I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Bill Peckham on November 02, 2008, 08:16:06 AM
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I talked to Anna this morning - she got the call (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/11/a-second-early-morning-phone-call.html).
Send her all your good thoughts and prayers, she will be going into surgery this afternoon. She sent me this picture of her room at St Lukes/Roosevelt Hospital via her phone. I'll post updates as they come in.
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YEAH!!!!! CONGRATS ANNA!!!! :bandance; :bandance; Here's to a long life with your new kidney! Praying for you and wishing you loads of good luck!
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I pray you pee on the surgeons!~ Best of luck to you Anna!
:bow; Prayers for you :waving;
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:yahoo; :bandance; :clap; :2thumbsup; Anna. We will all be praying and thinking good thoughts. :cuddle;
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Congratulations Meinuk, I am hoping and praying all goes well for you :thumbup;
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Congratulations!!! Hope everything goes well. :2thumbsup; :yahoo;
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Congrats!
:beer1;
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Anna, I'm soooooooo happy for you :bandance; :bandance;
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:yahoo; :yahoo; :yahoo; pee some for me!
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Congratulations! Please keep us updated. . .
:yahoo;
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Great news.
I am thrilled for you.
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Wow! :yahoo; Wonderful news! :thumbup; I'm sending love and good wishes and prayers that all goes well. :cuddle; :grouphug;
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:cheer: What a happy day!
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Always fantastic news. All my good thoughts are with you Meinuk. :flower;
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Wow! this is completely fantastic news. Anna, I am so happy for you. :cheer:
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Great news! Prayers headed meinuk's way. I hope we hear soon that everything is perfect and meinuk is peeing like crazy!
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Great news! :yahoo;
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Congrats on getting a transplant. :bandance; :bandance;
Hope you heal fast and do not have any troubles with the first few days of high doses of meds and other issues after discharge.
Chris
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Congrats! I love reading your posts, so I can't wait for you to tell us how everything went.
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omg omg omg omg omg omg omg!!
AWESOME!!!
Another IHDer gets the call and hopefully a long lasting miracle!!!!
WOOHOOOO!!!!
awaiting the great news!!!
What a big couple of weeks it's been... Charee, now meinuk and on Wednesday kellyt!!!!! Now, if someone will give me a call I'm free Friday.... :D
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:yahoo; :cheer: :clap;
Praise The Lord! I will be praying fro you!!!
Lori/Indiana :beer1;
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Congrats on getting the call, sending good thoughts and prayers your way.
Amanda
xxoo
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I'm talking to Anna right now - she's a urinator.
She's sounding good - a bit drugged but happy. The operation was pretty long but about what was expected. They already have her on immunosuppresents. She'll be in the post op room over night and then spend a few days on the transplant floor. I think I will head up to NYNY on Thursday. I'll bring my laptop so she can see all your good wishes but I think she can read IHD on her phone (once she has her charger, until then she's conserving her battery power).
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Congratulations Meinuk!
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Yay! Baby you are on your way!
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:yahoo; :2thumbsup; :clap; :bandance; :cheer: absolutely fantastic
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oh fantastic news!!!WOOHOO!!!
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OMG :yahoo; This is such fabulous news!
I am so very happy for you Anna! :cheer:
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Wonderful news. Congratulations Anna. Feel better soon.
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Great News!! :bandance;
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:yahoo; Anna. Now make sure you rest and drink plenty. :cuddle;
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May you pee a flood Anna. :yahoo;
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How wonderful!! I am so pleased for you.
Take pictures Bill. We want to see our newly transplanted girl.
xoxo
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How wonderful!! I am so pleased for you.
Take pictures Bill. We want to see our newly transplanted girl.
Anna sent me a picture of her pre-installed kidney that she got somehow - I think a doc took it with her phone. She says to hold off posting the pic because it does show a doc holding it and she wants to wait to get permission. She also reports:
Had a good night. Battery going dead on phone will get charger from room as soon as I can con someone to get it.
Creatinine 3.6
I don't know much about post transplant expectations but I assume the creatinine is on the way down and will settle at 1 or so
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:bandance; :bandance;
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Oh Anna, I am thrilled! You know I have been praying for this one! I think AlohaBeth and I need to take a trip to NYC in a few months :cuddle; Take care, enjoy this wonderful step in your journey. Beth and I love you soooo much :2thumbsup; Lots of hugs from us :cuddle; :cuddle; :cuddle; :cuddle;
Bill, thanks for keeping us informed. Give her all our love. She is so special and we want her well soon.
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Creatinine 3.6
I don't know much about post transplant expectations but I assume the creatinine is on the way down and will settle at 1 or so
It takes a few days to go all the way down if I am remembering correctly. I'll check when I get home today.
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:thx; Bill for letting us know about Anna. Tell her we are thinking of her. :cuddle;
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Here's the post referenced in Bill's first post, for those that missed it:
November 02, 2008
A second early morning phone call
By Anna Bennett
What is it about Sunday at 7am? Is that going to be my fate? It looks like in my case, Saturday night is a good night for kidneys. Not a good night for a 32 year old man in good health who had some personal problems, and was found in cardiac arrest. No mater what his problems were, his final gift was signing his donor card, and for that I am thankful.
Of course, as I write this, I am second on the list for one of his kidneys, and I am waiting to hear from the hospital. It is funny that as I was speaking to the transplant coordinator, one of the first thoughts running through my head what that I have plans for this week, a transplant is definitely going to complicate things.
As my time comes closer for a transplant, I am aware that there are many changes coming up in my life. I'll be swapping daily dialysis for a daily drug regime that may cause the dreaded prednisone face. (I'll admit it, I am a bit vain), there could be some serious complications, the kidney may not work, and no matter what, eventually, I'll be back on dialysis again. There is nothing like living different scenarios in your head as you wait for a phone call. It is a unique experience. I am dwelling on the bad, as I know that my life as it is right now is good, and with a transplant, (the ultimate portable renal replacement therapy) I'll be planning a month in Europe, showing off my transplant scar and catching up on all that I have missed.
