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Sunfish
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hi all -

seeing that it's after 2am & i'm just barely keeping my eyes open you're going to get a brief update for the time being. i did want to at least give folks a heads up that i'll be varying degrees of MIA for a bit. after 7 months of not touching my website i have an update ready that i should be able to post there sometime tomorrow from the hospital so for a bit more info feel free to check in there as well (the link is in my signature).

but...the short, no frills update is that my blood cultures continue to be positive, i continue to have varying degrees of fevers almost daily, & while the origin is still thought to be GI-related my port is now definitely contaminated as well. we've tried anything & everything for several months now to get me (and my port) infection-free and my body has been coping with the situation (continued bacteremia/ sepsis as well as related lung issues) better than would be expected but in the end the port is having to come out. at that point we'll hopefully be able to get me free of infection - at least for a peroid of time - while using peripheral lines in the hospital. we'll then - again hopefully - be able to place a new port, something that is of great concern due to the amount of scarring/ occlusion in my veins from numerous central lines over the past several years (the reason we tried so hard to hold onto my current port). so - best case scenario - i'll probably be locked up for 5 days or so, which most of you know would be my record for a short hospital stay, but there are a lot of places where we could run into difficulty so there's no way to really know when i'll be able to escape.

while port removal/ placement generally isn't a huge deal, the very real possibility that the surgeon won't be able to get a new port placed makes things a bit more ominous since i'm dependent on the port for day-to-day survival. and even if we make it over that hurdle, the expectation of all of my doctors is that a clean port may improve some things for some period of time but sooner or later the sepsis will likely rear it's ugly head again since we haven't been able to eliminate the source within my GI tract.

so all in all the situation is WAY more complex, intense, difficult, overwhelming, etc. than the mechanics of this hospital stay. a lot of the issues i'm muddling through are not what most people are willing or able to talk about or even acknowledge. i don't expect everyone here to be able to "get it" or delve into heavy discussions with me but the people in this community have been too much a part of my life over these past years for me not to be open about what is going on with me. to insert my standard disclaimer of sorts (for any newer folk reading or someone stumbling on this in a search down the road) i am NOT anything close the norm in the land of dysautonomia so there is no need to worry about following in my footsteps. no "is that going to happen to me?!" allowed!! :rolleyes: but moving on...

in short, i'm grappling with the fact that i'm slowly dying. there is a LOT of uncertainty when it comes to any sort of expected timeline (though quite honestly based on some friends/ family i've had with cancer i've seen more incorrect predictions than spot on so i suppose the difference is that i know that i don't know?) but whether it's a matter of months or a matter of years my reality is that i'm going to die before my parents, something that's obviously not easy on their side of the coin either. ironically my good days/ hours in recent months have been in some ways better than they had been in some time, something that has been wonderful but can be hard to mesh with the underlying realities of what's going on in my body. not to mention the comments my doing "better" invites, i.e. someone seeing me at church with some regularity (aka 50% or so...in wheelchair & w/ IVs but overall looking good) after not being able to get there for over a year and her getting all excited about how i'm "better" and "on the road to recovery" when within a span of 48 hours i'm having conversations with several of my doctors about issues related to dying (including one of my docs offering to go with me on any trip i'd want to try to take as long as she has 3-4 wks notice domestic/ more if she needs to get a passport...how cool is that?? particularly as i think she's actually serious.) but anyway...

nice "short" update, eh? there's still a lot more on my website (or rather there will be in the next day or so), though it's more in the way of facts/ details & not so much about the deeper stuff, less straight talk about dying at this point, etc. i decided to get the 7 month update task out of the way & keep a more thorough post about the here & now, moving forward, conversations with my doctors, dealing with the reality of dying "sooner than later, but still who knows when", etc separate rather than risking something so huge getting lost. i hadn't really intended on delving into things here on the forum quite so much at the moment either but, well, it's now almost 4 am so my inhibitions are shot, i'm exhausted, & i suppose couldn't figure out how to wrap up my "short update" without giving more of the real scoop since all that's going on with me is so much more than "just" this hospital stay.

so there you have it. thank you to all of you who continue to walk alongside me on my journey. i'll try to update myself or via others re: any excitement during the hospital stay but - compared to those i've had the past year or so (aka emergent ICU admissions) - there's no expectation of anything imminently perilous, though obviously whether or not a new port can be placed is a huge deal moving forward. as always any prayers, good thoughts, crossed fingers, fairy dust, harry potter magic, etc are appreciated. i'd probably prefer you stick with the first two (prayers & good thoughts) but the other stuff sounds cute. :blink: .

and now it's time for my nap...my alarm at 7:30 (for the 9am lock-up, aka admission) is not going to be a pretty picture but eh well.

signing off from the fishbowl,

a very sleepy melissa :rolleyes:

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Guest tearose

Oh dear Melissa, this is such a heavy ordeal. I wish they could just get to the bottom of that sepsis and clear it out for you. I pray the port replacement goes smoothly and that it is a short stay there in the hospital.

