POZ Community Forums
Main Forums => Living With HIV => Topic started by: penguin on January 28, 2008, 07:11:26 am
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Matthew again sorry i can't find the last thing i wrote so i started another one.
Kate is back in hospital since last Tuesday. She got very confused again and high fever and she wasn't responding when we talked to her. She has septic something, long word I can't spell, means there was lots of bacteria in her blood.She was having lots of nosebleeds they said that was because there was a problem with the part of blood to do with clotting but they are working on getting that sorted out too. Anyway they think the infection started in her central line so they had to take that out and put in another one. Shes been on continual dialysis since they admitted her but they are going to try to take her off that tomorrow and go back to 3 times a week like she usually has.
She seemed a bit more alert yesterday and she knows where she is again so thats good. Debra I took her in the penguin heat pack you sent her so shes got him by the side of her bed now!The nurses wont let me heat it up for her though because they say the microwave is for food only and its against health and safety rules.
One of the doctors wants to put her on a new med for hiv called raltevir or something but some of the other doctors don't want to do that until shes more stable. I feel stupid because I dont know much about it so I don't know whether that would be a good thing or not?If its a new one is it better than the older ones or does it just work differently?
I just want her to be back to her old self because it gets really frightening sometimes seeing her so unwell like this.
Thanks for listening to me again
Matthew
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Damn you Matthew we must quit meeting like this. >:( We were excited to see Katie on line, now so disappointed to hear she is back in the hospital. I know this is hard on her and you. Remind Katie that she promised me a tour of London some day and I'm holding her to it. Tell her she's in my thoughts.
Love,
Hal
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Hey Matthew,
Thank you for posting and letting us know.
It sounds like Katie has blood poisoning which is a bacterial infection of the blood. That's pretty serious, but she's way tough and if anyone can fight her way through it, she can.
One of the doctors wants to put her on a new med for hiv called raltevir or something but some of the other doctors don't want to do that until shes more stable.
The drug that doctor is talking about is called Raltegravir (http://www.aidsmeds.com/archive/Isentress_1639.shtml) and we have a lesson on it. You just click the red link I've provided.
Matthew, all of us here know how hard it is for you and Kate at the moment and we'll do whatever we can. Tell Kate we love her and know that we love you too.
MtD
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Matthew,
thank you for being there and having the strength that Kate needs at the moment.
You are both in my thoughts
Pat
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So sorry to hear this Matthew..thanks for keeping us informed.
Sending both of you LOVE, HUGS and STRENGTH
:-* :-*
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Dear Matthew,
Thank you for updating us on how Kate is doing. I wish you had better news and I'm sure you do too. I was also excited to see Kate online, but disappointed to hear she's back in hospital.
Let her know I'm sending her love, light and positive healing energy. Please give her a hug and kiss for me.
Hugs,
Ann
xxx
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Thanks Matthew. Hope Kate gets better soon. Tell her to hang in there and I will be sending thoughts of strength and healing your way. Cristy
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thanks matty now at least I know what its called. I'll try to ask the dr more about that when I go in later. I read about another new one the other day but they said it wouldn't work for Kate because of resistance.
They said she is responding to the antibiotics slowly and that it was good we got her into hospital as quickly as we did, because they were able to stop the infection spreading to her heart & other places. It all happened really quickly, like in the morning she seemed ok-ish and then by lunchtime she was really confused and dizzy and then it seemed like every 10minutes some other symptom was happening. Her blood pressure is more steady too it was crazy high and low for a few days last week
Im going to take her some ben and jerrys ice cream later and I will tell her you all send your love
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Matthew,
Thank you for the update on Kate and I'm sorry to hear this latest update is not so great. My partner Jeromy (pozguy75) had a similar infection and I know it is a horrible thing. I'm gonna make sure he sees this and gets in touch with you guys to share his thoughts.
Give Kate my best...and make sure she gets some Cherry Garcia if possible!
Mark
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Matthew,
I'm sorry for the turn of events. I hope Kate improves soon and get's some well needed rest from the doctors/hospitals and such. Give her my best.
Cliff
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Matthew and Kate,
My heart sank when I read that sweet Katie is back in the hospital. Please let her know that Mini and I are keeping her in our constant prayers. If you can, check her PMs - I have a message from Mini and your fellow Aspie.
