I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: jbeany on October 02, 2009, 09:11:36 AM
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Hi everyone, jbeany's ex-hubby here. It's been a while so I wanted to update everyone on Jbeany's condition.
She had to go in for yet another surgery yesterday, the site that the new pancreas was attached to ruptured again. The surgeons went in and repaired the rupture. They left the pancreas in because taking it out would've been more dangerous. Today she is in ICU, if she stays stable she will be back in a normal room again tomorrow. The surgeons are hoping that the scar tissue from the latest surgery will help the process. She isn't going to be allowed any food or water for 3 weeks, they are doing this because they don't want the site to rupture again.
Best case, she will be in the hospital for another month, although it is looking more like two at this point.
I should get another update tomorrow and will post again.
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jbeany, my thoughts are with you. I went though the very same thing. keep your head up and be strong. the food in a i.v. bag really bites. i did that for two weeks, and well, it sucks. Did they give you meds to help slow down the pancreas from making the digestive enzymes,that help me alot. you will get though this, you are a strong person and my prayers are with you.
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:flower; Sending virtual flowers and best wishes for a speedy and good recovery.
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Oh jbeany, it wasn't suppose to be this hard! I am so sorry that you continue to battle so many problems. You have many people thinking of you everyday and saying lots of healing prayers for you. You are strong and will get through this, but I know you wish the road wasn't so long.
Jbeany's ex--thank you so much for giving us updates. We love her and worry about her so much. :grouphug;
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jbeany, my thoughts and prayers are with you...stay strong!
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Sending love to you!
:-*
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Sending thoughts and :flower;
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:flower; :flower; :flower; thinking of you and praying for the best
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Thank you for updating us, please tell Jbenay that we all send love and healing wishes. I'm going away tomorrow for a while and hope things will go OK while I'm away. xxxx
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Oh poor Jbeany...
I'm SO sorry to hear how hard this is for you!.... I'll be thinking of, and praying for you...
Jbeany's ex... Thank you for keeping us informed... You're one in a million!...
May God bless and protect you both...
Love...
Darth....
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Oh, I am so sorry that this has been so hard! :grouphug; :grouphug;
Jbeany, we are all pulling for you. I hope you are finding positives to keep your spirits up. :flower;
Ex, thank you so much for keeping us informed. We care.
Aleta
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My loving prayers and thoughts are with you.
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Wow.
JB, you are in my thoughts every day. Paris is right, it wasn't supposed to be this hard. You can do it. September came and went, and October will soon pass. I hope your body heals and your mind stays uncrazed as you are healing.
We need you.
Love,
Anna
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Sorry to hear jbeany, this bites that your having such a hard time.
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My dear IHD friend,
I am so sorry that you are having a hard time.
Please know that we are thinking about you and praying for you.
I hope that you get through this and that it is just plain sailing from now on. :flower; :grouphug;
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Oh this is terrible. I hope things get better soon!
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Thanks for the update.
I send my best wishes to Jbeany
and please let her know that
I keep my fingers crossed for her
and hope she has a speedy recovery.
Kind regards from Kristina.
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Hi everyone,
Janel is out of ICU already and back to a normal room. She was up and watching football today (not her choice) and her mood was excellent. She currently has three drains in to try to help with the bloating. Both the pancreas and kidney are still working fine. All in all her road to recovery is currently back to normal. Still needs a lot of rest but doing better.
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We love every tiny bit of good news :2thumbsup; So glad she is out of ICU but very sorry she has to watch football :rofl; Tell her we want her to keep resting and healing. And we love her!! :cuddle;
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She is going to be one pissed off Cowgirl once she gets out and can get a hold of the idiots that let this happen.
Get better fast JB! :pray;
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Glad to hear the progress is better. :2thumbsup;
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:flower;
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will pray for her recovery :flower; :grouphug;
:guitar:
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Thinking of you very very regularly jbeany and sending my love also. :cuddle;
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:grouphug; :grouphug; :grouphug; :grouphug; :flower;
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I will have to look for a funny and uplifting card. Well not to funny, don't want you to be laughing and hurting at the same time. :oops;
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Thank you so much for the update -I have been thinking about Janel and keeping her in my prayers.
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Do we have an address for cards to send to JBeanY or am I behind the times here?
