lobectomy vs transplant

[teehee]

I did a search and it appears that very few people have had a lobectomy - is it not common? For those of you who have had one, what research did you do or have available that helped you make your decision? Are you glad you had the lobectomy? Is there anyone with CF who decided not to have it? For those of you who have had transplants was a lobectomy an option first? My SIL and husband are having to make a decision about a lobectomy for their 6 year old daughter with CFRD and any input would be appreciated.

 

[IG]

I don't know why they would have to do a lobectomy on a CFer that young. Usually that decreases any chance of regaining any possible FEV1. And unless the lobe of her lung is completely useless and doing more damage than good I don't see why they would have to do one anyway. I know they do lobectomies for cancer and such, but CF? I've very rarely heard of a lobectomy for that. As for transplant that's usually replacing a whole lung, not just sections of the lung I believe. With the transplant you're basically replacing what you take away as for the lobectomy you're just taking away.

 

[anonymous]

I have only heard of one other lobectomy w/ a CFer too, so I don't think it is very common. I would get a second opinion from a CF doctor if I were in your place.
I have heard of people getting lung lobes from relatives instead of a whole lung transplant but I don't know how common it is (lobe transplants).
Hope

 

[anonymous]

I had a lobectomy! When I was 11. I had a mycobacterium avium infection that went unnoticed, and basically destroyed the lower left lobe of my lung beyond the point of repair. Since the lung damage was so bad, they removed it. It is not uncommon for people w/ CF actually. If an infection has destroyed lung tissue so badly in one portion of the lung, lobectomy is actually a good option. Since it wont come back to normal ever, it is good to get rid of it so it wont add to further colonization of other parts of the lung. My pft's were never the same, just because a "percentage" was gone. But I bounced back to completely normal....my numbers were just like 75 instead of 100...but its all relative. Even though my numbers now are low (48), I still consider that to be like maybe a 60 if I had all my lungs...get it?

At the time a transplant wasnt even a thought!!! I dont think it can really be seen at all as transplant vs. lobectomy, because they both are trying to solve very different problems. A lobectomy can fix or remove localized infection when the lungs otherwise have a chance of being repaired, whereas transplant is totally different. What bacteria does your neice culture? Is she just very sick, or is one lobe very damaged?

The lobectomy was a tough surgery but I was totally a normal kid after it.


Caitlin

 

[JazzysMom]

I guess we can kind of thing of it as a sick plant. If you have leaves or branches of a plant that have a fungus, in order to save the rest of the plant from getting the fungus & in order for all nutrition etc to get to the healthy part; you must remove the infected or dead part. The same applies to a lung I guess.

 

[anonymous]

yeah Melissa that is a really good analogy

it is definitely different from a transplant

 

[anonymous]

that was me sorry, Caitlin

 

[Marjolein]

I've read the story of someone who had lobectomy when she was a child. And doctors removed more of her lungs a few years ago. After that they had to place a balloon cause if that space in her chest would be empty too long there there wouldn't be place for new lungs anymore when she needs her transplant.

 

[DianeM]

Thanks for all of the advice. TeeHee is my wonderful sister-in-law doing some research for me as I have been so busy with my 6 year old daughter. She has been in and out of the hospital over the past year - with a total of 6 tune-ups with a span of 14 months between the first and and the latest one! We have had a challenging time with her, trying to keep her well. She was diagnosed with CFRD last January in the midst of all of these infections - which leads to the chicken or the egg question...Is it the high sugars causing the infection or the infection causing the high sugars?

Her infection seems concentrated in the right lower lobe with the right middle lobe partly affected. Shortly after a tune-up, these areas become reinfected. It has been such a fight to rid her body of this infection. The doctors are about ready to explore the last resort - which is a lobectomy...My husband and I are very worried about this - because once it is gone, it is gone and we will have to pray that her remaining lung (left and right upper) remain strong and as healthy as possible.

My husband and I don't want to make a wrong decision and blame ourselves later. What stress for parents to make such decisions. This website is such a support to us, knowing that others may know about or have experienced issues like this.

Mother of Danielle(w/CF) and two other children (w/o CF)

 

[anonymous]

I had a lower left lobectomy when I was 14 and it saved my life, as far as I know. The part of my lung removed was chronically collapsed and seriously infected, and continually infecting the rest of my lungs. The surgery was really tough-- about 7 hours on the operating table and I lost a lot of blood, needed transfusions and stuff... that, as far as I know, is pretty unusual for this specific surgery though. It took me about a year to fully recover and spent about 2 months in bed after that but went in very sick. That was almost 10 years ago and I think it really helped me in the long term.

-rotandroll

 

[anonymous]

One thing about having had a lobectomy so long ago, is that when it comes time to get a transplant (hopefully like two years off or more!) it may be hard transplanting into the left side of my chest cavity because the other things (including the lung) have expanded to fill in the space that my lobe once filled.

Just another thought.
-rotandroll

 

[DianeM]

Thank you so much for responding...It is nice to hear from someone who has experienced a lobectomy so that we know what to expect with the surgery as well as the recovery time. Your situation sounds very similar to Danielle - although it is the right lower and middle lobes that are affected. She, like you, is constantly becoming reinfected and her lungs collapse in this area and then it is a struggle to reinflate that area.

I am encouraged after hearing from you that maybe Danielle will feel a lot better without getting these chronic infections if she has a lobectomy..However, we are praying for a Christmas miracle that she gets better....I would like to pray for a Christmas miracle for everyone with Cystic Fibrosis!

Anyways, can you think back to when you first started having problems with your left lower lobe. How long did it take to develop issues with your lower left lobe or was there always a weakness to this area. My husband and I are constantly thinking about when this all started to happen...We wish that this could have been prevented somehow before it got to this stage...We have always been deligient with her therapies and always attended her CF clinics...but, why did it get to this stage?? I guess I have a lot of questions....but, I guess we just have to continue from the present point.

Diane

 

[anonymous]

Hey Diane. Try not to worry about how the problem got started, more so worry about how it will get fixed! Atleast for the time being...!

I started having problems with my left lung very young. When I was about a year and a half old my left lung collapsed and would not reinflate for about a year and a half. My heart became enlarged and my valves in my heart became lazy, hence I now have heart disease, also, we think this is what caused the long term problem with my left lower lobe.

The surgery, like I said, was really difficult for me, but I can positively say that I think I would not be alive now if I hadn't had the procedure done. I know that sometimes they can do the surgery orthoscopically (with a camera and small incisions) but mine was done by cutting about an eight or nine inch incision on my left side, through muscle, and seperating the ribs to remove the lobe.

I really hope that this works out for your daughter. I am sending sincere thoughts and prayers to you and your family. I wish you a very happy new year!

-Melanie
(aka rotandroll)

My email, if you need anything please don't hesitate to email me!: mcuplin@gmail.com