Re: biopsy expectations??

[Guest guest]

Ginny;

The type of biopsy you have will determine the after effects. I had what is called a VATS, video assisted thoracic surgery. I had it done on a friday at 5:30 p.m. and was out of the hospital by 8:00 a.m. the next morning. I was sore for a couple of days and was back to work the next Wednesday(sp). Others have plain old open lung biopsy and the recovery was far worse, I'm sure you will hear from them. I would call the doctor to find out the type of procdure they are planning. If it isn't the vats I would insist on having that done even if you have to go to another facility and doctor.

Gordon

biopsy expectations??

Hi all,I'm the young Lupus-having mom of 3 little ones, newly diagnosed...and I've got an appointment May 4th for a lung biopsy.What should I expect?Thanks in advance for your comments and advice -Ginny

[Guest guest]

Everyone has different stories about their biopsy--I had a VAT on Mon morning and did not get out of hospital until Sat afternoon!!! I was out of work for 2 months and suffered pain for approx. 1 year. The surgery --just like IPF--varies with each person.

Jan

--------- biopsy expectations??

Hi all,I'm the young Lupus-having mom of 3 little ones, newly diagnosed...and I've got an appointment May 4th for a lung biopsy.What should I expect?Thanks in advance for your comments and advice -Ginny

[Guest guest]

Ginny, What are they doing the biopsy for ? IPF ? Peggy

on 4/21/06 6:40 PM, ginnyfagerstrom at ginnyfagerstrom@... wrote:

Hi all,

I'm the young Lupus-having mom of 3 little ones, newly diagnosed...

and I've got an appointment May 4th for a lung biopsy.

What should I expect?

Thanks in advance for your comments and advice -

Ginny

[Guest guest]

Ginny,

Are they going to do an open lung or bronchoscopy biopsy?

We have all had different experiences. Some people in our group came and went with little pain or recovery time. Then some of us stayed a longer period of time in the hospital. Mine did not go so well. I was 9 days in hospital on morphine and about six weeks before I was able to go out. I had Lupus Pleuritis for a few years before the biopsy. That pain was terrible. The surgeon removed a lot of the scar tissue that had built up on the lining of my lung and was rubbing against the ribs.

Some people here and some docs do not think the biopsy is necessary, but I finally got a correct diagnosis and relief from that awful pain....so to me it was worth it.

I am glad you are sticking on board here. I will be following you and praying for an easy biopsy. God bless you, your husband and those sweet babies.

Hugs,

Joyce

>> Hi all,> I'm the young Lupus-having mom of 3 little ones, newly diagnosed...> and I've got an appointment May 4th for a lung biopsy.> What should I expect?> Thanks in advance for your comments and advice -> Ginny>

[Guest guest]

Thanks all for your messages. I evidently didn't ask enough questions

about the procedure when I saw my new rheumatologist today, we had

alot of other issues to talk about.

But I will have PFT's on Monday, see a pulmonologist on Tuesday and

will find out exactly what the biopsy type/plan is.

Peggy, my PF showed up on a chest CT done last month, during a lupus

flare I'm in the middle of... so this is PF secondary to lupus. I

don't know how severe the scarring is, until I see the pulmonologist

for the first time next week, and of course until the biopsy's done.

I am overwhelmed. I grew up utilizing the Indian Health Service

system of healthcare and am entirely unaccustomed to paying for

anything... but my husband and I live away from that system now and

this is taking its financial as well as emotional toll. We have good

insurance and are not in dire straits but each appointment brings with

it that feeling of another brick in the debt wall. And I don't need

that stress!

I'm doing my best to keep a good attitude though, thanks to the advice

of people here in this group -

Ginny

[Guest guest]

Hi Ginny, I hope someone can give you incouragement. From what I have read it is a ify procedure. I would not do it for me after reading all the bad stuff people have posted. What good does it do. You know you are sick and no one has come up with stuff to help us. That's a decision only you can make. Speak up people. Give her some good advice. After reading your posts, I would not do it for me. I don't know anything about Lupus, so don't take anything I say serously. I'm just running my mouth. The posts I have read say a lung biopsey can be serious stuff. I'm just running my mouth. Look at the archives of the posts that have been recorded and go from there. You asked for some input. Mine might not be good. Grey

biopsy expectations??