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Yes we do kitkatz, you had to PM Okarol for it so it would not be public.
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I have it now, so you can PM me, Rerun~
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Thank you for the addy.
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glad to hear she's out of icu.
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So sorry to hear of the many issues, pray all wil heal in quick time! HUGS !
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Hi everyone. Got another update this morning. At this point the docs are saying that she is still leaking internally, however no surgery at this point. They have her going down for daily ultrasounds to check the progress of the healing. They are starting her on a new pain patch today to try to get that under control. Also no food for 6 weeks and at least 2 more months in the hospital.
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Again, thank you for giving us updates. We just sit here and worry until we here something new. Two more months -- I hate that for her. I'll keep praying for a little postive progress everyday. Please give her our love :grouphug;
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:thx; so much for the updates. Please assure Janel that a loving group of people are here sending her caring thoughts and prayers. We do appreciate you keeping us updated on her progress. :cuddle;
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Wish there was better that they could do for Janel, this is frustrating and sad to hear and I wish her all the best for a much better recovery. To bad they didn't have medical grade duct tap to use or some really good super glue to stop those leaks.
I hope Janel's spirits are not getting to down, but totally understandable if she has trouble.
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I am so sorry to hear about the rough times you are having.
This can't be easy for you and your loved one's. I hope the hosptial takes good care of you and has you on the road to recovery.
Thanks for the updates.
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:grouphug; :grouphug; :grouphug;
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a month without real food??? gosh....
what was a beautiful surprise and promise of something much better has become a real ordeal for her. I hope SO MUCH she pulls through with everything intact!!!!!!
I still remain positive for her that things will work out and she will be back with her kitty before she knows it!!!
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Still sending hugs your way Janel.
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Many, Many hugs.
:grouphug; :grouphug; :grouphug;
Just wish I could come and sit with you for a while to help pass the time....
Thinking of you daily.
Aleta
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Another few months!!!!! hang in there!!!
hugs
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Janel, I'll go with you sister to hunt the bastards down that did this to you!
Hang in there! :boxing;
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Prayers and Good Thoughts, go up to Jbeany and Family Tonight.
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Hi everyone, sorry I haven't given you a Janel update in a few days, this two jobs thing is keeping me busy.
I've been texting back and forth with Janel every day and her mood is excellent. I made her laugh the other day with kind of an adult style smart ass remark and she said I wasn't allowed to do that cause it hurt too much, for just a word to the wise, no jokes....
The latest update I have is that they are going to "re-evaluate" her on Monday and possible send her to the rehab unit, however still no food for 6 weeks. The nose tube has come back out and her meals are in little hanging plastic bags.
She says she is getting "beat up" by their PT staff on a daily basis, but she doesn't mind being sore for those reasons.
That's all I have for now. I'm sending her your love.
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Oh I am so glad to hear she's laughing, that makes me happy!
Thank you for keeping us posted.
:thx;
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Great that her mood is good. It sounds like a tough recovery. Go JBeany Go! :bandance; :bandance; :clap; :clap;
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So glad to hear that her humor is intact! :clap;
Laughing may hurt, but it is great exercise! :rofl; :rofl;
Thanks for sending her our love.
Aleta
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Good to hear a little improvement has been made
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So sorry to hear all of this JBeany. I know you are tired of it. My
prayers are with you and I pray for a quick recovery for you. Hang in there girl.
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Glad to hear her spirits are lifting , it must be so tough for her right now !
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Please keep sending her our love - loads of it :grouphug; and :thx; for keeping us posted, I check every day to see how she is doing.
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:2thumbsup; great news.
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Hi everyone - it's jbeany in person this time! My family brought me a laptop to use, so I can get caught up on all the posts here. It's been one heck of a bumpy ride. As my doc said, only 10 percent of pancreas transplants have complications, but when they do happen, they are very, very complicated indeed. Currently, I'm on the second week of 6 total of no food except IV nutrition. My small intestine perforated and began to leak thru my abdominal incision. The surgeon wanted to remove the pancreas, but it was too well imbedded to safely remove at that point. The current plan of action is to do nothing, and hope the leak will seal and scar together on its own. In the meantime, I'm working on regaining muscle tone lost from a month of bedrest. That is being complicated by a hemoglobin that has dropped to 7. The last few days, I've been too dizzy to sit upright. I can't tolerate oral iron, so it took a bit to convince the docs that I needed IV iron. I finally got my first dose of that last night, and it's working quickly for me - I'm sitting upright typing this now. They are hoping to transfer me up to the rehab section within the next week, so hopefully the rest of the iron kicks in for me soon. I will be able to go home with the iv nutrition, so hopefully I won't have to spend the next 5 weeks in the hospital.
