Wednesday, August 31, 2011

Injection Reaction Again

Today brings another set of side effects due to (we believe) the Pegasys injection. He could barely stay awake while eating his breakfast this morning, then after about a 2-hour nap, he was quite awake and present. After some errands, he went in to lie down and napped on and off the afternoon. After dinner, he took a nap for a couple hours. As a matter of fact, he looked v sleepy during dinner!

Picked up new meds today ... Promethazine 25mg. It's apparently like the Ondansetron, exept it's not under the tongue. those seem to help quite a bit, so we're grateful for that!

Tuesday, August 30, 2011

Cautious and Apprehensive

Today is Pegasys injection day (not till later this evening), and we're a little worrisome over what to expect. After last week's very bad side effects (the flu symptoms) and being basically down for the count for 3 days, my fiancé is understandably a bit apprehensive about taking the shot. I'll report later how that went (fingers crossed).

Tummy issues today, but other than that, no other side effects. He rested this morning before our errands, but has not napped at all the rest of the day. I feel so bad when his tummy troubs hit, but I can't do anything. He had a banana awhile ago and that does seem to stop any nausea.

11p = Pegasys (interferon) shot. Went smoother than last week; no bleeding, but he said it hurt, which is something that it hadn't at the beginning. I assisted with the shot and everything went fine. Not sure why it's hurting him these last 2 weeks.

Monday, August 29, 2011

Another Good Day!

Today's a great day....no tummy troubs at all! Just some tiredness and he's making sure to rest when his body tells him to (which is not the norm). He's learning. ; )

Had a visit with his primary care doctor; a physical exam with follow-up from previous visit. Everything went well and she seems pleased with how he's doing on this new treatment, too.

He's still dropping weight though...his weigh-in today was 184.2 (minus almost 5 pounds since Dr. Goldberg visit on 08/22 when he was 189.6).  His BP today was 126/66 which was great, too! Much lower than the last time he visited his PCP (May 2011; 160/100!).

Still nothing about his (4 wk) viral load results.   : (

Sunday, August 28, 2011

Weak-end

My fiancé's feeling quite weak today. Doing the slightest thing makes him tired, so he's kept pretty quiet and just watched some old Westerns! Except for assisting me with making a simple dinner (we invited the brother over again), he's pretty much kept quiet and rested, which is v good.

It's not been a good day for me either. I'm really feeling exhausted....still only managing 4-5 hours of sleep a night and I need those 7 hours. Gotta make sure to get those hours in ASAP. But compared to him, I'm doin' okay! We keep plugging away!

Saturday, August 27, 2011

A Little R&R

A great day catching up on all the DVR stuff that's been holding. Resting every chance we can and relaxing. Getting ready for Irene tomorrow. Not likely to be too big a deal for us, but we're watching everything anyway.

He's feeling great today; v happy. Only minor tummy troubs this evening, but not enough to really take anything for it. Itching all over ... not intense, but an annoying slight itching.
Nice to have a day when there are no deadlines ... for anything.

Looking forward to hearing (hopefully) from Dr. Goldberg on Monday. We need to hear something good after all this hard work my fiancé's been doing!

Friday, August 26, 2011

Weird Day

It began as a strange day and it ended the same way. Seemed like everyone was in a funk today. Could be "Irene"...maybe just people trying to prep for the hurricane. Last one I remember was Bob, in September of 1991 (I think). Anyway, it was a very weird day out there today.

No call from Dr. Goldberg's office on his 4-wk viral load test, so we have to wait till Monday (hopefully) to hear the results.

A bit tired today and that's about all for side effects! How cool is that?

Thursday, August 25, 2011

A (Definitely) Quiet Day

Well, yesterday turned out to be not as quiet as I would've liked, but there's a reason for everything. This morning started with his breakfast at 6:30a so he could take his pills at 7a. I took his temperature and it was still a bit raised (99.7) and he looks and sounds like he has the flu. Slightly laboured breathing and he can barely keep one eye open. About 30 minutes after breakfast he declared he was hungry again, so he had a banana. It's now 8:30a and he's sound asleep ... hopefully for awhile. I'll retake his temp later.