Until then, I am going through the motions of what one does when you get the call. Stop eating (I cheated and made coffee - I could not survive without a cup of coffee), make sure that my home is in order, dishes clean, a hot shower with liberal use of antibacterial soap, clean sheets on the bed to come home to, old leftovers out of the fridge, garbage out of the house, overnight bag packed remembering the extra phone charger, list of phone numbers and e-mails available, bills paid for the month etc. I live alone, my family is 3,000 miles away, and I haven't told anyone yet, because I have decided that I'm not alerting anyone until the transplant is a sure thing.
In a couple of hours, if I don't recieve another phone call from the transplant center, I'll prime my dialysis machine, eat some breakfast, and Sunday morning will commence as it does every other Sunday. These phone calls are like a military drill, you prepare for the invasion, but so far all I have done is prepare, then the hours go by, the kidney goes to someone else, and I stand down, and go back to my normal routine.
8:48 am - it is not a false alarm, the kidney is mine. I am on my way to the hospital. Details to come...
.......
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:clap; :clap; :clap; :yahoo; :yahoo; :yahoo;
WOO HOO................
More good news :thumbup; :thumbup;
may you make a fast and speedy recovery anna. :waving;
P&K
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Anna, I'm so psyched for you it just isn't funny. I find you amazingly inspirational and I love your independent spirit. Bill, your support is also a wonderful thing and I send you both enormous hugs. Oops, don't squish the new pee mechanism. :grouphug; :cuddle; :grouphug;
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Does this mean you won't be running the taxi if I come to NY? ;) get well soon Anna. Love ya!
Sluff
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Creatinine 3.6
I don't know much about post transplant expectations but I assume the creatinine is on the way down and will settle at 1 or so
It takes a few days to go all the way down if I am remembering correctly. I'll check when I get home today.
Right on track according to the numbers we have for when Stephen had his transplant! :yahoo;
Best wishing for healing quickly Anna!
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Sounds like things are going well! :yahoo;
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I just go this email from Anna:
I just tried posting to Ihd from my phone and it didn't work. Pro'bly for the best as I am pretty hopped up on narcotics. I am drinking my dinner, doing a lap around the nurses station, then back to bed. I'll call when I've settled in.
I for one would like to read her drug induced postings. She is able to read IHD so keep the good wishes coming.
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congrats anna,
plenty of drinking and lots of peeing is the order of the day and every day forward :thumbup;
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:yahoo; Yay narcotics!
I thought you were going to say you were doing a lap dance :rofl; (well, with narcotics, one never knows!)
Great to hear from you Anna - keep drinking and peeing! Get photos of that liquid gold!
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Drugs are good! I hope all is well and you are the road to recovery!
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So glad to hear you are doing well!
I am sure you will be home enjoying your new kidney before you know it!
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:yahoo; you are up and walking?!? :yahoo;
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Meinuk!!!!!!
I am SO happy for you~~~!!!!
I have lovedyour writing from the first posts that I have read of yours!!! I am just thrilled :)
Smiling HARD in Canada!!!!
Kim :bandance; :bestwishes; :flower; :cheer: :grouphug; :cuddle; :guitar: :canadaflag; :rudolph;
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Excellent news, Anna! Congratulations! :clap; :yahoo;
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WoW!!!! I am so happy for you!!! :2thumbsup; Congratulations!!! Do a lap for me too!! I can't believe you are up already!! You are amazing! :grouphug; :clap;
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:2thumbsup;
Wonderful!
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Bill thanks for keeping us all posted....
now Anna doing a lap dance... that I'd like to see... right after Paris and AlohaBeth stop off at my place on the way to NYC!!!! hehehehe
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Walk, Walk, Walk, Walk..... keep that blood circulating to that new kidney!
:cuddle;
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:clap; :clap; :clap;
:waving; :waving; :waving;
Well done :-)
:2thumbsup; :2thumbsup; :yahoo;
P&K
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Fantastic, congrats, this is the best news.... can't wait to read your story post, always loved reading your posts.
congrats again and may all be well. :flower; :bandance;
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:bandance; :bandance; :bandance;
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Meinuk, did you remember to cover your :sir ken; with another hospital gown while doing laps? :rofl;
Hope you get out soon so you can enjoy something you couldn't while on dialysis.
Chris
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So happy for you!!!! Here's to your very speedy recovery!!!!
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They're keeping her in the recovery room for another night - she told me what they're looking at but I didn't catch the details (I was in a store) she doesn't seemed worried so I wont worry either. She did say her creatinine is 1.5 - I requested a picture - evidence - of her new urination abilities.
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I requested a picture - evidence - of her new urination abilities.
First thought :o then :rofl; and finally you never see a woman saying that to a guy. If there is a picture, it's usually a guy taking a picture of his drunken buddy or friend doing that in the snow trying to write his name. Just in time for a redneck joke waiting to happen. :rofl;
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I requested a picture - evidence - of her new urination abilities.
First thought :o then :rofl; and finally you never see a woman saying that to a guy. If their is a picture, it's usually a guy taking a picture of his drunken buddy or friend doing that in the snow trying to write his name. Just in time for a redneck joke waiting to happen. :rofl;
She's blaming the drugs for her willingness to send the picture - dialyzor porn
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Liquid GOLD!
:yahoo;
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bring on the catheter bags full of the liquid stuff !!!! :clap;
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What wonderful news! Congratulations, Anna!!! :yahoo;
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Love that pee bag! :beer1;
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only kidney patients can understand how gorgeous and special it is to see a friend pee!! LMAO
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BEAUTIFUL, GORGEOUS, AMAZING. :clap;
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:beer1; Wonderful picture. Keep it up. :bow;
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Anna, I told Beth about your great news when she got off the airplane. She started crying! We both want you well and on the go again. Sending our love :cuddle; :cuddle; :cuddle;
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Pee Baby, Pee!
