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Long Time No See


Sunfish
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Well, where to even start? Yikes. I guarantee this is going to be a long one but can?t I have special permission since I haven?t posted a word in almost two months?? pretty please?? i even had to look twice for the "new topic" button and it didn't move in the upgrade!

I truly cannot believe it?s been almost two months now since I last posted, and that for most of that time I was in the hospital. And to think I used to think a two week hospital stay was long. It is, but five and a half weeks is WAY too long. But I digress. The past several months have been rather surreal, but more about that in a bit.

--

THANK YOU

First and foremost, THANK YOU ALL for your kindnesses, love, & support by way of posts, messages, cards, flowers, visits, prayers and more. After a bit of time hardly a day went by without the hospital volunteers and/or my mom having mail for me and a good deal of it was from DINET folks. It was so great to be surrounded by greetings from around the country and even the world in my hospital rooms, and a number of you are quite talented in the homemade card department! I just wish that I'd had my parents bring my camera to take some pictures to show you all how full of love my room(s) were, but I suppose it's understandable that I didn't think of it at the time :o .

I?ve just now gotten caught up on all of the postings to me on the site while I was cooped up (emily did read most of them on my voicemail, but I had to see the great graphics and with all the meds I was on I didn?t remember them anyway so it was like reading/hearing the posts again for the first time too :o ). I?m not going to try for individual thank yous at this point as the post would be outrageously long; it will be long enough as is (I have two months to make up for!) and I?m certain I?d still leave someone out, but know that there are abundant heartfelt thanks and that everything was and is so very much appreciated.

another special thanks to those who kept people updated, even when i was too sick or drugged to remember giving you the updates :D

and yet one more great big thank you to nina & michelle for holding down the fort during all of my hiatuses, as well as to the new volunteer readers whose help is MUCH appreciated.

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SUMMARY OF THE RECENT SAGA

I know that most of you were following the evolving saga as it took place, but the very condensed version is as follows. In early December I was hospitalized with sepsis for 11 days. At the time it was thought to be related to my central line, but when I the chills & high fevers started again two weeks after stopping the antibiotics the situation unfolded differently and shed more light on unanswered questions from the early December stay.

After a bit of an initial wait, my blood cultures started growing various bacteria and fungi left and right and it was determined that the source was not my central line but rather my small intestines. The most likely scenario was that ? because of the dysmotility and the inability to use my small intestines ? a bacterial and fungal overgrowth developed and was getting absorbed into my bloodstream.

Initially the biggest concern was treating the infections and the accompanying havoc they had wrecked in order to get me stable. This took a bit longer than was good for anyone?s sanity, but after lots of antibiotics & antifungals, a few blood transfusions, oxygen, loads of prayers and perhaps a bit of luck it did happen. In the midst of things there were several days in ICU, a wide variety of largely unpleasant tests and procedures that I?ll spare you all the details of, and endless quantities of various meds, warming blankets, and cool cloths & ice to try to keep me as comfortable as possible. But once I was stable and was able to relish getting various tubes and wires disconnected it was on to the task of tackling how to keep the same thing from happening again.

There was a lot of additional craziness in terms of hospital politics, GI docs that wouldn?t or couldn?t see me, possible transfers to Michigan or Cleveland that never transpired, etc, but what was eventually agreed upon ? knowing that it was a bit of a gamble and a long shot ? was to try an NJ (nasojejunal) feeding tube in order to see if my small intestines could tolerate even a miniscule amount of feeding. The idea was/is that ? if it worked ? doing so could help to restore the proper balance of bacteria & fungi. It realistically couldn?t hurt and it might help.

I was able to tolerate a small amount so we stopped the antibiotics & antifungals & I then had a PEG/J tube placed at MUO (a different hospital where I was transferred via ambulance?enter long story about hospital politics and lack of GI doctor at Toledo Hospital). This tube is more permanent and can be used both for intestinal (jejunal) feedings as well as venting/draining from the stomach. A wider tube is inserted directly through the abdomen into the stomach (the G portion); a narrower but longer tube is then inserted through the first tube all the way through the stomach into the second portion of the small intestines and secured there with clips (the J portion). This procedure was more painful than anticipated which made the discharge home a bit more challenging but we made it through and continue to be plugging along.

