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Here is a very good article, for all to read!!!!

Check out this recently published article on extrahepatic manifestations of HCV.  This covers just about everything you ever wanted to know about HCV related problems, and then some.

Comments and discussion encouraged, from everyone.

http://www.natap.org/2006/HCV/041906_03.htm

DoubleDose
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Avatar universal
hmmmmm, maybe i better rethink this, maybe i'll sleep on it for a couple years. And get back to you on it. And your husband would be wise to make sure you never ever have access to any coins.

2 years of pure hell and you still have a great sense of humor. i feel like such a wimp. Thanks for the laugh. Its 5:00 am and i've never laughed that hard. My wife just yelled from the bedroom and said how can something be so funny this early? I told her to read the post later and she'd know. But now i'm thinking it might give her some new ideal. Enjoy your SVR day and we should have e-mails later.
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You said...........Ivette can vouch that I am not a child/adult male molester :)
---------------------------------------------------------------

Could you work on that adult male molester? :)

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or, if you add belleus to my name and send it to those yahooing people, Ina will get it also. She might have some good ideas and maybe a way to get a list of choice drs.

where was the golf club?
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Avatar universal
No, Ina, I can't say you left anything out!
I encourage can do to contact you asap, and to get that PCR soon. I wish I had not waited until wk 24 to get mine, I might have added extra wks that I did not need, but given that no long term bad effects resulted, I do not regret it. All I know is that we have to be ready to change if necessary and listen attentively to that inner voice, it is almost always right. Mine told me not to stop at wk 48, but could not tell me how long to go, a lot of reading, asking and gut searching went into that.

Go for the PCR, you need to know how the tx is working right now.
take care
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Avatar universal
Dear SVR Eisbein, cuteus Will be in touch, had my appointment with my hepo today, After i told him to listen his golf game could wait. He smiled and just said ok i see your serious. Pulled out my list of questions went though a few but i knew he doesn't have all day. So he went out and told his nurse TO find a opening for monday may 1st. the nurse came back and said there was a cancel at 2:40 and she changed another appointment for later so my hepo said we would have 2 back to back appointments and he asked me to email him my list of questions and concerns tonight and that way it would give him the weekend to go over them. He's always been good about answering my emails so i know he will go over them this weekend. mainly told him if he had any ideal about pulling the plug at 24 if still not UD then tell me now. He also told me any other things to just keep emailing him with it. He said i know you have at least one joke to tell me. I just said, you ever here about the hepo who had to go to the er to have a golf club removed. He smiled and said he didn't think he wanted to. So if you gals don't mind any thing you think please let me know. Because if i don't like what i hear monday then next week i spend my time finding some one. One of you will be getting my email addy from someone here you know and trust. Either tonight or tomorrow, as i couldn't find yours. Thank you both very much And Eisbein YOU do come first. If your not feeling good i still have 6 weeks.
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Cuteus wow, thanks for the kinds words.

Eisbien, cuteus First if i had my hat handy id have to eat it, i swore i would not become obsessed with this. I just wish i would have been lucky enough when you 2 and willing, tenhepguy, mikesimon, and im sure others that were here treating at the time that i've missed. i posted in a thread up top on anyone about Dr. Schiff. I really don't think my hepo will pull the plug if im not UD at 24 but if i get that feeling he might then i have about 6 weeks. My hepo has been in many studys with some of the best, gave speeches at the conferences, has conducted his own studys and is highly respected in my state. But thats one of the problems going to another one here. First thing theyed say is why when you have him. Or think i'm a problem patient. Which i'm not, my hepo has told me i'm one of his favorites and goes out of his way when im there for labs to stop in and at least wave and ask if i'm needing anything for sx's.

The reason i mention Dr Schiff is i'm familiar with south florida and where to stay. My insurance is good and would cover him, BUT i have to work and while i could make trips there at times. He would have to be willing to tx and let me fax labs and work with my family doctor. At stage 4 i just don't want to quit and have to start all over. Could i last as long as you 2 did? i don't know, Women seem to handle pain and sx's better then us men. I mean you handle child birth. Take care and again thanks and any advice very welcomed
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Avatar universal
Ina, what a sweet guy he is! SVR has to be his!
it can be done, we know, although you are still doubting yours.  IT CAN BE DONE, and we don't have to be bedbound to get it, just persistent and go with the gut.
be well, you both
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HI, No very glad you answered. First i want to thank you for stepping in on that no sx's you don't clear. And also cuteus to.
Just wished some of the other smart ones thats been here awhile would have. I've read some silly stuff here before and then it gets repeated over and over and soon it becomes gospel. But when it comes to something serious then it should be stopped right then. Alot of lurkers here and newbies and they read that and think oh great my sx's are bad so i can slack off because i've won this, or like me who so far have been lucky and as of yet the sx's have been fairly good to me. So if i didn't know any better and thought what they were saying was true being at week 18 and still not UD id say why go on treating. I have a hard time thinking with all the hepatologist out there that some wouldn't have notice this trend by now. Oh Well