8)
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:thumbup; :thumbup;
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OMG I cannot believe I missed this!
:cheer: :cheer: :cheer: Go Anna Go
This is fantastic news. I am doing a little dance down here :bandance; :bandance;
Love the dialyzor porn. :-*
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:clap; great news :yahoo; wishing you all the best :cuddle;
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Good luck to you Anna...............
Get well soon.....
Get well soon.
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Wooohooo Anna! Keep on peeing!!! :2thumbsup;
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congratulations Anna
way to go
eat sleep drink and most of all enjoy what lies ahead of you. :thumbup; :yahoo;
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:clap;
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Hopefully you will be able to go home soon Anna.
Liquid Gold :rofl; :rofl; First time I've heard of that. I'll have to rember that one.
Keeo it up Anna :bestwishes;
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They're keeping her in the recovery room for another night - she told me what they're looking at but I didn't catch the details (I was in a store) she doesn't seemed worried so I wont worry either. She did say her creatinine is 1.5 - I requested a picture - evidence - of her new urination abilities.
Bill, how is Anna doing? Anna, if you're reading this :clap; great pic, way to go!!!
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Bill, how is Anna doing? Anna, if you're reading this :clap; great pic, way to go!!!
I'm on a train right now, I should be in NYNY's Penn station in about an hour. I'll be able to post a pic of the non-uremic Anna this evening once I'm back in Philadelphia. I just talked to her and she was already objecting to the idea of a photo but I pointed out that in her weakened condition she was in no position to fight me off. She has had a shower and her first post transplant cup of coffee - two important milestones on the path to full recovery. I should have a first hand report later today.
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:thx; Bill. Please give a :grouphug; from us and we look forward to your posts. :cuddle;
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:2thumbsup; :yahoo;
So mUch good news this week.
Bet that COFFEE was GREAT...
Way to go Anna :waving;
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Bill is here, I'm using his laptop to post we just ordered pizza for lunch. I hope to be out of the hospital this weekend, and expect to be bored out of my mind while recuperating so you'll be getting some lengthy posts. This whole experience has been surreal, and thanks to daily home hemo, I was in the best possible shape for a successful transplant.
More to come... And thanks for all of the posts and well wishes, they have been great to read even if I haven't been able to post.
Best,
Anna ( and her new kidney....)
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Have a couple of slices for me.
:beer1; :beer1;
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Great news! Bill, you are the greatest! And Anna, I am so glad things are going well. Eating pizza and visiting with Bill---it doesn't get better than that! Enjoy your time together. We'll all be here waiting to read all your posts when you are home. You know we want details! Sending you my love----rest and recover. :cuddle; :cuddle;
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You know that it really hasn't happened until we see :pics; :cuddle;
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(quoted from another thread)
All good things must come to an end... On August 15th, my dialysis unit suddenly closed...Imagine my surprise when I was called by the new unit, told that I was a new patient permanently, New Dr, new nurse and that they did not support solo home hemo. I could either find a new unit or come in center, either way they would shut off my supplies, effectively attempting to end my optimal dialysis care plan of the past 10 months.
Anna (and her new kidney...), I've just got one thing to say:
GOOD ANSWER!!!
:clap;
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Anna, things are definitely going your way.
Have fun eating all that stuff you held back on and have a speedy recovery.
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Anna you need to name your new kidney. We can help!
How about "Obama 08" So you will never forget! (Although I did not vote for him)
Please have a HUGE glass of ice cold milk for me. Walk Walk walk!!!! Keep moving.
:cheer:
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You know that it really hasn't happened until we see :pics; :cuddle;
At great risk to my own health and safety I took this picture while Anna was laughing with food in her mouth. If I turn up missing check Anna's whereabouts.
Anna looked great, in a good mood and is hearing that she may go home this weekend! After I left I received an email that instead of getting to rest Physical Therapy showed up and made her do stairs.
Anna you need to name your new kidney. We can help!
How about "Obama 08" So you will never forget! (Although I did not vote for him)
Good one Rerun - I was thinking Hope but the urine factory is a boy so Obama '08 is a better fit.
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Looking good, Anna!
A working kidney and pizza ... what more can you ask for?
:beer1;
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:bandance; :bandance; Pizza Porn!
I am so happy things have gone so smoothly for you Anna. :flower;
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Here's a peetunia in honor of eating peeza :flower;
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Anna that picture is the BEST!~ You need that as your new Avatar!!!! You look wonderful!!!
Thanks Bill for the update.
:bandance;
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:thumbup;
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Lookin great!!! You look good too!! LOL!
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Congratulations Anna. :bandance;
So glad you got a kidney and eveything is going well.
Since I am predialysis, I am still peeing, so can't completely relate to all the excitment about it.
I hope your new kidney lasts for years and years, so you can pee forever.
Best wishes for a speedy, full and complete recovery.
Normie :cuddle;
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Great job!!!!! Yeah!!!! :cheer:
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:cheer: I am so happy for you Meinuk.
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Anna I am so happy for you, I just read that your dialysis site was closing and going to mess everything up, things happen for a reason and I am SO glad this happened for you :)
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:thx; Bill for the great picture. :2thumbsup;
Anna, you look wondeful. :bandance; :cuddle;
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Anna I am so excited for you :bandance; :bandance; Bill Thanks for the pics. Anna you have such nice color and looking like your ready to bust out of that place. :grouphug;
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WOW. How great. Keep it up Anna. :bandance; :cheer: :clap; :yahoo; :thumbup; :cuddle; :cuddle; :cuddle;
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Hope you are going home soon. Do you have someone to help you out a little if you need it? Bill it was a so nice of you to be there for Anna, you are special. Best wishes for a quick recovery Anna. :grouphug;
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Great news! And the pizza looked delicious!
Sluff, I don't like the new avatar -- it's just not you. Bring back Hoss!!!