An added bonus of the tube placement is that by now administering all of my oral meds directly into the J-tube they are more effective, something I?m hugely thankful for. Several of my doctors and I had been question how effective any of my oral medications could be given my GI issues for some time now but we hadn?t really known how to proceed with the concern. Evidently the question has now been answered. Though it wasn?t the initial purpose of the tube placement, it?s been a huge blessing to have my meds kick in a bit more; in all honesty I probably wouldn?t be posting right now if that wasn?t the case.

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WHERE THINGS STAND NOW

Obviously things are light-years better now than when I?ve been in the midst of active sepsis. For that I?m very thankful. The better efficacy of my medications is also quite notable and has allowed for some ?little? victories that truly feel huge in the midst of the past few months, i.e. I was able to take a seated/ legs elevated shower last week for the first time since November. That was HUGE and I started crying in the shower b/c I was so overwhelmed with joy. I?m also able to ? at times ? get to the regular bathroom to brush my teeth and or use the bathroom ? rather than always brushing my teeth from bed and using the commode in my room. I?m thankful that I can sit up long enough in bed to measure out my medications, set up my IV infusions, and do the other care for my central line and PEG/J that is required and takes up large amounts of time.

But ? and this is a huge but ? we?re (my family and myself) are still in a pretty precarious situation. Despite popular belief, being home from the hospital does not mean I'm "out of the woods" per se or that things are "all better". We have a bag packed for the hospital, realistically knowing it could happen at any time. We have ads out for caregivers because my family simply can?t do it all. The intestinal feedings are hopefully the solution (tolerating only 10 ml/hr with breaks for meds so obviously not replacing my IV nutrition) only time will tell. And ? not based on unfounded fears but rather on things doctors I really trust have said to me ? I know that there are life and death issues at the forefront that are simply my reality. I?m spending some of my time trying to ?get my affairs in order? not just out of a general sense of responsibility but because there have been two times since early December when I?ve desperately wished I had already done so.

I?m not losing sleep over the situation but ? despite many years of illness ? I never thought I?d truly be facing issues of life and death in my twenties. It?s not an easy thing to talk about as most people simply don?t want to acknowledge the issue or face the possibility. I debated posting it so blatantly here b/c it?s not the norm for people on the site so I don?t want to scare new folks nor do I expect most to ?get it? per se. But at the same time I want to be honest and that wins out in my decision to be upfront. I?ve not been naive to the reality that anything can happen to anyone at any time, illness or no illness, but it?s different knowing that it?s more on the forefront to the point that doctors even acknowledge the issue. And a part of me yearns for a venue to talk about those sorts of issues too, not only for support but for the discussion that can happen when others are truly in similar situations.

So?the bottom line is that I?m encouraged in and thankful for some of the small victories that have occurred but it?s still a pretty tough situation that is constantly evolving and ? in some way or another ? will continue to do so. I?m thankful for all of my family & friends ? including the DINET gang ? as well as my relationship with God, and only wish I had the physical ability to give back as much as so many have given to me. I?m NOT without hope but ? as I think I posted in some long ramblings over the summer ? reality plays a role too which has to be acknowledged. For me, embracing reality ? however difficult at times ? is the healthiest way to move forward.

I?m glad to be back and do so wish that I could magically meet so many of you who have reached out to me in so many ways to brighten my days at times when I?ve needed it most.

love & smiles & sunshine from the fishbowl,

B) melissa

p.s. I?ll be updating my website within the next week or so too so for a different spin on things feel free to check that at too (a bit less medical perhaps and a bit more story telling of some extra-special hospital visitors & the like perhaps?)

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Sweet Sweet Melissa, so good to see you posting! I'm glad you are home, as it typically is where most of us feel our best emotionally.

As far as your honesty, you know how I feel. We could get smashed by a truck going across the street, but that's still a different reality than you are facing. I do think it's a discussion that should be allowed here.

Most do not have the life threatening things you have going on (although sometimes, it sure feels that way!) However, some of us are on a very progressive course with a good understanding of that course, and it is necessary to be able to discuss our fears, doubts, and sometimes relief that comes with it.

I am hoping that everyone has at least a living will, no matter how healthy or unhealthy you may be. This takes a boat load of guilt and worry off family, if anything happens to us. healthy or not.