Going for pcr at week 20, meet with my hepatologist this thursday. Going to ask alot of questions. If he says we stop at 24 if i'm still not UD then i have about 6 weeks to try to get in to someone else. Im not a quitter and as long as the sx's are doable i feel i have to do something.

Any suggestions? Advice? Would gladly be taken. Thanks and i know you have alot going on. So don't think if you don't feel like answering that i would take it personal. You've worked alot harder and longer then me. You come first.
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that is if you don't mind to be seen arm in arm with a 59 year old............. Id fill lucky
----------------------------------------------------------------



People here going through tougher times then me, Im 48 married 27 years, 2 boys, 2 grandsons, Their my buddies. Thankful i have a good job and a good company to work for. They remember all the extra hours i put in on my time so now they said its your turn. Was brought up with the if you don't have the money to pay for it, then wait till you do. Except for a house and  a car. Im stage 4 grade 3 on week 17 (i think) viral load at start a little over 11 millon. Only had a close 2 log drop at week 12. Tx so far has not been to bad for me. So we upped the riba to 1400mg a day. Will meet with my hepo this thursday. At my stage theres not to many options. Keep treating or go maintance and hope these new drugs work out and fast. Could i be as strong as you and go 2 years? I really don't think so. You take care and i wish the best for you..... BTW thanks for asking
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Should have been stage 4 GRADE 2. Sure don't want to get there any faster
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There you is, Have you been feeling any better? Got those dancing shoes out so we can hit the town when you get that SVR paper in your hands? Only the best for you here on out, you've more then earned it girl.:)
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Thanks everyone for the kindness, you guys bring tears to my eyes, but your right I refuse to give up, and Kathy I will call dr Monday about white count. There's got to be an explanation for all this. I'm in Knoxville TN, BTW, realpretty right now. Thanks again. Linda
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Ina, what lovely things you have to say.  I am glad you are feeling well enough now to start contributing to the forum again.  I have always enjoyed reading your posts.  I am envisioning you in your bee  keeper getup.  What a hoot.

Lin, hang in there.  I guess that is all you can do.  Fate has certainly dumped a load on you, but you keep on pulling through. You are a fighter, that much I know.   Aren't you in North Carolina or somewheres thereabouts?  It must be beautiful there now.  It is beautiful here in W Texas right now.  Take care.
Kathy
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Forgot they have never said anything about white counts, I'll have to check on that. Thanks again Linda
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Hey Kathy, thanks for answering, I'm with you I think all of this is being caused by interferon. I've always had upper resp. problems but never like this, I'll get well and feel good for few days and sick again. This time I got over gout but meds made me very sick. couldn't keep nothing on stomach, Then turn around and get cold, now it hurts so bad to cough I feel like crying. And I'm sure I'm having some reaction from the no smoke, but I've been too sick to think about it. Hate to be gorry but looks like I'm coughing up pus. But you're right they just keep throwing things at me. I honestly wonder how much I can take. I still just keep on pushing. haven't smoked in 2 wks, since they told me this haven't even wanted too. Thanks for answering Kathy, I feel like I'm going off deep end sometimes. And for everyone else thanks for words of encouragement. Linda
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Avatar universal
Thanks for hunting down more info - and for posting the answers to the questions I had regarding the Pardo study.


Alter and Pawlorsky seem only to address the issue of potential for relapse, which given 15+ years worth of data from mono and combo tx'ing is pretty much self-evident - i.e: that SVR holds a high percentage over time. That much is easily agreeable.

What gets tricky in my book is what the implications are (if any) of having low-level ongoing replicative infection. Even if kept in relative "check" by the immune system, the mere active viral presence has the potential to be an issue - both hepatically and extra-hepatically.


