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Nan's Visit To Johns Hopkins

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#1 nan


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Posted 28 June 2007 - 03:01 AM

I had a great visit to Hopkins. Her main concern is my GI bleeds due to watermelon stomach and my left index finger. All of my fingers and toes have tissue damage from the Raynaud's and my left index finger is puffy and hurts like crazy and tends to stay purple more than other fingers. She told me to watch it carefully and call her if it stays purple too long. She also did a standing order to have blood drawn every three months to do CBC, metabolic panel, and kidney and liver function tests. I also need to repeat my PFT that I had in January because I had a mild decrease in diffusion capacity. She said that I need to have my hemoglobin checked at the same time because anemia can affect the reading of the test. I am scheduled to go back in six months.

#2 Shelley Ensz

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Posted 28 June 2007 - 03:32 AM

Hi Nan,

It sounds like you had a good visit at Johns Hopkins, but I'm sorry that you have to cope with watermelon stomach and damage from Raynaud's, too. I hope your PFT goes well. Thanks for updating us!
Warm Hugs,

Shelley Ensz
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#3 LisaBulman


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Posted 28 June 2007 - 03:37 AM

Hi Nan,
Thanks for the update. It sounds like your dr is top of everything and keeping you on track with the tests. it is always good to hear when dr.'s listen to their patients. Make sure you keep those fingers warm!

Lisa Bulman
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#4 Sharonvandee


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Posted 28 June 2007 - 11:36 AM

Dear Nan

Glad to hear things went well on your visit. I am glad you have someone taking care of you and making sure they keep on top of things.
Kindest Regards


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

a little bent and broken and almost beyond repair!

#5 Sweet


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Posted 28 June 2007 - 12:06 PM

Hey Nan,

I'm really glad you feel this was a good visit. I am really sorry however that you have such damage due to raynaud's. :(

You keep happy!
Warm and gentle hugs,

ISN Support Specialist
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#6 Margaret


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Posted 28 June 2007 - 01:42 PM

Nan ,

So glad you have some good news from JH's. Sure wish you could get that watermelon stomach healed, though.

Take care, Everyone.

#7 emmie


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Posted 28 June 2007 - 04:34 PM

Hi Nan,

Sounds like a good visit. Would love to hear that your tummy was A-ok and don't like hearing that your fingers are doing that Raynauds thing in such a bad way.

You sound really happy and your doctor sounds great. That's super! Take care and hope the pft goes well.

xoxo emmie

#8 jefa


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Posted 28 June 2007 - 09:08 PM

Well, sounds like they are working hard to keep an eye on you between appointments. I join the rest in hoping your GAVE improves and that you manage stay on top of the Raynaud's. Are you on anything to manage that?
Warm wishes,

Carrie Maddoux
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#9 Sue


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Posted 29 June 2007 - 12:51 AM

Hi Nan,

So glad you had a positive experience at JH. Can I ask who you go to? I go there also and Dr. Ratain. Is that who you see?