As far as your tube, I do hope it does help, even though a considerable pain in the patoot. And nice to know your meds are finally going somewhere! :D

Anyway, welcome back, hope to see more of you, you are well loved my little chick! mamamorgan

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Melissa :D:o:o

I am so happy to read a post from you!!! B)

Welcome to the forum, my friend. You see, faith is an important clue...

Take your time to rest and to fully recover.

When the storm is over, the sun shines.

Wonderful news to hearing from you.

Take care,

:)

Love,

Tessa

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Melissa,so happy to see your post and to know, you are feeling just a little better. Please continue taking care and getting better everyday.My thoughts and prayers are with you. Sincerely Pat

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Melissa, it's so good to see your post! I, like many on the forum, have been so worried about you!

I'm glad you've had some improvements, but so terribly sorry you're continuing to have to deal with life and death issues on a daily basis. It's not fair, and I wish there was anything I could do to lighten your heavy load.

You're still in my thoughts and prayers daily, and of course, we're all rooting for you and are always eager to hear how you're doing. Hopefully the next few weeks will bring more stability to your situation and give you a little peace of mind.

(((BIG HUGS)))

Lauren

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Dear Sweet Sunfish,

It is so good to have you dropping in and sharing how you're doing and what is going on. I think about you every day. And I'm still praying for you.

I'm glad to hear that you are able to take meds through the tube. What a blessing that they are able to work more effectively now.

Congratulations on the little victories like a seated shower and being able to make it into the real bathroom occassionally.

Thank you for sharing so much in your post. You certainly have our permission to do a long post! Thank you for sharing the reality of what you are facing, no matter how hard it is for people to deal with and talk about. It is the truth and the reality for you and you should feel free to express it here.

You have an amazing perspective. Keep holding on to hope.

Love,

Rachel

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Melissa!!

Great to see a post directly from the horses mouth...or the fishes bubbles, so to speak! :o

I agree with Morgan that your case IS UNIQUE and I personally feel YOU SHOULD be able to post abou the realities of your situation. If folks can't take the honesty, they do not have to read or respond.

You deserve a place to have familiar ears LISTEN and VALIDATE and send to you, thoughts and prayers. And while hope is always a healthy thing, over zealous optimism in the form of cheerleader sounding posts--from folks who dont' "get it", can kind of be in insulting....I hope you know what I mean by the statement. :o I am not speaking of anybody in particular here...just my opinion.

I have long wondered how you were doing in the home environment and the fact you are seeking home health care aids speaks volumes in and of itself.

I am glad for your small victories and got tears in my eyes as you rejoiced about your first shower!! Yay. But you have a grateful spirit in spite of many challenges and that itself shows you why you are so well thought of.

Also, it really puts into perspective some of the things folks gripe about and the more severe things folks worry about. I am NOT saying anybody should compare themselves to YOUR situation or others on the board, the fact remains, if one wants to be supported, being one's OWN ADVOCATE and reading up on your situations to make medical decisions is key.

I for one, in the face of another MIA board member and yourself Sunfish, am starting to TOTALLY change my mindset and how I "view my situation". While it's no fun being out of work and semi housebound, it CERTAINLY beats being hospital bound and totally confined to small spaces as many folks can find themselves to be in. I have found your posts to be very valuable in the last few months and putting things in persepctive for chronic illness. While I am sorry it has been at your expense and others in similar situations, it never the less has given me a long over due attitude adjustment. :D I am trying not to be so negative in my space.

I am not thrilled over the hospital politics you had to put up with but again, your ever hopeful but realistic outlook, is refreshing. In spite of all the BS, you made it through.

I hope you can post here about ANYTHING, ANYTIME w/o worrying about what others think.

I will be checking out your blog in the near future.

Thanks again for the update and the energy you put out to us to SHARE it all with DINET folks.

Sophia

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Melissa - so so good to see a long post from you again!!!

My tears flowed with you as I read about your shower... how good that must have felt!

I think I personally have understood the reality of your situation and speaking it outloud and honestly for us is very helpful to me.

Love you so much and I'm so glad to hear from you. I'll talk to you very soon I hope!!! :D

And, thank you to everyone who has helped keep us up to date on our Sunfish!

~Melanie

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Melissa,

I am so happy to see you posting! I hope things start looking up for you! I thought about you alot! When I was in the hospital with sepis in Jan. I thought my goodness, I can't beleive this is what you been going though. I wound not wish it on anyone. I feel so bad for you that you had to go thought all that, but I am glad to know what a fighter you are! You give us all hope, and let us know to all keep going!