More seems to be known regarding occult Hep B than Hep C at this point. Though of course there is no direct correlation, some useful insight can possibly be gleaned from what is already out there on occult Hep B, such as:

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16453330&query_hl=2&itool=pubmed_DocSum">Occult hepatitis B virus infection is associated with the development of hepatocellular carcinoma in chronic hepatitis C patients</a>

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16421814&query_hl=2&itool=pubmed_DocSum">Clinical significance of occult hepatitis B virus infection cannot be overlooked</a>

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16168517&query_hl=2&itool=pubmed_DocSum">Transmission of occult hepatitis B virus by transfusion to adult and pediatric recipients in Taiwan</a>

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14699513&query_hl=2&itool=pubmed_DocSum">Occult hepatitis B virus infection in patients with hepatocellular carcinoma: Innocent bystander, cofactor, or culprit?</a>

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16144125&query_hl=2&itool=pubmed_DocSum">Occult viral hepatitis and noncirrhotic hepatocellular carcinoma</a>

(from the above study)

<i>The finding of occult hepatitis B in noncirrhotic hepatocellular carcinomas among patients with hepatitis C who achieved antiviral sustained virologic response raises provocative theories regarding the natural history of both of these viral hepatitis agents.</i>

If occult can "tip" a high-stage patient over into HCC, this appears to be evidence in-and-of-itself of it's ongoing damaging role. Can it also play a similar damaging role in non-hepatic areas, too?


<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15885351&query_hl=2&itool=pubmed_DocSum">Occult hepatitis B virus infection in hematopoietic stem cell donors in a hepatitis B virus endemic area</a>


There are also the obvious issues of potential for transmissibility. For example, HCV can now be tested via saliva. Is occult possibly transmissible this way? Via transfusion and other blood products? Stem cells? etc.



With having a replicating Hep C viral infection within the body, that infection inspiring a corresponding immune response, and an unknown set of overall corporal effects - I'm just not ready yet to write off occult as being benign and/or ignorable.


TnHepGuy
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Avatar universal
A couple of months ago, Hepatology, the AASLD journal, celebrated its 25th with a special issue. Two HCV review articles in that issue referenced the Pham/Radkowski papers : here's what they had to say:

<em>Combination therapy with Peg-IFN and Ribavirin results in a sustained virological response in approximately 50% of genotype 1 infections and 80% in genotype 2 or 3 infections. This response rate is now tempered by the study of Radkowski et al.,[32] which found residual HCV RNA in 88% of 17 patients followed for a mean of 64 months post-sustained virological response (SVR). HCV RNA was found predominantly in macrophages and lymphocytes, but also in serum and liver. However, residual viral loads were very low, and, despite persistent virus, liver biopsy showed significant improvement in both inflammation and fibrosis. Residual virus may maintain a persistent humoral and cellular immune response that can hold the virus in check once the viral load has been substantially lowered by therapy. Thus, clinical recurrence has not been a problem in patients who have been followed for up to 15 years. Despite these encouraging long-term clinical results, residual virus raises residual fear that clinical exacerbations could occur if such patients were subsequently immunosuppressed.
</em>
from
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16447286%5Bpmid%5D"> Alter, H. "Viral hepatitis"</a><br>

and

<em>The treatment goal in HCV infection is permanent viral eradication, i.e., cure. This is currently achieved in a substantial proportion of patients by standard therapy with pegylated IFN alfa and ribavirin. The recent report that HCV RNA sequences persist in peripheral blood mononuclear cells of a small number of patients who have had a sustained virological response to IFN alfa-based therapy[104][105] should be seen in the light of clinical evidence that late recurrence is extremely rare, even in patients receiving immunosuppressive therapy. Some such recurrences may in fact correspond to re-infection.</em>
from <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16447262%5Bpmid%5D">Pawlorsky in "Therapy of hepatitis C: From empiricism to eradication"</a>

