Living with Gastroparesis

I’ve been putting this video together for awhile now. It isn’t so much of an awareness video, as all the others have been; it is more of a “documentary” video. I made it to help those that I meet, to give them an understanding of my whole story; not just the small time-frame or situation they may find me in. I had some issues getting it to show up as a public video, so I re-uploaded it and it seems to be working now. Thanks to everyone for inspiration!

I hope everyone is having a good tummy night and that we get to start out the week feeling better than most.

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Well, looks like you guys are stuck with me for awhile yet. Suddenly and unexpectedly on Monday morning, I went into septic shock shortly after entering the ER for simply feeling “off.” I know my body. I know when something is or will be wrong. And sure as rain, it happened. I ended up with an admit to the ER with a temp of 101.8. No idea I had a temp. But from there it went from 0 to 100 in a matter of minutes. My BP tanked to 70/30, my temp skyrocketed to 104.8 with a heart rate of 170. My heart was beating so fast to keep up my failing blood pressure without the circulating blood required. I was shaking out of control, so much it hurt every part of my body. The ER worked ALL day, literally, all day, to get me stable enough to get me up to my room in the ICU. They even moved my ER room to one right next to the nurses’s station because my condition was so unstable and unknown.

No one thought I was going to be leaving the ER that day. Family was being called, special doctors were talking to me about life support and other life saving measures. I found out that none of my veins are usable anymore and for the first time, requiring ultrasound to find a vein usable as a PIV (at the time they didn’t know if my port was the culprit). It was the first time I also required a blood transfusion. That all coupled with massive amounts of fluid (They weighed me and I gained 15 pounds…I don’t eat…of just fluid), I was able to slowly over about 36 hours, get my blood pressure above 90. Only then would they allow pain medication. I was not happy with either of those things. So for the first few days in ICU, I was not pain-free.

For the first time, out of all close calls, I was scared. I wasn’t prepared (no one is but there are things you can do), I was alone and I didn’t know what was happening or how it even got to that point. I was just released not a few weeks ago from surgery in-patient for 7 days. But the ER team kept me focused even when I totally freaked out on them. I couldn’t be more grateful to the ER nurse assigned to my room for sticking with me and getting me through the roughest part of the whole “experience.” She knows who she is – seriously, thank you. Anyway, I was burning up so bad that the leads monitoring my heart, oxygen levels and blood pressure, didn’t stick. They had to re-enforce them with tape, tape and more tape. They kept me comfortable, listened and explained everything. They did all the testing necessary and after the results from the CT scans of basically my whole body, came in – I was moved up to ICU.

I stayed in ICU for only a few days. I had some wonderful and helpful visitors from my church. The turn around I made amazed even the physicians and staff who were working with me. I want to attribute that to faith. Faith I had in my doctors, staff, friends, church members and anyone else who kept me in their thoughts under whatever practice they use. I shouldn’t have made it, and it shouldn’t have gone from near death to walking around within days and a discharge in 4. It was the worst I’ve been but the fastest I’ve gotten through it.

For those wondering: it turned out to be intestinal bacteria (normally found there, good bacteria) that somehow hitched a ride out of my intestine and into my blood. It happened the same way last time so now I know, no matter what I do to keep things sterile, clean and safe, I can’t prevent these random attacks. Coming to terms with that has helped me relax a bit and accept it. Some things happen, and sometimes, there isn’t anything you could have done to prevent it.

If you knew this was happening via my personal page and sent messages of hope and healing, I thank you. I read them all but at the time was too sick to respond. This won’t be my first close call or my last, but for now – I’m feeling much better. Hope everything is going well for you all, and that you are having happier tummy days.

Finally out of the ER and up in ICU – my usual room, as you can see. For those wondering, the little monitor to the left of the TV is for continual monitoring throughout all Swedish systems and also used for conferences.

Obligatory balloons from my husband

Back on the floor, out of ICU!

Home!

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Going to do a quick update and sort of list out things that have changed since I last updated and/or am too lazy to scroll through to find the other updates Oct: Ileostomy (complete), January, February, April I was septic with a mixture of line and blood infections (one from a portacath placement of a contaminated port, a UTI and pneumonia because “I’m special…” or that’s what my doctors say). March I was inpatient for another issue. February and May I had port replacement surgeries. April I spent the month trying to heal the open wound the contaminated port left me with, because it was too risky to close it all the way. And why is it that I always get questioned (no really, someone asked this – “did you recently drink something warm or scratch at your incision?” at the ER when I came in from that surgery in which the contaminated port was placed… *face palm* It wasn’t even accessed yet – that’s how old that port was…) about ridiculously high temperatures (no higher than those our doctors tell us to go in for, when we have central lines), tachycardia and dehydration (and hello pain?). I made it through most of the summer without an admission, minus weekly iron infusions that we now have figured aren’t working, not because there is a lack of iron but a lack of blood product from my bones. Then there was August. Just shy of fall… Bacteria from my large intestine decided to hitch a ride into my blood stream causing another case of sepsis with this one being just that much worse than the previous. Every time I make it to the hospital via ambulance from my ER, my hospitalist (who I have a relationship with now since that whole near death thing of ’11) always comments, “you know, if you didn’t come in at the time you did, you wouldn’t be here…” Nooot something you tell a sick person when they are still trying to get OUT of the hospital. Save those gems for story time later.

It was during that admission I had my gastric neurostimulator removed. I questioned myself about whether or not to let the public know about that last part. I am still a major supporter of the device and think that above all else, it is by far one of the best things to try anyway. But after a few years with mine, it had to be replaced once (the battery – very superficial, never overnight admit) and then I lost so much weight from one of the previous septic attacks, I was struggling to hold what weight I still had, making the pacer stick out like a sore thumb. While still septic, I left them no choice but to remove the battery so as to not give my body another source of infection. They would not be able to go in and get the leads until I was well enough. Well, I apparently was “well enough” on the 2nd of October. It is during that operation where they removed the leads (the actual difficult part of placement/removal/replacement of that neurostimulator system) by of course opening my abdomen and then they also did a pyloroplasty. That just means they went into my pylorus and made that hole bigger in hopes that things wouldn’t get so stuck in my stomach and drain a little better via gravity. It was already shown on an EGD earlier this year that I now have 0 motility. That’s 0, 0% or complete lack of stomach motility. So, my GI says, no more need to test that any further. Guess that’s a good thing about it! One less test to worry about!

In any case, I’m home now. Was discharged (too early imo) Tuesday and while I continue to battle pain (abdominal surgeries are the worst because there really isn’t anything you CAN do without somehow involving the muscles in your abdomen. The same muscles they either pulled apart, sliced through or expanded make sitting up, laying down, moving, breathing, oh my gosh hiccuping!, or otherwise doing ANYTHING without an enormous amount of pain. No problem. Even with all of our fantastic malnutrition issues, we still manage to heal, even if it is over 2x longer than anyone else.

New things for me – nothing much but working on trying to update some pages (and also create them, don’t hate me for being behind!) and work on and finish the new video. It isn’t like the others. It isn’t really meant for awareness. I think I nailed that one pretty good in like v5 or something. This one is meant to be to those who do know me to some extent in the present or for some period or chunk of my life. I made it to show all of me, my life, the things they don’t see when they see me in the hospital, an office visit or even my friends who don’t know everything. Needless to say, it is quite an ambitious endeavor but I will kick it around until it is done or I am bored.

Thank you for all your prayers, words of encouragement and messages even when sometimes, I might not tell you something is wrong. I read them all, even if I don’t always respond. The situation doesn’t always allow me to.

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