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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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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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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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Hysterectomy in 2 Days

I’m having a panic attack.

The idea of having my lady bits ripped out of me by ROBOTS (DaVinci robots) isn’t sitting too well with me at the moment.

https://www.youtube.com/watch?v=UFb-1XDpYkU

I mean, I know logically that this is routine and it should be ok- but the robot part and the fact that I am going to be spayed like a cat kind of freaks me out.
They will be keeping my ovaries, but removing the fallopian tubes and the uterus due to adenomyosis and fibroids and other things… and checking for cancer.
Pretty standard stuff.

Still, the robots ripping out my female parts- not my kind of sci fi.

The last 3 days of my period- my last period of my life- have been the worst pain I’ve ever experienced. I know this has to go, but omg.

I’m in mourning.

I have not been able to walk since my menses started. My uterus is now swollen to the size of a 4 month pregnancy or more. It’s laying on my spine, retroverted, so the back pain is horrific.

I did a part 1 re the health reasons behind it, but haven’t been able to do the part 2 yet. I tried to put it out of my mind, really.

Booked my hotel in the city where my surgery will be done (an hour away from my home). I have to go have all my fake nails ripped off today prior to surgery, not looking forward to this, either.

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Endometrial Uterine Lining Biopsy NEGATIVE FOR CANCER! Woohoo!

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Endometrial biopsy of my uterine lining came back negative for cancer!

That being said, they still want to go ahead with the hysterectomy, as I have severe adenomyosis- and they still have to actually biopsy the rest of my tubes and uterus as well, once removed.

I am not looking forward to the 2 month recovery time

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The Decline of My Kishkes, or Retroverted Uteruses & Reproductive Health Scares Part I

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I have a tipped/tilted/retroverted uterus and it can be annoying, to put it mildly

WARNING: THIS POST MAY CONTAIN GRAPHIC AND/OR HILARIOUSLY DISGUSTING DESCRIPTIONS OF DOCTOR’S VISITS, BIOPSIES, RETROVERTED UTERINE ISSUES, AND ADENOMYOSIS/CYSTIC OVARY SYMPTOMS. IF YOU CAN’T BEAR TO READ STUFF LIKE THIS- SPOILER ALERT- GO AWAY NOW.

“Pet Peeve #545:

When ALL your specialists and primary care doctor feel your issues are gynecological, yet your male gyno thinks everyone is wrong and refuses to listen to you OR EVEN TEST YOU until you stick a proverbial foot way up his ass”

This blog started out primarily because of my freakish reproductive system (hint, Maisie).

It is only fitting that I update the trials and tribulations of my nearly 50 year old reproductive organs.

Let me preface this by saying, I am not in menopause and my body doesn’t seem to know it is a-coming. My menstrual cycle is consistently 28-30 days.

I also was born with a retroverted/tilted/ass backwards uterus. Such conditions can worsen over time from childbirth or other uterine issues.


According to Wikipedia, it is defined as:

A retroverted uterus (tilted uterus, tipped uterus) is a uterus that is tilted posteriorly. This is in contrast to the slightly “anteverted” uterus that most women have, which is tipped forward toward the bladder, with the anterior end slightly concave.”

“Tilted posteriorly” means tilted towards your ASS, ie, posterior. Mine is particularly tilted waaaay back, which makes basic bodily functions more difficult over time- more gross details to follow later.

Oddly, I started having some very strange symptoms that became progressively worse in the years after Maisie was born. I went to specialist after specialist to no avail. Gastro docs, urologists, nephrologists, rheumatologists, gynecologists, pain specialists who simply wanted to get me hooked on pain pills, which I refused- nobody could figure out what the hell was wrong with me.

I had lower back pains and kidney infections that did not start out as urinary tract infections- and I’ve never really had bladder infections prior to this, though I’ve had kidney stones before. They kept coming back, no antibiotic seemed to help. My doctor sent me to every specialist she could think of. My bowels stopped working regularly. I had to take massive stool softeners and even that didn’t always help. 

Everything, every test came back normal. I was starting to feel like I was losing my mind, but I KNEW something was wrong.

(for my rant on what I pay for my crazy expensive healthcare insurance, go here)

I KNOW my body and I am pretty much a health nut. I live a Ketogenic lifestyle. I rarely drink and never have been much of a drinker. I don’t ‘party’. I love to cook healthy meals. I work out a lot- I am a FitBit freak and try to get at least 10k-20k steps a day, mostly for the endorphins. The few prescriptions meds I must take, for high blood pressure (another genetic pain in the ass) and GERD, I do religiously. I don’t have depression.

I mean, I HAVE to take care of my health. I had a baby at 45.5 and I want to live to see her grow up. There can be NO room for error at this point. My child needs me to be healthy.

In mid-December 2017, my primary care physician ordered an ultrasound of my pelvic region. The results were complex septated cysts in my left ovary, thickening in my uterus, etc. Complex septated cysts are considered a bit more dangerous than regular ones.

My paternal grandmother died of ovarian cancer at my exact age. Her daughters and one son all carry the BRCA1 mutation. 3 out of the 4 girls had BRCA1 breast cancer. My father was fortunate- he was the only child out of 6 to not have the mutation. Unfortunately, even though I am not a carrier, this still increases my own chances of gynecological cancers.

A MRI was recommended as a follow up. Because we couldn’t get the MRI approved by the insurance company, we had to go with a 6 week follow up ultrasound.

On top of this, I take care of my family- and I mean everyone, including extended family. I am the medical POA for many and the patient advocate for the rest.

I spent months in San Diego this year (and the end of 2017) sleeping in a trauma unit with a family member who was in a catastrophic motorcycle accident- and taking care of them once they were discharged. I only came back to Michigan because of my own health issues.

While in Encinitas, CA, I had my follow up ultrasound at Scripps hospital. It showed no change in the cyst size, but my uterus was getting larger, with new polyps and fibroids and thickening of the uterine walls.

Armed with this info, I sent the ultrasound results to my primary doctor in Michigan. She felt it was urgent that I come home and get this checked out, since my ‘fancy’ insurance didn’t work in the state of California and my pain and symptoms were worsening by the day.

We set up an appointment for March with a gynecologist and I forwarded all of the info from CA to his office a month ahead of time.

I planned for fly back home to MI in March for my scheduled appointments and be back in CA to take care of my family member after the appointments, as they still could not care for themselves.

It didn’t work out this way.

Little did I know, there was going to be a fight on my hands just to get my MRI and to be taken seriously, as his staff did not put the 2nd ultrasound in my chart…

(to be continued in part 2 with the discovery of adenomyosis, cancer biopsies and testing, and my journey towards hysterectomy)