Glad to see you back around! :D

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Melissa,

I am so glad that you have written this post. I am not glad that you are so suffering. You and I have chatted about such issues in the past. Your case is indeed much more difficult than mine. If there were only something I could do for you, I would. I stand ready to give you hugs of support. If I were in Ohio, I would pay you a visit.

Keep your faith. And, don't forget your friends here.

Lois

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Melissa,

I am so glad to see that you are finally home! I know you still have alot of things on your plate, but it's good to see you back here on DINET.. :D Glad that you are able to get more benefits from your meds! You continue to be in our thoughts and prayers!

Jacquie

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Hello Miss Popular Sunfish! :D

You know I have soooo much to say....but for now I will just say CONGRATULATIONS on typing out that whole post! That takes a LOT of precious energy points.

I will also say...THANK YOU for being honest about dealing with issues surrounding death and dying.

You KNOW I love you so much, so if I don't get to write a long post...you already know what's in my heart.

Thank you for posting your story, in your own words...it was hard for me to choose what to say and what not to, and I wanted people to hear from you what you are really dealing with! You're a better writer anyways! :o

Later alligator!

Love, Em

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Welcome home, Melissa! It is so wonderful to see a post from you on these boards. Your joy through the storm speaks volumes about the kind of person you are. I wish you did not have to face these issues in your life, and cannot begin to imagine the emotions you are experiencing. You will remain in my prayers for strength, continued joy, and for recovery.

Please feel free to post anything you need to discuss on this forum as far as I am concerned. This is a support forum, and we are here for each other to lighten the burden in times of pain and to rejoice with each other in all of life's little victories.

I am so glad that you are home, surrounded by the people and things that bring comfort to you. Thank you for taking the time to update us. I think of you often.

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OMG!!! When I saw you had posted I started crying.... I had to dry my eyes to see the keyboard - Hubby asked what was wrong; he thought I was upset but I had to explain I was THRILLED!!!!

XXOOXXOOXXOO (gently...)

Love you, Miss Sunfush!

Bluebirdava.jpg

And here's a Bluebird of Happiness!

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It's so good to see your name here -- and posted straight from the fishy's mouth! I know there's a hard road behind you, and a hard road ahead--but I hope it helps you to know that we're all pulling for you on many levels.

Seeing your name in the posts today made me have a big smile today.

Nina

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You made my day too, sweet Melissa! I GET the uphill climb you are still facing and admire you for taking time to savor the small victories, like a seated shower, the opportunity to E-Mail us, etc... I will continue to pray that the feeds "rehab" that small intestine to a point where it's no longer so dangerous to you. You have overcome so much. I believe you will continue to amaze us all.

Keep on posting about your experiences and feelings. Ultimately, we all have to face our own mortality, but not as directly as you have recently. You have shown incredible courage and wisdom. Keep swimming, gal. We have lots to learn from you.

Big Hugs-

Julie

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Sunfish,

you won't know me as I am new to posting on here but I had lurked for a long time. Your many posts have been very valuable to me in learning about the various conditions that you have and share with so many members here. I realise that your situation is probably a unique combination resulting in the daily survival struggle that you face. What has impressed me the most is the way that you are facing this struggle and still give so much to the rest of us through the message boards. Your courage and determination must be colossal.

That said, everyone, no matter how strong needs support (which you have on here by the bucket-load) and also somewhere to share and explore their feelings, emotions and fears. Whether you chose to do that: in person with close family and friends; via private e-mail to members well known to yourself; or on these message boards is entirely your decision but please feel free to discuss anything you would like to. We all enjoy hearing of your important successes (such as that fantastic shower) and want to return some of your positive energy and support in any way we can.

I am so glad that you are back in your own fishbowl and out of the hospital tank!

Best wishes,

Flop x

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Guest tearose

What a long hard road it has been dear melissa!

It is so good to see you post again!

Thank you for telling your story and do keep getting stronger.

It is very sobering to go through the tasks you have before you but you seem to be doing well in spite of it all.

I am sorry they were unable to keep you from this sepsis ordeal. I hate to imagine what politics you had to face while so sick!

Well, don't wear yourself out but keep in touch!

best regards, tearose

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