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Straight From The Source...update From The Fishbowl


Sunfish
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Well, the good news first, which you already know: I'M HOME :)

I can't even begin to thank you all individually for your good thoughts, well-wishes, prayers, and laughs. (Thanks to Michelle & Emily/DancingLight for keeping you all "in the loop".) As I think Emily mentioned, she left me many long messages when she knew I zonked out with all of your postings; it was great to listen to them...like my own virtual greeting cards of sorts. So....thanks to you all.

And yep...this will probably get a bit long-winded but you all know I'm not the most concise person...and I haven't typed a thing in a week so this time I at least have an excuse! :blink:

I'm still a big wrung out and sore/tender/puffy but overall probably feeling "better" right now than I have in a week as the "ickies" aka staph infection, clots, & whatever other craziness my body was apparently trying to fight off started in on me last Thursday. Initially I felt like my IVs had been laced with benedryl (more than normal), but as some aches & then quite a bit of pain crept in with an ever increasing fever, things were not a pretty sight by saturday. Thus the hospital. And to think I was questioning whether I "really" needed to go at all the entire time; can I blame that lunacy on the fever?? :huh:

Final diagnosis: "septic thromboses" aka blood clots in the subclavian vein (where my line was) that were infected (staph infection) or visa versa. In other words what came first - the infected line or the clots - no one will ever know. But the two likely go together.

I'm on IV antibiotics for a bit more than another week (two weeks total) and have to give myself shots for several more days or until we can get my clotting factor where they want it via oral coumadin. I must say I'm a bit proud of myself on that one....really didn't know if I'd be able to do the poking myself thing as the shots are quite an ouch :) , but three days and I'm practically an old pro :D I'll be on the coumadin for six months which requires pretty constant monitoring but hopefully once we get the levels right it won't be any more than my TPN bloodwork that gets done weekly already.

If I'm honest I'll admit that the weekend was pretty scary. I never feel well and am more than used to my body malfunctioning but I was a sick puppy over the weekend. And that wasn't helped by my initial reaction to the antibiotic in the ER. But thankfully they figured out what all was going on and things are now headed in the right direction. Unfortunately I lost the Broviac but thankfully the new line (PICC) was placed without excitement and the infection hadn't spread throughout my body. Thank God for small (and large) favors.

The removal of the Broviac, on the the other hand, was NOT without excitement. Until the clots were found it was back & forth about whether to remove it or simply flood it with antibiotics. With the clots it had to come out. How this happened was a NIGHTMARE.

PROBLEM # 1.

After we had established that if it wasn't done before 10pm it wouldn't be done until the next day, my dad left for the night. I was then awakened around 1:00am by some surgical residents I'd never seen before....to remove the line then. I questioned them but was still half-asleep and honestly was afriad of what would go in my records if I straight out refused. I'm generally a grand advocate for myself, but the middle of the night in the hospital when I'm not exactly at even my best is not my finest hour.

PROBLEM # 2

The PICC line had just been placed so that arm was sore. The other side of my neck/shoulder/clavicle/arm was very sore & swollen from the infection & clots. For these reasons it was tough to get my shirt off, at which point the resident asked me how attached I was to it; she wanted to cut it off! That's fine for traumas, but not solely b/c she didn't want to wait the few minutes longer &/or give me a helping hand. I did win that battle.

PROBLEM #3

And this is by far the worst. When I asked how the line was to be removed I was told the area would be numbed. Fine by me. I would certainly hope so considering the thing is anchored inside by a cuff, stitches, etc. But the next thing I know I feel a pulling and ripping pain. THEY NEVER GAVE ME THE SHOT(S)! I was crying and making some kind of unpleasant noises of sorts the whole time & they couldn't care less. I asked them about the shot & why they had lied to me & was told that b/c the line wasn't very old they figured it "might not be as anchored in yet." Well...maybe not, but come on! I can deal with pain & I did, but they blatently lied to me less than ten minutes prior and this was inexcusable.

The one redeeming note is that everyone at the hospital bent over backwards the next day to apologize...about every aspect my lived out nightmare. They all acknowledged that it was inexcusable and it was obvious that the "event" had gotten through the chains pf command at the hospital b/c everyone seemed to come out of the woodwork to want to talk to us. So thank goodness we didn't get any beaurocratic mumbo jumbo fed to us.

But moving forward....

The latest....which I can hardly believe myself.....is that I'm headed back into the hospital on Monday afternoon or Tuesday. Not b/c I medically need to be there but b/c they don't have enough nursing hours to give me my IVIG treatments at home! Is this nuts or what?! My mom & I spent three hours on the phone today (sometimes both of us at once) trying to work through the maze and they've tried to find nurses from multiple agencies throughout the city but no luck. So....back to the hospital it is. I am frustrated to say the least. And more than a little bit sick of the hospital. I have to go to a PCP appt Monday morning as a follow-up for this hospital stay & to adjust my coumadin dosing and then we'll figure out the exact admission timing.