One of the patient ed things I've got here says to expect to spend 2 days recovery time for every day of bed rest. I was on bed rest for 5 weeks straight, so it's going to be a long time before my life is back to some semblance of normal. I'm trying to focus on the long view- a couple months recovery will be worth it if I can be healthy for years to come.
On the bright side, my kidney is working perfectly, with a creatine holding steady between .8 and .9. My pancreas is working, too. I haven't needed insulin or dialysis in month! I've been using a lidocaine patch during the day, which is surprisingly effective at controlling the pain from my jp drains and my poor, overused incision.
I want to thank everyone for the cards, balloons, and well wishes you've posted! Okarol called me before she left for Paris, and we had a lovely conversation. Her postcard said she lit a candle for me at Notre Dame- now that's calling on the direct line!
I'm going to try to catch up on some posts now - I'm a month out of the loop on everyone else's news!
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I'm so sorry you're having to go through all of this but glad to hear you're still laughing.
All the best to you. :cuddle;
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What a ride Jbeany. I've been on the wrong side of 1 in 10 odds so many times that when I hear 10% of the time this or that will happen I assume it's going to happen.
Not needing dialysis or insulin for a month is pretty exciting, with that working getting over the bed rest will go by fast.
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It is WONDERFUL to hear from you Jbeany! :clap; :clap; :clap;
I know you are one determined lady and you WILL regain all your muscle tone. :2thumbsup;
Keep getting better and better!
:flower; :flower;
Aleta
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Just think, you will be all skinny when this is all over. :rofl;
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I wish you all the best and a good recovery.
Kind regards from Kristina.
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On the bright side, my kidney is working perfectly, with a creatine holding steady between .8 and .9. My pancreas is working, too. I haven't needed insulin or dialysis in month! I've been using a lidocaine patch during the day, which is surprisingly effective at controlling the pain from my jp drains and my poor, overused incision.
Fantastic!!!!
:-*
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jbeany....It's great you are finally on the road to recovery! I am thrilled for you. Being stuck in the hospital you're missing the beautiful fall days but hopefully you'll be home before you have to follow a snow plow just to get there! If you ever get the chance to come to Vassar with Lynda, please let me know. I'd love to meet you.
Pam
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jbeany...you have no idea how thrilled I was to read a post from you yourself!!! I am wishing for steady healing so that you can get back into your real life and enjoy those functioning organs. Many hugs and all best wishes.
Gail
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Great to hear from you jbeany. :bandance; :yahoo;
Sorry to hear you one of the unlucky 10% of the people part. Just goes to show how many of us have had it easy (easier) with our transplants even though we didn't think so at the time.
Concentrate on your goal of getting out of rehab ealy and getting home to rest comfortably in your own home. :2thumbsup;
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Take care and keep on getting stronger ! :2thumbsup;
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Well, reading your post was the best thing that I have read in a long time. I am so glad things are starting to move forward. It was so good of your ex to keep us updated. Keep resting and get your strength back. With the 10% odds, you need to go to Vegas! You should win the jackpot! Take care. We love you. :grouphug;
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JB - I am glad to hear from you!
I also lit a candle for you at Sacre Coeur - so let's hope it helps to send some healing your way!
Best wishes to you!
:cuddle; :cuddle; :cuddle;
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:flower;
Yay JB! At long last you are sitting up and typing!! I am doing a little happy dance down here. :bandance;
I am so happy the kidney and pancreas are doing there job and it is all starting to go forward.
{{{Hugs}}} :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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:yahoo; I am so happy to hear that your kidney and pancreas are working. :2thumbsup;
:bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;
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That's FANTASTIC news, Jbeany... :bandance;
So good to see you getting back to yourself....
May God bless and protect you.... :grouphug;
Darth....