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Anna reports being dressed with bags packed - expecting to be home in the next few hours. Once her computer is fired up she'll be able to fill us all in on her adventurers in nursing - I think having her routine transplant (not a seven person domino chain of donors) mentioned on RenalWeb impressed her medical team ... I should let her tell the stories. But let me be the first to say ... Welcome home Anna!
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Welcome home Anna....What a great day for you and all of us who care. :grouphug;
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:yahoo; :2thumbsup; :clap; :bandance; :beer1; Welcome Home Anna. :cuddle; :grouphug; :cuddle;
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:welcomesign; Home Anna! :flower;
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:cheer: Great news! Love you Anna!
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WELCOME HOME!! Cheers to a great life with your new kidney. Please keep us updated to all the wonderful things you are doing!!
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Welcome home, now hurry, run for the bathroom! :2thumbsup;
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Welcome home Anna! Wait what is that smell...... It smells like PEE!
:cuddle;
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At great risk to my own health and safety I took this picture while Anna was laughing with food in her mouth. If I turn up missing check Anna's whereabouts.
Bill, unfortunately, I need you too much to be able to inflict bodily harm. But, you have definitely upped the bar by introducing Dialyzor Porn into our lexicon, so all I will say is that I have a digital camera too, and one day when you least suspect it, (maybe while you are fast asleep during an extended run...) Revenge is a dish best served cold, and I am willing to wait a very long time.....
I am at home, whew - there is a lot to write about, and over my next 30 days of house arrest, building back my immune system and healing, I am sure that I'll be really prolific. Tonight, I am going to just let being home sink in. I was reading all of you get well posts on my treo, and they really made my week in the hospital fly by. Thank you all, your love and support are so much a part of the healing process, I am very grateful.
And, the picture won't be my new avatar, but Bill was right when he said that I was happy. So, we all have a snapshot of one of the highlights of my life, and as much as I hate having my picture taken, I'll admit that Bill was right (I'm still following through with my threat though!)
And Sluff, thank you so much for your call, you are such a kind, caring man.
:grouphug;
Anna
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I don't think many of us ever thought we would be part of a group that would be cheering on a pee bucket.....oh what a feeling it must be..to be able to drink drink drink.
Ann
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:cheer: Welcome Home Anna :cheer: :cheer: :cheer:
My your road to recovery be smooth and you don't go :urcrazy; under house arrest. :cuddle;
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fantastic Anna!! Glad you are home and doing well... and that pizza has made me hungry!!!!
:bow; :bow; :bow; :cuddle;
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Oh Anna, I just read this - what an exciting week you've had! I am SO HAPPY for you!!! :bandance;
So glad you are home...take care, no heavy lifting, looking forward to your posts keeping us updated!
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Welcome home Anna!!!!! :flower;
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Glad to hear you're home. Are you ready to start your new life?
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I'm so glad that all went well. Take it easy, rest for a bit, and take good care of yourself; soon you'll be on to new adventures. Sending hugs, good wishes, and congratulations. :bestwishes;
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How are you doing Anna? When do have to go back for lab work? We sure hope you are getting some rest after your hopsital stay. We are waiting patiently for your reports. :cuddle;
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home, sweet home!
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:pics;
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Glad your home Anna! :bandance;
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Ok, here it is.. a recap of my stay in the hospital. One thing about recuperating at home, sitting in my dialysis chair with my legs up typing with two hands is a great way to rest
Saturday, November 1, 2008
It all started while I was at home, asleep in my bed. A 32 year old man had a cardiac arrest, and was put on life support. He was an organ donor, and his final gift in life was donating his organs to strangers in need.
Sunday, November 2, 2008
My phone rang around 6am, as it was the reversion of daylight savings time, I had thought that I’d be gaining an hour of sleep, but after a brief conversation with my Transplant Coordinator, there would be no extra sleep. I was second on the list for a kidney. The circumstances of my donor’s death were discussed, and the kidney was a match. The wait was on.
I had an “on deck” phone call in July, so, as time passed, I was ready to start my normal day, I made coffee, because even if I did get the transplant, coffee wasn’t so bad, and my nerves needed at least a small cup. I sat in my dialysis chair and pondered transplant. I had some pretty important plans for the upcoming week, something I had been looking forward to for a year, the cynic in my just said “figures”. After an hour or so, my phone rang again, the kidney was mine. My head started to spin. I had been planning for this moment since June 2005 and here it was. I stood in the middle of my living room and thought “what now?” I called Bill, as usual; he had a witty reply and gently talked me through my mild panic attack. After we hung up, I started the alert chain, my friend Nancy was to be the gatekeeper of information for my friends. I ran through my checklist of prep for the surgery –after all, I was to be away from home for at least 5 days possibly longer, cleaned the kitchen, took out the trash, watered the plants, took a quick hot anti bacterial shower, paid any bills that would be due in the next two weeks, got dressed in the clothing that I would be going home in, packed a bath bag, packed a book and my phone charger, walked out the door and down to Broadway to grab a taxi to the hospital 114 blocks away.
As I was in the taxi, I called the family in London, my boss, and two of my best friends. My Transplant Surgeon called me to check in and coach me through what to pack, and was surprised that I was already on my way to the hospital. He told me to go straight to my room, and the nurses and Surgical Fellow were waiting for me.
My room was on a floor that I had been on before for other surgeries, and my admitting nurse remembered me. We caught up as I unpacked and gowned up, the Fellow came in and took my history and started an IV. I was allowed to self cannulate and draw my own pre-op bloods (after all, after a year of home hemodialysis, if anything, I know how to self cannulate) this led to my first of many conversations with staff about High Dose Home Hemodialysis (HDHH), and how it has benefitted me for the past year, and I credited it for keeping me in great health for my transplant. The Fellow left me alone in my room to relax, and I made some phone calls, sent some e-mails from my phone and tried to breath. I was also visited by a man with a portable x-ray machine, and I had a chest x-ray in the comfort of my own room.
