Latest CT Scan Results

[mishb]

Cindy ,didn't they do a biopsy of your lungs before ? I read the article but it all looked greek to me,couldn't understand it but I did see where the prognosis is good,so that's a good thing. When are they going to try to inflate your lungs ? I thought they would have put u in the hosp. and got that done ! Sorry to hear the news but for sure let us know what is happening. Take care

It also looked Greek to me too. It was telling me to not dig in the dirt and don't have chickens

I hope things start to look up for you Cindy.
You know that all our thoughts and prayers will be following you on your journey through this.
Best of luck for your next appointment

[windchime]

It also looked Greek to me too. It was telling me to not dig in the dirt and don't have chickens

I hope things start to look up for you Cindy.
You know that all our thoughts and prayers will be following you on your journey through this.
Best of luck for your next appointment

Unfortunately I also have to give up playing in bat poop. And that was my favorite past time.

This is the result of getting histoplasmosis as a kid. The lymph encapsulate (in calcium) the fungal spores in the lung and even after they're dead (the spores) the body continues to over react. The vast majority of people that have or get histo never have this reaction. It is reserved for a few select special people like me. It continues to grow and eventually can press on the superior vena cava causing superior vena cava syndrome. It can also press on the other various arteries and veins located in the mediastinum (area between the two lungs.) Last but not least it can press on the main bronchial stems. In my case the right main which caused the two lobes to collapse.

They are unable to remove it because there is a high mortality rate with the procedure. They may be able to debulk it, but I'm not sure. Waiting to hear from the surgeons on that one. If it was an artery or a vein they would stent it, but as of last talk he didn't think a stent would work in the the bronch. That leaves us to removing the two lobes so the upper lobe can begin to take over and have more room to expand. It also helps prevent infection which I guess left to their own devices they will do now.

This is an auto immune disease and has caused various granuloma to appear in my spleen and liver. It's been a rough couple of days wrapping my mind around this new disease that has a worse prognosis. I wish life were simple again.

[Debbie C]

So that means u can't hang out with Batman any more !!! When are u supposed to hear something ? Have they given you any other drugs ? I hope you feel better soon.

[pberggren1]

But Batman loves to hang out with Cindy....

[windchime]

So that means u can't hang out with Batman any more !!! When are u supposed to hear something ? Have they given you any other drugs ? I hope you feel better soon.

No drugs for this disease. I will hopefully hear something next week. I just sent an email to Dr. James E Loyd at Vanderbilt and asked if he would review my case. He is as close to an expert and I could find. Since this disease is so rare I'm hoping he will say yes.

Thank you Batman. I would miss you if I had to give you up........

[Alysia]

Dear Cindy, I am sorry for all the though time you are going through
I don't understand all this
all I know is that we love you and want you to feel good
WG or not, you are part of the family, and def a superhero

[windchime]

Thank you all so much. You have been such a great emotional support for me the past five months. The thought of giving "you" up breaks my heart. There are no support groups or active forums for this disease so I will continue to lurk here if you don't mind and Andrew doesn't kick me off. I love you all.

[me2]

Your changing medical diagnosis doesn't change your diagnosis as being part of our happy little family. You will stay here with us for as long as you want.
I know you have some difficult things to get worked on but I'm confident in modern medicine and that they will help you get back a simpler life again. Its happened to me. It will happen for you.

[mishb]

Cindy you are a part of this family - you can't leave us, you are not allowed, so it doesn't matter

You can be an honorary weggie like Booknut - but no lurking okay, you have to participate ......who else is going to give us muscle advice

[Alysia]

Thank you all so much. You have been such a great emotional support for me the past five months. The thought of giving "you" up breaks my heart. There are no support groups or active forums for this disease so I will continue to lurk here if you don't mind and Andrew doesn't kick me off. I love you all.

NO WAY, you are not going anywhere (unless you wish for) and no one is going to kick you off !
we need you around, besides, we are the best forum on the globe and you are precious member of our family. we can't make it without you. it is like you have always been here and not only 5 months or so.
lots of hugs and prayers to you