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Margaret

Gareth Update

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Hi Everyone....as usual, I have been learning so much from everyone. I thank all of you for being so open and upfront about all your 'issues' with this disease.

 

Gareth's rheumatologist e-mailed me last night and told me of his blood work. The ACA is still negative but the sed rate is back up to 62 (it had been down to 48) and his Fibrinogen was 418 (normal is 150-350). He is sending me a script for Plaquenil but said it would take a couple of months to kick in and keep him on the Meloxicam another month.

 

He's got a 'gastric emptying' study scheduled for next Friday to find out why his stomach is 'hard'......as he puts it. Reading about all the gastro issues and Barbs not even being allowed to eat has got to be hard on all of you. It would be VERY hard to explain to Gareth that he couldn't eat ANYTHING.....no way he'd give up his cheeseburger/fries, pizza, Bar-B-Q chips, hot chicken wings!!! Fortunately, those aren't daily eatings. He'd rather suffer than give up food.

 

Take care, Everyone.

Margaret

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Margaret,

I think it's great that Gareth is going to start on Plaquenil. The only problem about the gastric emptying study is staying still for 90 minutes. Of course, they may not do Gareth's that way. I have heard of different ways they do it.

Take Care!

Nan

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Hi Jefa ,

 

I got back about 1/2 hr ago and came straight to the 'puter trying to find info on Gastric emptying.....times, what's normal, etc. Is there anything in the files here? I jotted 2 times down quickly from what I saw.....40% after one hour and 61% after 11/4 hr. Then they let us go home. Gareth had to eat oatmeal with milk. Instead of laying for 90 minutes, he had to sit up in a chair. He did really well.......considering he never tried oatmeal before!!! He kept pushing the bowl away and the tech kept saying 'no....you have to eat all of it.' He was in a lot of pain in the beginning with the full stomach. I hope the tech puts that in the report. Yesterday, his primary care physician called and told me he was positive for H Pyloria...........again. It was from a blood draw on May 17. I have no clue how an ulcer feels but we both agreed that it is probably the 'hard' feeling that Gareth is relating to. dear husband and I have never had an ulcer so we don't have a clue what he is going through.

 

His gastro doctor is setting up an endoscopy/colonoscopy to check 'things' out. He had dropped to 140#....down from 158# last July. He is coordinating it with an ENT doctor who will look at the vocal cords and find out why Gareth can't get past a whisper on most days.

 

Thank you for asking and keeping him in your thoughts. As I have said before, this site has been a blessing to me........I have learned so much and you all have helped me understand what Gareth is feeling.

 

Have a good day, Everyone.

Margaret

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Hi, Margaret. I am sure it was stressfull for both of you, though it sounds like it went well enough. I hope that the results allow you and your primary care physician to come up with a reasonable treatment plan.


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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Margaret,

Thanks for letting us know how things went today. It sounds like Gareth did pretty well considering. It was probably more stressful on you having to watch.

 

I did find this link to the [Gastroparesis and Dysmotilities

Association

http://digestivedistress.com/what_is_GP.html

through our page on gastroparesis. It might be able to answer some of your questions about the results, treatments, etc.

 

I hope Garath gets some relief from all of this very soon! He's in our thoughts as well as you and the dear husband.

 

Big Hugs,


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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Hi Margaret,

 

Gareth amazes me. For him to go through all of these tests that are so uncomfortable, they have to be difficult for him to understand and endure--they are for me! On top of that, it is difficult for G to communicate how it affects him effectively and that has to be so frustrating to all concerned. My heart goes out to all of you. And pin a medal on him for eating that oatmeal; I'm not sure I could do that--oatmeal = icky.

 

Please keep us updated on the results. That's quite a weight loss for a guy his age and size. I can't imagine how he must be feeling. Hopefully these tests will bring some much needed answers and treatment.

 

xoxo emmie

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