My Transplant surgeon, Dr. Benvenisty came into the room and we did my pre-op and informed consent. We discussed the kidney at length, and he offered to hold onto my phone so that I’d have it in recovery, I called home one last time, and of course, I had low balled/simplified the surgery so much, I was told that they were out shopping. I had to laugh. I handed off my phone, became a patient and was wheeled down to pre-op.
I’ve had a few surgeries at St. Luke’s, so I know pre-op well. It was a quiet Sunday morning, including mine, there were only 3 surgeries. I was given my first dose of cellcept. As I lay on the gurney, we chatted, talked cell phones, and waited for the kidney to arrive. There was some concern, as it was the day of the NYC Marathon and we were worried that it was stuck in traffic. But it wasn’t, it was in a different room, and soon, it was wheeled into pre-op. It was a sobering moment. The cooler is high tech, and on wheels, and the cooling system makes a whooshing sound that is positively sci-fi. And there is a form of ceremony in the delivery of a donated organ for transplant, the team gathered round the cooler and processed and witnessed the delivery, blood type was cross checked, tests were cross matched, and everything was witnessed at least three times. Then they opened the cooler. I was on the gurney, and my glasses were upstairs in my room, I didn’t see my new kidney, but I knew that it was in good hands.
Soon enough, we were both being wheeled together to the operating room; the pulse of the cooler will be in my mind forever. I was wheeled into the operating room, my kidney stayed behind for a moment. I got up, and hopped onto the operating table, said hello to the team, was covered by a warm blanket, told the nurse that this was the best spa ever, and then I was out.
While I was out, I was intubated, two additional IV’s were inserted into my non fistula arm, a foley catheter was inserted and a 9 inch incision was made in my lower abdomen (I had begged for a tummy tuck to be included, but alas, it was not to be) and my new kidney was grafted into my body. It started producing urine while I was on the table. There is a common anomaly in some kidneys, two renal arteries – well, mine had three, my new kidney actually has two renal pelvises, but as it is a common thing, and my surgeon is extremely good at his job, he simply dealt with it. No problems – it just looks a bit odd under ultrasound, if the radiologist doesn’t know the physiology. (more on that later)
The first thing that I remember is telling people that I had sprung a leak. (an IV had come out) it was quickly remedied, and the nurse was asking me my name, and did I know what I was there for. At some point, Dr. Benvenisty’s name was mentioned, and I heard him call out “I’m right here” I replied “You’d better be” (did I mention that I really like this man?)
The next thing I remember, he gave me my phone, and my post-op nurse was taking my vitals, we were alone in recovery overnight, and I was on the phone letting everyone know that I was out of surgery and all was good. At St Luke’s it is common for Dr. Benvenisty to keep his post-op patients in recovery a bit longer, you get intense nursing care, and there is an isolation room that has been informally named the “Benvenisty Suite”
Monday, November 3, 2008
I was moved in to the suite in recovery in the morning when other patients started coming in. My immunosuppressive regime was started, the meds that will be altering my body chemistry for the duration of my graft, 2x a day for the pills, and 5x a day for the anti fungal liquid. With regard to my kidney, there was a little hiccup. My urine was emptying sporadically; the overall volume was ok, but inconsistent. This could be a sign of hydronephrosis. My surgeon is a cautious man, and he ordered an ultrasound. But my creatanine had already dropped for 6.8 to 3.6 there was no doubt that the kidney was working, but what was up with the inconsistent peeing? Dr. Benvenisty suspected the foley, but tests were ordered to be absolutely sure. The radiologist noted the second renal pelvis and there was a question of ruling out hydronephrosis – so now we were on alert. For the first time, I got up to a chair. I had intense gas pain. (maybe that Sunday coffee wasn’t such a good idea)
My arterial IV was removed, which was a great relief, as it was on the inside of my right wrist, and each time I grasped the bed rail to either move myself in bed, or get up, I was putting serious pressure on the line, and I had one heck of a bruise. I was down to two IV’s , a pain pump, the erratic foley, oxygen cannula during the day and oxygen mask at night, and the cardiac leads, slowly my tubes were dwindling.
I don’t remember which staff member ran up to my room for my phone charger, but as soon as I was plugged in, I was chatting away. I think that I would have gone insane without my phone… And speaking of insanity… On Monday I had a very intense reaction to a conversation that I had earlier. Really intense, intense to the point that I wanted to make a call and set things right. This is not in my nature, and I was a bit freaked out by it, I closed my eyes for a second, and saw cartoons. Personal revelation here: I have done recreational drugs in my distant past, and as soon as I saw those cartoons, I knew that I was tripping. Ah hem “Hallucinating” I believe is the proper medical term, and all I can say is that those closed eyed cartoons saved me for a potentially embarrassing phone call. Note: This is a rare side effect of prednisone and as I was not only on prednisone but Dilaudid as well, I am surprised that this was my most intense reaction.
I had a visit from the Infectious Disease physician who was called in to test my sensitivity to bactrim, we had a great visit, and decided that since the antidote to reaction to bactrim is steroids, and I was already on prednisone, we gave bactrim a try. No problem.
Bill has alluded to my “adventures in nursing” and I’ll admit that he is privy to more detailed/candid information than you’ll get in this narrative. I’ll just say that I had intense nursing care, and on most days there were two nurses following me, but sometimes those two nurses had to take a break, and let’s just say that many cooks can spoil the soup. My overall care was amazing, and I complimented the Nursing Supervisor on his staff when he popped in to visit me. It is just that when you are being cared for by so many people, surgical residents, Renal Fellows, Interns, Attendings, Nurses and Aides – well, you run the gamut, and everyone has an opinion on how things should be done, and the Nurses seemed to have the most diverse opinions.