We're assuming the raised temp is from the Pegasys shot on Tuesday. But, I'm a little concerned since the last time his fever lasted only a few hours. I realize 99.7 isn't a true fever, but his normal temp, like mine, is closer to 97. I'll keep my eye on him and make sure he stays in bed all day; he really does need the sleep and the rest.

V strange day today. He slept most of it. When not sleeping, he's weak, too tired to stand up for v long, and sometimes a bit disoriented, like he's sleepwalking. It's now 9:45p and he seems like he's breaking out of all this. Still feels tired and weak, but his mood is better, he ate a nice dinner, along with a brownie for dessert, and is smiling a bit more! Said earlier that he felt weird, kind of spaced out.

CuraScript called today to see how he's doing. Talk about timing! I chatted with a nurse who asked me the standard questions about how I thought he was doing and we talked about symptoms and side effects that he's having. She agreed that, although terrible to have to deal with, they are expected with these drugs that he's on, specifically as it relates to the Pegasys injection that he took on Tuesday night.

We're still waiting to hear from Dr. Goldberg (fingers crossed it'll be tomorrow.....if not, we wait till next week). We're hoping for good news !!!!

Well, off to beddy bye!  <yawn>

Wednesday, August 24, 2011

A (Not So) Quiet Day ☺

Up at 6:30a for some breakfast so he can take his meds, and now he's back to sleep. He could barely stand up when he went out for a smoke awhile ago ... he had another bad night last night. He's a worrier; that's an understatement really. But when he had that pain and bleeding at his Pegasys injection site, he brooded over it and wondered if something went badly. I told him he was fine, which I truly believe, and this morning he said the injection site is much less sore than last night. He's just gotta go slower and be more deliberate with that shot, I think.  Anyway, hopefully, he'll sleep for a couple more hours. We do have two errands to run today, but I want to get them done and come right back home. I could use some more sleep, too.

Ran our errands (which took longer than expected) and came home pretty tired (both of us!). He crashed for awhile and just as I was about to prepare supper, he said he felt awful and didn't want anything to eat. Within a few minutes he complained of feeling like he was coming down with the flu, so looked like he was having the Pegasys side effects again. He was disoriented, dizzy, talking almost like he was drunk, had the chills/shakes ... some of the same side effects as the last time (July 28).  Sure enough, his fever went up as follows, but is now on the way down again:
  • 5:45p = 97.5
  • 6:30p = 99.5 (eyes look "sick"...a bit bloodshot)
  • 8:30p = 100.6
  • 9:30p = 100.6
  • 10:45p = 99.5
So, his temp's on the way back down again! Hope he sleeps well tonight and feels better tomorrow.

Good News Day

Started off great....the new medicine* my fiancé got from his doctor (Dr. Eric Goldberg at the Lahey Clinic---an amazing doctor, one of the best I've ever met) to help with his nausea/indigestion worked wonderfully well. He took it last night before his 10:30p "fat snack" and he not only had no tummy issues, but also slept through the night. Didn't wake up once, actually shut things down for the night at 1:30a, and slept past 6a--almost unheard of.
*<<<Zofran (Ondansetron) 4 mg sublingual>>>

Then, later this morning (Tuesday), he got a call from his doctor's office saying that his red and white blood cell counts have improved since his last test! V good to hear that, but we still have to wait a few more days for the important numbers (or lack of numbers, I'm hoping). I'm staying positive all the way through this!

The day went mostly well after that. We had a few errands to run and took Mum out to lunch at the Aegean Restaurant (a local Greek place). We all had fun and it was wonderful to eat somewhere different and to have different food than usual. Everyone enjoyed themselves. We had one more stop after lunch, then he began to get v tired, so home we went. He rested, had a small dinner and watched some TV.

He's been experiencing diarrhea almost every day and he mentioned that today was the first day he's actually had constipation! Go figure.