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My hemoglobin made it up to 8.6 today. I managed to stand and walk a bit for the first time in a few days. I've been doing a lot of stretching exercises in the bed that PT gave me. I've done so much out of frustration the last couple of days that I was sore and had to stretch everything out to get moving! The docs describe me as "motivated" - lol. I still won't be able to move up to rehab yet. Too dizzy still, and not enough stamina to do the amount of PT in one sitting that the acute rehab expects of their patients. I'm gonna make it, though - no surrender!
I got on a real scale today while I was up walking with the therapist. I'm 10 kg's over where my dry wt was on my last dialysis run, and it's all fluid gain. I can't wait for the rest of it to go away! At one point, I was over 35 kg's up in fluid wt, so 10 really is an improvement, even if my legs don't look like it! Of course, after all this, I have no idea what i REALLY weigh. I may not need to diet much after all this - I might be awfully close to my final wt goals.
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GREAT to see progress, Jbeany...
I hope it all continues to go well, and that you're soon back to your usual frisky self!...
By the way, I love your atavar... Such a tidy kitty!.....
God bless.....
Darth...
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Wow , arent you making leaps and bounds ! I admire your determination ! :2thumbsup;
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Your doctors are right. You are determined and motivated! And an inspriation. It is so good to log on and see your posts again. We have missed you. Don't push yourself too hard. But I know you want out of there as soon as possible. Hoping each day you feel a little stronger (and with a little less flluid!)
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Excellent news jbeany so glad you're on the mend. :grouphug; :2thumbsup;
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:flower; GO JB GO!!! :cheer: :cheer: :cheer:
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So happy to know things are going better for you. Never surrender.
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Keep up that attitude jbeanyand keep to your goal. You'll reach it.
Bet you can't wait for a shower though!
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You are an inspiration!!!!!! Keep it up.
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Good news jbeany, !!!! Stay tough you are doing wonderful, at last. :grouphug;
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JBEANY!!!
:clap;
It is so good to see you here. I am glad you a finally headed down the right path. "Determined and motivated" Give 'em hell Janel!
Alene and Rolando
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So great that you are able to post now. I will continue to pray for your recovery to stay on a "forward" motion!!! Like you said, in the scheme of things this will be all worth it down the road when you are living your life without needing insulin or dialysis!!! :cuddle; :cuddle; :cuddle;
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I like to hear that you are doing better! Hurray!
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Amazing how important the little victories become. You have no idea how wonderful it is to be able to get out of bed or a chair without needing assistance just to stand up! Being able to go to the bathroom alone again is great, too!
I've been placed on the waiting list for acute rehab. I move upstairs as soon as they have an available room. They aim to have their patients ready for check out in two weeks or less, so I hope I don't have to wait long.
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:flower; :cuddle; :flower;
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:2thumbsup; Keep up the good work Janel!!
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:clap; Keep the feet going one in front of the other. :cuddle;
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Yes, small victories are important that are sometimes forgotten over time. It's amazing how many people come rushing to your room because one decides (me) to sit up over the bed when they tell you to call for assistance to get up.
Next big goal for independence is a shower without being checked on evey second to see if your ok. Hope you can be one of the odds who get's out in less than 2 weeks Janel.
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I know you're a fighter, jbeany!
:boxing;
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I am so glad to see you here!!!! I have thought about you so much- its so good to 'see' your voice again!!! :clap; :clap; :clap; :clap; :flower; :flower; :cheer: :cheer: :bandance; :bandance; :grouphug; :cuddle; :beer1;
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Jbeany, you inspire me so much. I'm actually crying. But happy crying. Happy for you being so darn determined and upbeat when you post here, and happy for me for having things so much easier than you do right now.
:flower;
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so good to see you back on , your in my thoughts alot keep it up JB your an inspiration :cuddle;
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I scared the stuffing out of the aide today. When she walked in, I was up, decluttering my bedside table and putting all the stray supplies away. "WHAT ARE YOU DOING???" "Occupational therapy." She hadn't been assigned to me for a week, and when she was here last, I couldn't even stand up without help!
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That's my girl! Love hearing of your progress! :clap;
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Keep up the good work.
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So glad to hear that you are so perky! You just keep on keeping on, girl! We are with you all the way :grouphug; Can't tell you how good it feels to read your posting.