Please know how you are loved and appreciated and needed here, on earth, on our forum, in our lives and hearts. You will surely be carried in the arms of angels and God during this whole ordeal as you are already right in this moment. Please do know my prayers, meditations and healing wishes will be streaming with you in mind especially over these next days and weeks. I am asking God to help you know when to fight and when to rest and I do believe in miracles so I will visualize you with a miracle. Remember dear melissa, God's time is not like our time...all things unfold as they should. Give yourself every opportunity for joy, rejuvenation and healing. Let others give to you. If there is anything I can do...just say so.

Besides tinkerbell dust, I want to give you three words. Please meditate on one as you wish. The words are Faith, Hope and Love.

You will learn so much over these next days and weeks and I look forward to hearing and learning from you. This current challenge will bring you much clarity and wisdom and you will help many others with what you share when you return. Please do come back as soon as you can.

With much love and continuos prayers,

tearose

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Melissa,

I don't know what to say as I wipe tears from eyes. My heart goes out to you and I visualize along with Tearose your recovery. You write with such strength and courage it is amazing.

I pray this hospital visit is a turning point on the upside of getting the sepsis under control. Hugs to you!!!!!!

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Take in the love offered by your Drs. , nurses, family , friends and God.

His perfect love casts out fear. Which is not to say that you should not feel fear- when fears mounts, love will also.

I'm sure of that. And let each day increase your awareness of the love surrounding you so that each day becomes a

great and joy filled gift.

The grace of God will strengthen you, in the inner man. I happen to know.

Thanks for the post, I appreciate your honesty.

Sending my love.

XX00

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Melissa,

Our prayers are with you. You have a special place in all of our hearts.

The truth is, we're all dying. Whether it comes a month from now or 100 years, we're all on the same path. My hope for you (and for us all!) is that we have plenty of love to get us to the end of our journey here on earth, whenever that may be.

You are loved. Always remember that.

Amy

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Dear Melissa,

Thank you for sharing openly and honestly about what is going on. I will be thinking of you and praying for you even more in the next few days as they remove the port and try placing a new one.

I wish I were in Ohio right now so that I could come visit you. For now I'll have to just keep you in my thoughts and prayers and send plenty of cards.

That is really cool that your doctor offered to go with you on a trip if you want to travel! Even if you decide to not take her up on it, that's a terriffic offer. Your doc must think the world of you. I know I do. :rolleyes:

Lots of love,

Rachel

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Melissa,

There is little I can say that can comfort you right now. I just want you to know, Melissa, that you have been an angel on earth to many, many people- especially, on this website. Please feel the prayers and positive thoughts that will be sent your way-

With much love,

Carmen

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At times like this...I often want to say something comforting and profound...but you know, sometimes no matter how much people say they love you or are praying for you, it does not help what ever might be going on between your ears and in your head.

I have not been in contact with many here anymore so had no idea what was going on behind the scenes with you Melissa. I am very saddened to hear of this latest journey but APPRECIATE the guts and honesty in your post.

I promise, no cheerleading from me. Just know I am thinking of you, sending thoughts and prayers to you and those around you. And knowing you love cats, my little black and white just coughed up a hairball so I am sending that to you (In spirit only of course! Don't look for it in the mail, nor a photo in email, LOL)

But my cat has empathy for how your stomach must be feeling even though he can't read. Course there were those unexplained charges on my credit card a few months back, but I digress. . ..

I realize, only cat mom's will get that comment but I am leaving it in anyway.

I will check out your website in a couple of days. I appreciate your humor and spirit amidst the dark limbo land you have gone through the last couple of years.

xoxo

Hugs and purrs

Soph

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dear Melissa.. your in my thoughts and prayers.. always sweetie! you have been such an inspiration... courageous and very brave...

love and hugs with you always

linda :rolleyes::rolleyes::blink::):wub:

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Dear Melissa,

I wish I could say something that wouldn't feel like empty "get well" wishes. I really hope you can get a change of luck soon--no matter how unexpected. You mean and give so much to folks on this list. I'm not a religious person, (though often wish I could be), but please know I'm thinking of and hoping for you.

Michele

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i'm too exhausted at the moment to write the response that the many thoughtful replies deserve, but for the time being, THANK YOU.

today was largely discussions with the various docs involved at the moment (infectious disease, vascular surgery, cardio, anesthesia) and dealing with other logistics but things are on the docket for tomorrow. the only mini-excitements (emphasis on mini) were my continued hypertension and a rash on my back/ neck that i didn't even know i had until i was getting the once over from my admitting doc (infectious disease). though i've had spikes for very short periods of time on rare occasion i've never had sustained hypertension. the numbers are pretty high and the pulse pressure often REALLY wide so it's quite strange and the docs have different thoughts/ feelings regarding what if anything to do about it. it's actually brought some improvement symptom-wise (i.e. sitting time) so my PCP thinks i should enjoy that as complications from high BP are the least of my concerns. my ID doc is a bit more concerned though in terms of the immediate stroke risk yet is scared to medicate it b/c of the likelihood of it swinging the other way. he's "sitting on it" for now while to run kidney tests just to make sure that some of the IV abx haven't caused problems there (not likely b/c my urine output/ color is fine). the rash is likely related to either one of my abx or the infection itself so that's just something to watch as well. it's not uncomfortable in any way and at this point we can't take any abx out of rotation unless a reaction is life-threatening.