Mum (the marshmellow lady)
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One of the doctors wants to put her on a new med for hiv called raltevir or something but some of the other doctors don't want to do that until shes more stable. I feel stupid because I dont know much about it so I don't know whether that would be a good thing or not?If its a new one is it better than the older ones or does it just work differently?
I've been on Isentress (aka Raltegravir) for 3 months now, and have had ZERO side effects from it as well as excellent lab numbers. Nor has anyone else I know that's gone on it this year (it was just approved by the FDA in October so it's very new, though quite a few people I personally know on it were on it during drug trials) has had any side effects either.
It's a unique HIV med, in that it's in a entirely new class of HIV med and attacks the virus in a novel manner. It's definitely a great med, but I can't say why some are telling you to have your wife/partner go on it and others are saying not to. Perhaps you should ask for more clarification on this from them, as to the pro's and con's. If it's a simple matter of some of the staff not being familiar enough with this med because it's new I'd just ignore them and do it, but that's just me.
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Matthew, I am so sorry to hear about this latest turn of events. Please know that I'm keeping you both in my thoughts and sending tons of positive light your way.
I had sepsis about 10 years ago and was in a coma because of it. It's a nasty thing, but I know Kate can make it back. It will be a journey, but I'm so grateful she's got you by her side. Hang in there and give Kate a big kiss for me.
Peace~
Betty
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oh no. I'm sorry to hear that matthew. i hope she recovers soon.
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Please let her know we're thinking of her.
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Matthew, thank you so much again for this update. Me, Niki and Chris were only mentioning Kate this weekend wondering where and how she was; so that’s why she didn’t reply to my text on Saturday!
I’m glad she has Pingu with her for cuddles if not for warmth (stupid h&s regulations, blah blah!). And I’m glad she has a loving brother looking out for her. Please pass on my love and an extra big hug…and a hug to you too.
Miss Kate: Wishing you all nastiness-free as soon as possible, sweetheart.
With much love
Debra xxx
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oh crap. thank you for telling us matthew, much appreciated.
as debra says we were wondering how kate was just the other day so please tell her that we are thinking of her and wishing her a speedy recovery from this latest setback.
matty's words are right on the money.
hope tomorrow brings an improvement.
thanks again for keeping us updated
much love to you both
xxxx
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Bugger >:(
And mucho hugs
- matt
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Matthew,
I so sorry to hear that Kate is sick again, and praying for her speedy recovery.
Thank you for the update,
Please say lots of love to Kate for me.
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Hey Matthew, sorry to hear Kate's had to go back into hospital again. I hope she's feeling better soon, tell her we are all thinking about her.
Chris
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The doctors tried taking her off dialysis yesterday but they've put her back on it for the moment because her blood levels were too high last night and something happened with her blood pressure again. They put her on a different med to help with that too.
Her oxygen sats were better yesterday that's good,means she can breathe a bit more easily and theres not as much fluid in her lungs. She still has this rash like measles but smaller dots all over her but they said that should start to go as the part of her blood to do with clotting gets back to normal
She can't really talk much not just because of the breathing but she also just seems really out of it most of the time I'm there,I think because shes on a lot of pain killers & other meds and very tired. Its annoying not being able to take much stuff in for her because they won't let you. I think they're worried about infection which is fair enough but its not like an orchid from home is carrying typhoid or anything
Philly Kate is my sister not my wife I think anyway I'd have to change my name to Matilda or something for that to happen!! About the raltegavir her doctors are like some of the top people in the uk so I don't think they are inexperienced. Its more to do with her kidney and liver function and the frequency of dialysis at the moment.And also how many other things her body is having to deal with, they said we need to get out of the crisis situation before doing anything else.
Hal I told her if she hurries up and gets better I will buy her TWO dashunds and I'll take her to Memphis to see you and Sam,that made her smile yesterday.
Betty its good to hear from someone whos had this before and is ok now.How long did it take you to start feeling better?Kate wasn't in a coma but they did have her sedated for about 3 or 4 days last week because she needed extra help with her breathing for a while.I asked them about when she could come home and they said they'd know more by the end of this week about that.
thanks everyone for the messages and support
Matthew
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Hal I told her if she hurries up and gets better I will buy her TWO dashunds and I'll take her to Memphis to see you and Sam,that made her smile yesterday.
