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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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In Treatment (or Not)

As far as Dave’s Hep C treatment goes, this past week has been a roller coaster ride.  Up until my last update at his eight week visit, things had been pretty tolerable for him.  He met with the attending doctor and Mita, the nurse practitioner we’ve been seeing at every visit, and updated them on his side effects and how he was handling everything.  Things were going well enough that they told him he didn’t need to come back in two weeks like he had been; he could wait for a month before his next blood draw and refill on his meds.

His viral load from the eight week visit was 4,000 – down from 4 million when he first started treatment in April of this year.

This past week, though, things were getting grim.  I noticed most days he was very quiet and obviously not feeling well – he was sleeping a lot and just seemed ‘off’ to me.  Since we spend all day, every day together, it’s very noticeable to me if he isn’t feeling well or is in a bad mood or whatever.  Every now and then he would say that the metallic taste from the Victrelis was really bad, and the medicine was coming back up in his throat.  He said it tasted like he’d just swallowed a handful of fertilizer.  We went in search of hard candy to try to help with the nasty taste, per Mita’s recommendation, and he got a few different flavors.

On Wednesday of this week I woke up to find Dave in a really foul mood.  He was furious and fed up; he told me he’d been up in the middle of the night dealing with the Victrelis coming back up into his throat.  It was burning his esophagus and his lips; he had been using this concoction of Lidocaine and Mylanta on his lips to try to protect and soothe them, but they were blistered and he was really in pain.  The skin on his lips has always been thin and sensitive, originally from the GVH (graft-versus-host) from his bone marrow transplant, and then aggravated by the reflux and GERD he also suffers from.

“That’s it, I’m not doing this anymore,” he fumed.  “I stopped treatment.”

Normally he starts his day at 6 am with a dose of Ribavirin and a dose of Victrelis, seven pills in all.  He had skipped this dose.

Dave is not a complainer.  He’s not one of those guys who gets a cold and then lies around, sniffling and feeling sorry for himself.  He isn’t a martyr either; he’s just very matter of fact about medical stuff, having survived chemotherapy and a bone marrow transplant in the 90s.  He came through that and now everything else kind of pales in comparison.  And he hadn’t been complaining about the Hep C treatment up until now, other than good-naturedly joking about being mad that he’s gained weight instead of lost.  So when he told me he’d made the decision to stop taking his medication, I knew it was serious.  If it was bad enough to make him stop the treatment, then it was pretty damn bad.

Dave is not one to feel cowed by doctors.  After his bone marrow transplant was done, they told him he needed a series of five shots of chemo into his spinal column.  The first two weren’t too bad, but the third just did him in.  For 22 hours he had an excruciating migraine headache; he vomited every 20 minutes for the entire 22 hours.  After that, he told them, “No more.”  He refused to let them give him any more injections, and he’s here, 20 years later, to tell the tale.  I’m the type to be more intimidated by doctors; it’s only been recently that I refused to take a medication my doctor wanted to prescribe.  I still have that fear of authority figures that was instilled in me as a kid; Dave could just give a shit, basically.

I asked him to tell me more about what was happening to make him stop the treatment, and I found out that he’d been dealing with the Victrelis coming up in his throat nearly every night for days on end.  His lips had been blistered and sore for over a week; he just hadn’t told me.  Although he takes all kinds of medication for GERD, he also has a hiatal hernia that was never repaired, so food tends to come back up into his throat.  The medications help the acid aspect of things, but that’s not what he’s dealing with – it’s the actual food and medication coming back up into his throat because of the hernia.  (He was supposed to have surgery to correct it years ago, and then the VA just kind of dropped the whole thing…after he’d gone for multitudes of tests over the course of a year and a half, showing that he qualified for the surgery.)

After we talked for a while, I recommended that he call Mita to let her know what was going on and that he was stopping treatment.  After he explained to her what was going on and how the medication was affecting him (his lips were bad enough that he could barely talk or eat), she agreed that he should stop the treatment.  His 12 week appointment was coming up (the first week of July) and we would meet with her after his lab visit.  Since it was the end of his treatment, she ordered some extra blood work.

The difference was really obvious; Dave was already feeling better, having not taken his medication that morning.  He was so happy and relieved to be stopping the treatment.

An hour or so later, the phone rang; it was Mita.  She wondered if a stronger GERD medication might help him.  After he explained that he wasn’t having trouble with acid reflux but rather the medication itself washing back into his esophagus because of the hiatal hernia, she agreed that there wasn’t much he could do other than surgery.  About 30 minutes after that phone call, we got another call from the VA hospital.  This time it was someone from the GI department (or the pharmacy; we couldn’t tell because of their heavy accent and their phone cutting out enough that even the captioner couldn’t tell what they were saying).  They wanted to put Dave on a different medication, since his viral load was so low and he was responding so well to the treatment.  They said that it was an expensive medication and not one they normally prescribe, but they thought it might help.  (It turned out to be generic Protonix, a PPI; Dave was already on generic Prilosec and it wasn’t helping.)

