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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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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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