BTW, Pawlotsky is probably the doyen of HCV clinical research, or at least publishes more reviews than anyone else, though Alter's more cautious assessment seems to be the more accurate one.
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Avatar universal
Hi Kathy, I haven't decided yet about motorcycling. I have a Harly in my garage and a custom chopper at the shop and the warm weather we're having is driving me crazy. There is no urgency aside from my own crazy head.
Smoking: No I don't smoke or chew anymore and I never used the patch. I tried it but had nightmares the first night and I figured I need that hand to mouth thing and active involvement in the habit so the patch wasn't a good option for me. I quit several years before transplant and after 2 years on TX and feeling sicker and sicker I figured I was dying anyway so why not smoke. I never smoked that much before but when I started back again I only smoked 5 to 7 cigarettes a day and mostly only in the evening. Once it looked like I might really clear the HCV I thought about it and realized it would be more than ironic if I got past the transplant and the HCV only to die from cigarettes. So I quit smoking using the strong Nicorette Gum. I got to love that stuff. Quitting the gum was almost as hard as quitting smoking.
Don't beat yourself up over your kids. They really do have minds of their own. They'll figure it out hopefully and put them down. I tell people that everyone I know quits smoking sooner or later. Either the docotr gives them some scary news or they figure it out on their own. I know of very few people who died while still smoking. My Uncle Al did and he was 95. Maybe I should start smoking now that I think about it. Take care Kathy and stay well. Mike
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Avatar universal
looks like the original thread filled up...I poked around a little more and traced the 16 papers that have referenced Radkowski's 2005 paper(<a
href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15619235&query_hl=17&itool=pubmed_docsum">Persistence of hepatitis C virus in patients successfully treated for chronic hepatitis C</a>)<br>

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16611276%5Bpmid%5D"><1>- Effect of anti-viral therapy for occult hepatitis C virus infection</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16464222%5Bpmid%5D"><2>- Cryptogenic cirrhosis and NAFLD: Are they related?</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16447262%5Bpmid%5D"><3>- Therapy of hepatitis C: From empiricism to eradication</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16447286%5Bpmid%5D"><4>- Viral hepatitis</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16441471%5Bpmid%5D"><5>- Long-term follow-up of chronic hepatitis C patients with sustained</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16454708%5Bpmid%5D"><6>- Understanding human immunodeficiency virus type 1 and hepatitis C virus</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16037790%5Bpmid%5D"><7>- Pleiotropic mechanisms of virus survival and persistence</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16107964%5Bpmid%5D"><8>- Reemergence of hepatitis C virus after 8.5 years in a patient with</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16085904%5Bpmid%5D"><9>- Phagocytic activity in human immunodeficiency virus type 1 infection</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=15894587%5Bpmid%5D"><10>- Increased Fas ligand expression of CD4(+) T cells by HCV core induces T</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=16144125%5Bpmid%5D"><11>- Occult viral hepatitis and noncirrhotic hepatocellular carcinoma</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=15962220%5Bpmid%5D"><12>- Detection of hepatitis C virus (HCV) in serum and peripheral-blood</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=15914850%5Bpmid%5D"><13>- Continuous release of hepatitis C virus (HCV) by peripheral blood</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=15866304%5Bpmid%5D"><14>- HCV-indeterminate blood donors or occult HCV infection?</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=15866305%5Bpmid%5D"><15>- HCV-indeterminate blood donors or occult HCV infection? Reply</a><br>
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=15690477%5Bpmid%5D"><16>- HCV persistence: Cure is still a four letter word</a><br>

I believe it's significant that not many researchers are pursuing replication of these results. The likely reason is not that they are suspect (it is the Mayo clinic after all and in my experience scientists love nothing better than skewering "dramatic" but unsubstantiated results), but that, as Jim has pointed out repeatedly, it's just not that important. Obsessing over the remaining stragglers is fun in an Easter-egg hunt sort of way (and there's little doubt that they are there) but it's probably hard to persuade funding agencies to pay for the hunt. Also, I was wrong about the inability to measure negative strand: Radkowski measured it in both lymphocytes and macrophages and Pham in PBMCs.

Also, re Pardo, all patients were 1b and <em> "as our patients were HCV-RNA negative in serum and the percentage of infected hepatocytes is lower in patients with occult HCV infection than in chronically infected patients, we decided to treat them for 6 months" </em>

The authors don't seem too bothered about the residual liver HCV-RNA : <em>"Regarding HCV-RNA in liver, we have found that HCV-RNA remained positive in the five patients (two complete responders, one virological responder,one biochemical responder and one non-responder) with available post-treatment biopsies. This finding is in agreement with a prievious work in which it has been reported that HCV-RNA persists in the liver of 27% of chronic hepatitis C patients with sustained response for years after the end of therapy"</em> and cite
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=15619235%5Bpmid%5D"> Persistence of hepatitis C virus in patients successfully treated for chronic hepatitis</a><br>
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131114 tn?1380083190
yo i am in west texas near mason on the llano river. all you texans watch out for possums..... i used to live in austin!

