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Update on Lisa (Peanut) from Best Friend

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LISA UPDATE FROM BEST FRIEND SARA

Lisa continues to make big progress. She out of the ICU off the vent and should be out of the hospital in a week and in a rehab center in Chicago after that for another week. Then they will fly her home to Arizona where she will be in a rehab center for at least two months. She had several strokes but all the infections seem to be under control. She is doing speech therapy to relearn how to talk and is learning new words every day. She has begun eating soft foods and hopefully by the end of this week will be able to eat and drink normally. They have one more test to be done on Thursday and if she passes they will take out the trec tube and she will be able to talk, eat and drink normally. She is in physical therapy and occupational therapy and is regaining control of her body. She sits in a chair and stands everyday and is increasing her strength. Today she sat in a chair unaided for 45 minutes yesterday it was 25. She can also sit on the edge of her bed and can now go to the bathroom in a bed pan as all the tubes have been removed. Her mind is getting sharper everday. She understands everything and seems to have all her memories in tact. Her personality is just as sweet and playful as before the transplant and the best part is her lungs are stronger now then they were before she ended up in the ICU! The transplant really seems to be working! She is really on her way now! Please keep sending her your thoughts.

Go Lisa Go!

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SaraNC it was great getting news from you tonight about Peanut. (LISA) We need all the information on her we can get. We have all been very worried about her. Please keep us posted on any little details and let her know we are sending her strength. Tell us more about yourself and your relationship with Lisa. Besides being best of college friends. I'm glad you were able to make it into the chat room and learn a bit about our sclero forums. If you are with Peanut give her a soft hug when you can.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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LISA UPDATE PART 2

I was in the chat room and was asked to give everyone some more details so here goes.

A week after Lisa's transplant she got a bad infection and had to be put into and induced coma and on a ventilator in the ICU. After several weeks they stopped giving her the medication to induce the coma but Lisa did not wake up. They discovered that she had several strokes that sprayed blood clots in her brain causing permenant damage to the right side movement and her speech areas of her brain. She also had blood clots in her legs that caused some wounds but are now healing. She was on a ventilator for over 4 weeks then started to get off of it. She has had some other smaller infections that have been treated but has had a fever pretty much nonstop since she got the transplant. About a week and half ago she was moved out of the ICU to Prentince Women's Hosptial where she was at the time of the transplant. She is now off the vent but still has a trec tube in. She is on less oxygen then before the transplant and they are slowly weaning her off oxygen altogehter. Her lungs are stronger now then before the transplant which is truly a miricle given that she spent 4 weeks having a machine breath for her. Her skin has softened and is beautiful. She is begining to grow her hair back and has eye lashes and eyebrows. She only started moving both sides of her body last week. It was very exciting. She can now move every part of her body when asked to do it. The last area she is working on is her mouth and tongue but this is coming together as well. She can now sit on the edge of her bed and in a chair and can stand up with assitance. She can lift both arms and squeeze both hands. She has a long way to go before she will be walking and moving like she used to but she is on her way. She understands everything and has no problem responding by nodding her head, smiling, frowning, smirking, rolling her eyes or lift her body. She is learning new words. Her very first words were HI and Hubby what she calls her husband. I asked her say Joey her husbands name and she said HUBBY! Lisa still has her wonderful personality and cheerful smile. She truly wants to get better and get back to her life. She is trying very hard to make big progress. I had the honnor of being with her when she started coming back to life last weekend. Now I am home in Seattle but I call everyday to get and update from her mother in law and talk with her on the phone( mostly I talk and she nods her head and smiles, frowns, smirks ect)

I will post more as I get it. Sara

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Thanks again Sara, you were giving us information in the chat that I wouldn't have remembered to put in here for an update. You came back in the chat and I didn't respond quick enough to your reentry to let you know I was still there. The information you have given us is greatly appreciated. I am happy you were able to be with Lisa.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Thanks for the update Sara, that is truly good news. Recovery after a stroke can be slow and hard work, but its sounds like Lisa is making remarkable progress. Will keep sending healing thoughts.

Lizzie

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Hugs to you, Sara, for coming to the forums to share this with us. It is so good to get an update from someone who has been with her. It is obvious that Lisa is a fighter and I have every confidence she will come out of this a winner. Please keep us posted and let her know how much we are all missing her and keeping her in our thoughts.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Thank you Sara for giving us such a good update on Lisa, it really is good news knowing that she is gradually recovering her strength. Please send her our best wishes and look forward to her being in the chat room in the future.

 

Jensue

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Hi Sara ,

 

Thank you, so much, for taking the time to keep us informed about Peanut. We're all cheering for her!!! I hadn't realized how difficult a path she had been on.......I knew about the ICU but figured that was common for transplant pts.

 

Take care, Everyone.

Margaret

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I didn't have the pleasure of meeting Peanut but my thoughts go out to her! I wish her a quick and rapid recovery! What a great friend to bring everyone uptodate on her progress!

 

 

 

Razz


Live well, Laugh often, Love much

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Thank you for the detailed updates! I was wondering if she was seeing improvements with Sclero related things, like her lungs & skin, so that is so awesome!

 

I saw on "Mystery Diagnosis" (which is kind of funny because when it is your normal you forget it is rare enough to be on that show) ...I think that's the show anyways... a young lady, close to Lisa's age, received a Stem Cell transplant as well & immediately started having results with her skin getting softer & her lungs got stronger. They showed her how she is doing now & other than some scarring from a few things, her skin is awesome & her lungs are great & she gets to do so much... it went well & it sounds like Lisa is well on her way to the same. That is just such a miracle to me!

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Sara,

Thanks so much for the update about Lisa! She has been on so many minds and in so many hearts. It's wonderful to know that she is making improvements after so a long and hard battle. I look forward to more good news.

 

Hugs to both of you,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thanks for the update. It really shows what a fighter she is. She had to fight to get this transplant and she is still fighting now that she has gotten it but she is winning the fight. Please tell her how much we are all thinking of her and how much we are pulling for her to get better and better. She has been in my thoughts and I will keep hoping that she gets her life back before this terrible disease changed it for her.

 

Warm hugs,

 

Peggy

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Guest Sadie

Sara, Thank you for the update! Peanut sure has been through alot.

She is a trooper! Peanut, you are in my thoughts!

Sadie

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Peanut/Sara:

 

I'm trying to find words to express all that Peanut has gone through and all she has to go through in the near future. I can't find the appropriate ones. To risk all, to fight as hard as you are, is proof we need to be the advocate in our health. You'll triumph Peanut, because you believe, you strive and you fight. My thoughts are so with you. You are a hero in the attempt to stem this ugly disease. You took the chance, and you will succeed.


Tru

 

It is what it is...........

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