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Doing It One More Time

In one of my posts last month, I mentioned that Dave will be starting treatment again for his Hepatitis C. I’m in a medical frame of mind because I have to find a new doctor this month, so I thought I’d catch everyone up.

I always hate looking for a new doctor. I feel more comfortable with women, so that knocks out a lot of possibilities. I have to guess whether the doctor will have an accent or not (I really, really try to avoid anyone with an accent – my medical stuff is just too important for me to be guessing about what the doctor’s saying). I want someone close by, so that if I’m really sick I don’t have to drive 45 minutes just to get to the doctor’s office. And I don’t know anyone in town to ask for a referral, so I just have to pick a female medical practitioner that works out of a nearby office and has a non-accenty-sounding last name.

I really only need to see the doctor to get my medication refilled (I take medicine for high blood pressure and cholesterol, both of which run in my family). Of course, losing 35 pounds and exercising every day has hopefully made a positive effect on both those things, so my medication may end up getting changed or even discontinued … we’ll see. But I don’t have any chronic health conditions; I just know my medications will run out on Feb. 18th and so I figure I should get a new doctor by the end of this month. I’m not looking forward to it.

Dave has it a little easier because he has to go the VA, and he just gets whatever doctor they assign to him. (Of course, figuring out WHERE to go was the hard part as far as the VA health care system is concerned.) When he went for his new patient visit at the South Bend Clinic, his doctor was really great – very easy to understand, willing to listen to Dave’s concerns and address them appropriately, very friendly and good natured. He’s an FNP, which is fine with us — I’m actually planning to make an appointment with a female FNP at the clinic I’ve been planning to go to (all the MDs are male, and I have had good luck in the past with FNPs).

One of the things he touched on at Dave’s visit in October was his unsuccessful Hep C treatment in 2013. We were surprised to find out that they have new medicine now, just a single pill with no Interferon shot. They seemed really eager to get Dave going on this new treatment, so he made an appointment in November for him to see the liver specialist.

This appointment was so cool. The South Bend location is just a clinic, and the liver specialist works out of Fort Wayne, Indiana which is about two hours south of us. Rather than make us drive to Ft. Wayne, they did a video conference appointment in South Bend (which is less than 30 minutes away). There was a medical technician there, and he set everything up … then we waited for the doctor to join us on the TV screen that was in the room.

Dave was able to understand pretty well – they had the volume turned up and we could see the doctor’s face to read his lips. He asked Dave all kinds of questions, went over his medical history, and then told us about the new treatment. It’s not supposed to have many side effects, at least not compared to the hellish treatment Dave was on in 2013 (Ribavirin and Boceprevir pills daily, plus Interferon shots once a week). Even though Dave didn’t clear the virus, he is still a good candidate for this new treatment.

Then the doctor asked the medical tech to listen to Dave’s heart and lungs. He hooked up a stethoscope somehow so that the doctor could hear the same thing he heard. The doctor told the tech where to place the stethoscope, and told Dave how to breathe (deep breath, hold his breath, etc.) It was really amazing!

I think the new medication is Sovaldi (sofosbuvir) but I don’t know much about it yet. I think Dave will just be taking the one pill, but it’s possible he has to take it with Ribavirin. I do know for sure that he doesn’t have to do the Interferon injections; the Interferon was what really messed up his thyroid and made him so sick last time.

When he went through the treatment in 2013, we had to go to classes to learn about each drug and its side effects. I don’t know if this treatment is that involved, but I don’t think it will be. I do know that we have to drive to Fort Wayne every two weeks to pick up his medication. They’ll give him a two-week supply; then two weeks later we have to drive there again to pick up the next supply, for a total of 12 weeks. I feel that this is a huge pain in the ass – four hours of driving, plus the cost of gas, and wear and tear on the car. But Dave said it’s absolutely worth it to him – he wants to clear this virus once and for all. I’m kind of hoping that after one or two trips, they’ll just have the medicine waiting for him at South Bend for us to pick up. (He doesn’t think this will ever happen.) I remember one of the guys in the classes we took at Hines VA was from a town about an hour and a half away. He was at maybe two of the classes, and then the nurse who was in charge of the program set it up so that he could pick up his meds at the clinic near his house. So I’m thinking maybe someone will take pity on us and do the same, even though it’s a different hospital.

We’ve never been to Fort Wayne, but we’ll be going next month so Dave can have a liver ultrasound – they want the results of this test before he starts his treatment. The doctor was kind enough to take into consideration the unpredictable winter weather we have in this area, and he’s having him wait until March to start treatment. He has another remote video conference appointment with the liver specialist in March (in South Bend) where they’ll go over the results of the ultrasound. And then probably later in March, or in April at the latest, we’ll make the drive to Fort Wayne to meet the liver doctor in person and get Dave’s first two weeks’ worth of medicine.

Hopefully this treatment will work, and I’ll be posting that he’s cleared the virus by the end of 2015!