[Please let your ex know how much IHD appreciates him keeping us up to date on your progress. Most of the time he was our only link with you, and we want to say thanks]
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Just keep swimming , just keep swimming....... just keep swimming.
Taken from Finding Nemo. It seems appropriate.
GO JBEANY GO!
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How wonderful to see you posting JBeany. Now you just keep on keeping on. Before you know it you'll be home doing a trot.
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Insurance! They havge a set of criteria for qualifying for acute rehab. Thanks to all the time I've spent on my treadmill, I can walk much farther than their allowable distance. I can't, however manage stairs at all yet, and even rolling myself in and out of a bed without handrails is still impossible. But because of the walking, they won't pay for the intense rehab. Looks like I'm staying in my regular room and working with the regular therapists instead of the specialists. Ahh, well, I'm still one step closer to getting outta here!
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If the doctors really want to help you, hey will contact the insurance company to help plead for you. Also if you use twitter and you have BC/BS, they pay attention to complaints according to the news. But a good old fashione phone call and pleading your case with some arguing is the best rute and ask for their supervisor. ;D :2thumbsup;
Don't give up yet on the idea of the rehab center. Are you using a support cane to walk around? I hope. Hopefully they have a mini step to practice stair climbing. Fire xit not the best route to try yet for you.
Good Luck jbeany.
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They worked it out, and I got transfered up to acute rehab yesterday. They did evals of my physical condition, and have set a busy therapy schedule, and atentative discharge date of the 27th - 2 months to the day since the transplant!
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Well that is good new in one respect and a pain in the :sir ken; in another aspect due to all the intense rehab. However it will be worth it in the long run.One short hurdle left and you'll be out Tuesday :yahoo; :bandance;
Good Luck Janel, but be sure to use :Kit n Stik; if need be with the therapist :2thumbsup; :rofl;
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Keep it up JB!
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:cuddle; :beer1; :flower;
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Great news
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PT and OT are kicking my butt in twice daily sessions with each of them. I'm making excellent progress, though. If it weren't for all the training I'm going to need to do for the IV nutrition and my wound care, I think they would have sent me home today. I've got training sessions for self care all day Monday, and then I'm hopefully getting sprung from the joint on Tuesday morning. They are still messing with my tacro levels, so hopefully that won't hold things up. They aren't quite as bad about waking you up in the middle of the night here as they were on the regular floor, but they still come in a couple of times a night. I'm really looking forward to a regular bed and no interruptions to my night's sleep except a potty break or two!
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:boxing;
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You've come a long way baby! :2thumbsup;
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Way to go JB. So do you have a break during the weekend?
You can do it JB, you'll get out by Tues or on Tues.
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We are overjoyed at your progress. :2thumbsup; And we know you will get better and better and better. :cuddle;
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This is good news. Things are improving. Lucky you're a fighter!
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:bandance; :bandance; :bandance;
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so glad that you are doing better, keep up the good work and get sprung soon.
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That's great news!!! Some real progress is worth celebrating!!! Let's hope it continues to improve for you!
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Home is where the healing can really start. Nothing like your own bed. Hope it's soon.
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YEAH FOR POTTYBREAKS!!!!!
Good to have you up and "running"
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Are you home yet?? :pray;
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Jbeany--one of the strongest people I know :2thumbsup; We are thrilled at your progress and will rejoice when you are sleeping in your own bed!! Sending you much love and many healing thoughts :cuddle;
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Damn you are awesome jbeany. I remember crying after a week in hospital following my transplant. I was all packed and ready to go, and they came in at the end of the day and asked me to stay for an iron infusion. I just burst into tears and promptly refused to stay another night. Said I would come back in the morning for the infusion, but at that moment, I was going home to SEE MY DOGS GODDARNIT!
I was such a wuss. You keep up the toughness, girl. Let yourself cry if and when you want, but don't let that ruin how strong you are in the long term.
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Whew! My borrowed laptop crashed, so I was stuck. I got stuck at the hospital, too. I was supposed to be discharged on Tuesday the 27th. My labs came back that morning with high potassium. With all the messing around to find the cause and fix it, it took them until Friday to finally release me! I'm settled in at my sister's house now, and plugging thru my last couple of weeks of IV food. It's soooooo nice not to have anyone but the cat waking me up in the middle of the night! I'm still low on hemoglobin, and working on muscle tone, but it's fabulous to be in a real house with family!