At 9:30p I took the Pegasys out of the fridge and to come to room temp. At a little after 10p, I assisted while he took the shot. No biggie...he's done this before. Except he may have gone a little too fast or took a funny angle, or something because there was a bit of bleeding right after he pulled out the needle. I wiped it away and was about to put a small bandaid on it, but there was no blood to be seen. He went out for a cigarette right after that and said he immediately felt dizzy. He came inside and settled into bed to watch some TV for awhile. At this moment, he's off in dreamland. I only wish it was for the night, but he's v stressed about the bleeding and the injection site pain he's having, that I imagine it'll be awhile before he hits the hay for the night. I asked if he wanted me to call the pharmacy where he gets the meds from (they have a 24-hr pharmacist in case of questions) and he said no.

Monday, August 22, 2011

Marvelous Monday!

VISIT WITH DOCTOR TODAY; 1st (4wk) ROUND OF BLOOD TESTS!
Doctor visit went very well we thought. We talked about how my fiancé is doing (my observation as well as his own), and what the doctor thought based on his notes. I shared this blog with him, which I thought would be good in case he wanted to check out what we have here. All the food I've listed, general comments, and specifically, the side effects/symptoms. The doctor thought the "cheat sheet" I created was a great idea, so I've posted that up here as well for anyone who wants to download it.

Now, to how he's feeling today. Well, he's in the other room watching The Three Stooges. That should tell you in a nutshell! He had a bit of nausea this morning, but it seems to be well handled this afternoon. He's happy, he's eaten well for breakfast and lunch so far and is looking forward to having some dinner! Days like this have been few and far between, so we'll take it! Needless to say, the way he's feeling today makes me feel so much better as well. It's been very difficult for me to sit and watch him suffer on the bad days; there are many times I make excuses to have to use the bathroom, and I just go in there, run the water and have a good cry.

One thing of note: on the bad days when he's got diarrhea, the doc suggested he get some baby wipes to help with the soreness. We did that on the way home from the doctor this morning and I have to say, what a difference it made for him. He's a happy camper all around right now!

Now, we sit on pins and needles and wait till the end of the week for the results of his first viral load test. (fingers crossed, lighting candles, praying to the blood test gods!!!)

Extras:  weight today was 189.6

Sunday, August 21, 2011

Worst day yet....

...since he started this treatment, at least as far as tummy issues go. He's eaten very little today because he's had extreme nausea, diarrhea, and has felt weak and extremely tired all day long. He feels so bad that it's showing on his face and I sense a bit of depression (I mean, whou WOULDN'T be with everything he's going through). I try to makes jokes and smile and kiss him and tell him that I love him and how proud I am of him to go through all this (things he, of course, already knows), but it's one of those days.

He can't see through the discomfort and pain, and because of all that, he's not sleeping at night. He manages to grab naps all day here and there, but at night, he's awake watching tv till 2, sometimes 3am, even when he takes his nighttime "help me go to sleep" pills.

It's breaking my heart to see him like this, and I think he's upset because he had those three days or so of little or no symptoms/side effects. He felt so good and was looking forward to tomorrow's blood test (his 4-wk viral load test). I'm still confident the test will be an extremely positive one, but I'm sure he's not feeling that right now.

I pray he can sleep tonight and wake up tomorrow more refreshed and feeling better.

Saturday, August 20, 2011

Two Steps Forward, One Step Back

Today's been an "okay" day. Mostly feeling good; just v tired (and he's been resting when the moments hit him) which means he's sleeping quite a bit, but that's to be expected. I'm so glad to see that he IS listening to his body. Upset tummy this evening after supper and it's bad. Plus he's got diarrhea today....first time in four days. That's manageable, but the tummy is really giving him trouble. I think he may have eaten too much. We had my brother here for dinner, and had a great time! Dinner was lasagna and that may have been too rich for him with the tomato sauce, etc. He had a small piece, but I think it was bigger than what he's been having, Also had one scoop of vanilla/caramel swirl ice cream for dessert!

Another tough day for me, too, but not as bad as yesterday. Think I'm gonna go play a game on my phone while he watches some baseball.  Sweet dreams to all!

Friday, August 19, 2011

Sleepy Time

Today was a good day for him to rest and catch up on sleep (hopefully I'll be able to do that this weekend). No side effects from the meds today, but he's been v tired and hopefully has made up the sleep he's missed. He doesn't get to sleep till well after 1am and we have to get up early to start taking his meds, so not much rest at night.

