Tuesday, December 27, 2011

A Happy (but Tiring) Christmas

I hope everyone had a wonderful, happy Christmas and that Santa brought you all what you wanted and deserve!

We had a quiet, but very happy Christmas here and although my fiancé was completely exhausted by the end of the day, he made it through with flying colours and even managed to complete his magnificent mashed potatoes for our dinner. Just like Thanksgiving, I did pretty much all the cooking, but he really wanted to do something, and no one makes mashies like him! So, he got himself situated and was able to do some prep work and finish up the potatoes. His daughter joined us for dinner as did my brother, so it was a lovely dinner. We figured out that the computer chair helps his back so much better than the usual chair at the dining table, so we swapped that out and he had a better day because of it!

So, still no tranfusions. He's been getting the Aranesp shot and that seems to be working well; his numbers are climbing slowly. We both look forward to the day when he will not need either the shot or the transfusions.  His weight is still a bit up and down; last weigh-in he was 181. I'm just glad it's not plummeting like I thought it would, but he is making a very conscious effort to eat one good healthy meal a day.

There are virtually no side effects/symptoms still and the hair loss seems to have either slowed down or stopped. He has lost a LOT, but I don't see it all over the bathroom floor like I was for a few weeks there. So, besides that we have the anemia (which is still improving) and the anorexia (which he is making sure to keep under control).

His gout is under better control since Dr. Goldberg told him he could go back to his full dosage of colchicine. He was originally told to cut back almost completely due to the drug interaction, but at last visit Dr. G said it was fine to go back to the original dosage. He said it was most likely the Incivek and since my fiancé's done with that he should be okay.

I wish everyone a healthy and happy New Year! Be safe, be happy, and be well.

Tuesday, December 20, 2011

Going the Distance

Visit with Dr. Goldberg yesterday and he is definitely pushing my fiancé out to 48 weeks. Or at the very least, 36 weeks. I'm kind of disappointed because of the toll the meds have taken, and are still taking, on him. But, he feels good about going the distance, especially if it gives him that sustained viral response. Any chance to make sure the virus is dead we'll take.

Dr. G decided to do 24-wk tests yesterday (we've actually started week 21), but he's so excited and is fully expecting the results to be "undetectable" that he wanted to go ahead and do the tests. He expedited the results as I expect he wants to give my guy a Christmas prezzie!

He is Dr. G's first patient to be finished with a completely undetectable response and has the lowest toxicity of any of his other patients. He's been that lucky with the lack of side effects!!!

Side effects/symptoms:  hair loss, anemia (better, no blood transfusions in the last 3 weeks), anorexia (from Riba - but he's very conscious about eating well).

RE: back surgery and follow-up ~~~  baby steps for sure. We found out today from his surgeon that it will take at least 3 months for the nerves to begin to be healed and a full 18 months to be completely recovered!!  So now, PT is in the cards and I know it ain't gonna be fun.  But it'll be worth it. Today was the first day in 3 months that he walked through the hospital without a wheelchair. He was exhausted this afternoon, but I'm so proud of him and I think it's a great start!

Pegasys shot tonight!

Friday, December 16, 2011

One Step Forward


My fiancé is feeling a bit better. Less pain from the surgery and walking around better and better. Unfortunately, still having that temporary paralysis and I've seen it twice. Once it happened when he was right next to me, and I couldn't catch him in time. The other time was the other night, and I heard a big thud coming from the bedroom. Went in to find him crumpled on the floor trying to get up. He'd hit his head on the wall unit as he fell (just scraped it really -- no blood) and it broke my heart. Nobody seems to know why this is happening.

Re: the Hep C ~~ still doing wonderfully with that. Still losing weight, but he's in good spirits. He's forcing himself to eat dinner with the fam, so at least I know he's getting some nutrition and I always try to make a nice dinner so it's not just us grazing here and there.

No recent transfusions. His blood levels are getting better, but now he has too much iron fromt he previous transfusions, so when his hemoglobin drops below a certain number (they keep changing it), he gets a shot of Aranesp.

His gout is acting up again; they knocked down that medicine because it interferes with the interferon (lol) and that unfortunately increases his uric acid, so very uncomfy for him. And still experiencing the hair loss. Very depressing for him ... he's always had lots of hair even at his current age. But, they say it will come back!

Appointment with Dr. Goldberg on Monday (12/19 <----- can you believe this month is almost over?????!), so I'm sure that will be a good visit.

Looking forward to a nice quiet Christmas and hope everyone else is looking forward to Christmas or whatever you happen to celebrate this time of year. Plus, we're very excited about seeing our Boston Celtics on TV this weekend. We're big basketball fans (he was a bball star in high school!) and we've been missing it, so go Celts!

Tuesday, December 6, 2011

Not much change all around

My fiancé's anemia is better. He hasn't needed a transfusion in 2 weeks! The anoriexia due to the Riba is still working and he keeps losing more weight.

Current weight = 178

Hair loss seems to be less; not sure why. He's taken to wearing hats all the time now, even in the apt. If you didn't know what he looked like before, you would know that he's losing his hair, but I can see it when I look at him and just look forward to the day when it begins to grow back!

Pegasys shot tonight...so far, so good. There's been no side effects from that in the recent months, so hopefully we'll keep going with that record.

It's been just over 3 weeks post op and my fiancé's experiencing less pain from the surgery, but is now having some kind of weird temporary paralysis. He'll be standing or walking and all of a sudden his knees buckle and legs give out. He's fallen down the stairs twice and I've caught him a couple of times when it happens in the apt. His doc doesn't know why, so we sit and wait till they figure it out. His spirits are pretty low, understandably. I've given up praying as they don't seem to be answered by the man upstairs. So, we're hangin' in and hoping for a solution or a clue at least from the doctor. I'd hope they'd give him another MRI to see what's going on there.

His gout is kicking up a bit, too. His feet are sore and achy. He rests them when he can and we just pray that the flare-ups stop and things even out with the feet.