Happy Anniversary!

Today is our 10th wedding anniversary.  In 2001, DH was a Category 4 racer on his cycling team.  He had almost no body fat:  the veins in his arms stuck out.  He bragged on himself when he got his blood chemistry tested at his company's health fair because his cholesterol was so low.  It was about a year later when he donated blood and then received the letter from the blood center with the news that he had antibodies to Hepatits C in his blood (can't help but wonder why he didn't find our earlier).  His family physician told him the blood center had about 50% false positives, but come back for more testing. He chose to believe he was in the 50% and did not go back.  Fast forward to 2009 and I've dragged DH to my family physician because he's having gout-like symptoms and he's past 50 so he ought to be getting physicals and, oh by the way, doc (coming from me) he had this test result 7 years ago.  I'll always remember the look on the doc's face when I mentioned the HCV.  So, doc sends DH's blood off for testing and the result comes back "active Hepatits C."  That's when this journey began.  Off to the gastroenterologist whose name we got from family doc.  52 weeks of treatment, happy, happy when he's negative.  HCV back within 2 months.  We had allowed ourselves to believe he was cured, so those results were a huge disappointment.   Switched docs to current docs (liver specialists - MUCH better).  New docs treat the hemachromotosis that may have affected response to first round of treatment.  Then, 3rd drug approved by FDA and - here we go again. 

This is the 10th anniversary present we want:  CURED!!   SVR (sustained virological response).  Looks like we'll be getting that.

Two sickos in the house...

I elected to have elective surgery on December 22nd because of hip pain from suspected torn cartilage.  Surgery 3 days b/4 Christmas is not such a great idea, but what I really didn't figure in was the fact that now we would be a house with 2 semi-invalids instead of just one.  DH is weak and tired and now he has to wait on me because there's a lot you can't do when you're on crutches!  Oh well...the crutches are temporary.  On Thursday, I get to start using just one crutch.  DH got the medicine for the anemia from the mail-it pharmacy, but they didn't send syringes!  So, he hasn't had the 2nd shot yet.  He was supposed to have it on Sunday - today is Tuesday.  We'll have to see about getting some syringes today.

Yet another drug...

DH got his prescription for the Neulasta - or something like the Neulasta.  It's going to be another shot.  Hoping for few side effects.  One of the listed possible side effects is a ruptured spleen!!  Certainly hoping that doesn't happen.

Fighting anemia

DH found out today that his white blood cell count is low.  He has to take a 2nd injection every week and cut his Interferon in 1/2.  He DOES get to quit after another 8 weeks, but the hope is that he makes it through the 8 weeks without becoming anemic and having to stop.  He will be getting his blood tests every week for the rest of the 8 weeks.

Waiting again

Right now we're waiting to hear whether he will get to stop at 6 months.   DH has appointment this Wednesday.

Happy Thanksgiving

I remember last Thanksgiving as a little miserable.  We didn't travel anywhere because DH was still in his 1st round of treatment.  Seems everyone else was otherwise engaged and we weren't sure what to do with ourselves on Turkey Day.  We decided to go out and did, but turns out the food served wasn't very good.  We were feeling sorry for ourselves because we felt no one really cared about what we were going through (major self-pity, I know).  This year things are different.  We have family coming over on Thursday.  I think this blog and the response I get helps us feel people care more.  AND - it looks like we REALLY have something to be thankful for - DH possibly, likely, probably going to be in the 79% of people who are cured by the 3-prong treatment.  It can't get much better than that!

Good news!!! (and maybe even better news)

Doc visit today.  Yes, DH was "virus undetectable" at 8 weeks.  He will get his 12 week blood test this Friday.  They have to re-visit the 4-week blood test because apparently the lab reported it as "less than 43" instead of truly undetectable.  IF DH is "virus undetectable" at 12 weeks AND they can clarify that the 4-week test was truly "undetectable," DH will be able to stop treatment at 6 months!!!!!!!!!!!!!!!!!!!  That is the best news ever! He takes his last Incivek this Saturday, then continues on Interferon & Ribivarin - MB only for 2 more months! 

Doc said DH is "remarkable."  He is handling the treatment quite well, lots of complaining at home to the contrary.  He was athletic and strong when all this started.  I think it's helped him.

Praise the Lord!

Still waiting...

We're still waiting for latest blood test results.  Not sure why it's taking so long to get them.  Several days this past week DH said he thought he was becoming anemic.  He's so very tired.  This morning he raged at me after he got up for "the way I looked at him."  I didn't even know I was looking at him!  Is this riba rage finally showing up?  We saw that during the first round but not so much this time.  Must be rearing its ugly head.  It sucks!