On Monday night, I had my first visitors, my Boss, one of my best friends and a friend/co-worker. They were excited/relieved to see how I was progressing. They also were there when I met with my new Nephrologist, and that comforted them to realize that I was in such good hands. That night, I slept and chatted with my nurse, shifted a lot in bed to try and get the gas to move, I was woken up every few hours for vitals and soon enough it was morning. There was some concern about my oxygen saturation as well. I wasn’t breathing as deeply as I should have been, so a chest x-ray was ordered, and I was given an incentive spirometer (breath exercise device) to build my lung volume. I had another chest x-ray taken while I was sitting up in my bed, and the radiologist saw low lung volume, so there was definitely an issue to address.
Tuesday, November 4, 2008 Election Day
I was given a sponge bath, my meds, and brought my clear liquids tray. I was told to drink, drink drink. I was also on strict I/O (input output) so everything was recorded. Still, my peeing was erratic, so more tests were ordered. Another ultrasound, then a CT scan, then a nuclear medicine study of my kidney function. It was a day of tests. That night a friend from work came by to say hello, we visited for a bit and then I slept. The windows were open in my room, and around 11pm, I was snapped awake by spontaneous cheering, I smiled. Obama had won the election, and NYC was overjoyed and had taken to the streets in celebration. I smiled and tried to go back to sleep. But, it was a restless night, I lay awake for a while wondering what the hell have I done to my body? Just two weeks ago, Bill, Cairny and I were walking the trails of Mt Rainer eating sandwiches by waterfalls - it was a perfect day, and I felt great. But there I was, two weeks later in a hospital bed, in pain, drugged up and questioning my decision. This was my passing moment of regret, and in hind sight, I am glad that I had such a dose of reality – it makes me appreciate the good moments more, I fell asleep, and morning came quickly.
Wednesday, November 5, 2008
The morning started out badly. I was in a lot of pain and I had to get up, at one point, I just lost it and wailed, deep intense crying as I tried to sit up in bed. This only lasted for a few seconds, and it ended in convulsive coughs, the silver lining was that it cleared my lungs, I could breath deeper, so that meant that soon I would be taken off oxygen. Then it was time for vitals, meds and moisturizing. An aide came to walk me to a bathroom to wash myself. It is at this point that I should note that I am blind as a bat, and my glasses were up in my room, so for the past few days, everything was a blur. I was moved to a different room in the recovery unit, and I was brought a breakfast tray with real food on it. I was able to eat some egg white and a couple of bites of rice crispies, and then I was wheeled back to ultrasound. After my scan, I came back to my room, met my new nurse and we went for a walk, then it was back to recovery to meet with my surgeon, fellows and nephrologist. My Surgeon was concerned that I didn’t have my glasses and he dispatched a resident to get them from my room, but they were not to be found, this caused some concern, but I knew that I had a spare pair at home, so someone could go and get them if needs be. It turned out that the floor had given away my room and packed up my stuff, and Dr. Benvenisty was not informed, his staff came to visit me later that day, and they brought my glasses to me, I could see again. I missed lunch, but got dinner, some turkey, I scarfed that turkey down and it tasted good, but I was reaching the point of selling my soul for a cup of coffee. For the rest of that day, I was on the phone, reading IHD, making calls and listening to TV, and by the evening, I was moved to my official room upstairs. The cardiac leads were removed as was my oxygen, I was feeling great.
There is a private section on the 10th floor of St Luke’s it is decked out like a hotel room (non alcoholic mini bar, TV with cable, DVD and VCR, wifi, a great view of NYC, and an ensuite travertine bathroom with shower. I liked it, and my new room was at the far end of the hall, so it was an oasis of calm, which was so peaceful after the constant activity of recovery. My IV’s were stopped, and I was on normal drinking for my intake. That meant that one more IV was removed, I was down to one IV and that was hep locked as an access, I could easily live with that. The only thing that surprised me was the multiple needle sticks that started on Monday morning to check my blood sugar (diabetes is a common side effect of an immunosuppressive drug regime) As we could only use my right hand, my fingers were taking a beating, and my belly was starting to look like I was part Dalmatian from the frequent heparin shots that were administered, soon enough, we had to move to injecting my legs, as we ran out of space on my belly – which on normal days has plenty of real estate to go around.
At 3am, I realized that today was probably the day of my donor’s funeral. I spent some time thinking about him, and the fact that our lives were now entwined. I started writing my letter to his family in my head. Receiving a kidney that is a person’s last gift of their life to a perfect stranger is a humbling event.
In the middle of the night, I was introduced to sci-fi vitals. My temperature was taken by a wand that is slid around the perimeter of my face and ends up behind my ear. Now, I have been woken up before by some pressure behind my ear, and I like it, imagine how confused I was when it was an aide taking my temperature.
Also in the middle of the night, there was some confusion as to why I wasn’t on an IV drip, so the Resident came in and I was hooked up. In the morning, my surgeon officially stopped the IV and I was back to just the heplock and foley.
Thursday, November 6, 2008
Cool thing about being on a private floor? The concierge brings you the NY Times in the morning. If only I had coffee to go with the paper…Imagine my surprise when I was delivered a clear liquid tray. I was starving, and frantic for coffee. I called my boss and asked him to bring me food. I had some serious negotiating to do with the staff. Also, this was the morning that the gas pain finally resolved. It was going to be a good day.
The transplant team came bearing gifts, a stuffed flower for the foot of my bed, and a swag bag of a watch, socks, t-shirt, a pain pillow and other swag for my new chapter in renal replacement. Dr. Benvenisty’s staff are super stars I firmly believe that good gravitates to good, and in this case I have developed a close personal relationship with each member of staff, Maddy the Coordinator, Sherie the Social Worker and Barbara who runs the place. They care, and it shows. Each day, they showed up to visit.
That night, I was advanced to real food, and my boss showed up with some lentil soup and quinoa salad, a robe and some cool socks. I ate a little soup and it tasted great. He put the leftovers in the mini bar and I spent the night watching TV.