I can barely read what I'm writing right now, so I'm going to head off to beddy-bye and reconnect with this blog tomorrow. Nighty-night!

Thursday, August 18, 2011

We are amazed!

Okay, this is the 3rd full day with no symptoms/side effects! He had a teeny tiny little wee blink of nausea after morning cereal, but he's been feeling great all day long. Again, NO NAPS, NO TIREDNESS!  We can't figure it out, but we like it.  Is it possible that the medicine is kicking the virus's ass and that's what's making him feel better???  He's mentioned that he's feeling better than he has for quite awhile.

First (4-week) blood test on Monday! We're very excited to see the results. I found a couple of great docs online:  one's a lab tracker~~ http://www.hepatitisneighborhood.com/common/media/MyLabRecords.pdf
the other's a treatment diary~~ http://www.hepatitisneighborhood.com/common/media/MyTreatmentDiary.pdf.
Both pretty neat items.

Wednesday, August 17, 2011

Wonderful Wednesday!!

First up: NO SYMPTOMS / SIDE EFFECTS today. And, he didn't even take a nap .. AT ALL.
Weighed himself today......187 (-8.5 pounds since 8/9/11) 

He felt great all day, even though we were running around here and there to get some things done. I expected him to crash during the afternoon, but he was good to go all day. He did relax and watch some tv for awhile but no big sleep during the day. Yay!

I know that I will sleep well tonight knowing what a wonderful day he had today! Hopefully, it will carry over through tomorrow!  Sweet dreams.

Tuesday, August 16, 2011

A Really Good Day

Today was virtually symptom-free! He felt pretty good all day with the exception of the minor nausea a couple of times during the day (always after eating) and an itching episode after supper. He applied lotion to his legs, the only area affected, and was good to go shortly thereafter.

Took his 4th Pegasys shot tonight at 10pm. Hopefully, he'll be feeling fine tomorrow (fingers crossed).  Good night and sweet sleep to all.

Monday, August 15, 2011

Monday, Monday

A lazy day with a couple of short errands. Lots of rain today, so kind of a depressing day all around in general; he was a bit in line with the weather report today, too.

Noticed his fingers/hands are particularly dry today, with some extremely dry skin on index finger of right hand. Put lotion on and wrapped in gauze; that'll help make the lotion go into the skin and hydrate it faster. Should be right as rain (what's so right about rain? never understood this coloquialism) tomorrow.

He's drinking tons of water, so keeping his body v hydrated! Eating fairly well, but stomach still gives him issues. Finds if he eats part of a banana, his tummy evens out.

Had some flu-like symptoms earlier this evening, but seems okay now. Didn't take his temp; symptoms seemed to be quickly passing.

Sunday, August 14, 2011

Sleepy Sunday

Today's major symptom is the tiredness. Second up is the nausea. I feel so bad that I can't do anything for him. At one point he had some cut up fresh fruit and that seemed to help his nausea, but it always keeps coming back.   : (

Also today was the first day he noticed the metallic taste. It's not as bad as nausea, but it's still one of the weird side effects. Praying for a better day tomorrow.

Saturday, August 13, 2011

Sleepy Saturday

Okay, so another day where he's either sleeping or resting in bed. He gets frustrated with how tired his is, but he's very accepting of the reason why and is not fighting it, as I suspected he would. He's a very "go-getter" type of guy, and usually, it takes a lot to make him have a lie-down and just relax.

He's decided to track his fluid intake also, which is a pretty good idea. He's very good at drinking water all during the day, but tracking both water and other fluids he takes in is going to be an interesting project!

I made some coffee awhile ago and offered him a small cup. With food in his stomach I was hopeful that he would enjoy it. And guess what? He did!!! V happy about the fact that he hasn't gotten an upset stomach today, yet. I did see him munching a couple of TUMS, but he's allowed, so whatever can help him is great! 

Hang in there sweetie! You're doing great!  One thing I have noticed, is that the hiccups seem to be lessening in occurance (yay).

Friday, August 12, 2011

Friday Feast!

