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Sharonvandee

re Update, surgery, lung

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Been a while since I have been on the site due to a life less then chaotic

 

In the past eight weeks we bought our first home and moved in. Since moving in hubby has been busy renovating the house of dramas :lol: . We have contended with gas leaks, leaking roof, termites all whilst my dad took sick and mum had surgery.

 

To top it all off we got a call last week for me to go into hospital finally for my Nissen Funduplication. I had come to terms with this as my GERD continues to worsen keeping me up at night. When I went for the pre-op visit the anesthesiologist gave me some scary news. My lung capacity had dropped from 85% to 60% in four months. Because of the condition of my lungs he very clearly stated that there are possibly huge complications with the surgery now, but that not doing it could mean further decline. They will be taking extra precautions but I am freaking out.

 

Anyone else had a similar experience or this surgery good or bad I would love to hear from you.

 

Wish me luck.


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Hi Sharon,

 

I had the surgery done in December of 2007. It was a full Nissen (360º) fundoplication done via laparoscope. It went like a dream and I have no symptoms whatsoever of GERD. I sleep like a baby at night and bend myself into pretzel shapes out in the garden. The one downside is that I can now eat anything I want. :)

 

I'll definitely keep my fingers crossed for you! When is the actual surgery? I'll cross everything on the day.

 

Big warm hugs,


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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I too am having the full 360 due to the severity of the GERD.

 

It is on Thursday. Fingers crossed it goes as well as yours did and I can regain some of my life back.


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Hey Sharon, I forgot to mention they fixed my hiatal hernia at the same time. The one thing that cropped up after the surgery was a tendency to get hiccups, but that's pretty much gone away.

 

I'll be thinking about you Thursday. Best of luck!


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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Sharon,

I have no experience to share with you, but I wanted to say that you will be in my thoughts during the surgery and before and after. Sounds like you are in good hands with your anesthesiologist. He knows about the problem and is ready to deal with. That's a good thing. Sorry that you've lost some lung capacity. Hopefully you can deal with that after your surgery.

 

If it's not one things it's another.

 

Keeping you my thoughts,


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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Sharon,

I am so sorry to hear all that you are going through. I will keep you in my thoughts. Don't you have GAVE also?

Take care,

Nan

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I wish you all the best in the surgery! Knowing that the anesthesiologist is on top of it is a great start. I will be crossing my fingers for you that it will go smooth and life will be so much better after.

 

Warm hugs,

 

Peggy

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Hi Sharon, nice to meet you!

 

I had my Nissen done last November. (I have CREsT, have had esophageal/gastric bleeding due to the severe GERD; also have asthma, had pneumonia a couple of times, presumably from aspiration of the reflux; however, my lung function tests are normal when my asthma is under control.) My rheumatologist and surgeon both agreed that a modified (280 degree, I believe) fundoplication was best for me as my esophageal manometry showed "absent" measurable motility. They were concerned that a full wrap would worsen my swallowing difficulties. I also had a very large hiatal hernia to repair, so I was told I had to have the surgery "open" and not laparoscopically.

 

I had the surgery on a Wednesday, came home that Sunday, have to say recovery was rough. The incision was about 7" long, I woke from surgery wearing a large elastic binder from under the breasts to my lower abdomen, had to wear this for about a week. It was painful and difficult to take a deep breath for quite a while - maybe 2 weeks (this may have been more due to the hernia repair than the Nissen, though - hopefully you won't experience this!) Wasn't able to eat much of anything for the first week, and continued on soft foods for another 2 months, and still have to avoid raw vegetables and bulky foods as they are tough to swallow and move down my esophagus. Was back at work after 4 weeks, although probably should have listened to the surgeon and taken the full 6 weeks he recommended.

 

It was all worth it! I am able to sleep with one pillow, through the night, without any sign of reflux. Never have any heartburn anymore. I still do take one Nexium a day -- I did try a month without it, but developed a persistent cough that my GI doctor thinks was because of "silent" reflux -- did go away when I restarted the Nexium. Before the surgery, I took twice this dose plus Zantac too, and still I had daily and nightly horrible reflux.

 

Sorry to be so long-winded, but wanted to give you a complete picture!

 

Are you having yours done laparoscopically? If so, your hospital stay and recovery will be much shorter, as long as you have no complications in your lungs.

 

I do wish you the very best of luck, and will be keeping you in mind on Thursday! Keep in touch!

 

red

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Nan

 

No I dont have GAVE, I do have gastroparesis and both the top and lower spincter aren't working so here hoping I say.

 

Thank you all for your well wishes.

 

The anesthesiologist has been good. He is going to try patches with me to warm me and warned me that if it goes to open surgery which there is a possibility due to having lots of adhesions from previous surgery, he will need to put me in ICU for oxygen therapy. He said that the up side is that my lungs and heart can have a rest.


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Thanks Red

 

They have booked me in for 7 day stay.

 

Not sure yet if it will be open or Laparaoscopy - I am hoping lap. I too have a swallowing problem already, so I'm not sure what to exspect with that and surgeon isn't either. I will also be having my Hiatal Hernia repaired. I know they think it will take about three hours and said it will be complex but I also now that if I don't get it done, my health will deteriorate a lot quicker.


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Hi Sharon

 

Good to see you posting again. You are often in my thoughts. Good luck and I wish you all the best for Thursday.

 

Helen

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Sharon ,

 

Best of luck for your surgery and hospital stay. I wll keep you in my daily thoughts.

 

Take care, Everyone.

Margaret

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