Friday, November 6, 2008
An exciting day. I woke up to the nurse telling me that she was removing my foley. Did you all hear my sigh of relief at around 5:30 in the morning EST? I was up and after a visit from Dr. B - he allowed me to shower.. I walked to the nurses’ station and begged for some clean gowns and towels, then, I showered. I knew that it was going to be a good day. I had a great visit with Sherie the Transplant Social Worker, and my breakfast tray was delivered with coffee on it!
I was wheeled to ultrasound for the final time to scan my legs for any blood clots, then promptly brought back to my room. And pretty soon, I heard a familiar voice entering the room. Bill settled in, whipped out his laptop and told me to post, then we ordered pizza, the picture was taken, and we had a visit from Maddy the Transplant Coordinator who went over my discharge and meds. After lunch, Bill was headed back to ASN/Renal Week in Philadelphia for an evening dinner, and I went back to bed to rest, but it was not to be. First I was visited by the dietician, then, occupational therapy, we walked the hall and then I got a drink out of the mini bar to show that I could reach, and she cleared me to go home. I got back into bed, and the Physical Therapist showed up to walk me in the hall and do two flights of stairs to prep me to go home. I got into bed and then the chaplain visited, it was while I was chatting with her that Dr. B showed up, sorry that he missed Bill (he reads the blog) and then he walked to the mini bar, took out cans and bottles, and told me “This isn’t a social visit, drink all of this, I want you to pee”. He then whipped out his very cool lap top, asked me why I wasn’t blogging and he read Renal Web while I drank. Soon enough I was able to pee on demand, and he was satisfied with everything and said good night. For him it may have been a good night, I was up all night going to the bathroom; I must have drunk 30 oz.
I also had a visit from two friends, but I have to admit, I was wiped out.
Saturday, November 7, 2008
It was a rainy miserable day, and my breakfast tray had sanka on it. The residents came in and changed my dressing from abdominal pads to gauze, I puttered, watched TV and my friend Cristiane came to visit. I learned that ordering Swedish meatballs not a good thing and I also learned that CellCept can wreak havoc on your GI system. This was not a good bodily fluids day. But I got the news that I was being discharged on Sunday, so honestly – who cares, I was going home!
Sunday, November 8, 2008
I was home by 5pm, and I walked into my little apartment exhilarated and exhausted, greeted by a blooming geranium and a humming NxStage Machine. How can I put into words the relationship that I have had with this machine still sitting by my side? For a year, it gave me freedom and health - a few administrative headaches, but overall, I credit it for keeping me in the best possible shape I could be in. Soon enough, it will be passed on to another person, and then they too will benefit from home hemo. The first thing that I did when I walked into my apartment was unplug my dialysis machine, after all, it is now unplugged, and so am I.
Update: On day 33 I posted my Stent removal here: http://ihatedialysis.com/forum/index.php?topic=11377.msg193677#msg193677 (http://ihatedialysis.com/forum/index.php?topic=11377.msg193677#msg193677)
November 2010
Has it been two years already? I guess so. Wel, the transplant rule of thumb is "It'll last two years or twenty years", now that I have made it for two, my goal is 20!
What has happened since then? Well, I didn't stop working during my recovery (mistake); and I quit my job of 9 years six months after my transplant. Then I took a year off, wrote and went to school (who says 43 is too old to keep learning??? - well, my banker for one! How to watch your bank account spin down when you are paying for COBRA! YIKES!!).
I moved out of "my little crackhouse" to the suburbs of NYC of course irony of irony, NOW I am in a house big enough for my NxStage and all the supplies... hah (I appreciate space so much more now). In a big career change, my boy kidney and I are working in dialysis advocacy. It is amazing that when I was on dialysis, I would sit at my computer at my job at a Law School and slack off by reading IHD. Now, I am off dialysis for the forseeable future, but my work life is all dialysis all the time and I LOVE it! It is the stories of EPOMAN, Goofynina, OKarol and so many others that have been a source of support and inspiration for me, and when I work with patients and practitioners, I listen to their stories, and on the inside I smile, knowing that I have known and loved people with similar stories. Now THAT in itsself is the ultimate in job satisfaction, and I don't think I would have had it were it not for a simple websearch when I first started dialysis and stumbled upon IHD.
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Terrific account Anna. Thanks so much for all the details, they really helped me visualize your experience. Congratulations and I wish you and your new kidney many many adventurous years together. :cuddle;
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:clap;
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That needs to be published. It was awesome. Best of luck and have that glass of milk for me.
:cuddle;
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Great account...are you going to have a retirement party for NxStage? I think that would be appropriate. Wonderful holidays to you.
Ann
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Thank you Anna for the detailed narrative of this wonderful event in your life.
Sounds like all is going well and I hope you recover quickly. It must be nice to be home.
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I love your stories Meinuk they are always great!
I am so happy for you I hope your kidney works for a very long time! Remember to take very good care of yourself and let your post transplant team know of any issues quick (that's what got my TX)
Congrats!!!
CW
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:cheer: Anna, I am cheering you on across the ocean.
Thank you for sharing your Transplant journey with us. I have been waiting since March 2005 and can only imagine the road ahead of me. Your honest account of the whole process has helped calm my fears of my Transplant decision.
I agree with Rerun, it should be published. :cuddle; :cheer:
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:yahoo; Anna. Great recap of your journey. It should be published. So glad you are home. :cuddle;
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Thank you so much for your account. That is so helpful to those who can only wish right now. I hope you don't mind, I also shared your account with my husband and a close friend. Your story brought tears to my friend's eyes. I also learned that if I ever get a transplant, I want one of those rooms with the mini bar. I'm gonna write my hospital right now, so they can start working on that. KEEP HEALING!!
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Wonderful news! Glad your new kidney is working great!!
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Thanks everyone!
Rerun, I was thinking of you last night when I made myself a cup of hot coco, using real milk. (I'm not a fan of cold milk, so I hope that you don't mind!)