Today's a good day! He's happy and feeling well. As a matter of fact, we're both amazed at how HUNGRY he is today! He ate two big meals and has felt pretty good all day long. We'll take it however, and whenever, we can get it, but this is definitely a good day!

At the end of the day his tummy feels only slightly upset. Took two Pepcid today. Oh, and his legs are itchy. This is the bottom section of his legs (shins)....rubbed Sarna lotion into them, but he says there's not much relief. Maybe some Benedryl lotion/cream?

Thursday, August 11, 2011

My Hero

Feeling mostly good! Spirits are wonderful; making jokes and smiling! Tummy a bit upset after breakfast. Has bad headache, probably from sleeping "funny" at night,,,,,I feel bad about that, but ....at least he slept. Last night was probably the best night's sleep he's had since he began treatment, so YAY!!!

Still having tummy issues into the afternoon, but he's dealing with it v well. This man is my HERO! I wish I could take on all his pain and troubles so he wouldn't have to deal with it.

Wednesday, August 10, 2011~~

Back pain is v close to unbearable which, for him, must be inhumanely excruciating. He’s v strong (he's been dealing with the back pain on a daily basis for many years) and doing so well with all this; I honestly don’t know how he’s managing--I'd be a complete basket case. Other than his physical pain, he’s doing well today. Joking around and in good spirits. 

Tried something new this morning: instead of taking his medicines directly after eating breakfast, he waited 20 minutes and consequently had NO upset stomach as he has been having up to now!

Took 1 pepcid about 11:30a….not as bad as usual, but enough for the 1 pill; no TUMS so far either.

Tuesday, August 9, 2011~~

*FIRST FOLLOW-UP APPOINTMENT TODAY* 
weight=195.5 (last weigh-in at doctor visit on 7/15/11, he was 203)
Aside from v bad back pain (last night and this morning were pretty close to the worst I’ve seen him), he’s doing well so far. No pepcid till well after supper.

Two full weeks under his belt on the new treatment! Appointment went v well. Doctor was pleased with progress so far. We asked a few questions, the doctor asked us a few questions. All in all, it was a good visit and things seem to be right on track.

First blood test for viral load at next visit on August 22nd (fingers crossed that the numbers will be on the money!)!

Monday, August 8, 2011~~

So far so good (8:30a)…tried some coffee this morning for the first time in over a week, but it didn’t sit well. Maybe it’s because he’s got nothing in his stomach. If feeling adventurous, maybe try after having some food.

Sunday, August 7, 2011~~

Mostly not a good day. Tummy still not good and feeling v tired and weak all day. Flu-like symptoms today big time: achy, tired, but no fever.

Saturday, August 6, 2011~~

Not a good day today. Felt pretty good beginning of the day, but major tummy troubles this afternoon through evening.  Still having hiccups!

It seems we're going back and forth with one good day, one not so good. He's in good spirits, though, so that's always a good thing.

Friday, August 5, 2011~~

Pretty good day in general. First day he’s not taken any Pepcid or Tums!

Thursday, August 4, 2011~~

V tired this morning. Almost falling asleep on his feet. Not too worried, but he almost seems drunk, so am keeping an eye on him. Otherwise, he is doing v well.

Wednesday, August 3, 2011~~

Feeling v good today! No bad reaction after the three meds yesterday! Maybe the meds are working in his system and the symptoms are getting less and less (she said fingers crossed).

No coffee and no cereal … banana bread for brekkie. Tummy felt great; he felt so good, that after we took my Mum to her doctor’s appointment, he wanted to have coffee AND a donut!

Turns out donut was bad idea. Funny tummy afterwards.

Bought some yummy things for him to eat: rice pudding for snacks and some nice frozen dins (meatloaf, mac and cheese, and fetuccini alfredo—see note in the Food tab for details), so hopefully this will help get him some nutrition while I work my Fat Smash Diet food.

Tuesday, August 2, 2011~~

Today will be a good test. He has a theory that taking all three meds on the same day (that would be today with the Pegasys <Interferon> shot added in to the Ribavirin and Incivek) is what made him the sickest. It may be that it was the first day with all three meds and the high content of medicine was just too much. I think, if that is the case, having been on them for a full week, the reaction may be less, or (hopefully) non-existent!

