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1746242 tn?1318209702

Happiness short lived

Happiness short lived
My hep c NP called me today and said I have bad news for you, you are done treatment. I guess well I was in lala land in the ER they did chest x-rays and all kinds of test. I guess the chest x-ray was bad. Of course my mind went into shock mode and I can't remember what the two lung conditions she told me I had but she did say that the interferon makes it worse. Whatever it was she said it makes the outside lining of the lungs become hard and it is irreversible. I will post more when I have answers. It is really scary, I made a joke and the NP was like deadpan serious and she said you are a very sick woman and need to see your Pulmonologist this week. I'm still in shock.
Can -do -man I completed 40 out of 48 weeks. They acted like that was a minor issue compared the lung issues.
33 Responses
Avatar universal
  40 out of 48 weeks is amazing,  and you have treated 8 times, if I remember correctly.  You are an amazing Warrior, and someone that I look up to, in awe.
     Lets hope your lungs start feeling better, now that you are off the Tx. I will be praying for you to heal up, and remain Und-
    
446474 tn?1446347682
I am very sorry to hear the news. You must be stunned and in shock. I am so sorry that you have come so far with your treatment and now have to deal with this. Of course you tried to lighten things up by joking around. It is a normal reaction. When we are stunned by being told we have a very serious medical problem either we try to make a joke to relieve the tension or start crying. Either is appropriate under the circumstances.

2 months short of 48 weeks. Damn. But it best to stop treatment then risk any irreversible damage.
(I tried to find out your stage of liver disease but couldn't find anything in your profile). I hope you can wait for interferon free treatment in the future.

Meanwhile first things first. Take care of your lung issues. Remember liver disease progresses slowly many other diseases don't. Try not to let your mind run to wild (easy for me to say). Try to focus on taking it one step at a time. You will see a Pulmonologist and learn what is going on. And together with the doctor you will do what you have to do just like with your hep C.

Remember we all tend to think the worse just like when we found out we had hepatitis C. We thought it was the end of the world. In time we learned that was not the case. Of course the unknown is scary and disorientating.

I have a similar 180 happen to me a year ago. I somehow thought I was going to beat my hep C even last year despite having decompensated in 2009. I figured there had to be some way, some how. Me. Transplant? No way. I can tell you I was devastated when I got my liver cancer diagnoses. It ended all my hopes of avoiding transplant and everything that goes with it. All my options had run out. It was scary and very dark times for me. But I did what I had to do. I did the chemo treatments and I am still here today. And if I have to do more chemo... so be it. I am not planning on dying any time soon if I can help it.
We do what we gotta do. We didn't volunteer for any of this. But we take responsibly for our lives and deal with what comes our way as best we can. You couldn't have kept trying to cure your hep C with all your treatment attempts if you weren't a fighter.

Hang in there. This will be a tough 180 degree turn and adjustment but you can do it. It is heartbreaking to have come so far but you did all in your power to complete treatment. That is all any of us can do. Many things are beyond our control. But what is within our control we will fight like the devil to give it our all and fight the good fight. What else is there?

Hang in there. You are stronger than you know.

Best!
Hector
190885 tn?1333025891
i'm glad to see you caught this in time....good luck with everything...you might just end up doing really good in time...billy
223152 tn?1346978371
Hector is right -- we got to do what we got to do.  I am really saddened that you had to quit early - I think you needed the full 48 -- but so be it.  The lungs come first here.  

This is from that article from CHEST --

IFN-α was documented to successfully treat chronic HCV infection very early after HCV was first isolated.101102 This discovery was soon followed by reports of cases of IFN-associated pulmonary complications. Most of these were case reports, making it difficult to accurately estimate the incidence of such complications. However, interstitial pneumonitis, BOOP, ARDS, pulmonary hypertension, exacerbation of asthma, and sarcoid-like disease have been described in patients with hepatitis C undergoing treatment with IFN.

"Okanoue and his colleagues103 evaluated the complications of IFN in 987 patients, 3 of whom acquired interstitial pneumonia related to IFN therapy. In one report,104 the incidence of interstitial pneumonia due to IFN therapy was thought to be approximately 0.2%. Table 2 summarizes the spectrum of pulmonary complications induced by IFN therapy as documented in the literature. While interstitial pneumonia and sarcoidosis are well-reported complications, the remainder represent rarely associated complications of IFN therapy. "

Rockymoe -- it looks like you are going to need a non-interferon treatment.  Some of this damage may have come from your 8 treatments.  Since  your cirrhosis is compensated, you will just have to be careful and take care of yourself.  There is time.

bean
1652596 tn?1342011626
i'm sorry to hear about your latest news.  i'm sending you hugs and prayers.  i'm thinking positive thoughts for you.  best wishes.  belle
1815939 tn?1377991799
I am sorry that you had to stop treatment early. I know it must be devastating. But, as others have said, you are a reak fighter and you can still beat Hep C and take care of your lungs.