So yep, I have to leave my bowl yet again for at least 5 days next week. ggggggggggggrrrrrrrrrrrrrrrrrrr is about all I can say.

:D melissa

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HOLY SMOKE! Aunt Jemimah!Argh.gif

Melissa,

I almost don't even know how to respond to what happened with the PAINFUL removal procedure?!$

I got sick reading that part and had to go read about some other stuff. Can not imagine those slobs pulling a stunt on a young lady in your condition.

Wow....I am glad you are ok now but I woulda been kicking butt and taking names the next day. ATROCIOUS behavior, indeed. I would've had a really difficult time actiing polite and ladyllike....crimeny.

I know you must be tired of people saying they are sorry you have to go through this but it's true. I HATE hearing of this nightmarish situation.

AND now, you have to go back to the hospital.

Well, I wish I could send you some Graeters ice cream to make it all better.

Tie another knot in your rope, scream into your pillow.

I hope you are able to relax a little bit before going back into the medical rat race. It sounds like the rats won last time.

I so appreciate the long update...it had to exhaust you to relive it and type it all out for us.

Take care, Melissa.

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Glad to hear you are home. Sorry to hear you are going back soon for the treatment, as you wear just there. Its to bad theres not enough nurses to come to do the treatments at home.

Well I hope things start going better, and that you can spend more time in your fishbowl, and less time in the "ocean" with all the mean old sharks "or doctor" LOL ( ok this is sounds dumb, but its late, sorry I tired!)

Talk to you later, gald you are home!

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Dear Sunny Sunfish,

Wow! What a horrible ordeal you went through last week. The episode with the removal of your line in the middle of the night was a nightmare for you. Hospital folk seem to do things when it is convenient for them, not when it is better for the patient. I hope you never encounter such a tormentor again. Shame on the resident!!!

What is the difference between a broviac and a med a port? I have a med a port. It is surgically implanted under the skin. It, too, runs the risk of infection and blood clots. So far, it has worked beautifully since it was implanted last December.

Please stay out of harm's way next week while you are in hospital!

You know I am with you all the way!

Lois

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Well that was awful! How inappropriate to wake someone who needs their sleep more than most to remove a line when it was most likely not an emergency to do so. And then to lie to you. I hope those residents are re-educated on the finer points of patient care. What kind of surgeons will they be? Oh, never mind, surgeons are a special breed anyway.

I hope you are feeling better everyday and am sorry to hear that you have to go back to the hosp for your treatment instead of at home where you would be more comfortable.

Lori

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Melissa-

you really deserve a break here-- my goodness. I hope your next visit at the hospital is far less stressful.

Did they file an incident report regarding these residents? My former employer, health care facility, had a system where incident reports were completed. The focus being on how to prevent such things from happening again. They would go for review and discussion- then action. Pt. would be contacted regarding the action that was planned or discussed.

well - rest before you get back there!!!!

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Okay fishy, if those people come at you again, one mean little mouse will chew rather gaping holes in their ankles, you hear me!!!! You tell them they are on notice!!! :rolleyes: Lying is inexcusable.

It's nice that you at least got an apology. I never got as much from the hospital after they tried to kill me with an antibiotic in my IV that I flat out told them not to do b/c I was allergic. Crash cart moments later. Teri was at the hotel and didn't find out until the next day and absolutely flipped. That, and they failed to give me my pain meds for more than 8 hours past time and I was rolling around in my bed crying. The only good thing is that the nurse who gave me the antibiotic eventually was fired--but it was nearly a year later. Makes me wonder who else she must have injured...

Hospitals aren't the safest place to be! I hope you don't have to stay long for your treatment, or maybe some nurses will miraculously appear and let you stay home. I hope so! Nina

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melissa,

i am so very sorry for everything you've been through. i cannot imagine how you must have felt, wish i could do something to make it up to you. i hope you will enjoy your days at home (don't think too much about your next hospital stay: it will ruin your days home). i hope you have enough people around to spoil you like crazy!!!

corina :rolleyes:

oh and nina, i never knew it could be soooo dangerous to be in (an american) hospital. whenever i', in the states i will be alert not be brought in!!!!