After speaking to this lady for a while, Dave agreed to give it a try.  He wasn’t happy about it, but maybe this medication would do the trick.  If it wasn’t for this one extreme side effect, he didn’t mind being on the Hep C regimen.  We arranged to go to the VA hospital the next day to pick up the new medication, and Dave confirmed that he was continuing his treatment.  He took his afternoon, dinner and evening doses and ended up just missing the one morning dose.

I asked him to explain what the treatment is like for him, since up until now I’ve been speaking for him.  This is what he had to say:

The beginning 4 weeks of treatment was not bad: one shot of Interferon on Wednesdays and 3 capsules of Ribavirin twice a day. The day after the shot could be a little iffy but bearable.

After a month of this, they added the Victrelis which was 4 capsules three times a day.

My day would start at 5 am when I would take my thyroid medicine an hour before anything else.

The Ribavirin and the Victrelis both need to be taken about 20 minutes after you’ve eaten something with around 20 grams of fat; it helps with the absorption and helps minimize the side effects.  I try to go with a couple of eggs and a bowl of cottage cheese.  I was doing a tablespoon of coconut oil (14 g fat) but that got old quickly.

Seven capsules to start the day; usually the morning had less side effects than other times.

At 2 pm I had to eat another high fat meal and then take 4 more Victrelis.  More times than not, I would get some of the medicine coming back up because of GERD.  Oh, almost forgot, I also take two 20mg of Prilosec twice a day and a Tagamet before bed.  They keep the acid component of the GERD down but don’t stop the reflux, which results in a constant nagging cough.

At 6 pm I take the Ribavirin again with dinner; not too bad.

At 10 pm it’s time to take the last 4 Victrelis of the day.  We had to get creative with the fat for this because the number one rule with GERD is *DO NOT EAT BEFORE GOING TO BED*.  Since I have to, we got some Reeses Peanut Butter Bars that have 14 grams of fat and not a lot of volume.  Not ideal, but still better than most things I’ve tried.

In the last week something changed and the nighttime reflux has been incredibly bad.  The medicine dissolves and then trickles back up while I’m sleeping, so when I wake up it’s like I have a mouthful of fertilizer.  Yum.

The doctor has changed my GERD meds to something stronger but, ironically, this has just made it worse.

* * * * *

As he said, he’s been on the new medication for five days now and it’s not helping; he’s actually having worse symptoms that he did with the Prilosec.  He keeps his lips numbed with the Lidocaine/Mylanta mixture, and I’ve re-worked our dinner menus so that we aren’t eating anything with tomato or things heavy in citric acid (lemon, pineapple).  He was willing to give this new medicine a shot but at this point, he’s planning to stop treatment again on Wednesday, which is his next appointment with Mita.  That way he can talk to her in person about the side effects and the fact that the new GERD medication isn’t helping.

He’s hoping that he will have cleared the virus by Wednesday.  Normally that doesn’t mean that you stop treatment; you still continue on until either 28 or 48 weeks has passed (based on whether you’ve had treatment before, have cirrhosis or not, and how early you cleared the virus).  They re-check your viral load six months after the end of your treatment to make sure the virus is still gone.  This is most likely what they’ll do with Dave – re-test his blood in January 2014 to see what’s happening.  If the virus has come back, he’ll have to wait until they have a new treatment protocol available through the VA before he can go through it again.

As always, we’ll keep everyone posted as things progress.

Slaying the Hep C Dragon

I think it’s time for a medical update (now that we actually have some progress).  I took a little unexpected hiatus from writing this past week while I dealt with what I call my ‘weird stomach thing.’  It started happening after I had a miserable month of salmonella poisoning from eating infected eggs that we got from Costco, back in the summer of 2010.  I wasn’t sure WHAT was going on with me at first; I was on this fish oil cholesterol medicine called Lovaza and I assumed I was having issues because of that.  I stopped taking it, still had the issues…they slowly started getting better after about 3-1/2 weeks, and then about two weeks later we got a letter from Costco, helpfully telling us that the eggs we purchased were tainted with salmonella, and we could return them for a refund if we wanted to.  (We had already consumed them, DUH – we bought them a month and a half before they sent the letter!  After this, and also getting two similar letters regarding infected ground beef about 2-3 months after we had already eaten it, we stopped buying meat and eggs from Costco.  Gross.)