Best of wishes.
Avatar universal
Fingers crossed Rocky
Avatar universal
I hope that it isn't interstitial pneumonia.  It's very serious.  Do not delay either diagnosis or treatment.

For the moment forget about the Hep C treatment, it is way down or off of the list.

DO keep in contact with people you can talk to or help you with this.

willy
179856 tn?1333547362
I'm sorry this sounds very scary and dangerous, I hope you are following up on it right away. I too agree HCV should be at the bottom of the list right now.

Wishing you the best.
Avatar universal
I'm sorry that you have to deal with this.
I wish you the very best going forward.

Mike
Avatar universal
Sorry to hear this after all your valiant efforts. I am adding you to my prayers.

Jilly
Avatar universal
I am so sorry to hear about your lung issues, I was going to do 3x and then found out I had a form of lupus possible drug induced from my ruptured silicone implants or Wellbutrin, so I didn't go on it for fear of aggravating it, waiting for all orals

You may have cleared the HCV with 40 weeks, but if you didn't the orals are an alternative

Wishing you all the best and see your pulmonary md , many lung issues can be reversed with medication

I have asthma, have had pneumonia, serositis and various Lung issues, nodules from exposure to fungus, you can recover from many things
Xoxo C
163305 tn?1333668571
My words can only duplicate what others have already said.
You indeed may have beat hep C, and you may indeed jump this next hurdle as well.
Wishing you the very best~
OH
2038871 tn?1329798210
you have alot of support here and i think you have alot of fight in ya! So hang in there because you are worth the fight! to want to live. Like Hector said none of us volunteered for this and yet we are walking thru it. You in my thoughts and prayers and some of these medical folks just dont have a heart so dont let that bother you we all have our own way of dealing with serious stuff for me I just go blank..and dont feel anything till later. So hang in there hun everyone is pulling for ya!
766573 tn?1365166466
¡Hola Cristina!

Seriously?  You had your x-ray.......lemme see...on May 6?
11 (eleven)  days ago?
The day the doctor told you to stop your asthma meds?
I was taking heart in the fact that so much time lapsed between
your x-ray and well....right now.

You clearly need more info. Maybe when you are calm
and have a clear head you can call back with a pen &
paper handy. Or better yet just to to your doc in person.
Google can be a dangerous prognosticator when one has
less than half the facts and no real context.

Sorry all this is happening. Please post soon,. You do
not have to go through whatever this is alone.
I hope you take a friend or family member with you
when you talk to your doctor.
Hang in there!
Avatar universal
Take a deep breath. Take care of ur lungs first. Hep can wait. So sorry fir ur troubles.
1746242 tn?1318209702
Thank you for your post. You are a warrior and it sounds like we have the same feeling I have to beat this. I will not let it kill me I want to see my children's, children grow up. I would be doing the same fight you are if they found a tumor. I saw the pulmonologist today and he says it's my heart so now a stress test, another cat scan of lungs to show the blood vessels, and another breathing test. I am still being optomistic for SVR if not there will be another treatment out there another time. I am determine to slay this dragon
BTW I have mild cirrhosis.
1746242 tn?1318209702
Thanks hoping for my miracle!
1746242 tn?1318209702
Thank you for all the kind words, hugs and prayers and positive thoughts. I went to the lung guy today and now he says it's my heart He thinks the right side is enlarged so now stress test, another cat scan of lungs to check the blood vessels, stress test(like I can do this) but I will do it. Also another breathing test. I will keep everyone postd.
1986676 tn?1329862471
I will keep you in my prayers.
Hang in there!
We'll all still be here for you.

Regards, Reva

766573 tn?1365166466
Oy I have been thinking and wondering how you are all day. Glad you made some head way with tests and gaining at least a general idea what is going on with your heart & lungs and all. Please keep posting! You do not have to go through this alone plus - as you know there is lots of experience and knowledge here♥
Avatar universal
Sending positive thoughts your way.  Keep up the fight.. Hopefully, the 40 weeks was enough for the Hep C and they find your other issues treatable.
Please keep us posted..
317787 tn?1473358451
I am so sorry to hear of additional problems.  I agree with everything Hector said as well as everyone else.  Just wanted to add my support to you as well.  It is a shock.  I think when I was treating I thought everything else would wait until I was done.  If you have done 40 weeks, not sure what you used, you could remain UND and get to SVR.  I agree that right now you have to worry about your lungs and heart
I am praying for you
Dee
223152 tn?1346978371
rockymoe - it has got to be all related -- the heart/lung thing.  Maybe it has been ongoing for a long time because you have the asthma but exacerbated by the interferon,  but when the lungs can't pull in enough oxygen, the heart has to work harder and it enlarges.  My mom died of COPD at the young age of 65.  She would have had to have had a heart/lung transplant.  You could actually see that her chest around her heart was bigger.  

I am really surprised the lung specialist is backing off of this.Is it because of the results of the CAT scan?

bean
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