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NorthStarHope

11 hospital visits in two months!

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Hi, everyone

 

This is eleven hospital visits for my sister in approximately two months, who's counting, could be tweleve, I lost track. Its just so very very sad.

 

This time she couldn't breath again, she was hardly home from the last hospital visit, now back again. My mom and I spent hours in the Intensive Care Unit (the nurses were nice enough to let us stay) with her, this is not fun, so heart breaking. I know there are a whole lot of people out there with very serious illnesses, but I just wouldn't wish this on anyone, sometimes I cannot believe that the human body can withstand so much.

 

For all those out there who must know the pain my sister is going through, I truly admire each one, for this is the worst of the worst kind of battle I've ever seen in my life, and that includes movies of which are not real if you know what I mean. I just hope someday things will get better.

If theres a chance for some magic, or a good fairy, she sure needs it now!! :fairy: thanks to all for being there!! :bye: :bye:


northstarhope* :emoticons-i-care:  :thank-you: 

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North Star,

I am so sorry to read about the struggles of your sister. Please know that she is in our thoughts. We hope that she is receiving the best care possible and has found a doctor that truly knows and understands what she is dealing with and can help her get the best medical care possible. If not, then please keep looking until you find one.

 

Lots of hugs to you and your entire family. I know how hard this is on everyone.


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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North Star,

 

I know it might be difficult for sister to get to a scleroderma specialist, but here is a list that might help you. Even if she could only go for an evaluation, perhaps one of these specialists could recommend someone in your area who has more expertise and who you might not otherwise know about. Or, perhaps one of the specialists could work with your sister's local doctors. Does she see a rheumatologist and pulmonologist? Do you know what sort of treatment she is receiving? You mentioned once that she'd been admitted to a different hospital and you hoped that someone there would be of more help. How did that work out?

 

I've got my fingers crossed for her and you and the rest of your family.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi NorthStar

 

I'm so sorry to read that your sister has had to go back into hospital again; I had felt so pleased for you when you said that she had been allowed to come home.

 

I do hope that the hospital will be able to stablise her and that perhaps she may be able to contact a Scleroderma specialist to help her. It must be so worrying to have this constant 'Groundhog Day' feeling of hospital admissions and visits and still your poor sister is not feeling any better. :(

 

Here's good fairy wishes for her :fairy: and a :emoticon-hug: for you!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi NorthStarHope

 

I am so sorry to hear that your sister is still going through so much, my thoughts are with all of you. It will of great comfort to her as well as you and your mom to have each other. Sounds like you have a good all around family support system in place actually. Equally important to hear you feel she does have good medical care surrounding her too. Keep us updated when you can...best wishes for good news!


Sending good wishes your way!

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Dear NorthStarHope,

Your sister and your family are certainly going through a lot. We put a lot of trust in our medical system. My local hospital doesn't have the best reputation, but I spent 3 weeks there when scleroderma first hit me, and several other visits since, and there was only one mistake. They came to my room and said they were taking me for a CT scan. I told them I just had one and they said this one was for my leg. When I questioned them it ended up they had the wrong room! Otherwise I received excellent care. The hospital my scleroderma specialist practices at has an excellent reputation and knows the disease, yet it is a teaching hospital and as one sometimes it is the resident doing the procedure. I had my first endoscopy there and was promised I wouldn't feel a thing but that was not the case and it was a terrible experience. There were several other things I could complain about but won't go into here. So, unfortunately, there is no perfect situation.

 

I hope your sister gets the fluid in her lungs situation solved and that she gets home. I hope she is comfortable and receiving good care. I wish there was something I could do. I'm sure you feel that way, it must be very frustrating.

 

miocean


ISN Artist

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Hi NorthStarHope ,

 

I am sorry to read about your sister and will keep all of you in my thoughts. Gareth had fluid around his lungs and heart 2 years ago, and thankfully, it hasn't reaccurred. :emoticon-hug:

 

Take care, Everyone.

Margaret

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Hi NorthStarHope,

 

I was so hoping that I would only see you here talking about the gains your sister is having...not more hospitalizations :(

 

My heart goes out to your entire family, involved in this emotional rollercoaster ride that each of you is on.

I SO hope they are addressing and then can get your sister to a point of control, where the fluid build-up is taking place in her heart and lungs. I'm sure your sister isn't the first to have such a build-up, so it seems to me that this is something they should be able to CONQUER!

 

Please know that ALL of us who have been following your posts are holding all of you in our hearts and thoughts.

 

{{{{HUGS}}}}} for your sister, you and your mom as you await the report we're hoping for you all.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I truly don't know what I do right now without this forum, its really nice to know there are caring people out there with such kind words. And I just wanted to somehow some way to let everyone out there know that you are my northstar! And I know if my sister could read all your kind words she would feel the same! Im hoping I shall be able to show her when she comes home from the hospital :thank-you:


northstarhope* :emoticons-i-care:  :thank-you: 

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