I've settled into a routine for the next month, I spend a lot of time in my dialysis chair, feet up, laptop in lap, writing and working from home. I putter around my little apartment, doing dishes, packing up supplies. Each day I try to get outside. So far, I've gone to the clinic twice for blood work ( all good) and I'll go back again tomorrow, then settle in to Clinic visits on M/Th for the next month.
I get my staples out next week, (even though my incision is already healed); and I get my stents out in two weeks at the urologist's office.
I took my BP today, 112/67, and I looked up at the ceiling and thanked my donor. (I am not on any BP meds)
Today, I'll take a walk down the hill to mail a netflix movie back, and stop at the bodega to buy some roast beef and provolone to make a sandwich for lunch.
Since I joined IHD, I've tried to make a point of documenting each experience, starting with my NxStage Training, then the colonoscopy, and now the transplant. Epoman started this site in the spirit of sharing, and I try to follow his lead. All of us sharing our ups and downs, I think is a living example of the Halo Effect http://www.billpeckham.com/from_the_sharp_end_of_the/2008/10/the-halo-effect.html, something that Bill and Alison Hymes have written about. To quote part of Bill's blog:
Alison is exactly right - everyone on dialysis should know the successes, should know the stories of those who have succeeded in living their lives despite having CKD5 and needing some sort of renal replacement.
I'm lucky - health wise (fingers crossed) everything has gone well. Administratively - well, that is a totally different kettle of fish. (I have to deal with Medicare today)
IHD has helped me so much since I discovered it back in January 2007, I've met amazing people, I have a resource of what it is really like out there for people in various stages of kidney disease, not just the scientific part, but the whole rollercoaster ride. I am glad to share my experiences, because I feel that I am giving back after receiving so much.
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MIbarra,
That was the best report i have read in many years if not ever. Medical or otherwsie.
pain-fear-fun sad-happy-joyous-RELEIVE & reflection..
What more can i say except Congratulations :-)
p&k
Ps. November is a great month. Your part Scorpio now since your rebirth :waving;
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Thank you for all the details Anna. It was great to hear your story.
I was wondering what kind of questions you asked about the donor. Since Jenna had a living donor that's one thing we didn't experience. You are so thorough I imagine you were prepared to learn as much as you could about the kidney you were to receive. The time and excitement make this a daunting task, something I always worried about if Jenna got "the call."
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I was wondering what kind of questions you asked about the donor. Since Jenna had a living donor that's one thing we didn't experience. You are so thorough I imagine you were prepared to learn as much as you could about the kidney you were to receive. The time and excitement make this a daunting task, something I always worried about if Jenna got "the call."
Since organ donation is a private, anonymous act - -generally, you are told very little, there are ethical considerations in order to make informed consent, ie is the kidney extended criteria (mine was not); you are also informed if there are any medical exceptions (CMV status etc).
My surgeon knows that I am writing publicly about this, and with respect to the donation process, I am just writing age, sex and cause of death.
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Of course, I didn't mean I wanted the specific answers in your case, just the questions a person might have in mind in case they are called. Once when Jenna got called we didn't know what to ask, I felt totally unprepared. The next time the transplant coordinator was more forthcoming with age, sex, cause of death, HIV and HBV status, CMV, antigen and crossmatch info. We were interested in learning about lifestyle info, such as drug use, employment exposure, and what medical history was available. Since Jenna was 6th and 2nd when called, we didn't ask much. Apparently each transplant center is different in what they will tell you.
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Anna you did a fantastic job of writing your story. I felt like I was there along side you during the process. You are a very eloquent writer, an excellent trait to have. I hope your kidney lasts a lifetime and I am privileged and proud to be your friend and to have had the opportunity to share this most special occasion.
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Thankyou for such stirring sharing about your transplant journey so far :2thumbsup; My caring thoughts and prayers are with you, as you keep on keeping on.
Thank you too for being one of those who facilitated my trip to Vegas. :cuddle;
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Fabulously written! Thank you!
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It was a wonderfully well written account of your transplant. Thank you so much for sharing your adventure with us.
Are you going to party when they come for the NX stage machine?
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enjoyed reading your story! :flower;
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:cheer: :cheer: ANNA :cheer: :cheer: :grouphug;
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:) Nov. 1, All Saint's Day will always be a very special day to me. That's the day that Jenna's transplant coordinator called to tell us that the living donor "is a match!"
Now Nov. 2nd is special too! Anna's kidney day! :cheer: And it's All Soul's Day too.
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Well, I am sitting in an empty apartment. My unit rented a u-haul and took away my machine, pureflow and supplies. Even though the transplant is going great, I have some serious mixed feelings about my machine and supplies being gone. After all that happened in August/September, I feel like my security blanket has been taken away. (I may just have a few supplies "just in case" - you never know when someone might forget to pack drain lines...)
I get my stent out next week, and I am back to work the week of December 15th. I'm still in shock as to the impact that this is having on my life, but I'm lucky to have amazing people for support and comfort. And so it goes, the beginning of another chapter.
Happy Thanksgiving everyone!
Anna
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Anna, I am so happy for you. I actually put off letting them come pick up Len's machine and supplies after his transplant. Like you, I felt like it was some kind of security blanket or maybe things would be jinxed if I let them come get stuff. Funny how your mind plays games with you. Please continue to let us know how you are and good luck with returning to work. Don't overdo yourself and remember to drink plenty. :cuddle;
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I feel the same way about my fistula that stopped working the day after surgery. I want to talk to MY nephrologist before I allow anyone to touch that arm! It was never used, but still my "security blanket". I hope I never have to use it EVER!
Congrats again! I get my stent out on Dec. 22nd. Let me know what it's like!!!!!
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I know what you mean Meinuk. I put off sending my insulin pump back for sometimeand ordered insulin just for back up purposes. I had to send it back though, Medicare was renting my insulin pump from the manufacture. But even though my graft is somewhat working, I wish the would take it out. It just looks so bad to me.
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And so it goes, the beginning of another chapter.
Happy Thanksgiving everyone!
To a long and healthy kidney!
And have an extra yam for me.
8)