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:clap;
Getting out of that place is enough to make you feel like a new person. I am so happy for you!
I just got home Bay City. D day and it spit snow flurries most of the way. Just think what you have to look forward to.
Pam
Edited: Fixed smiley error - okarol/admin
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Welcome home (to your sister's)!
8)
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:2thumbsup; Good to hear you've been sprung JB! I hope each day gets better and you can sleep better and heal! :cuddle;
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So glad you're finally out of hospital!!! Keep us posted.. :flower;
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So happy to read`that your out of hospital and doing so well keep it up JB :flower;
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Congrats on finally getting out Jbeany. Now recovery can really begin with finally being out and out in fresh air.
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Out, in, in, out. Looks like I'm headed back in for a few days. The 8 inch long, 2 inch wide incision I've been left with after 4 surgeries thru the same site is not healing well. The last complication I had, and the last surgery, was because my small intestine perforated where they attached the pancreas to draim. My small intestine's contents then began to drain thru my incision. (EEEEEwwwwwww! I know, I know.) The hole it's draining thru is still not completely sealed, so the pancreas bile is still dripping out onto the incision. The bile is disintegrating the healing tissue, so they need to do something a bit more than the regular dressings I've been doing so far. They gave me an assortment of ointments and powders to try for a week, but if it doesn't improve by my return clinic visit on Tuesday, I'm back in the hospital until they can figure out something better. I'm guessing there's a wound vac in my immediate future.
So, here we go again. I'm packing a bag to take with me on Tuesday.
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Oh man, that sucks. I hope they can install a drain or something and get you back home soon. Sending some extra healing prayers your way Janel! :grouphug; :grouphug; :grouphug;
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Glad to hear that you are out!!!!
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Janel, what a time you've had...and we all want things to improve for you soon. :grouphug; Damn you're tough! And you really deserve a big break here.
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Oh Janel, what a mess. I am so sorry to hear this. Bless your heart you are in my prayers. You deserve a break.
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The three most dreaded letters in the alphabet - NPO. It's now been 5 weeks, going on 6 with no end in sight. Heck, and I used to complain about the food and diet restrictions on dialysis! I'm now on liquid nutrition thru an IV, and only enough water to get my pills down - that's less than a cup a day.
Just for fun, today I made Tollhouse cookies for my family. Man, it's hard to remember not to lick the spoon!
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Wow! You are a brave lady.
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MMMMMMMMMMMMMmmmmmmmm cookies :cookie; :cookie; :cookie;
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Sorry to hear your still NPO jbeany, hope that ends soon.
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Jbeany, you are amazing! I wouldn't be able to do it.
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Made apple-banna bread today.
On the positive side, the leak from my small intestine to the surgical incision appears to have sealed over!!! They are giving it another week to strengthen, then they plan to schedule another barium scan to make sure all the parts are in working order. If all goes well, I get to start on jello and broth in a couple of weeks. Break out the chicken and the veggies - I'm making my own stock for broth. . . then it's time to break out the baby food mill!
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Jbeany, I think and pray for you everyday, you are one tough cookie~!
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Good news, Jbeany! Great to hear this.
I don't know how you can bake when you can't eat it! :bow; :bow;
You are awesome! :cheer:
Aleta
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On the positive side, the leak from my small intestine to the surgical incision appears to have sealed over!!! They are giving it another week to strengthen, then they plan to schedule another barium scan to make sure all the parts are in working order.
I love the taste of barium in the morning! :o
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Sounds like things are going in the right direction. :2thumbsup;
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That's good news jbeany, but sorry you have to drink the barium :puke;
Gotta love that clear liquid diet, then liquid diet, followed by soft food diet (still wondering about this one I'm on), and finally solid foods. :bandance;
Baby Steps better than baby food?
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Mmmmmm :bandance; banana bread.
I don't know how you do it, the smell of it is sooo good!
I am so happy your leak is healing! That's great!! :clap;
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You are amazing! glad to hear you are progressing well...:)
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I sent you a card, but they sent it back because you were discharged! I will remail it.
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So glad to hear you are home and the leak has been fixed. How in the world can you bake a banana ~ apple cake and not eat a bite of it? You
are a strong woman JBeany.