i have a transesophageal echo of my heart scheduled for 9am (to make sure the continued sepsis hasn't taken up residence in a valve...not probable based on how "well" i am but has to be done). it's not the most pleasant test (think ultrasound wand being stuck down your throat) but certainly not the worst either! i'm then scheduled for the OR late morning to get the port out we've already switched to peripheral IVs. so tomorrow will be fairly full after which it will largely become a waiting game as the surgeons won't even consider taking me back in the OR until we have multiple clean blood cultures. we're going to try for sedation & local anesthetics rather than general for the port removal but between that & the bit of sedation for the echo i doubt i'll be online at all tomorrow. i'll try to check in myself or with someone else to post by the weekend but no worrying allowed if i'm delinquent in doing so :rolleyes: .

g'night from hospital land,

:rolleyes: melissa

p.s. i did get my website update posted for those interested, though it's largely repetitive for those who read my ramblings here.

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Ok, I wished I'd known you were gonna be back on tonight, would've posted these pics earlier...I figured you might want some photos to distract you...here are a couple I took.

A squirrel dashing through the snow and a White Breasted Nuthatch outside my kitchen window . :)

CrittersPractice2008053.jpg

January2008Squirrelsandbirds095.jpg

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Sunfish, fivehearts.gif

As always, my thoughts and prayers go out to you. I don't know how you ever got to this point, and I think of you often. It boggles my mind where this sepsis could be coming from, and I hope that your docs find the source, and get rid of it for good. I don't know what to say, other then keep hanging in there the best you can under the circumstances.

Good luck tomorrow, and I'm sending many hugs your way.

Take Care Dear,

Maxine :0)

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Melissa,

Bravo to you for being truthful about death and dying on the website. No one, and I mean NO ONE should have to go through this alone. All too often though, people do. I admire that you posted the truth, even if not the whole story...you shared some of it. I have not been travelling this journey with you as much as I would like, and for that I feel terribly.

In the humor department: 1. You really expect us/me not to worry if I/we don't hear anything from you? 2. Not one of those stupid things down your throat again. Grrrrrr....I hope you are not unable to talk again! And in so much pain afterwards like last time. 3. You sure like early morning tests (not)...tomorrow we leave at 7 am for my urodynamic study, so I'm very excited about that (haha). 4. Who knows what else struck my funny bone but well, except the fact that you stayed up until 4 am trying to get stuff done before going l'hopital.

I am not going to give you any sugar-coated answers or whatever it's called. I have and continue to know that the dying process and dying are on your mind every day and that every day you are alive is one day you thought might never come a year ago.

You are cherished here on earth. You are a blessing to us all. But I also know that weariness and fatigue are overwhelming in this process. And we must be prepared in some way to let you go.

I need to get to bed myself for this appt I have!!!!!

But your post 'required attention'....anyways, shoot, I forget what I was gonna say.

Oh, I am looking forward to the 7 month tome on your website.

Lots of love, Em

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Melissa,

I don't know what to say. You are in our thoughts and prayers daily. We wanted to stop by your house when we saw Grubb in December but our appt. was too late in the day. I'm hoping when we come that way again in August we'll find you at home, in your comfy bed with your kitties!

We're praying everything goes ok with your port removal and insertion of a new one!

We love you Melissa, PLEASE be well and get better.

Patti and Chrissy

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Melissa

Sent you an email but know you are overwhelmed. And not sure if you have dial up or DSL in the hospital so posting this photo here.

Thinking of you and sending thoughts, prayers and purrs.

January2008Squirrelsandbirds030.jpg

Just wondering what's up with your day or so asks the squirrel.

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Well Missy, we are in a similar boat, but I am old and you still very young. Although any normal healthy 53 year old would say WHUTT???? OLD?????????? But I digress.

This isn't the way it's supposed to happen, children leaving before their parents. Ask any parent, or any ill child, for that matter. But no one ever said life is fair, or that we are supposed to understand everything. I think most of the time, I don't understand anything any more.

I think acceptance is easier on the person dealing directly with the health issues, than on the ones having to stand by and watch helplessly. And feel helpless. So hard to make us hang on and so impossible to let us go.

No matter how much longer your journey is, you are on a swell of love that also surpasses all understanding. As a mom, my heart breaks for your parents, as an ill person who was told the last time she saw her doctor, it's just a matter of time and not much, I feel a bit like you I think. Maybe not, but I imagine so.

You know how I feel, about so many things, and you are such a special little fish, no matter where you are, and a special light to guide us all.

No matter what the future holds, know many prayers and thoughts are winging their way to God's ears. His answers aren't always what we want to hear, but they are never wrong....love you missy girl...morgan

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Melissa,

Thanks for taking the time and energy to keep us up to date. I hope that your hospital stay goes as smoothly and comfortably as possible. I too am at a loss for words, so I'll just say that I'm sending you lots of good thoughts and some Harry Potter dust for good measure... :)

-Rita

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