Spoke too soon

I may have spoken too soon about DH feeling better.  This weekend has not been as good.  Yesterday he seemed quite ill when he awoke from his nap (he always takes that daily nap - I know he needs it).  Today he seemed quite ill before he "went down" (he's down right now).  We're waiting for the results of the blood test.  Apparently the lab screwed up, so he had to go yesterday morning to get his blood taken again.  The results of this test will be the next test for the virus (next after the 4-week test).  Hoping for those wonderful words "virus undetectable" of course.

Going into Week 9...

Is it my imagination, or is DH feeling a little better?  MB the body gets used to the meds.  That seemed to happen on the 1st round of treatment.  I'm glad he's on the short-term disability and can rest when he needs to.  Tomorrow he gets his 2nd blood test for HCV levels.  We were at the doc on Wed. and they said they wanted a full week 8 b/4 the test ( so they didn't test that day).  Hoping for another "virus undetectable."  I told them how very depressed he had been and he said some of that was just melodrama.  I told him if that was true to knock it off - told him how very, very worried he made me (and that he was bringing me down, too).  So, we'll see. 

Uncertainty

Uncertainty is a given right now.  Uncertainty about a cure, uncertainty even about what life will be like after the treatment.  Some people are so affected by the HepC treatment that they never return to work.  I don't think DH will be like that, but who knows?  The short-term disability was approved, but long-term would be another matter.  My not having a permanent job adds to the uncertainty for sure.  Like they say...one day at a time.

Week 7 coming up

Tonight DH gives himself shot #7 of Interferon.  So, week 7 of Incivek - 5 more weeks to go.   I'm pretty sure they'll test for the virus again during week 8.  Hoping for the "undetectable" again.  He continues to feel "poorly" - all side effects of the meds.  And he still gets VERY depressed.  He got depressed because Steve Jobs died and said he's going to be "just like him."  NOT TRUE!  Poor man had pancreatic cancer and DH has HCV and is GETTING CURED!!!  I'm going to ask the doctor if mb they should up the anti-depressant - but that's mostly about me because it bothers ME to come home to that every day (selfish, I guess).  The coughing continues.  Prob ask about that, too.

Happy face.

I'm working as a contractor, so I can't really decorate my office.  But last week I printed out a copy of a picture of DH from a bike ride he went on years ago when we were just dating.  I tacked the picture up beside my computer.  I asked myself why I like the picture so much.  Is it because DH looks cute in his cycling outfit?  Well, yeah...but that's not really it.  It's his smile.  He looks so happy...and healthy!  I don't see that smile very much these days, but I know it's in there.  And he's a fighter...he's fighting to get back there.

Weekly blood tests

Found out that DH has to have his blood taken weekly now.  They're watching the creatine levels and red and white blood cell counts.  This stuff is hard on the body!!!  DH not thrilled to go in and get stuck every week.  Before he started this round, he had to get a PINT of blood taken every week for several weeks to treat his hemachromatosis so that he could start the treatment.  He became exhausted and week from that.  At least he's just getting his blood tested, not "drained."  Gees!

Still depressed...

DH is still depressed even though he got the negative reading at Week 4.  I think I understand why.  He doesn't want to get his hopes too far up only to be disappointed as he was after the 1st round of treatment when he relapsed at only 2 months out.  And, besides, it's not like getting the negative reading means the ordeal is over.  Many more weeks to go and no guarantee of success.   Also, I'm sure he wonders if he'll ever be the same.  ALSO...the depression is a side effect of the meds, so no getting around it I guess...even with the anti-depressants.  The reality is that some folks become suicidal on these meds.  DH is not THAT bad...but still it's hard. 

HOPE IT'S TRUE:

 

From this website:  http://www.hepctrust.org.uk/Treatment/Potential+New+Drugs/Telaprevir+Incivo+Incivek

Treatment Naive patients – those who have never tried treatment before
Prior relapse patients – those who have previously responded to treatment but then relapsed

If the virus is undetectable at week 4 and also undetectable at week 12:

• The total duration of treatment will be 24 weeks
• Interferon, Ribavarin and Telaprevir will be taken up until week 12
• Interferon and Ribavarin will be taken for a further 12 weeks

Hooray!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Praise the God of all creation!!!!!   My husband's blood test showed NO virus - no Hepatits C Virus at Week 4!!!!  Hallelujah!

High Anxiety...

Late in the day Thursday, the nurse calls me at work on my cellphone to say blood test shows DH has "high creatine level," needs to hydrate and have blood re-taken on Friday. Says she's been calling him all day, but got no answer.  Would I give him the message?  Sure...then I'm googling "high creatine" - may mean many things, can be indicator of heart attack.  Heart attack!?   I can't seem to forget that my brother's friend went through HCV treatment successfully but then died of a heart attack.  DH complains almost daily of his "high heart rate" from the meds.  He has shortness of breath, can't exercise.  I call home and get no answer.  The freak out slowly starts, the mind reels.  I pack up my things and run out of the office.  I call again on my cellphone on my way - STILL no answer.  I'm picturing a terrible scenario - then DH calls my cell while I'm in the car and says "Hi!"  Whew...sigh of relief, but takes me awhile to come down from that worst fear.    