Today is the first day he's been worried about his symptoms and general malaise, and is contemplating contacting the doctor. After resting all day and getting some much-needed sleep, he seems to be doing much better. Never called the doctor.
 
BIG NOTE: determined that the culprit that caused him to vomit is the CREAM CHEESE; probably contributes to the diarrhea as well. At least based on what he's been eating, so we stay away from cheeses for now.

Monday, August 1, 2011~~

Morning started fine; no upset stomach that I’m aware of.  Note: he didn’t have much to eat today and no dinner tonight….ate some banana bread ~8p.

Sunday, July 31, 2011~~

Awake all through the night as usual. Up at 6:30am for 1st meal of the day.  Breakfast with the fam @ IHOP. Then did a bunch of errands. Home about 2:30pm … forgot to get him something to eat, so at 3pm he had the half-and-half---that was all he felt like having.

V tired today; seems out of sorts, a bit depressed. Could just be that he’s feeling the tiredness, but he’s not smiling much today.

Saturday, July 30, 2011~~

Pretty good day, except he was v tired; probably from the cruise and lack of sleep. He’s still not sleeping at all through the night. Usually up at 2am and 4am for a smoke.

Friday, July 29, 2011~~

Not a good start. Coffee didn’t settle well. He felt unwell on the way to laundry this morning. Cereal with ~3/4 c half-and-half made him feel better. By the time we got home (~8:30am) he was himself again, but v tired. Made sure he went in to have a lie-down, since we are still planning on going on the cruise tonight.

Thursday, July 28, 2011~~

Feeling extremely well (compared to yesterday). He’s not clammy; face is brighter; he looks happier. We may even be able to go on the river cruise tomorrow night after all!!!

After lunch he felt like he was getting a fever (approx 1:30pm). Fever blossomed and made him v uncomfortable for a few hours .... Click here to view symptom details.

“After dinner” meds taken at 7:30pm.

Fever as follows:

Temp = 98.0 (7am)
Temp = 101.7 (2pm)
Temp = 100.1 (5pm)
Temp = 98.6 (11pm)

Wednesday, July 27, 2011~~

He’s not doing well today. Has had diarrhea, upset tummy, and flu-like symptoms (very clammy; forehead is hot; tired and completely drained). He’s just thrown up (~7:45am). …. twice.  I actually got sick myself about 9:30am and vomitted quite a bit.

His temp in early afternoon was 99.2.   Also took one Pepcid late afternoon.

Although there were a few really tough moments for him today, he’s doing much better at end of day (11pm). Food’s going down better and fewer food issues today. We’ve decided to go the banana bread route again, since he really enjoys that as a snack!  Also, realized that if he eats BEFORE taking meds, there’s less chance of upset stomach or pain.   By the time we went to bed, he was feeling so much better than last night. Perhaps the start of all meds in one day (yesterday), including the Pegasys shot and the large meal, really did him in.

Tuesday, July 26, 2011~~

Started meds today on following schedule:
7am ~~ 2 INCIVEK; 3 RIBAVIRIN (must take with food containing 20g fat)
3pm~~2 INCIVEK (must take with food containing 20g fat)
6pm (after dinner)~~3 RIBAVIRIN
11pm~~2 INCIVEK (must take with food containing 20g fat)

10pm (once a week on TU)~~PEGASYS INJECTION

a little backstory

I'm new to blogging, but thought this would be the best first experience!  My fiancé is 3 weeks into his Hep C treatment with the "triple threat" (Incivek, Interferon, i.e., Pegasys, and Ribavirin); we thought it would be a good idea to share his/our experience with anyone who is interested to read about it. I've seen some other blogs about people who've gone through treatment and it has been a great inspiration!

My fiancé and I met and dated 35 years ago, but it didn't work out back then. VERY long story short, we met up again a few years ago at a time when we were both single, and we began our "second time around". We missed out on the younger, more healthy years (for both of us), but as I know there are no accidents, we came together at the time we needed each other most. I love him with all my heart and am glad I'm here for him especially at this time.

So, here we go .....wish us luck!