Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Nowhere to turn.


  • Please log in to reply
17 replies to this topic

#1 NorthStarHope

NorthStarHope

    Senior Bronze Member

  • Members
  • PipPipPip
  • 72 posts

Posted 26 November 2010 - 08:12 AM

Well, haven't written much lately about my sister, only because I don't want to invade her personal life too much, but this has been so trying for our family as well.

I think this must make fifteen hospital visits in the last few months, I'm not really sure anymore. I'm at a total loss for words. My sister came home from the hospital the day before thanksgiving, and back to the hospital thanksgiving night. I don't even think she was home for 24 hours this time.

Water keeps collecting around her heart. They are talking surgery, but she believes her skin will not heal because of it's texture. I mentioned to her that they now have something called robotic surgery; healing time, they say, is much faster and the incision they claim is smaller. They also say it is less traumatic to the body.

I wish I had some answers for her :( Just hoping for some good news. Thanks to all for being there :) truly feeling some mixed emotions. :crying:

Sincerely,

northstarhope*

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


#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 26 November 2010 - 08:52 AM

Hi NorthStarHope,

I'm sorry your sister is in the hospital again (and again, and again).

It's my understanding that usually there is normal healing in people with scleroderma. So she shouldn't shy away from surgery out of her own fear, especially if her doctors are recommending it.

Even if there's some difficulty healing, that is typically not life threatening whereas fluid build-up around the heart can be. So perhaps her doctors will be able to talk some sense into her. I believe for something like this, they only put a needle in and drain the fluid out; it's not like it's a large incision or anything.

But of course, I'm not a doctor, I have no medical training; nor am I a patient in her position. They do advise scleroderma patients to avoid unnecessary surgeries (like for example a breast enhancement) but to the best of my knowledge, they do not advise us to avoid necessary surgeries. Plus, most of us have normal healing from surgeries with no more complications than usual.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Patty Arche-Hueck

Patty Arche-Hueck

    Senior Bronze Member

  • Members
  • PipPipPip
  • 79 posts
  • Location:Miami

Posted 26 November 2010 - 08:58 AM

NorthStarHope,

I am following up,and reading your post is really sad, but we do have good doctors and we need to keep trying to win this battle.

Now all I can do is hug you and tell you that you can vent away with us, so you can be there for her, bless your heart.
Posted Image Patty

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 26 November 2010 - 09:06 AM

Hi NorthStarHope

I'm so sorry to hear about your sister; I was hoping that she had been feeling better. It must be very wearing and worrying for all of your family to have to keep going backwards and forwards to the hospital.

As I have no medical training, I can't really advise on robotic surgery, but it does look as if it's possible to do operations with several small incisions rather than one long one, which might be much better from your sister's point of view. She might then feel confident enough to have whichever procedure her doctors recommend.

Do let us know what she decides to do.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#5 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 26 November 2010 - 10:34 AM

Hi NorthStarHope,

I've had several surgeries, including one major abdominal one, and healed just fine., for what it is worth. Like Shelley says, even if it takes a while to heal, surgery might well be her best option. I'll keep you in my thoughts,
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

#6 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 26 November 2010 - 10:52 AM

I've had a few surgeries in the last few years and have healed fine so I hope your sister can go with what the doctors are suggesting even if it sounds scary.

It can't be easy for you watching your sister go through all of this and trying to stay strong for her and your family so do take care of yourself.

Best wishes,

Buttons

#7 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 27 November 2010 - 01:15 AM

Hi NorthStarHope

Sorry to hear your sister is back and forth yet again at the hospital. I agree with the others, hopefully, she will prioritize the need and weigh the benefits.

It's very difficult to watch a loved one in pain. All you can do is support her and it sure sounds to me like you and the family are doing a great job of that! I'm sure you are helping her much more than you realize. Keep us updated when you can. Take care.
Sending good wishes your way!

#8 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 27 November 2010 - 09:18 AM

Hi NorthStarHope,

Like many of the others, I too, had hoped for a better report from you about your sister.

At any rate, please know that, though I'm not a doctor, I must agree...that what has been done, isn't working.

Therefore, it seems that trust, as well as faith, needs to be put forth, so that the doctors may do what they feel would be beneficial to your sister.

Right now, it seems she is only getting further worn down (physically), which obviously isn't helping her.

With this procedure being the least invasive, I hope that it is at the very least, considered.

I have had you, your sister and family in my thoughts and will continue to do so.

Please, take care of yourself and thank you so much for updating us.

Very {[[[Soft Hugs}}}} for you both.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#9 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 27 November 2010 - 12:25 PM

Hi Northstar,

I join with the others wishing your sister well, and hope warmly they get her sorted out and made more comfortable.

It is very hard watching a loved one suffer, and feeling so helpless. A magic wand to wave it all away comes to mind! :fairy:

The most important thing is to do what you are doing, coming together as a family to be there and to love her. It will give her the will to keep fighting.

Keep us all informed how she gets on, and know we are all thinking and keeping you in our thoughts.

Hugs,

Lynn

#10 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 28 November 2010 - 02:23 AM

NorthStarHope,
So sorry your sister is, once again, back in the hospital and facing surgery. I just wanted to let you know that the incision from my kidney transplant was quite large, from the hip to the groin. I bled for weeks, not because of scleroderma, but because they should have put a couple more staples in the lower part of the incision. I eventually healed beautifully and have barely a scar!

Stay strong and let us know how she is doing.

miocean
ISN Artist

#11 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 28 November 2010 - 12:09 PM

That's GREAT NEWS Star! Thanks for letting us know.

Positive thoughts for your sister's continued improvement.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#12 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 28 November 2010 - 04:28 PM

:happy-day: Yippee! :happy-day:

miocean
ISN Artist

#13 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 28 November 2010 - 07:58 PM

Hi NorthStarHope

What wonderful news for you and your family!! :happy-day:

May your sister continue to improve in leaps and bounds!! :emoticons-yes:

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#14 Patty Arche-Hueck

Patty Arche-Hueck

    Senior Bronze Member

  • Members
  • PipPipPip
  • 79 posts
  • Location:Miami

Posted 29 November 2010 - 09:27 AM

Northstarhope ,I am so happy for you, your sister and your family. Wonderful news, thank you for sharing, and please do not stop. I just came back from some well needed rest, I was reading that she is eating, and smiling. that really put a smile in my face....hugs Patty
Posted Image Posted Image Posted Image

#15 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 30 November 2010 - 11:14 AM

Hi,
Thats great news! :emoticon-hug: :happy-day: :happy-day: :happy-day:

I wish her and you all the very best, and may she continue to thrive and regain her strength.

Warmth and hugs,

Lynn

#16 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 30 November 2010 - 03:10 PM

Hi NorthStarHope,

I hope your sister continues to get stronger and all of this becomes only a thing of the past that none of you has to think about. For her to no longer grace the threshold of ANY hospital is what I hope for all of you.

Continuing good thoughts and {{{{Soft Hugs}}} for you and sister.

We really appreciate your updates about your sister, by the way :thank-you:
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#17 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 01 December 2010 - 02:41 PM

Great news NorthStarHope

I too hope things continually improve for your sister. Keep us updated.
Sending good wishes your way!

#18 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 02 December 2010 - 07:25 AM

That's great news, NorthStarHope. Now I hope she gets out of the hospital soon...and stays out awhile, too!

:flowers:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.