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Three Weeks Down

As of today, Dave is in his third week of treatment and so far he is doing really, really well.  He hasn’t had any side effects beyond the ones he noticed right away – the dry eyes/skin, and being tired later in the day as well as the day after he takes his PEG-interferon shot.  (In other words, we don’t plan big activities for Thursdays!)  He was a little disappointed not to have the weight loss side effect; he was joking with me about a week after his treatment started, saying he was probably going to be the only one who gained weight while doing the treatment!  Seriously though, he’s maintaining his weight and eating well.  We never had bad eating habits to begin with (fast food once in a blue moon, otherwise we make all our meals from scratch with very, very little processed food involved).  Now that the weather is warming up we can start taking our daily walks again.  So all in all, this is going much better than we imagined it would!

One of the few photos where Dave is smiling!  At his sister Laurie's house, about 12-13 years ago.

One of the few photos where Dave is smiling! At his sister Laurie’s house, about 12-13 years ago.

The next monkey wrench will be when he adds in the third (and final) medication, Victrelis (boceprevir).  I suspect this medication tends to give people rashes, because the Nurse Practitioner, Mita, mentioned this more than once.  If he adds in the Victrelis and still doesn’t have any bad side effects, we’ll both be very relieved!

We went down to Hines VA hospital on Wednesday for Dave’s first official labs since starting his treatment.  He doesn’t have diabetes, but the medication tends to raise blood sugar so Mita wanted him to fast just for this lab so she could check his fasting blood sugar.  The lab opens at 7 and we live about 45 minutes away (by car) from the hospital.  Dave usually takes his Ribavirin at 6 am, but he has to take it with food (to prevent stomach upset) and that meant he couldn’t take it until after his blood was drawn.  We didn’t want to get his meds too far off schedule, so we headed out early in order to get him in right away for his labs.  That would give us the chance to have breakfast in the hospital cafeteria so Dave could take his meds, and then he had an appointment with Mita at 9 am.

Dave was up around 4 am, and I slept in (!) until 4:50.  Neither of us ate (he was fasting, I was fasting in solidarity with him) and after catching up with things online and getting an eBay order ready to ship, we were out the door a little after 6 am.  We made good time and they took him right in when we got to the lab.  After that we headed over to the cafeteria to get some much-needed coffee and some breakfast.

After we finished eating, Dave handed me the receipt for safekeeping.  I noticed it had a little grid on it, so I took a closer look.  Every item we ordered had the calories listed!  I thought that was really cool, especially if you were an employee that ate at work every day.  It’s so easy to overeat, but if you know ahead of time how many calories you’re consuming, it really helps.  Of course, I didn’t notice this until after we were done eating, but it’s good to know for the future.  I also belatedly realized that the calories were listed next to every item on the sign they had at the station we ordered from.  I didn’t realize that at first; I thought they were numbers you could use to quickly order.  (Kind of like when you go to Burger King and order a #5 or whatever.)  Wouldn’t that have been hilarious if I ordered my food using the calorie counts?!  Luckily I didn’t finish all of my food, and I gave my toast to Dave, or I would’ve ended up eating more calories than him (definitely not something I need to be doing).

Then we proceeded to walk off every single one of those calories…I should’ve worn walking shoes that day!  We spent the next hour and a half walking all over the hospital, exploring.  It is seriously huge!  We even walked past a door ominously marked “Weapon Cleaning Room.”  (!)

Mita had Dave’s test results, all except his viral load count, by the time we arrived for his appointment.  His blood sugar was what it normally is, and his platelets went down a bit but they were still over 100 so they were still at the low end of normal.  His hemoglobin was also lower than his baseline count from last month.  She said if those numbers go down further, they might adjust his Ribavirin dosage.  That also explains why he’s been more tired than usual.  Other than that, his numbers were okay and she didn’t change his meds.  We go back in two weeks, on May 8, for the third and final class and also for his next set of labs (not fasting this time).  He’ll get his next month’s worth of meds and we’ll learn about Victrelis and its side effects.

I guess the viral load number takes a while to process, so Dave is calling on Monday to find out what it is.  Hopefully it will be much lower; this will show that the medicine is working and clearing the Hep C virus.  The goal is for the virus to be cleared by week 8…if that happens, his treatment will go on for another 20 weeks and he’ll be done.  Much better than being in treatment for almost a year!

After the appointment, we headed down to a health fair the VA had going on in their auditorium.  It was very, very loud (as those types of events tend to be) but if you got 15 signatures from various booths, you were entered into a raffle…and Dave was determined to enter!  We had a good time going around and talking to everybody.  Back in the day I would never try to make small talk with so many people in such a loud environment; I would hang back next to Dave and just listen (and smile).

We stopped at a booth dedicated to both colonoscopies and Hep C treatment.  Mita was supposed to be manning the Hep C portion but she was still running her clinic, so we chatted with the colonoscopy fellow.  I snagged a book, Colonoscopy for Dummies, and when we got home I left it in the bathroom for some appropriate bathroom reading.  Dave came out that evening, waving the book at me (he does not ever, ever want to be reminded of his colonoscopy prep, which he claims was worse than going through chemo).  He said, “Why is this in the bathroom??” and without a beat, I said, “Well, it’s the most appropriate place in the house.  You can read it and it will scare the shit out of you.”  It caught him off guard and I must say, we got a long, much-needed laugh out of that!