So anyway!  I realized that was why I stayed so sick – eating those damn eggs for nearly a month – and hoo boy, it was miserable.  I couldn’t really leave the house, since I never knew when I might need to break and run to the bathroom…especially if I had just eaten a meal.  Not that I could really eat – it caused so much pain, I was just entirely debilitated.  Great way to kick off the summer – I was sick from the end of June pretty much through the whole month of July.  After that, my stomach seemed much more sensitive and now I get my Weird Stomach Troubles usually 2 or 3 times a year.  That’s what I just finished dealing with and UGH, I hate it.

The last couple of times it’s happened, Dave has also had the same issues (and Paige as well – she was home when I came down with this before) so I’m not sure if it’s some kind of virus thing or what.  It lasts anywhere from 3-6 days, and basically causes massive pain, especially after eating.  I’m talking ‘lean against the counter and breathe through the pain like it’s a labor contraction’ kind of pain.  I won’t get too graphic, but the symptoms sound like gastroenteritis (and may well be, who knows) except for the fact that, um, nothing really happens in the bathroom, if you catch my drift.  So in that sense, it sounds like a diverticulitis flare-up, which…hey, I’m over 40 and most people actually have diverticulitis and don’t even realize it, so maybe it’s that.  Who knows.  All I know is that it’s awful, I become completely unproductive because the only thing that doesn’t hurt is to lie flat or stand up (sitting is the worst), and all I can think of is how much discomfort I’m in.  I also can’t leave the house because what if I need the bathroom?!  I added to my general misery this time around by imagining how I would deal with this if I had to go to work outside the home…NO WAY.  I would have to take a minimum of four days off…can you imagine?!  They would fire my ass so fast!

Dave is always offering to take me to the doctor and I always hiss back, “NO.  I will never, ever go to the doctor for stomach issues because I refuse to have any of those tests done.”  When I was 12, I had chronic stomachaches and I had to be admitted to the hospital for a bunch of horrific tests, all of which involved multiple enemas beforehand.   The worst of them was a lower GI, where they gave me a barium enema and made me hold it while they took x-rays.  I was 12, and it was a young guy technician who did the enema, which mortified me beyond reason.  I was so tense and in so much pain, by the time they told me I could go to the bathroom I just went into the room, closed the door and collapsed on the floor in pain.  Finally everyone started banging on the door, asking if I was okay, when all I wanted to do was stay in that bathroom for another hour or two.  UGH.  Never, ever again.  (By the way, the tests just revealed that I had an irritated stomach lining; the doctor prescribed Valium so I would Chill Out…and it worked.  My stomach still gets upset when I’m stressed out.)  So I have this irrational fear of going to the doctor for this stuff.  I won’t have the tests done; I told Dave I’d rather deal with the symptoms than the pain from the tests.  And it always goes away.  It just sucks while it lasts.

So while I was deep breathing and waiting for my stomach to stop being an asshole, Dave was gearing up for the start of his Hepatitis C treatment.  I started feeling better and then Dave got sick with the same symptoms I had.  (Oh!  What seemed to really help was peppermint oil – Dave actually went around to a bunch of stores to find it for me.  It’s called Pepogest, and once I started taking it I instantly felt better.)  He had a 9 am appointment on April 10 and that was just a day or so away.  Luckily he beat the symptoms back with Pepogest and his magic bullet, drinking vinegar.  Can you imagine?!  I hate the smell of vinegar, so I can’t even imagine drinking it (although he mixes it with juice…it’s still gross, though).   Luckily by yesterday morning, we were both feeling like our normal selves as we headed out to the VA hospital.

Of course, we were driving in the middle of a massive thunderstorm (which I loved).   It seems like every time Dave has an appointment for anything liver-related, we have some major weather event.  It started with his liver biopsy in 2011 (we had a blizzard – it shut the hospital down and the biopsy had to be rescheduled).  And this year, every time he’s had an appointment it managed to snow enough to where we weren’t sure we’d get down there in time (luckily we did).  I told him that when we go back next month, there will probably be a tornado to contend with!

We were once again part of a very small group: just us, the couple from the first class we went to, and another single guy (but not the same guy from the first class).  Everyone there was Genotype 1a, getting the same treatment:  PEG-interferon shots once a week, Ribavirin capsules (3 caps twice a day), and then Victrelis (boceprevir) starting about a month from now.  We were in the class for almost three hours and let me tell you, it was awesome.  The nurse practitioner who was in charge, Mita, was worried it was too much information and didn’t want to confuse people, but it was really fantastic to get to sit and ask questions and just learn all about these major medicines that Dave was going to be taking and how to deal with any side effects that come up.

