Lobectomy

[jaime]

Hi everyone,
Im in the hospital getting another round of IV meds now. The past few times I have been sick my docs have been tossing around the idea of me having a lobectomy. Some of the docs think that removing this particular lobe of my lung that is more diseased would be of benefit to me and help spare the rest of my lungs. I have spoken with a couple of surgeons and after looking at my chest CT they both said they didnt think it would really benefit me due to the fact that CF obviously effects my whole lungs. But, the CF docs keep bringing it up.
So, now Im just wondering if anyone has had a lobectomy or knows someone who has? If so, what was it like? Why did you have it? How was recovery? Any info or comments are much appreciated. Thanks.

 

[anonymous]

id say the surgeons are right. if everyone had badly diseased parts of lungs chopped out youd end up having nothing left!

i can remember reading somewhere about someone having one and then regretting it because it served no purpose. cant remember whether it was an article on the net or if it was actually someone here who had it done. *bad memory*

 

[anonymous]

Hi! I had a lobectomy when I was 11. I had the lower left lobe removed. It was irreversabley damaged by a micobacteria infection that got way out of hand, so they removed it. The surgery itself was ok...i had to have chest tubes afterwards for a while which sucked, but essentially it was the best decision. Your pft's go down but that is all relative...its simply because you dont have all your lungs obviously. But since I was 11 i played sports, and did everything normal. I think I was lucky I was so young, I didn't think it was that serious at the time. If your doctors really think its a good idea then I would consider it....what lobe do they want to remove?

Caitlin

 

[jaime]

The part that would be removed is the right upper lobe. I had a large abscess there a few years ago and now it just never seems to get better. I'm having a bronchoscopy on monday to see if maybe there is some atypical bugs there that are not being treated with the IV meds im on now. I dont know, its just hard when you get so many differing opinions from so many doctors.

 

[anonymous]

Jaime-
I am surprised you are getting so many differing opinons. What does your actual doctor think? I guess a lobectomy is good because it gets that diseased and still infected area OUT, since if it is damaged it is not helping you anyway. But it is major surgery after all, and is something to think about.

Caitlin ...21 w/ CF

 

[jaime]

My doctor has mixed feelings on the issue. She thinks obviously it would help a little but also it could harm me (post op pneumonia and other complications) Also, she brings up the fact that we can only cut out so many "bad" parts of the lung, you know, the rest is not perfect and is also diseased. Where did you have your surgery Caitlin? Im in Boston. I just had a bronch on monday so they are testing now for any atypical bugs in the right upper lobe.

 

[anonymous]

Jaime- I am in Boston also! I had my surgery when I was 11, which was 1995. I had it at Children's...which is where I still go. Who is your doctor? I see what she is saying..I think at the time a lobectomy was the best option for me because the area was SO irreversibley diseased and the rest of my lungs were doing well. Plus, because it was atypical mycobacteria that caused the disease and not a normal CF bug, they wanted to get any evidence of it completely out. Following the surgery I was on 4 oral antibiotics for almost 4 years, and any time that I cultured the mycobacteria, I did 6 weeks of IV Amikacin. Knock on wood I havent cultured it since 8th grade. My doctor was very aggressive about it, but it totally depends on your situation.

Caitlin

 

[jaime]

Hey Caitlin, I go to Childrens too (in fact Im here now)! I see Dawn Ericson, who do you see?

 

[anonymous]

Hey Jaime-
I was in there the other day (i am actually doing a home cleanout right now...got my PICC lineplaced on monday, and had to come in yesterday for a blood draw.) I see Carolyn Donovan now...I just switched to her. I used to see Mark Dovey but he kind of abruptly left the hospital in July. Before him I saw Maryellen Wohl, who was the head of the department then and GREAT. Dr. Donovan seems good so far. I try to do most of my cleanouts at home now, the entire thing, so to be honest I dont see much of my doctor. I know Dawn Ericson she is great, I remember her back when she started I have always liked her, do you like her?