i agree that lin should check her CBC and get help for the infections. my ma has copd and when she gets sick it is a mess. but since we can get help for blood issues, that sounds like a good place to start.

i am so sorry you are having a bd time of it, i know a lady who went into pre-prep for liver transplant and now she says she doesn't need it. i don't know what they did, but i hope things get better for you and don't smoke!!!!!!!

i also have reactions in the sinus and lungs while on tx. altho i have been a health food person all my life, i have decided to take the drugs for sx rather than suffer thru it. allegre d is really helping me with "allergies" and congestion. i take it after the nexium and before my nightly riba. somedays 2x a day.

i take .25 xanax every morn for panic attacks and AD at night - supposedly the AD will kick in and i won't need the xanax, which i pretty much took thru most of tx 1.
my dose has not gone up and it seems to prevent stuff. a nurse frind of mine says it'
s better to prevent the stress on your bod than to not take the meds.... just her opinion.i am eating as fat as i can!

today i go up to 150 per intron from 120. hope i'll be ok! it's friday, dee-dee-dee
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Avatar universal
Interesting info on nicotine. So I guess you are off the patches and the smoke?  Ya know, all 3 of my kids smoke -- where did I go wrong?????  I was actually not smoking when we adopted the 3
in 1982, but had to take it back up for a year or so - talk about stress there (LOL)(of being a new parent to three)

Hope you are well today.  What did you decide about the bike?  Going for a ride?
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Nicotine retards bone growth so if you break a bone don't smoke, use a patch or chew nocotine gum. I found this out the hard way. Mike
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Sorry to thread jump like this but I've been trying to post since last wk. Hope everyone is doing okay. Sorry haven't been posting lately but got devastating news last wk and have been trying to deal with it, plus developed gout in my hands, acute gout never knew anything could hurt like that. Plus keep getting sinus infections that are going to my ear. I've been on so many antobotics I think I'm immune to them, Anyway was told last wk that they think I'm too high risk for transplant, said they could have problems getting off respirator and could end up with permanent trac in my throat. I have COPD and my oxygen level drops real bad on exertion. They want to put me on oxy. all the time, told them no. Course just found this out too. So after 30 yrs I have quit smoking, don't even want to smoke. But on top of that had to make emergency appt with dr. yesterday, I have real bad bronchial infection, lost my voice, and basically feel like ****. So with the no smoking see how it looks when I get off tx. I can't let this beat me, I've come to far, course it broke my heart last wk. Just been really wanting to tell you guys and couldn't post. Any words of wisdom? Thanks Linda
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Avatar universal
I am devastated to read what you have written, my friend.  Things just seem to get thrown at you from all different angles.  What you said about not being a transplant candidate because of problems getting off the respirator is absolutely frightening.

I am concerned that some of the issues you have right now are being brought on by the interferon.  I know the gout is an auto immune problem and I think it can be brought on by the interferon.  I have never seen you post any info on your white counts, but I wonder if your ANC (absolute neutrophils) are way down, leaving you open to infection.  Have your doctors ever suggested Neupogen to boost the white blood development?  This might help with all the infections.  I know the interferon has helped with all the renal failure symptoms, but I wonder now if it isn't creating problems on its own.

The correlation between COPD and hepatitis C is going to be my next topic of research.  When I had bronchitis about 5 weeks ago, I thought I would die.  My chest felt like it was going to cave in and I could hardly breathe. I never had so much pain in my chest before.  I could not even bend over.  I never had a cough, so it was an odd bronchitis.  I slept for 3 days, and in that time was deathly sick, and shuffled like a person in their 80's.  Now I am 58 and my mom was on oxygen for 4 years already by the time she was my age (she had quit smoking at age 40, byw).She died of COPD at 65.  In those few days that I was so sick, I saw her in the mirror and it frightened me.  

Lin, I am so glad you have quit smoking.  I quit over 20 years ago and still have mild COPD.  Quitting smoking was so very hard and I will be thinking of you.  Please stick to it.  Get some Tick Tacks or something.  Please take care of yourself.  Post back.  I want to hear from you.  And, if the doctors say it is time, consider the oxygen.  It may help with quality of life and clearer thinking.
Kathy
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