood clots, on either side of my lungs. One had already burst into many bits- or ‘fillings’-I am being put on Eliquis to dissolve them and must be on this med for at least 3 months… then I see the hematologist again after.
It feels like pneumonia or bronchitis with a bloody copper taste in my mouth- stabbing pains, numbness, shortness of breath, and chest pains.
They are likely a result of my surgery and Factor V Leiden.
I am very fortunate, as they somehow bypassed my heart and didn’t kill me instantly. I had been having chest pains and difficulty breathing everyone at first presumed was anxiety.
They are keeping me at least another day or two for a heart study, to make sure I don’t have a hole in my heart.
(Update: heart is great, no holes)
MRI of brain is clear of stroke, thank goodness. My headache is still crazy bad, so they are going to give me toradal once and put me back on my usual bp meds.
I KNEW something was wrong- when they say ‘feelings of doom’, it is real. I was worried I wouldn’t be leaving here at one point today. My chest hurt so badly. I try joking things away, but this is still a bit of a shock to me.
As of Aug. 9, still in hospital. I just had another chest xray, pain comes and goes and I sometimes feel like I am suffocating. Doc says this is definitely from my surgery. Even on lovenox injections, these can still form. SO scary.
FYI, I am not wanting to die.