Caitlin

p.s. when I had a lobectomy there I had some complications from it...i.e. a pneumothorax that would not go away. It was a long strange perplexing thing that went on for a long time...so thats the only reason I have complicated thoughts when I think about my lobectomy. It was totally necessary, but I went through a time when it seemed like people were always saying to me "There is a 99% chance that this will work out" and I was ALWAYS the one percent. But since then it has been fine and I cant even tell there is a peice missing!!

 

[anonymous]

P.S. Jaime,

How are you recovering from your bronchoscopy. I had one back last July (2003) and recovered terribly from the anesthesia...which was unexpected. You must be alright since you are online typing and stuff. Also...is it true they now have high speed internet access in all the rooms? Does it really work as well as they say? We used to have to jump through hoops to get them to hook up my internet in my room.

Caitlin

 

[jaime]

Actually the bronch was awful!! I have never had one so bad. They said that there is lots of adhesions and stuff and they really moved alot of stuff around so I have had lots of chest pain. I was really sick vomiting and I had a fever until friday. Then my heartrate was relly low (like about 38 bpm) so they were really worried about that. It was not fun at all. I still have chest pain but it is getting better now that it has been six days. I was going to go home and finish my cleanout at home but I literally spent the rest of the week in bed extremely sick.

I really like Dr. Ericson, but I think im going to be switching soon because of the whole new adult program thing they are starting with the Brigham. Dr. Donovan was one of the options I was given to switch to, so Im glad to hear you like her. Even if I dont end up having surgery now, its good to hear a story of someone who has been thru the experience. Thanks for sharing, I appreciate it.

 

[jaime]

Oh yea, and they do have internet in all the rooms. And I belive if you dont have your own computer they will let you borrow a laptop.
Where do you live?

 

[anonymous]

That is too bad that you got so sick. I felt the same way, they said they removed a lot of "stuff" from my larger bronchial tubes so I felt just awful. The anesthesia I think made me really out of it too. I remember waking up from it and being so uncomfortable I couldnt stand it, my mouth was so dry all I wanted was ice for days. I JUST found out about this new program at the Brigham. They said to us "didn't you get the letter?" and i said NO! I think it will be good but also very weird to be admitted at the Brigham now instead of 9 or 10 east! Dr. Donovan is good, she is very thorough and seems to put a lot of thought into what you ask her/ tell her, instead of just treating patients the same. I live in Ashland, half an hour outside boston. That is where my family lives and where I am now for the cleanout, but I have an apartment in Brighton the rest of the time. Where do you live, what do you do?

Caitlin

 

[anonymous]

I live in salem. I actually work at the Brigham!! So that will be weird. I work in the OB department and I do ultrasound.
Its great, I love my job. I know where ashland is, a couple of the girls I work with live there.

They are having a CF night tomorrow here so Im going to go and hear about this new program at the Brigham, they will be talking about it a little.
Jaime

 

[anonymous]

yeah i heard about the talk; unfortunately I have b. cepacia so I am not supposed to go. I cant anyway because I have to work, but I was interested in it. would you mind letting me know anything interesting that is said? I spoke at a CFF benefit a few weeks ago and talked to a few families afterwards, and one family said that thier Dr. (dr. colin at childrens) said that within five years they wont need to worry about the normal CF problems, that things would be much different, but wouldnt really elaborate. (i got the feeling the parents didnt really know what to ask anyway)...whatever THAT means. Then my mother heard through someone at Mass General that their very conservative doctor had said something similar...something about within five years, as if there was some breakthrough. I do not think of course that they have found some miracle treatment but I am curious if there is any new stuff that we dont know yet.

Caitlin

 

[jaime]

Hi again Caitlin,
So I went to the CF night on tuesday. Craig Gerard talked a bit about the Brigham program, about what it will entail and switching docs and stuff. Nothing that I didnt already know but still good to hear formally. There will be a different clinic day at Childrens for adults.
Dawn Ericson talked about avoiding the spread of germs and what type of measures they are taking to protect people both in the clinic and in the inpt units.
Then David Waltz spoke a bit about new drugs and clinical trials and investigations they are researching. I dont remeber him speaking about any new "wonder drug" or treatment. He talked basically about the need for people to volunteer to be in studies and stuff.

It was informative but really not too exciting. I was suprised there were very few people there.
(If you want to email me Caitlin my email can be found in my profile).