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Hi Melissa,

Just wanted to let you know that you continue to be in my thoughts....There really never is a dull moment. :lol:

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I have been following your posts and you really need a break. I really hope you get one soon. I hope they can figure out a way to have your treatments done at home. 5 days in the hospital sound very boring. All our posts will keep you busy!!

hang in there sweetie

Dayna

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okay......QUICK update (for me). i'm not at the hospital for the IVIG b/c i'm too sick to get the IVIG. heck of a way to avoid another admit, eh? saturday night i started spiking fevers up to 103+ and while i get windows of "reprieve" they haven't let up. yep....lots of "do we need to call the doc?" (aka do we need to go back to the hospital) over the weekend. that's what i get for saying i was doing a bit better.

i saw my PCP monday morning (supposed to "just" be hospital follow-up, but obviously now served two purposes) and he's thinking possibly c. difficile (a nasty GI bug) or some other bug that i picked up in the hospital that obviously isn't getting scared off by my current IV vanco. ironically the treatment for c. diff is the same antibiotic but orally rather than IV. i should get test results tomorrow and in the mean time am pumping in extra IV fluids.

in the meantime, i'm definitely laying low. the fevers & chills are knocking me down good and it's frustrating to not know the why behind them. and ironically they can't work on scheduling for the IVIG for next week at home until they get a clearance from the doc that i'm okay enough to get the treatments, which won't happen until i'm fever-free for at least 48hrs or so. so sadly i may end up in the same predicament next week....and i'm even less thrilled about the possibility of a hospital stay considering that's where i probably picked up whatever nasty thing i have now.

okey dokey...that's the latest from the fishbowl.

:blink: melissa

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Mouse to fish... mouse to fish... come in fish... over....

I have a message for you fishy:

GET BETTER!

nina

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Melissa

If it's not one thing, it's another. Very sorry to hear you are doing poorly.

Hope you get this under control sooner rather than later.

You have hit lots of stumbling blocks. :(

THinking of you

Sophia

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Melissa,

I am so amazed by your postive attitiude dispite your struggles. I wish you better health. Do you feel like the IVIG is helping? I started cell cept, and my neuropathy is now improving. I hope the IVIG will do the same for you.

You are in my prayers.

Rhonda

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Melissa,

I am so sorry for all of this you are going through. I'm sending you a big hug. You are in my thoughts, girl- hang in there.

Carmen

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WOW!!!!!!!!!!!!! miss sunnyfish.. you most certainly have alot of crudd on your plate.. I'm sure that you've heard this a billion and 1 times.. now for the billion and 2 times.. but i'm so sorry that you are dealing with all of this.. and i really hope that they get things under control for you soon.. and that you start feeling better dear... hang in there..

oh yeah.. about that resident doc.. what a weennie!!! want me to call my brother??? LOL.... :):( te he....i would seriously think about filing a complaint or something.. that is horrible..

you hang in there dear and i hope that you get to sleep in the comforts of your own fish bowl more then at the "dirty" fishbowl..

big hugs

dizz

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Melissa,

For some reason I didn't see that you'd updated this post until today. I'm so sorry that things have gotten even worse for you :( I'll continue to pray for you and hopefully your fever will go down soon!

Please let us know if there's anything we can do, and if you want to PM me your address, I'd be happy to send you a get well card ;)

Hugs,

Lauren

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Okay, first of all let me just say "WOW" and "GGGGGRRRRRRRRRR". I've gone through similar experiences myself and just don't understand how folks can still be "practicing" (I use the word literally, of course) medicine!!! In a way, I'm glad that you're getting a break, I can't lie. I'm just sorry that it has to be because you are so ill, again.......still, what's the right word here??

Secondly, please remember that I'm new here and I don't know my head from......well, you know, but, why do they give you IVIG treatments? I was getting them to treat the MG, that I don't have---LOL. Does it work for POTS, too? I for sure noticed that I felt loads better once it was all over with. I did get aseptic menangitis from the treatment and it had to be broken down with a few days in the middle so I could recover somewhat.

I'm ill myself, not like you however, but, I do know that just being a little bit sick is just too much right now. I'm getting worked up for VEDS and POTS at the same time and now, I'm sick. PERFECT!! Sometimes, I really wonder why God seems to heap tons of stuff on some of us, and it seems like, nothing on others!!!

Take GOOD care of yourself and get plenty of rest. Don't let them push you around!! Those mean ole' doctors!!! I know that you stand up for yourself, but wouldn't it be nice, if you didn't have to???

(((((((((((((((((HUGS)))))))))))))))))))

Bec

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Rebecca, the IVIG was given to Melissa for suspected mitochondrial disorder-- but it can also be used to treat chronic bacterial infections such as staph (at least I know that some of my kids w/ autism have been treated with IVIG for such things).

Hopefully Melissa will check in again soon--haven't heard from her since early this week (Emily, you here any bubblings from the fishy?). nina

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