There was extensive discussion on each possible side effect and how to deal with it.  I took pages of notes and asked lots of questions.  I liked having a small group because we were in a very small room that was quiet and really easy to hear in.  I could understand the video that she showed us, even though it wasn’t captioned, because the narrator stayed on the screen and I could read her lips and hear well enough in the small quiet room.  (The video was on how to give yourself the interferon shots.)  As scary as this treatment is, I feel like Dave is in good hands and I just feel really comfortable knowing he has someone so closely monitoring everything, someone we can turn to whenever we have questions.  We never felt rushed, and we left there feeling really confident.

The guys all gave themselves their first shot while Mita was there to help and give them pointers to make it easier.  Dave said it hurt, but nothing he can’t deal with.  Actually, before the class started she pulled him aside and said he didn’t have immunity to Hepatitis A or B, so she was giving him a series of shots for that.  He got a combined Hep A & B shot before the class started, and later in the day he mentioned more than once how much his arm hurt.  That was definitely his biggest complaint about the whole process!  He has to go back for two more vaccinations to complete the series, and he’s already grumbling about it.

He takes three Ribavirin capsules twice a day, 12 hours apart (he decided on 6 am and 6 pm).  He took his first three last night, right after dinner.  He’s taken another three this morning.  He only does the Pegasys injection once a week, so he’ll do that again next Wednesday before bed.  So far he hasn’t had any big issues come up.  He said, “I can tell something’s going on, but that’s about it.”

He did say that when he got up around 4 am, he could barely open his eyes because they were so dry.  He doesn’t make tears – it’s either from the leukemia or the chemo, I can never remember which – so he always has to use eye drops to keep his eyes moist.  This is above and beyond, though.  Mita did specifically say that the treatment ‘dries you up’ – she was referring to possible kidney issues, and all the guys were instructed to drink at least 2-1/4 liters of fluid a day (not caffeine, such as coffee or pop).  Dave was really good about that but it still really dried his eyes up, so we’re heading out to buy him some heavy-duty eye drops later this afternoon.

The only other thing he’s noticed so far is that he’s been cold, which is unusual for him.  He thinks it’s from all the extra water he’s drinking.  Usually he’ll go out in 30 degree weather with a t-shirt on; if I ask if I need a jacket he’ll tell me ‘no.’  Then I step outside, shriek, and come back in to find my winter coat.  So it’s a little weird to see him walking around the house with thermal underwear on under his t-shirt!

I did have to sternly tell him that he needs to tell me how he’s feeling and not try to spare me/hide it from me (which he does tend to do).  I mean, if he falls out or something and I call Mita to let her know, it won’t be helpful if all I can say is, “Well, he keeps telling me he feels fine!”  So I told him to let me know what’s going on, I’m not going to freak out or anything – I just need to stay informed so I can be there for him if he needs me.

The way the VA program works, the meds are given in person.  So he has enough for four weeks, which takes him to the point where he has the third class.  That’s when they introduce the third medicine, Victrelis, which is also a pill and has its own array of side effects (hence the class, to learn about how to deal with them).  If he doesn’t show up for the class, he doesn’t get his meds.  I think it’s a good process, personally.

His next appointment is in two weeks, April 24, when he gets his first labs drawn.  This is an important blood test – it’ll show how his body is handling the medicine, whether it’s raising his blood sugar, affecting his thyroid or his white blood cell count, and most importantly, whether it’s killing the Hep C virus.  I guess some patients actually clear the virus by this two week point!  Depending on how he’s responding, they’ll decide how long the treatment continues.  I believe it doesn’t go any longer than 28 weeks, which is half the time treatment used to take.  If it’s not working, they’ll stop treatment and he will just wait until new meds come along.  So even if he clears the virus in two weeks, he’ll still finish the full treatment.  Then they test again six months after the treatment is completely done, to see if the virus has come back.  If not, he gets to hear the magic word:  CURED.

It’s early on in the treatment, so I’ll keep updating as it progresses and we see how it affects him.  Right now, though, he has a really positive, upbeat attitude.  He’s actually off at my mom’s house right now, painting her kitchen!  I’m going to see if I can get him to let me help tomorrow…usually he claims there’s not enough room for two people to paint (he even tried saying that when we painted the family room downstairs, which is HUGE!) but maybe he’ll relent and let me slap some paint on the walls.  I kind of like that he’s still feeling feisty…let’s hope it stays this way!

Go, Dave!!  :) (Paige, Dave & Wendi at the 2010 HLAA convention)

Go, Dave!! 🙂
(Paige, Dave & Wendi at the 2010 HLAA convention)

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