48 Weeks of Hep C Treatment - A retrospective
As promised here is my experience of the last 48 weeks. Remember I still have another 20 odd weeks to do but for this post I’m pretending I have finished. First off you need to know a little more about me, it may help you see through my “spin” if you know how my mind works so pull up a chair.
I don’t believe in God but do believe in miracles.
I believe that you can break the most complex of problems down into a series of bite sized simple problems.
I think if you trip over a kerb stone you should immeadiatly think to look where you are going rather than sue the person that laid it.
I have been in jail, in a mental hospital and in Las Vegas…Vegas was worse.
I have zero tolerence to whining.
My family is the most important thing in my life.
The reason the poor are poor is because they are stupid.
I don’t know anybody who is single and happy.
Politically I find it hard to fit a pidgeon hole but minarchist may be the closest.
My special talent/party trick is being able to “spot” Gay men, its wierd but I can tell if somebody is Gay from a distance of 500 yards even before they know they are Gay.
There is no money in Gay spotting.
I think that it is important that everybody sticks to the rules but those same rules do not apply to me.
My favourite film is Kes.
Chris Rock is the funnist person alive.
I live by the Golden Rule which means if I clip your heels with my supermarket trolly I will apologise, it also means if you glare at me after I apologise I will smack you straight in the mouth.
I was once banned from 3 supermarkets in my home town.
I own 4 ipods.
Some stats.
I’m early 40’s, Male, Hep C since 16 [IVDU of course], Genotype 1 and have Cirrhosis. I have had Hep B too.
So how was it for me?
Physically
For me and indeed the majority on treatment it has been tolerable. My bloods have remain strong throughout particulary my hemoglobin which only very briefly dipped under 12. Having said that the raw hemoglobin numbers don’t always tell the true story, its more to do with how far it falls and of course how fast. My liver Doc says that hemoglobin doesn’t become a big problem until you get very close to 10 and as always he is right. Having said that if your hemoglobin drops 3 or 4 points in a couple of weeks you will feel like all the life has been sucked out of your body. I think the average fall in hemoglobin for people on treatment in the first few weeks is about 3 points, that will smart a bit for a few days/weeks until your body adapts.
My worst problem was the insomnia in the first 12 weeks, I really didn’t sleep at all and this really did pile on the tiredness. In the end I had a 30 day course of sleeping tablets which in some way has solved the problem but looking back I think if I had prepared better I could have avoided them. I would have liked to avoid them because everytime I walked passed the kitchen cupboard where they were kept I heard them say “you are weak”, and they had a point.
The two days after injection day have always been the worst for me, I was and still am completely wiped out. It is not unusual for me to go to bed on Friday night and get up Monday morning.
Work wise in the first 12 weeks I did very little, since then virtually every day and its an area that has gotten easier as time has passed. I wouldn’t say I’m at 100% workwise but more than enough to do an excellent job, I will say though that if I fall behind I find it very hard to catch up, my reserve tank is pretty low.
Dry skin, dry mouth, aches and a bit of itching but nothing too bad. The ringing in my ears is just about tolerable.
Hair, well I may have a little rant about that later.
All in all not to bad, bear in mind that I’m not a fan of painkillers and have had less than 15 in the last 48 weeks. I look at it this way, if a couple of paracetomel makes pain go away it isn’t pain just minor discomfort.
On a scale of Brutal > Harsh > Tough I would rate the physical aspect of the 48 weeks as being in the bottom end of Tough.
Mentally
Now here is where it gets interesting
I have found the mental side of things much tougher than the physical, if you are not careful your mind can start to wander and there is no telling where it can go to. The key to preventing that is, imho, vigilance. I have needed to concentrate for almost every minuite of everyday for the whole 48 weeks, that my friends is very tiring. You don’t go mad overnight, its a series of small seemingly innocent steps which if you are not careful will lead to a place where its very hard to get back from.
There you are walking down the street when you spot a £5 note on the floor, you pick it up spend it on a lottery ticket and win £500. Six months later you are living in one room above a Latvian brothel covered in your own vomit whislt furiously masturbating to transsexual p0rn as “I love Lucy” re-runs play endlessly on the TV whose sound is broke. It is a rare person who gets to that stage and suddenly says “fcuk me I’ve gone mad”, its too late. The only way you could have stpped yourself going mad was not to pick up the £5 note and thats what I have spent 48 weeks concentrating on.
For me Riba rage hasn’t been an issue on treatment, I’ve been irritable but then I always have but have rarely lost my temper. I would say overall I’m in many ways calmer but think that may be because you lose a bit of confidence both in your mental and physical abilities. I have certainly beome “quieter”, more isolated, but much of that is because I need to concentrate harder, I need to conserve my brain power.
On my scale the metal issues hit somewhere around the lower end of harsh.
Now I hope that comes across as largely positive, it really hasn’t been all that bad to be honest, I’d do it all again in a heartbeat. If truth be told the treatment part of it isn’t even the majority, the diagnosis and then the wait to treat is at least 50% of the pain. The bad news about that is that those of you who “only” have to do 24 weeks won’t get away lightly, you will less but not much. From 24 weeks on its just been a bit of a grind.
They say that treatment can bring the strongest person to their knees and the weakest can flourish, that I’m afraid is bullshit. The people most at risk are those who are weak who think they are strong, if thats you expect a rough ride.
