What do you think about lobectomys?

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jenjen2130

New member
My name is Jennifer 32 w/cf. I am having a CT scan on friday and the doctors are concidering me to have a rt upper lobectomy. Because that is where all my problems lie. I just wanted to know if someone could give me some input on this idea.

I wanna talk to some pople that has had a lobectomy and stuff. I just don't know what to do. I haave a 5 year old daughter and husband. I have a mild case of Cf but I have had two major bleeds with the lobe area. With the fisrt one it was back in April I lost alot of blood I had to have a transfusion. The second one was just in October. That is why I am having a CT scan.

I think I am just nervios and scared because I don't really wanna know what the test will show. But on the ohter hand will having a Lobectomy help me in the long run.

Thanks for listening

Jennifer
 
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Diane

New member
Hi Jennifer,
I cant help you with info on the lobectomy , but i was wondering if you had an embolization done when you had your bleeding. Usually they consider the embolization first and a lobectomy last. I had two embolizations after 2 major bleeds and after my second embolization, the intervention radiologist said if this keeps happening ,i could have the area of lung that is the culprit removed.
 
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anonymous

New member
Yes, Diane. I did have two embolization. And I am still cough up blood here and there. So that is why my doctor is suggesting to have the upper lobed removed.
He is also worried because I am not the same after my bleeds. They really scared me. So whenever I cough or do anything I constantly check the sputum to see if it has blood. He said that I went through so much that I have some TRAUMA. Like Post-tramatic stress. So that is why he is saying remove the trouble spots and live a normal life.

Jennifer
 
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anonymous

New member
well, removing the trouble spots and have a normal life seems like a nice idea, but you just have to consider the fact that a lobectomy is not exactly a simple easy surgery or a quick fix, but i am sure you know that. however, bleeding like that must be scary and I am sure you want a solution. I had a left lower lobe lobectomy when I was 11 years old (I am 22 now). It was major surgery and took a lot of recovery. I had a tough time of it because i had some post-operative complications like pneumothorax/drainage problems etc. You never have the same amount of lung capacity again (obviously). I had the lobectomy because hthat portion of my lung was damaged beyond repair from mycobacteria, not because of any bleeding.

I guess I would make sure its the ONLY other option for your health/sanity...and make sure your doctor and maybe another doctor thinks so too...

Caitlin

p.s. ask me any other questions if you have them. catalinaohara@aol.com
 
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Diane

New member
Jennifer,
I know exactly what you went thru and are still going thru. My doctor said the same thing about the post traumatic stress, and made me go to a psychiatrist after my second embolization because i wouldnt go back to work, wouldnt leave the house, was afraid to swallow anything including food for fear i'd choke or inhale it. Then started having terrible panic attacks that were uncontrolable and not letting up and even after three years i still refuse to lay flat ( since most episodes were while laying flat). I was prescribed Zoloft. It has helped tremendously, but unfortunately i still get some panic attacks but they are managable now. I still have hemoptysis ( actually quite frequently) was hospitalized last january for one, and thought it would just never stop. I started using L-Lysine 1000mg. 4 times per day and that seemed to be the only thing that helped put a halt to the nonstop episodes. I still have streaks here and there, and times of a small bleed, but not like before i started using the L-Lysine. My doctor also put me on oral birth control to help control the bleeding in my lungs ( the estrogen helps keep the blood vessels pliable so they dont break as easily) I also take 10 mg. of vitamin K every night before bed. Have you tried any of these remedies? You may want to give them a try before going for a lobectomy.... Like Caitlin said ,it isnt an easy fix ( or doesnt sound like one)
 
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Starfall99

New member
I just have to say when I first saw this topic as I quickly scanned the topic list, I did a triple take because I misread lobectomys as LOBOTOMIES! Haha!! <img src="i/expressions/face-icon-small-blush.gif" border="0">
 
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jaime

New member
Jennifer,

I had a RUL lobectomy in march. It definately was not a fun experience but I think in the long run it was the best decision for my health.
If you would like to email me I can try to answer any questions or just tell you my experience.

Jaime
 
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anonymous

New member
Hi Jennifer -

I had a left upper lobectomy in 1986 (wow typing that just made me realize that it's been 20 years now). The docs did it because that lobe was basically non-functional (I have diffuse bronchiectasis throughout all lobes so still have occasional hemoptysis). In my case, I believe it really helped. Hope you have gotten enough replies to help you make an informed decision.

Good health,

Lori
43 w/CF
 
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anonymous

New member
Jennifer - i was just curious as to whether you have made a decision to have or not have the lobectomy. My lower lobe is the problem and the possibility of a lobectomy was discussed if my last round of IV's doesn't do anything for me. My doctor did make it sound like it would be the last resort at this point though...

Amy
37 w/CF
 
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anonymous

New member
Hi Jennifer,
My name is Alaina and I have had a left lower lobectomy due to hemoptysis. I am 27 years old and this was done when I was 18. I had a major bleed and they decided to remove rather than embolize. I have since had 5 embolizations, 3 of which have happened this past year. It started in Feb. then June and finally again in Sept. I have not had any blood since then but a few streaks here and there. I also look at my sputum every time I cough. I won't lie on my left side anymore, b/c that is where the blood comes from. It is very scary for me and my husband. I have a 14 month old daughter and I also am very fortunate to have a mild case. If we could just get this blook under control I think I would be alright. You are have every right to be concerned. It is not an easy surgery by any means, but you definitely can get through it. I took my a few months to get back to normal. Unfortunately it did not help as much as they had hoped b/c I still cough up blood from my left side. I am hoping that the embolizations worked this time and I will not see blood for a long, long time. If the doctors think that would be best, go for it. Just make sure your husband and daughter can support themselves for a while during your recovery. I hope this helps. Take care. Alaina
 
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jenjen2130

New member
Well I have made a desison on the whole lobectomy. My doctor and I came to the conclusion that it would not be benefital for me becasue the cf is now in my middle lobe and upper lobe on the right side. So he said it would be a waste to do it.

Jennifer 32/wf cf
 
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