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Updates on Last Hospital Visit/Pulmonary Embolisms

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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.

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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.

 

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Bilateral Pulmonary Embolisms (blood clots in lungs)- in pain and in hospital, but still alive, so far

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.

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When I am coherent again, I have to talk about the body shaming going on STILL in 21st century reproductive healthcare

When I am coherent enough, I am going to blog some super TMI issues re women’s health post hysterectomy.
 
I am really shocked and alarmed by the ignorance of the ‘counselors’ at my oncologist’s. When describing symptoms, after having to google a lot of things on the wonderful site Hyster Sisters, I had to refer the damned PA to the site.
 
Every time I mentioned something, her response was “I never heard of that”. I felt body shamed. I had to tell her to go to the web boards and google it herself, so she would not have to use those words again with someone else- someone perhaps a bit more trusting of her doctors and less able to do their own research.
 
Same thing happened in Borgess after I couldn’t urinate when the catheter was removed. I had a male AND female nurse with me and I said:
 
“This is a bit TMI, but the only thing I can liken it to- and I’ve never had any issues peeing after previous abdominal surgeries- is when a person has an orgasm and cannot pee after from the swelling”
 
Well, shit. The female nurse turned BEET RED and I was left with the male nurse, who was patting my hand and commiserating with me. The female never came back, btw.
 
WHY are women in the 21st century STILL too scared to talk about their bodies?! WHY is it taboo to mention things to your own health care providers?!
 
Eff this shit. There needs to be a change.
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Current Mood: “They’re Coming To Take Me Away- Haha!” and Solar Eclipses and Surgery and Mr Roboto…

I am packing now for the hotel. Tomorrow is surgery. I’m dragging my feet.

I am scared to death.

Tomorrow will be a solar eclipse in Cancer, incidentally, my 12th house.

Yikes.

Also, an ode to the Da Vinci robot that will be eviscerating me:

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Mourning the impending death of my uterus

 

Not only am I creepily naked and sobbing in the above photos, I am also disgustingly smearing my lipstick, so that it symbolizes the last period I will ever have in my life.

A lot of women hate their periods. I really didn’t until the periods became unbearable. Going into the crone phase, even if it is partial, scares the shit out of me.

Pretty emo for someone of a half-century, I will admit. It’s my crotch party and I’ll cry if I want to…

While my first inclination, as always, is to make snarky jokes about the robots coming for my lady parts tomorrow- I can’t stop crying.

Words fail me.

The fact that I’m having essential organs- parts that are meaningless and useless now- that somehow DEFINED THIS MEAT SUIT for me- removed permanently really is messing with my brain right now.

If I leaned more towards the esoteric, I could just say this is all illusory… this body, this gender, this glove we wear.

I can’t fucking do it. I am grieving, mourning- an anxiety ridden mess.

All the worst case scenarios run through my head:

What if I die on the table?  What if I am that small percentage that has cancer and it causes it to spread?

https://www.usatoday.com/story/news/nation/2014/02/18/hysterectomy-laparoscopic-morcellation-amy-reed/5347093/

Luckily, now very few hospitals combine DaVinci robotic surgery with morcellation:

https://www.hystersisters.com/vb2/showthread.php?t=588404

The entire thing is usually pulled out of the vagina, presumably after the robotic bits sever the organs from their places.

Still, fucking scary.

My friends and family who have gone through this say it’s a piece of cake- I will no longer be in constant pain, I will love it, etc.

As a consolation prize, they will take my fallopian tubes and keep my ovaries- as long as I agree to ultrasounds every 6 months to monitor the cysts. This means I can go into eventual natural menopause and not instant menopause, as I have Factor V Leiden and can never use hormone replacement.

Also, what makes us female? Is it biological, is it physical, is it a dangly bit of spongy flesh in our innards- is it a hardwiring of of hypothalamus? Is it a spiritual choice made prior to incarnating?

WTF IS it?! Do I become some gender fluid, non-pronoun using being after this?

I don’t know why I am so hysterical right now- I just know that I am.

I know I won’t cease to be ME, who or whatever that may be (unless I die, of course).

I surely didn’t freak out like this when they took my gallbladder almost 2 decades ago.

I’m just scared, I guess. Scared shitless.

My stomach is fat, like a woman 4-5 months pregnant- the adenomyosis has me swollen like a tick on a dog.

I feel miserable. This procedure is supposed to make it all better.

I hope it does.

Losing pieces of ourselves, I wonder if zombies feel the same way, if they were real and could think.

“Oh, shit, my whole crotch just fell out… need more brains…”

Yeah, I need more brains.