So thats it really, I’ve missed loads out but hopefully will catch up later.
August 20th, 2006 at 9:37 am
Interesting, you leave the most important things out! A Psychologist’s nightmare. You are right about ’spin’
Having just read certain threads on the forum, can’t say I’ve ever had a problem with you. Having just read this, I can understand why.
At week 48 to most I would be saying ‘Well Done it’s over’. You also get the well done bit, it’s well deserved. A lesser man than you would have crumpled by now.
Take care of yourself.
Carol
August 21st, 2006 at 5:10 am
>you leave the most important things out!
Now you have me curious about myself! What do you think I have missed out?
>can’t say I’ve ever had a problem with you
I’m the nicest boy you will ever meet.
August 21st, 2006 at 2:28 pm
Your one of the most honest boys (?) I’ve ever virtually come across. I admire your courage and honesty and wish you nothing but the very best.
Tracey
August 24th, 2006 at 3:41 pm
There are a few thing that I would like to ask you about, whether I get and answer is a different thing.
Jail and Vegas? Care to share?
I have to say I disagree with a few things, anything I don’t point out, I agree with you 100%.
>>I don’t know anybody who is single and happy.
I do, but I can’t see why.
>>I can tell if somebody is Gay from a distance of 500 yards
I have met gays that say this and thought, “horseshit”, but for the gays that claim “gaydar” I suspect it is them, well, spouting horseshit.
>>I was once banned from 3 supermarkets in my home town.
That sounds intriguing, please tell. My only claim to fame is a justified 7Eleven banning.
I am fortunate enough, in life, to be pretty healthy but what advice can you offer that may cross over into other peoples lives, for both HepC sufferers and not, for example:
With respect to dealing with the disease and associated problems, what would you do differently in your life, now and in your treatment?
What can you pass on to people in a similar boat, I have a feeling that you may be able to encourage people?
cheers
August 27th, 2006 at 1:56 pm
Well, Friday was day 1 for me. Went to UNM and spent 5 hours. Learned to do the injection and take the ribavirin and VX-950. 5 blood draws and 5 ECGs later went back to Santa Fe. I was prepared for the worst and hoping for the best. Have to say that I have had almost no side effects. I have felt a little foggy and tired, but thus far no flu-like symptoms. As I told the study coordinators, I have never had the flu, so I’ve never experienced those symptoms - maybe my body just doesn’t know what to do. Anyway, hope it stays like this.
I called Friday V-V day - Victory over the Virus. I can visualize the drugs kicking ass.
Plan to look for Kes.
August 28th, 2006 at 1:26 pm
Well gimpy I think we will be meeting up in a few weeks so I’ll tell you all then.
In the meantime you seem over;y concerned about the gay spotting thing. Rest assured my abilities only extend to the full on gay gentlemen, should you have had one drink too many one night and found yourself in the arms of a muscular yet sensitive lover I won’t be able to tell.
August 28th, 2006 at 1:29 pm
Good news NM girl , nice to get the battle underway!
I didn’t have any flu stuff first shot, for me it was the second. Nothing too bad, just feels like you have been beaten up. In my case that was by far the worst week for the flu stuff, its hardly even notciable after that.
Good luck and keep in touch!
>kes
Good luck with that, it was filmed just a few miles from where I am from and I struggle to understand the accents
September 2nd, 2006 at 2:38 pm
I takes great mental concentration to keep things simple. that has been my greatest suprise & challenge so far (22 weeks and counting)
May 30th, 2007 at 2:33 pm
First I thought your bio was hilarious. Second I am type 2 and almost finished with treatment. My prognosis is for a comlpete cure since I was negative viral at 30 days. You were right that the mental side is worse than the physical, that is as long as I dont try to do something stupid like walk to fast. It has had it’s bad moments but all in all it was not as bad as I thought it would be. That doesn’t meanthe it was fun, but it could have been worse. My advice to anyone regardless of if you are in need of 24 or 48 week treatment. If it was a matter of life or death. That is, if the option to having the weekly injection and taking the riboviron was dying. Then the treatment would seem like a small price to pay for another week of life. Fortunately it isn’t a lifelong treatment, 48 weeks at worst case scenario. Good luck to all and it is true that waiting to start can be worse than the treatment itself.
November 1st, 2007 at 6:03 pm
I liked the intro. I am on my 47th week of hep C tx. I am another iv user and have genotype 1a. I haven’t had hepc since 10th week. I’m doing combo tx. These drugs are a miracle and I am truly thankful. I turn 26 tomorrow and feel so blessed to be healthy again. I am going to nursing school and have a beautiful daughter and husband who both remain hepc free. My tx was easy. I just had migraines the day of and before shot. Weird. Also I suffered from mild hair loss. My hair sheds but it is only noticeable to me. Anyone beginning I wish you luck. It’s not bad. Everyone’s different, remember when comparing stories. Drink lots of water and take it easy and the year will fly. I promise!!! Best wishes, Love, Erica
November 1st, 2007 at 6:04 pm
I forgot I was usually irritable before tx but the headaches and tiredness made me more irritable. I had to become antisocial to not offend anyone with my snippyness.
November 9th, 2007 at 3:01 pm
Just finished tx today!!!!!!!!!!!!! It really went quick.