Posted by wendiwendy
We headed off to Dave’s 12 week appointment at the Hepatitis C clinic feeling a little unsure of things. We didn’t know if we might catch a slightly judgmental attitude because he went off the treatment after they tried to help with the different GERD medication. Dave had called Mita on Monday to let her know he had stopped the treatment again, and we never heard back from her.
“Now, if Mita yells at you, just leave the room,” he joked, as we got closer to the hospital. I knew he was just teasing, but I admit I was slightly nervous about this visit.
When we were about 10 minutes away, I said, “I guess you didn’t need to get there an hour early for labs, since it doesn’t really matter anymore.” Normally he tries to get to the lab around 8 am so they have his results back by the time his 9:00 appointment with Mita rolls around. They use the lab results to tweak the Ribavirin and PEG-interferon dosages, if necessary.
“What?” Dave was shocked. He looked at the clock; it was around 8:30 at this point. “Oh my God…I didn’t even think about that. I was thinking the appointment was at 10:00 and we had plenty of time!” After freaking out for a couple minutes, he just laughed at himself. There was nothing we could do at this point, and we would still get there in time to go to the lab before the appointment. They just might not get the results back in time. Since he was off the meds anyway, what difference did it make?
As we walked in, it was cutting it pretty close – just about 10 minutes to 9:00. Dave decided we should just go up to the Hep C clinic floor and he could do the labs afterward. We got up there and the waiting room chairs were filled up – a husband/wife couple we’d never seen before, and one guy that was in the classes with Dave. We don’t see him all the time because he lives far away and does some of his appointments at a location closer to his house. We chatted with him a little bit and it turned out that he had cleared the virus as well. So of the three people in the class (Dave, Mr. S and the lives-far-away guy) Dave was the only one yet to get the ‘all-clear’ on his viral load. This is a little ironic since he has the type of 1a virus that is supposed to respond the best to treatment. Of course, he may have cleared the virus now…we won’t know until his test results come back next week. But the other two guys cleared first, obviously, since they already knew they were clear. We congratulated our faraway friend and waved goodbye as he left.
Mita smiled and waved from her office, so that put us at ease. She came out to let Dave know that he would be seeing the doctor this time, and he wouldn’t be in until 10 am. Dave asked if he should go back down to the lab, since he hadn’t had time earlier, and she told us to go on down.
After his labs were done and we waited for a while, we headed back up. I had never met Dr. N before – the one time I didn’t go with Dave was the one other time he had an appointment with him. Mita joined us for the appointment. Dr. N started out by asking Dave about the GERD symptoms, so Dave gave him all the details of how it was affecting him, and explained that the new medicine was pretty much the same, if not worse. He looked through Dave’s records and confirmed that Dave was a candidate for fundoplication surgery to help with the hiatal hernia, which is the main issue. Thanks to the GERD medicines Dave already takes, he has no problem with acid reflux. But the hernia was making food and the Hep C medicines wash back up into his esophagus.
The doctor scheduled Dave for a surgery consult, so he goes for that in one month. From there, he turned to the lab results and made a comment about Dave’s thyroid level. He asked Dave how he was taking the thyroid medicine, since it needs to be taken an hour before you eat. Dave explained that he gets up every day at 5 am and takes his thyroid medicine. Then he would eat a snack at 6 am, before his dose of Victrelis and Ribavirin. He was very, very careful about taking the thyroid medicine properly because he knew the Hep C meds could mess with his thyroid levels.
“Well, obviously the Hepatitis C medicines were preventing your thyroid medicine from being properly absorbed,” the doctor continued. “That happens sometimes, and your level is really high.” To be honest, we’d forgotten about the thyroid issue. It was mentioned at the first class, and they checked Dave’s thyroid values at the end of January, before he started treatment. Everything was fine, and it was never mentioned again. Apparently they don’t test the thyroid again until this three month visit.