Doctor visit today

Doctor visit today with blood test after.  Won't have results for a couple of days, mb not until Monday.  I "ratted out" DH with not always eating 20 grams of fat with the Incivek.  Doc was not happy - said the fat is absolutely necessary for the medicine to work.  So, loaded up on bags of chips, summer sausage on the way home.  DH doesn't have much of an appetite, so eating the fat grams is hard.

"The Big Reveal"

This Wednesday DH goes back to the doctor.  He has to get his blood tested for the HepC virus right b/4.  Supposedly the new treatment starts to work as early as Week 4 - this test will let us know if it is.  "Dear Lord:  please heal my husband!!!!!!"

Incivek

I nagged DH yesterday about eating the 20 grams of fat with each dose of the Incivek.  He's sick and doesn't feel like eating the cheese or the peanut butter or the almonds.  I wonder what will happen if he doesn't eat precisely the recommended amount of fat.  I told him I was concerned that he wasn't going to get the full effect of the medicine and that he was going through all this hell for naught if he didn't. 

Week 4

Shot #4 last night.  DH went back to sleep this morning.  Said he had a bad night - tossed and turned, felt like he had the flu.  No church this morning, that's for sure.  Such an ordeal!

Hack, hack, hack...

DH has a hacking cough.  I think it's from the Interferon.  I remember it from last time.  Sometimes it's hard for him to talk because he starts coughing.  Doc said Interferon can mess up your lungs, so if it gets worse they'll do chest X-rays.

Tired, depressed...

I didn't get home until after 10 p.m. last night because of rehearsal.  DH seemed so depressed.  He says he's weak and tired.  Says he slept most of the day.  Says he's just not sure he's going to make it.  When he talks like that, I'm not sure either.  I dropped off the a/d prescription, but he hasn't picked it up yet.  What happens when you're too depressed to pick up your prescription for anti-depressants?  (I'm going to stop by the drugstore tonight on my way home from work.)

Church today

DH wanted to go to church today because it's 9/11.  I didn't think we'd make it, but we did!  It felt good to be there.  We've only been to church a few times in the past year because he's been too tired.   I've wanted to just go by myself, but I don't seem to manage.  Glad we had a Sunday morning that felt like a normal Sunday morning.

1st doc visit after starting treatment

This past Wednesday was DH's 1st doctor visit since starting treatment.  I'm glad I was able to go with him because he tends to minimize.  "I'm fine," he says.  Doesn't always want to tell about the side effects.  Doc signed the short-term disability paper but I don't think the insurance company is going to accept it from us.  Ins. co said they faxed it to doc, but doc hasn't signed.  Before his next doctor visit on 9/21, he has to get a blood test.  They'll be able to tell if the treatment is working. 

Quiet...

It's quiet around here.  DH is asleep.  The meds make him tired.  I'm watching movies on the Lifetime Movie Network.  Just like on the 1st round of treatment.

Not so fast...

So, we thought the short-term disability was approved, but now we find out it may not have been.  And DH is off work already - now wondering if he's going to have paid leave or not.  Certainly doesn't help his mood.

Hard to imagine...

Last night DH was sick and tired and depressed.  The depression manifests itself with extreme irritability.  He said he was nauseous from trying to get in the 20 grams of fat with every dose of Incivek.  And the doctor said he must take the medicine EXACTLY as prescribed.  Just like during the last round of treatment, I have a hard time imagining how he's going to make it through this week, much less 23 more (or will it be 47 more). 

Still In Week One

DH is home every day now while I'm working.  He seems VERY glad to see me when I get home.  He says the Incivek makes him SOOOO tired after he takes it (3x a day, always with food that contains at least 20 grams of fat). I tell him to rest - why not, that's why he's on the short-term disability.  Says he feels the depression coming on just like during the first round of treatment.  Will talk to doc about anti-depressants on next visit.

Feeling Foolish

Definitely feeling foolish as I realize how many other blogs are out there from Hep C spouses (should have looked up Hep C Wives)  Did see another who said being a Hep C wife was a lonely place to be and I agree.

Day 1 of my blog.  I can't believe it was so easy to get HepCSpouse for my title.  Hasn't anyone else blogged about this?  DH just started 2nd round of treatment.  He injected with Interferon last night and took both Ribivarin and Incivek.  So far no worse than the treatment with just the Inteferon and the Ribivarin; very early.  I went to the grocery store and bought all the snack I could find that had close to 20 grams of fat to take with the Incivek.