Found Searching Google

[Ross]

Hayden, I am with you. AFTER bypass surgery, I began searching to find out whaT in heck had happened to me because I didn't have a clue. I was new to computers, had a chest slash from there to here, nothing to do but try to recover - the computer was sitting here; it beckoned and by golly there was information to be had. Found this site and Dr Rich in heart disease/cardiology. Began reading and learning from that time on. It was months before I discovered I didn't really belong in VR because I didn't have a valve replaced; just some other stuff done. But it is a wonderful experience here in VR and the things we learn can apply to my situation, too. I am glad every day for this site.

A little off the path here. I found something by pure mistake yesterday that greatly troubles me. I was diagnosed with Pulmonary Hemosiderosis, but I came across this disease yesterday looking for a definition of blebs: Lymphangioleiomyomatosis

I'll be darned if it isn't describing to a perfect T everything going on with my lungs. Every single thing. I'm really beginning to doubt the original diagnosis now. This disease affects mainly women, but rare cases in men have been reported. This is more or less a terminal disease.

http://www.emedicine.com/med/topic1348.htm

 

[Nancy]

Ross-

I read the article. I hope you are planning on contacting the authors of the article. Perhaps they could lead you to a resource for diagnosis and even treatment. Maybe you could get involved in a study to mitigate expenses.

It did say that lung transplantation is possible, so maybe that is something to look into.

There is a gal on the PHA website who just had one done, and she's doing well. I know that this is different from what you have, but just wanted to let you know that transplantation can be successful.

 

[hensylee]

I read it, too, Ross and noted this:

Medical/Legal Pitfalls:


Failure to diagnose LAM


wonder why they didn't follow up on you. You are in dire straits - is it because they didn't do this, perhaps? Hope you print this out for SOMEBODY who will read and listen and then check more into it.

No wonder you can't breathe.

 

[gadgetman]

"This disease affects mainly women, but rare cases in men have been reported. "

Ross,

I've noticed you seem to be "typing" in a high voice lately .

Seriously, I hope and pray that someone can pinpoint your problem and come up with a way to really treat it. While at UAB they did two or three Lung transplants. Don't know the history of why they were there. Our Preacher's wife has suffered for years with heart and lung problems. She was evaluated for a Heart and Lung transplant many years ago when her health was at its lowest and they determined she was not a "viable" candidate and would not place her on the list. She has her good days and bad days and they are going to approach them "know it all Doctors" again about the transplants.

I wish you much success and,

May God Bless,

Danny

 

[bvdr]

It is amazing what is at our fingertips with Google. A friend of mine has a son that has been with google almost from the beginning and now( in his 20's) is a multi-millionaire.

Ross, I think you need to bring up this information to which ever doctor is treating your lung disease. It is too important not to follow up. I know you break into a cold sweat thinking about any more surgical intervention but wonder if you are misdiagnosed and by some miracle a transplant was made available for you.....and it was a success? I know of at least 1200 people who would be rejoicing if such was the case.

 

[Yaps]

From what I

From what I

read ,I agree , print this out and see your dr asap... I know if it werent for google Id be lost sometimes.... wish you luck Ross , you deserve so much..love the pup

 

[Ross]

Cold sweat thinking about another surgery? No cold sweat here. I'm 99.9% sure I'd never make it. I know it's not my call, but that is my gut instinct feeling after the last fiasco. What troubles me is that with the Hemosiderosis diagnosis, I was told no possiblities of transplant. With this, it looks like there is. I'm still betting I'm not a candidate, but I'm sure going into questioning mode now that I ran across this.

 

[bvdr]

Cold sweat thinking about another surgery? No cold sweat here. I'm 99.9% sure I'd never make it. I know it's not my call, but that is my gut instinct feeling after the last fiasco. What troubles me is that with the Hemosiderosis diagnosis, I was told no possiblities of transplant. With this, it looks like there is. I'm still betting I'm not a candidate, but I'm sure going into questioning mode now that I ran across this.

Questioning mode is a very good place to be.

 

[Harrybaby666]

My Question Is.....

My Question Is.....

read ,I agree , print this out and see your dr asap... I know if it werent for google Id be lost sometimes.... wish you luck Ross , you deserve so much..love the pup

How do you print something out like this and actually be taken seriously by the doctors? I have told mine that I read up on things on the internet, and they tell me to PAY NO ATTENTION TO WHAT IS PUT ON THE INTERNET, THAT IT IS ABSOLUTELY USELESS INFORMATION.... This is the area I have the most trouble in...getting the doctor to listen... Harrybaby666

 

[Nancy]

Harry-

Blanket statements from doctors about the Internet being useless, are, in themselves, useless, and indicate that the doctor is computer deprived.

There are ridiculous sites out there, but there are also many tremendous sites with absolutely up to date and cutting edge information. And some of these sites are from excellent hospitals like Cleveland Clinic and others like that, and authored by doctor experts in various diseases and conditions. Sometimes the person doing Internet research learns things the doctors haven't learned yet.

And you can also Google Health Information and come up with the very newest information.

At the very least, it should be a discussion point during medical appointments. A closed mind never learns much and never keeps up to date.

 

[Barry]

Docs are reluctant to take on info from patients who have gleaned info from the internet for two reasons:
1. There is a lot of junk on the internet
2. "Medical Students' Disease" is rampant - i.e. the tendency of folks to convince themselves that they've got the disease after they read its signs and symptoms; new medical students commonly do a lot of invalid self-diagnosis.

With regard to #1, always consider the source.

With regard to #2, I dearly hope that's what you've got, Ross, and not Lymphangioleiomyomatosis. Besides the fact that #2 isn't terminal, you can also pronounce it!

Oh, and of course there's reason #3: Some docs are know-it-all arrogant idiots incapable of considering new information.