I was sitting behind the doctor so I did miss some of what was being said. At one point I could tell they were talking about medication dosages and I asked him to clarify – was he talking about the thyroid medicine? I thought he was telling Dave they were going to increase his Synthroid dosage. After he explained that he was talking about the GERD medicine, I asked him if Dave’s Synthroid dose would be changed since his thyroid level was high. He said no, just keep taking the same dosage and the level would probably come down on its own since he’s no longer on the Hep C meds. He’s getting his thyroid re-tested in a month.
The general feeling from the whole visit was one of compassion and a willingness to work with Dave to help him feel better in general. There was no sense of ‘Why didn’t you try harder?’ or ‘Why didn’t you just stay on the treatment even with the side effects?’ The impression we got, from the doctor’s reaction to Dave’s thyroid level, was that he probably would have been taken off the Hep C meds even if he hadn’t had the issues with the Victrelis burning his throat and lips.
Ironically, talk of the Hep C treatment was very minimal during this visit. There was no mention of future treatment plans or any concern about his viral load at all. Pretty much the only thing that was discussed was the fundoplication surgery and the thyroid issue. Towards the end of the visit I finally asked if they would be testing his Hep C viral load now and in the future. “Oh yes, it’s very possible that you cleared the virus, so we’ll re-test you in three months to see what’s happening,” the doctor explained. “If you’re clear now, there’s a chance you might still be clear then. I doubt it, but we’ll see.” Mita then reminded Dave to call her next week to check on the current results of his viral load count.
They didn’t sound optimistic for it to stay clear if, indeed, he has cleared the virus by now. But even if it does come back, at least he’ll have knocked it back a bit while we wait for newer medicines to hit the market. Luckily, there are LOTS of drugs for Hep C in development right now, so we’re optimistic that if he needs them in the future, he’ll have some new options (most likely without the use of the PEG-interferon injection). If you’re curious, this is a great article on all the Hepatitis C drugs currently in trials and what’s going on in the industry: http://www.pipelinereport.org/2013/hcv
Dave wanted a copy of that morning’s lab tests, so we went down to the records department to request them. After we got the envelope, Dave handed it to me while he went to the bathroom. I couldn’t wait, so I pulled out the results and scanned them.
When he came back out, I said, “Hon…did you know your TSH is 77? Seventy-seven! The high range of normal on this sheet is 3.74!”
He grabbed the paper from me and stopped walking so he could read. I could see him looking back and forth between his TSH number and the range of normal printed to the right of it. I knew how he felt – when I first looked at it, I thought I was seeing it wrong. My first instinct was to skip past the decimal point in the 3.74 and read it as 374. I had to keep staring at it to realize that no, the high range of ‘normal’ is less than four, and his TSH is 77. Good grief!
Of course, we got all animated and talked about this for the whole drive home. It explained so much. The first thing we did when we walked in the house was turn on our computers and look up the symptoms of hypothyroidism. We kept reading threads where people would freak out if their TSH was something like 7 or 10, and they all talked about how they could barely function at that level – they were so tired, etc. Two of the biggest symptoms are weight gain and fatigue, and that completely explains why Dave has been so, so exhausted and why he gained 15 pounds in the space of a month. I mean, sure, you expect to gain weight when you have to have a snack with 20 grams of fat to go along with your Victrelis pills, three times every day. But 15 pounds in a month? That was a bit much.
Now Dave naps when he feels like he needs to, and I think he feels less guilty about it because he knows there’s a medical reason for him being tired. His GERD and hiatal hernia symptoms are back to normal; the Hepatitis C meds were obviously a main culprit. We’re counting down the days until his next TSH level is tested (last day of July) so we can see how far it’s come down. We really have no idea how long it will take for it to return to normal, or if it ever will without a change in Synthroid dosage.
We started walking in the mornings again (while Dave has the most energy) and we did stop the 30 Day Shred workout – that was just a bit too much. Easy does it! This is pretty much the end of his Hep C chapter, unless he needs to be re-treated in the future. Things are slowly getting back to normal.
Posted by wendiwendy
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!