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Gareth update


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#1 Margaret

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Posted 20 August 2011 - 05:58 AM

Hi Everyone,

As usual, I need some advice and want to know if others have had similar problems.

Gareth's been having intermittent, severe pains (RLL/RUQ) since the middle of June. He's down 15 pounds and running a low grade fever on and off. All blood work, CT Scan, X-rays, Gallbladder ultrasound, and Endoscopy have been *negative* for anything. The pulmonary doctor said it was Pleurisy, but he didn't see him and the primary care physician said it wasn't.

The pain went away for about a week, but came back with a vengeance this past Sunday. They plan to do an exploratory laproscopy next week for Gallbladder Colic and also take out the gallbladder -- just in case that's the problem. My concern is, what if that isn't the problem? This week, I started him on the *Gallbladder diet* but it really doesn't seem to be helping him much. Has anyone had gallbladder issues related to scleroderma that did not show up on testing? Would Sclero cause problems and not be seen on testings?

Thanks everyone,

Margaret

#2 Shelley Ensz

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Posted 20 August 2011 - 08:22 AM

Hi Margaret,

I'm sorry Gareth's pain still hasn't gone away.

Please keep in mind that I have no medical training at all, and that I may be wrong (and often am!).

As it happens, I've had both gallbladder issues that required its removal and I've also had pleurisy numerous times since 9th grade. I never ran a fever with my gallbladder problems, but I usually run a bit of a fever with the pleurisy. They both caused me sharp, stabbing, and radiating, intermittent pain.

Pleurisy would definitely reduce my appetite because I feel so overall sickly and fatigued. The last time I had it, I didn't even get out of bed for a few weeks except for very brief forays. But when I was a teenager, the standard slogan around the house was, "It's ONLY pleurisy," as in not pneumonia again, so I was expected to go to school anyway, and really, I would much rather have had pneumonia as generally it was less painful.

At one point my gallbladder hurt so bad in my back that it caused muscle spasms that felt as though I was having a heart attack, but in my upper back instead of my upper chest.

That was my first major gallbladder attack and it happened while we were stranded on an island, in the middle of the night, with no phone (this is back before cell phones) and no ferries running to the mainland. When we got back to town, the imaging studies clearly showed lots of gallstones, my attacks continued but were milder, thank goodness, and I had it removed by one of the best gallbladder surgeons in the state.

I pick surgeons very carefully and ask them their number of surgeries and their success rate. You'd be shocked by how inexperienced some of them can be, especially if they just do general surgery and aren't a specialist in that single area. So do interview his surgeon (or at least his office staff) if you don't already know these things.

The pain I had with pleurisy could be worsened whenever I took a deep breath and would usually let up some (or completely) as long as I could breathe shallowly. It would also be affected by position; sometimes I can get in just the right position to ease it awhile and then I don't want to move a whit.

The gallbladder however would be affected by eating or by hunger and not by breathing, and I could put my finger on the exact spot that it was originating from.

If it were me, I would go to the pulmonologist immediately for a second opinion regarding surgery. If he agrees, then you have achieved two things -- sorted out that for sure it has nothing to do with the lungs, and gotten a second opinion regarding surgery. Whenever there is even the slightest doubt, a second opinion before surgery is always called for. It is not over-use of the medical system, it is actually something that can (and does) reduce unnecessary surgeries thus saving insurers lots of money and provides us with lots of peace of mind.

I know you've been the rounds with this, but I do think one more round would be worth it, just for peace of mind, if nothing else, as I can still hear the doubt ringing in your voice.

Give Gareth an extra hug, just from me, will you?
:emoticons-group-hug:
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 Margaret

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Posted 20 August 2011 - 11:11 AM

Hi Shelley,

Thank you, for explaining, in detail, the pains associated with both. It's hard for me to grasp since I have always been fortunate to be healthy. I am always asking people *Why always Gareth?* I wouldn't mind having something serious once in a while!!! I will call the Pulmonologist on Monday.. He's a great guy and will get Gareth in ASAP.

Thank you!!!

Take care, Everyone.

Margaret

#4 Shelley Ensz

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Posted 20 August 2011 - 11:25 AM

That's great, Margaret!

Let us know how it goes, okay?
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.

#5 Margaret

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Posted 21 August 2011 - 02:17 PM

Shelley....I give up!!! he hasn't been in pain since yesterday afternoon!!! Eating normally....happy as a lark....everything. What gives here?!?!? :emoticon-dont-know:

Take care,
Margaret

#6 miocean

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Posted 22 August 2011 - 07:40 AM

Hi Margaret,
I am sorry to hear about Gareth. I guess not having any pain is a good thing but it is a mystery why it came and went.

miocean
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#7 Margaret

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Posted 22 August 2011 - 01:20 PM

Hi Everyone,

Please, keep Gareth in your thoughts tomorrow. They have decided to take out his Gallbladder (even though all the tests have been negative) and I hope that is the cause of his pain, low grade fever, and weight loss this summer. The surgeon told me the Gallbladder doesn't *play by the rules* and that sludge and sphincter problems can be very difficult to detect.

