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Sweet

Little update on me

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Oh Shelley, I'm so sorry to hear about Gene. It seems to be more common in the lungs, he did tell me that. I'm on day 8 of the anti-fungal, and there is no change. So I'll call him tomorrow, and see what his plan is. It's quite normal to need the anti-fungals for a very long time, so I'm kind of confused as to why he thought 10 days would give him an idea if I should stay on them longer..... we'll see.

 

Keeping you and Gene in my thoughts. Positive vibes to you both!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet,

 

Thanks for your kind thoughts, but it is really no worry about Gene. The issues that he has are very common after lung transplant and are all quite treatable, so the big picture is that his transplant is a huge success! And every day it seems like there is something more he can do, or one less medicine he has to take. It's only 32 days post-transplant and he is already exercising, lifting (small) weights, doing squats and treadmill -- and all without supplemental oxygen. That's a miracle!

 

Plus they caught everything right away and started treating it immediately, including the aspergillus, diabetes, and a-fibs. He is already off both short and long lasting insulin (the diabetes was drug-induced). The thing is, with your aspergillus, they sure didn't catch it right away or start treating it promptly, so it puts you at much greater risk or the possibility of having a longer treatment time.

 

I hope all goes well. So let us know what you find out. Here's hoping you heal from it...sooner or later!


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.

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Hi,

 

Saw my rheumatologist yesterday and my Sjogren's has gotten worse, so he gave me pills for the dry mouth, and an ointment to put in my eyes at night. Nothing new other than that. While I was there the infectious disease guy called me on my cell and said since the meds have made no difference with my tongue, he wants to biopsy. Although he doesn't do this, so I have to see an ENT. Just need to schedule the appointment. So, that's about it.

 

While out of town for doctor appointments, I did spend a fair amount of money at my favorite stores.

:happy-day:

Love ya!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet

 

Sorry to hear you need the biopsy after all. I was really hoping the medications would help you instead. Keep us updated on when and how it goes.

 

I really like that store too!!! Sure doesn't take me long to spend a lot there either.


Sending good wishes your way!

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WOW ! Pam, you really are going through it aren't you ? Glad to see that it hasn't put you off the most important therapy of them all - RETAIL Therapy :D

 

I have no personal experience, but I have heard about Aspergillosis, and I do know that it can take time to clear it totally from your system. I wish you all the best with the biopsy, it can't be fun booking yourself in for something like that. It's the best excuse I've ever heard of to hit the freezer section, for brand name ice creams ! :emoticons-yes:

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Dearest Sweet Pam,

 

I emapthize with you, battling such a troublesome issue. when it comes to a fungal issue, as Aspergillus...you have my attention.

 

Why, why, why they have such a problem confining/treating this?!

 

Is this related to sinus? I'm curious, in that I have had such issues for quite some time and I believe an ENT is my next route.

 

I am keeping you in my closest thoughts, Pam.

Take care and please keep us posted?


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks everyone!

 

Susie, they think it may be related to the mass they removed out of my right maxillary sinus back in May. Not sure if you remember, but they sound a mass on a CT, and didn't know what it was, so sent me to the Guru ENT in Seattle. He went in and surgically removed it. It was aspergillosi fungamatus, I had the coated tongue issue about 5 months prior to this already, and so I figured in my pea brain that once he got rid of the fungi in my sinus, the tongue would clear up. When it didn't I started going to the doctors. First they thought thrush, then a tougher form of yeast, then thought "Hey maybe it's related to the aspergillosis" so put me on anti-fungals, and still not a change. So now they are a bit stumped, so want to do the biopsy. It could still very well be the fungus, but as you say it can take a very long time to treat it. The meds are fairly toxic though, so they've decided (and I agree) it's best to biopsy it, make sure we know what we are dealing with, before they kill of my liver trying to treat it. We'll see..... hmmm just remembered I'm supposed to make that appointment...... LOL Could I be subconsciously trying to forget it?


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Pam,

 

just wanted to send you big hugs. I hope all goes well with the Biopsy and they can figure out what it is and get on with treating it.

 

Thinking of you!

 

Irene

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Hi Pamela ,

 

Just wondering if you made the appointment for the biopsy? We need to keep you on your toes to get rid of this mess!!!

 

Take care, Everyone.

Margaret

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Oh Margaret,

 

You are the second person today keeping me on my toes. I'm picking up the phone right now to let the infectious disease guy know which ENT I want to see, and then I guess they will make the appointment and call me.....doing it right now.....promise.....dialing the phone....... :P Ok, just got off the phone, and gave the message to the nurse. :VeryHappy:

 

Thanks for caring so much. :emoticon-hug:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Sweet,

 

You have sure been through a lot over the past year and I am hoping for a diagnosis and sucessful form of treatment for you soon. Your positive attitude will surely be beneficial to you during your healing process.

You'll be in my thoughts.


I may have Scleroderma, but Scleroderma doesn't have me!

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Pam,

Please keep us posted and please make the appointment! I have had issues with cysts under my tongue for over a year and the ENT keeps opening them and stitching them open. It is unpleasant to say the least. Hopefully they will be able to find a quick fix that isn't toxic!

 

Thinking of you,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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