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Sweet

Little update on me

28 posts in this topic

Hi Everyone,

 

As some of you may or may not remember I had a CT in May of 09 that showed a mass in my right maxillary sinus that ended up being Aspergillus fumigatus ( a bad type of fungus). I had surgery to remove it the end of May. We thought all was well, but then I noticed a thick coated tongue. I figured it was just thrush from all of the antibiotics I had been on for months to get rid of this "sinus infection" that wasn't a sinus infection at all. So for months now I have been put on numerous drugs to try and get rid of this tongue coating with no results. I was put on Nystatin, Diflucan, Nizoral, then back to Difucan for a 15 week treatment. NOTHING. So they sent me to an Infectious Disease specialist who I saw last Thursday. He's a bit stumped but is concerned I was never treated systemically for the aspergillus. He said it can kill people....nice.....no one has ever given me any idea of how serious it could be. I've done a lot of research online since then and wish I hadn't. So now I'm on a trial 10 treatment of some serious anti-fungal meds that are making me quite ill. I'm suppose to call him when it gets close to the end of the 10 days to let him know if I've noticed any change. If not, then I have to go back in, and they're going to cut out part of my tongue to send off for pathology. Good grief!!! anyway, kind of bummed about all of that, and I'll keep you posted.

 

Love to you all. I'm glad I have you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Bummer! Pam - what a ride you've been on. I'm so sorry to read all you have been through. I sure hope this 10 days of treatment works for you and you get to keep all of your tongue tissue. Please keep us updated.


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 I am so sorry that you have to go through all of this. It is so scarey to have something wrong that doctors do not know how to treat. I hope that you will be feeling better soon. Susie

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Oh Sweet Pam!

 

Good Grief is right! So it sounds like the first doctors dropped the ball?

 

I have a good friend who has had 'pnemonia' in her only lung for like 8 months. Turned out it was a nasty infection that needed 10 days of hard core antibiotics which made her very ill as well. Sounds like you two are fighting off the same "nasty".

 

She is much better now! Best wishes to you in recovery and hang in there with the icky feelings.

 

I'll be thinking of you,


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Oh Pam~ That all sounds pretty awful and completely disheartening. I'd send you a virtual bouquet and a box of the famous ISN luscious chocolate truffles (completely non-fattening, of course), but what I think what would do you the most good is a real temper tantrum. I'm giving you a chitty for one of mine. It's a good one, lots of foot stomping, door slamming, and a pretty amazing selection of words we don't ever use on the Forum. Enjoy it! Tell the doctors we want you better right now this very instant.


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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Oh Pam that sounds awful! fungus infections are not nice. I have had quite a few thrush infections in my mouth due to some strong doses of antibiotics caused by numerous chest infections so can fully understand why you are on a bit of a bummer over this. I hope that they get the medications sorted quickly for you because it's been going on for such a long time already.

 

Take Care & thinking of you.

 

Buttons

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Pam,

I am so sorry you are going through all of this. It is so frustrating when you know something is wrong but the doctors just don't seem to be able to put things together. I certainly hope you don't have to have part of your tongue cut off and will be holding you in my thoughts.

 

miocean


ISN Artist

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Hi Pam ,

 

I am curious as to how you got an Aspergillus infection in the first place? Was it from your travels or is that just one of those 'funky, off the wall happenings' that caught up to you? It sounds very painful and I hope you get cured of it. I suppose I can read up on it, too.

 

Take care, Everyone.

Margaret

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Thanks Everyone, :thank-you:

 

Jeannie, I'll take the temper tantrum right now! :temper-tantrum:

 

Margaret, he said people breath spores in and out everyday, but sometimes they "seat" and start growing. They figure the fungus mass I had in my right maxillary sinus had been there a couple of years because of the size of it. It filled the entire maxillary sinus cavity, which is all the space behind your cheek bone. It wasn't in the nasal area. I wish I could show you the pictures of it, it was incredible. Yuck. Every time I even think about it, it grosses me out. lol


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Oh Sweet! That's horrible for you to have to go through all that on top of everything else. It's good that they have you on some heavy meds to try to combat it but really unfortunate that you have to put up with the bad (feeling very ill) while taking it. I sure hope they work and you rid yourself of this in a hurry as in the 10 days. Sounds like he knows what he's talking about so at last that might be in your favour. Take care and keep us updated.


Sending good wishes your way!

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Hello Pam

 

That sounds awful! I hope the antibiotics work first time around and you don't have to have any biopsy or more treatment.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Pam,

 

I'm so sorry you have to deal with all this! Aspergillosis is a nasty, nasty infection. A good friend of mine is also battling it. I tease her about her fungus "hairball," but it is no laughing matter. She's had months of antifungal medication and is about to have major surgery. Hopefully this will be the last of it for both of you. You're in my thoughts.

 

Big hug,

 

warmheart

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Hi Sweet,

 

Aren't you glad you insisted on getting in with an infectious disease expert?! I am glad your care is getting back on track, but double ouch if they need to do a tongue biopsy.

 

Gene has a few very common complications from his lung transplant in January, including an Aspergillus infection in his new lung. He's on some strong meds for it, they said to expect him to be on them for at least six months. We learned yesterday that they need to be taken with food, which will hopefully help reduce some side effects. They detected his infection with a bronchoscopy; and thank goodness as he is rather attached to his tongue.

 

Please keep us posted as to how things progress. Hopefully it will be for the better now!


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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Shelley,

I am so sorry to hear that Gene is having trouble with his transplant. I hope the meds don't make him too sick and that they solve the problem. He's been through enough, and so have you.

 

miocean


ISN Artist

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Hey sorry about the infection, sounds horrible..like we don't have enough to deal with already! I hope all goes well with the med's and they don't have to do anything with your tongue. Sounds so painful! Best wishes are with you!

 

HUGS,

 

susieq40

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