Thanks, once again, for all your help!!!
Take care, Everyone.
Margaret

#8 Joelf

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Posted 22 August 2011 - 03:17 PM

Hi Margaret,

I am sorry to hear that Gareth will have to have his gallbladder removed.

I shall definately be thinking of him tomorrow and I do hope he makes a very speedy recovery and soon feels much better.

:emoticons-group-hug:

Jo Frowde
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#9 Shelley Ensz

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Posted 22 August 2011 - 09:43 PM

Hi Margaret,

Oh my goodness! Please let us know as soon as you can how surgery went! And give Gareth an extra huge (but soft and gentle) warm hug, just from me.
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#10 Margaret

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Posted 23 August 2011 - 05:33 AM

Morning Shelley ,

I tried to get him in to his Pulmonary doctor but he's not avaiable this week (vacation). The surgeon that is wlling to do it is a friend of the Gastro doctor and he's leaving Sat for vacation. It's today or wait another two weeks. They are concerned about G's low grade fever that he's had on and off for 2 weeks...especailly since he's got those Imunno deficiencies. I will keep all of you posted.

Thanks everyone,
Margaret

#11 Jeannie McClelland

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Posted 23 August 2011 - 05:44 AM

Best of luck to you and Gareth!
Jeannie McClelland
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#12 Margaret

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Posted 23 August 2011 - 01:40 PM

Hi Everyone,

Gareth came out of surgery fine. The surgeon said his gallbladder was dilated and the bile duct very long and restricted which is not a good combination. His said the pathology report will let them know if it's Sclero related.

Thank you all for keeping him in your thoughts today. You guys are the best!!!

On a side note, Ter and I were sitting in the recovery waiting room when the ripple of the Virginia earthquake went through. We looked at each other and said, "Earthquake?!" The irony is that we left Brea, California because of the earthquakes! Who would have thought we'd feel one in the central Pennsylvania mountains!

Take care, Everyone,

Margaret

#13 Jeannie McClelland

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Posted 23 August 2011 - 09:09 PM

Great news about Gareth! :emoticons-line-dance:
Jeannie McClelland
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#14 Shelley Ensz

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Posted 23 August 2011 - 09:26 PM

Hi Margaret,

I'm totally delighted that Gareth came through surgery alright!

I hope that totally resolves the issue, and that he makes a good recovery. I'll still be sending lots of good, healing thoughts your way.

:emoticons-group-hug:
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.

#15 Joelf

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Posted 24 August 2011 - 12:51 AM

Hi Margaret,

I'm so pleased to hear that Gareth's surgery went well. :emoticons-line-dance:

Here's hoping he makes a really speedy recovery!

:emoticons-group-hug:

Jo Frowde
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#16 Amanda Thorpe

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Posted 24 August 2011 - 01:31 PM

Hello Margaret

I'm glad it went well for Gareth, he's one tough cookie eh?

Take care.
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#17 Sheryl

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Posted 24 August 2011 - 03:53 PM

My reply dissapeared about half way through. Poof! I wonder how that happens to us occasionally.

Anyways, Margaret I am happy to hear that Gareth came through the surgery quite well. Let him know that all your friends here on the ISN fourm think of him often and wish the best for him. I would wish for no pain but that is part and parcel of this disease or life in general I've come to understand.
Strength and Warmth,
Sheryl

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#18 red

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Posted 25 August 2011 - 06:15 AM

Hi, hope Gareth is recovering nicely and that the surgery takes care of his pain.

I had gallbladder-like attacks for years, but ultrasounds were always normal. Finally had a HIDA scan which showed dysmotility of the gallbladder, had the cholecystectomy, and never had another attack, thank goodness! Surgeon said my gallbladder was large and filled with sludge. Wasn't diagnosed with sclero til years later, but my rheumatologist thinks the gallbladder dysmotility was an early symptom of the scleroderma.

I'm in upstate NY, I personally didn't feel the earthquake, but my husband's workplace sure felt the shaking, they evacuated the building but after inspection, everything seemed okay, without damage to the building or equipment. Hope you didn't bring the earthquakes with you from California! :lol:

:emoticons-group-hug: to you and Gareth!

red

#19 janey

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Posted 25 August 2011 - 08:06 PM

Margaret,

I know I'm really late jumping in here, but I thrilled that by the time I saw this that Gareth's surgery was successful and that the gallbladder may have been the problem after all.

I certainly will keep my fingers crossed that this solves the pain and the fever. My thoughts are with you both!
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#20 Snowbird

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Posted 26 August 2011 - 05:43 PM

Hi Margaret

I'm late chiming in too but was so glad to follow the thread to see that Gareth made it through the surgery well. I'm wishing for a speedy recovery!
Sending good wishes your way!