Matthew it is a well known fact, that a dachshund a day, keeps the doctor away.
Let's set a tentative date for Kate's visit for the first of May. Not only is it May Day (a very special day for commies like Katie and me ;D), but me birfday, and a fabulous Musicfest in Memphis that I just know Kate would adore. So that said young lady, you have exactly three months to get on the mend and hold Mr. Matthew to all these promises.
I'm so sorry you're going through all this Katie. I think of you constantly.
Hal :-*
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Matthew, I was in a coma for a couple weeks, and on a vent. I guess every time they tried to remove the vent, they had to put me back on it, as my breathing really went down. After I came out of the coma, I was diabetic, because the feeding they were giving me through the tube had an extremely high amount of sugar in it, which caused my pancreas to fail. I was pretty confused when I first came out of the coma. I guess I wasn't talking/communicating. (this is all told to me second-hand). It took awhile for me to get back to my old self. I don't know if I'm there yet. :D
Please give Kate a hug for me. Bless you for staying with her. :-*
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It's been a couple of weeks since Kate was taken back into hospital and no update from Matthew for nearly a week - so I've been wondering whether anyone has heard anything?
I do hope Kate is beginning to improve and maybe that she is now back at home recovering but with no news I found myself wondering whether this may not be the case.
Anyway my thoughts and prayers continue to be with Kate and her family and I hope my intuitive fears are unfounded.
Emma
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Emma, I've been thinking the same things. :(
mum
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I honestly think that "no news is good news" in this case.
MtD
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Sorry to hear that Kate is back in the hospital. I will keep her in my prayers. And if no one has heard from Matthew in a week, I will agree with Matty and that no news is good news or he is busy staying by her side to update us at the moment...
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bump (and hug) - matt
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Has anyone heard anything?
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Kate,
my thoughts and prayers are with you
Sharkie
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(v quiet and thoughtful bump)
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Hubby asked about Kate today. I wish Matthew would post and let us know how she's doing. It's been nearly a month.
Thanks for the bump, Matt.
Mum
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Sorry I didnt get back here to let you know whats been happening its all been kind of a blur. I'm knackered so this will be quite short.
Kate is still really ill she stopped responding to the antibiotics and her lungs weren't getting rid of fluid properly.They put her in an induced coma for a few days to put her on total support to give her body a rest, she's been off that for about 4days now.Some other stuff happened but I don't want to write about it really because thinking about it makes me too upset.Doesn't help that her health care proxy person is trekking up some bloody mountain in nepal and has no signal on his phone,why can't she know some normal people who just go to spain or something!So I had to make decisions and I don't know if they're what Kate would have really wanted but there you go.
Now they seem to have found some antibiotics which are working better, and they are giving her some other type of new drug for the septic thing too.She kind of wakes up and looks around a bit and she'll hold my hand if I put it next to her and then she usually goes back to sleep.She did ask for a drink yesterday too.I keep talking to her though and reading the papers to her and playing her music that she likes. Don't know if it helps or not.
I want to try to get my mum to go and see her but she's a bit...unpredictable and has lots of problems so I don't know if that would just make a bad situation worse.
I guess we just wait now to see what happens,I think she still wants to fight but I think shes also very tired.
Matthew
PS Emma I am really sorry to hearabout your cat I read that in the off topic forum
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Matthew, thank you so much for the update. I wish you had better news and I know you do too.
You are absolutely doing the right thing in reading, talking and playing music for Kate. It really will help to let her know she has people around her who care and are in her corner. It will help give her the strength and will to fight.
I hope the new antibiotic do the trick and Kate is on the mend soon.
Keeping you all in my thoughts and sending plenty of daily love, light and positive healing energy your way.
Hugs,
Ann
xxx
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Thinking of Kate.
Hal
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Matthew,
Thank you for giving us an update. Mini asks about Kate all the time and wrote to Kate in her thread. We sent her a card, I hope she got it. We'll continue to pray for her. Please know that our hearts grieve with you.