Hi all,I'm the young Lupus-having mom of 3 little ones, newly diagnosed...and I've got an appointment May 4th for a lung biopsy.What should I expect?Thanks in advance for your comments and advice -Ginny

[Guest guest]

Ginny, Another bad biopsy experience, sorry. I had the regular ol open lung - went in Monday morning - got out Thursday night went back to work the following Friday. Felt like I had been run over by a mack truck twice! It was the worst surgery I had been through (not that I've been through too many). The thing that was VERY aggravating to me was they really couldn't see anything more than what they could tell from the PFT's and the CT scan. Both tests showed pulmonary fibrosis. The doctors weren't going to change how they were going to treat me. As Grey says, there really isn't any treatment. I know a lung biopsy is necessary if you are going into a drug trial. They want confirmation by biopsy and my personal feeling, in a small percentage of cases it's a necessary procedure. Learn all you can, education is key. Leanneginnyfagerstrom

wrote: Hi all,I'm the young Lupus-having mom of 3 little ones, newly diagnosed...and I've got an appointment May 4th for a lung biopsy.What should I expect?Thanks in advance for your comments and advice -Ginny

Yahoo! Mail goes everywhere you do. Get it on your phone.

[Guest guest]

Ginny, I also had a vats biopsy but it was easy. Contemplated for a

couple of months and got several dr opinions first. What finally

convinced was that th einsurance would not approve a course aof

action without a diagnosis and this was the only 100% answer. All

dr's said 3-4 in hospital and I went in Tues released Thurs. A couple

days on vicodin and a week on advil. No complecations and no pain.

Just for background, I am 34 and no other health issues. Please feel

free to ask anything I am glad to talk about it (as we all are).

>

> Hi all,

> I'm the young Lupus-having mom of 3 little ones, newly diagnosed...

> and I've got an appointment May 4th for a lung biopsy.

> What should I expect?

> Thanks in advance for your comments and advice -

> Ginny

>

[Guest guest]

Ginny, There is one thing I would like to add. I live in a country type setting and we have one medical center within a 30 mile radious. I found out that some doctors do not like for their patients to refuse their recommed course of treatment. My heart dr recommended to go to rehab. I declined and he said he would see me again in a year. That is not a good thing. I guess I could call him if I have trouble. I think he got bent out of shape. Said he had done all he could for me. That was my fault. Grey

biopsy expectations??

Hi all,I'm the young Lupus-having mom of 3 little ones, newly diagnosed...and I've got an appointment May 4th for a lung biopsy.What should I expect?Thanks in advance for your comments and advice -Ginny

[Guest guest]

Ginny, I did have the bronchoscope (sp really bad) down the throat. they took 7 little pieces and that told them AGAIN that I have IPF. There is nothing else to say they already knew that.. Anyhow that wasn't bad at all. Maybe that is the one they want to do on you.. God Bless, Keep us up to date. Peggy

on 4/21/06 10:46 PM, jose singletary at jsingletary@... wrote:

Hi Ginny, I hope someone can give you incouragement. From what I have read it is a ify procedure. I would not do it for me after reading all the bad stuff people have posted. What good does it do. You know you are sick and no one has come up with stuff to help us. That's a decision only you can make. Speak up people. Give her some good advice. After reading your posts, I would not do it for me. I don't know anything about Lupus, so don't take anything I say serously. I'm just running my mouth. The posts I have read say a lung biopsey can be serious stuff. I'm just running my mouth. Look at the archives of the posts that have been recorded and go from there. You asked for some input. Mine might not be good. Grey

biopsy expectations??

Hi all,

I'm the young Lupus-having mom of 3 little ones, newly diagnosed...

and I've got an appointment May 4th for a lung biopsy.

What should I expect?

Thanks in advance for your comments and advice -

Ginny

[Guest guest]

I've never had a lung biopsy, so I can't tell you personal experience. It sounds like you need to talk to your doctor again before this procedure. There are 2 ways that they can get a sample of this tissue....one is putting a tube down your throat and going deep into your lung....you are under anesthesia.....the other way is to make a small incision into your ribs and get the sample from the outside of your body. Even tho this is a small incision, many people experience pain afterwards. You should ask the doctor which one you are having....AND I would ask what information they want that maybe you could get with an MRI. I wouldn't say that I would never have a procedure because some people had a bad experience.....everyone is different....your doctor may have a very good reason for wanting the biopsy. But, I would talk with him first....call and ask them to give you an appointment soon.....you still have questions that need to be asked.

I see that you have young children....is there someone who can watch them while you talk with the doctor, so you can focus on what they are saying? Having someone else go with you is another good idea. Someone who can also listen and talk to you after the appointment. I am a nurse..well, I was before I became disabled....but it makes me crazy when I hear stories like yours where a doctor tells a patient that they need a procedure, but doesn't tell them about it or find out what the patient wants to know....did they even give you a handout explaining what you should expect?

Being sick is not easy these days....our healthcare is not managed by doctors anymore....now it's insurance companies. So, we need to be informed and speak up about what we need. I don't know a lot of specifics about Lupus....you probably know a lot more about it than I do....but if you have any questions, I'd be happy to try to answer them for you.

--Diane Quinlan dianequinlan@...