Fighting Hepatitis

It looks like Dave’s Hepatitis C treatment is going to be starting sooner rather than later, so I’ll be posting about it periodically.  This is the official first post, although he hasn’t actually started the treatment.

Dave is getting his treatment at the VA hospital, and they have you go through some classes before you start the meds.  They do this so they can answer questions and be sure that you really understand everything about the medicines and side effects, and how to handle any issues that pop up when you’re in treatment.  We had the first class on Thursday morning.

It was small, just us, another couple that looked to be near our age, and a slightly older guy by himself.  Dave filled out some forms, mostly about drinking, drug use and any possible mental health issues.  The nurse practitioner had a sing-song accent (very pretty) that I know causes some problems for Dave, so I was being very careful to listen to the instructions and watch what he was doing in case he filled something out wrong.

One of the first questions was about drug use in the past six months (marijuana, heroin, cocaine, LSD, meth, etc.) and I could see him checking off ‘cocaine – 4 to 5 times.’  Now, Dave was definitely wild in his youth (it was the 60s and 70s, after all) but if he’s been doing coke in the past six months, this was news to me.  I tapped him on the shoulder and murmured, “Um, hon…is there something I need to know?  You’ve done coke 4 to 5 times in the past six months?!”  He looked stunned, and I pointed out the ‘past six months’ part of the instructions.  We both started laughing; he had completely missed that when the NP mentioned it.

We watched a video on the various hepatitis viruses, how they affect the body, and how they are treated.  Everybody there was in a different position:  The guy by himself was still undecided about treatment, but he had Genotype 2 which is easiest to clear; the other guy had already done treatment either one or two times and it was unsuccessful (I couldn’t hear whether he didn’t finish the treatment or if it just didn’t clear the virus for him), and he also had cirrhosis so his disease was more advanced than Dave, who has Stage 2 liver disease (cirrhosis is stage 4, I believe).  Both Dave and the other guy have Genotype 1a, which is the most common but harder to treat.  Dave, however, has a gene, IL28B CC, that responds really well to treatment.  So the nurse told him he has the best kind of 1a to have.

I know the genotype stuff is confusing but it’s one of the things I didn’t know about Hep C … it’s not just one virus, there are lots of variations and they all respond differently to treatment.  I also really never understood what the deal was with treatment; I remembered hearing a couple of famous people say they had Hep C and were taking off work for a year (or retiring from the business), and I had no idea why they would need to do that for a virus.  Turns out the treatment is really a whopper for most people, kind of like chemo, and is commonly described as “feeling like you have the flu for a year.”

After the NP went over everyone’s paperwork, she told us a little bit about the meds.  She focused on the treatment for the 1a people, which is different from what the guy with Genotype 2 would get (the guy who wasn’t sure yet about doing the treatment).  The VA currently treats Hepatitis 1a with a three medicine combo – a weekly injection of Interferon, and two pills:  Ribavirin, taken twice a day, and Boceprevir, taken three times a day.  The Boceprevir isn’t started until nearly a month has gone by, although I’m not sure why (something I should ask next time).  Dave will be giving himself the shot, in his abdomen (at first we thought he was going to have to drive to the hospital every week…kind of a hassle, since it’s a 45 minute drive).

They’ll be doing blood tests at least every four weeks, possibly more for Dave because his platelets were a bit low and this treatment is known to really drop your platelet count.  They check your thyroid levels and blood sugar, since the meds are known to throw both of those things out of whack.  If his viral count is less than 100 at 12 weeks, they’ll retest him at 24 weeks.  If it’s above 100 at 12 weeks, they’ll stop the treatment because it isn’t working.  Many people, though, clear the virus by 8 to 12 weeks on the new treatment.  Even if he does clear the virus that soon, he’ll still have to finish the full treatment to be sure the virus doesn’t come back.  (It can still come back even after you clear the virus and finish all the treatment…stubborn, right?!)  I’m pretty sure that if he tests clear at 24 weeks, his treatment is finished.  It used to be that they treated you for 48 weeks (basically for a year) but with the addition of Boceprevir, it has cut treatment time in half.  That’s good news!

There was some talk of which side effects warrant a trip to the emergency room, but I think we’ll get more into side effects in a later class.  We still have two more classes to take, apparently – which is fine by me.  Better to have too much information than not enough, right?  After this class, which lasted about an hour and a half, Dave was sent to the lab for a drug test and to have blood drawn; we should have the results tomorrow.  After that, assuming his labs are well enough to give him the official go-ahead for treatment, he gets scheduled for an eye exam.  I guess the meds can mess with your vision, so they keep a close eye on that as well.  Then we’ll be doing the other two classes, and I guess at some point, either when the classes are scheduled or shortly thereafter, he’ll actually get his meds.

I’m a little nervous about all this – the meds can mess with his thyroid, eyesight, blood sugar, give him rashes, make him feel like he has the flu all the time, make him depressed/anxious/short-tempered (he likes to call it ‘ragey’) – so it’s no picnic.  Dave, luckily, is approaching it with a good attitude and is just ready to fight this thing and get rid of it once and for all.  I’ll keep you all updated as we know more!

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