Mum and Mini
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Thank you for the update, Matthew. Let us know if there is anything you need.
cliff
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Bless you Kate
and you too Matthew
Sharkie
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Matthew, you reading to Kate and playing her music is extremely important. I'm so thankful you're there for her. I'm keeping you both in my thoughts and prayers. Please keep us updated on what's happening.
Betty
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Matthew, I'm hoping for the best for Kate and you. You're a great guy doing so much for her.
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Keeping you and Kate in my thoughts and prayers.
Hugs
Teresa
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My best wishes and thoughts are with you and Kate right now.
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Matthew...
My heart goes out to you and the penguin.
robert
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I woke up with Kate on my mind today, and was wondering how things were going. Matthew, thank you for the update. I'll be thinking of you and Kate.
Tim
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Thanks Matthew. I'm keeping you and our dear Kate in my prayers.
hugs,
Alan
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Thanks for the update, I think it is great what you are doing for her. Stay strong and I'll be praying for you and Kate.
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Matthew,
I really appreciate you taking time out to update us on how Kate is doing. She has been in my thoughts a great deal over the last month (my sixth sense working overtime) and I kind of knew that her health was still causing much concern.
I am certain that your presence at the hospital and all you are doing for her is providing her with a great deal of comfort even if she can't acknowledge it.
I will keep you both in my thoughts and prayers and hope that you both find the inner strength to guide you through whatever the next steps are.
Emma
PS - thanks for your kind words about my cat.
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-weeps-
MtD
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Thanks for the update Matthew.. it's always upsetting to hear one of us getting sick.. :-[
You're a wonderful person Matthew .. I wish the best for Kate and I hope you're taking care of yourself too..
Hugs, Shaun
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When I saw this update yesterday I spent over an hour in tears trying write a response. Honestly? There don't seem the words and I’m no wiser today. My heart feels heavy and the world seems a cruel and unjust place.
Matthew, thank you for taking the time to update us and thank you for being there for dear Kate. I wish you the strength to keep doing what you’re doing. Kate is blessed to have you.
Kate sweetie, beautiful lady, I miss your soothing voice and wise words. You are respected and loved by so many. I wish so many things for you, my friend, but above all I wish you the strength to fight this and no more pain.
Please know that you are both in my daily thoughts.
With much love
Debra xxx
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Hi Kate _ Hoping, praying you pull through and return to normal
Alex
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Matthew, please let Kate know I am thinking of her and send healing thoughts. She's very lucky to have you there.
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Matthew,
Both of you are in my thoughts, daily. Strength and peace to both of you.
Ray
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Hello again everyone. Another quick update on Kate.
Things are about the same. She has been sitting up for a little while some days. Mostly just sleeping still and not really talking.Still on lots of different IV meds. She just seems really confused by everything,almost like sometimes she doesn't really know who people are? I don't know.
I've been reading her lots of things, she seems to like some guy called Uche Nduka best at the moment.Never heard of him myself.Her face sort of gets calm and she smiles a bit when I read that.Poetry isn't my thing really so Im probably not reading it right but she doesn't seem to mind.
I took the little knitted penguin that someone sent her in,she seems to like holding that.I think Matty sent it?But it was from Pennsylvania or somewhere so maybe not but thank you to whoever it was from.I took her in the card from Mini too the rabbits on it were really sweet.
Thank you all for the messages.
Matthew
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I took the little knitted penguin that someone sent her in,she seems to like holding that.I think Matty sent it?But it was from Pennsylvania or somewhere so maybe not but thank you to whoever it was from.
That sounds like Jaser (Mouse) to me.
Matthew,
Thank you for the continued updates on Kate. Still carrying the both of you in heart & mind always.
Tim
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Matthew, please tell Katie I think of her daily. Tell her I think of her friendship every time I leave for work and wrap Sam in the fleece throw she sent.
Hal & Sam
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Thanks for the update, Matthew. I'm glad she's enjoying your reading and that it brings her some peace.
How are you holding up, hun?
Give Katie a hug from Mum and Mini. You both are in our constant prayers.
Mum
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Matthew,
I wish you and Kate the best. I hope she gets better soon, she is very lucky to have you.
Take care,
Snow
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this thread is one of the reasons I enjoy logging on here
People care, you can't feel alone if you talk on here, coz someone will always lend an ear
Best of wishes to Kate and yourself, Matthew... You're a very strong person, and obviously love Kate very much :-)
Keep warm and well,
J
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I've been reading her lots of things, she seems to like some guy called Uche Nduka best at the moment.Never heard of him myself.Her face sort of gets calm and she smiles a bit when I read that.Poetry isn't my thing really so Im probably not reading it right but she doesn't seem to mind.
My hunch is that maybe the smile is all about you doing what you are doing for her.
Best thoughts and wishes for the two of you.
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That sounds like Jaser (Mouse) to me.
Tim
Oh I see,that makes sense.When I gave it to Kate I said I thought it was from Matty.She looked at it for a while and then she said mouse ,and I said no it's a penguin,and then a bit later she looked at it again and said mouse.I thought maybe she just couldn't see it properly because she isnt able to wear her contacts at the moment!
I had a meeting with the doctors yesterday and we talked about what would be the best thing to do next.They were very honest about how things are which is good but also quite hard to sit there and listen to.I said I really wanted to get her home because I think it would be better for her.So now we have a provisional discharge plan for next week for Kate to come home and have full support from the palliative care team,they're the best people to have involved because they have lots of different nurses,doctors and physios working with them and they know how to manage all the different meds she needs.They will also keep an inpatient bed open for her initially if she needs it until we see how things are going.It's a provisional plan because they want to see how she is over the weekend & they need to do some more tests and stuff.
She's a bit brighter in herself,I think she seems more aware of whats happening around her.She can talk to me for a few minutes now too which is good,it just makes her quite tired & breathless.
I told her about your messages & that you were all thinking about her.I'm sure it all helps.
Matthew
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Matthew please tell Katie I'm thinking of her. If you get a chance whisper "Sam" in her ear for me. I hope she gets home soon.
I love you Katie.
Hal
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I hope she's able to get home. It sounds like you both will have a great support team and Kate will be well taken care of there. I agree that being home will help her. Please give her a big hug and kiss from Mum and Mini.
Your fellow Aspie sends his best Spider Man wishes to you, Matthew.
Mum
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Matthew, thanks for updating us. I think it would be wonderful to get Katie out of the hospital and back home. The palliative care team (I assume you're talking about Hospice) is the best. I'm keeping you both in my thoughts....
Luv,
Betty
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Keeping you both in my thoughts and prayers!
Big Hugs
Teresa
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Thanks for the update. I hope Kate is able to go home and things get better..
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Matthew, thanks for writing on here... for a long time I didn't know what to say and I still don't. Woke up this morning just thinking about Kate. She had volunteered to mentor me on poz even though her health was not good, and actually the person who got me writing on here (that never occured to me before). I was supposed to meet her last August but she was not well enough. Please let her know I am so thankful for what she did for me, and that she is in my heart. One of Kate's fave songs I think is "state of the union" and now I hear it a lot, usually while running, and think of her. I know I am just one of many who are thinking of her daily.
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Just a quick post to say that Kate came home yesterday afternoon.All the home care stuff seems to be happening to plan so far,they all seem very friendly and know what they're doing.
Hopefully this time it will be a while before she needs to go back to the hospital again.
Matthew
PS Hal I did what you said and she smiled and said "hot dog"
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Just a quick post to say that Kate came home yesterday afternoon.All the home care stuff seems to be happening to plan so far,they all seem very friendly and know what they're doing.
Hopefully this time it will be a while before she needs to go back to the hospital again.
Matthew
PS Hal I did what you said and she smiled and said "hot dog"
Gee that's great news Matthew. I knew that dog could cure anything ;) give Katie our best and our love.
Hal
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Matthew,
I am so happy to hear that Kate is home!
Mark
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Glad Kate has made it home!!!! Get Well Soon...... :-*
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Matthew, please give Kate a kiss for me. I'm thinking of you guys...... :-*
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Great news! Sending some good vibes... ;)
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i'm glad Kate's home again!
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i'm glad Kate's home again!
Me too. Thank you Matthew.
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Glad to hear this.
I hope her spirits are up....its been a long fight with this infection.
Mike