What's next???

Bruce is off all meds - this treatment is not going to cure him so no need suffering thru the side effects any longer.  He needs to be off his meds for a month then get a blood test and see if possibly his liver will calm down.  There are some new medications that should hit the market in 2011 hopefully these will offer some hope for a cure.

In the next couple months  we need to make a trip to either Stanford or Portland medical center to visit with a specialist see if they can come up with a  game plan on what the next steps will be.

So for now we will enjoy not taking shots and Bruce can start to build back his immune system and raise his blood counts and hopefully catch his breath again. 

Shot #35

I have not been keeping up my blog weekly - truth is it has been mostly the same week after week. Bruce has lost weight, he spends most of his time trying not to feel bad and gut up for me, he is constantly tired and out of breath all the time and feels puny on the weekends.

I stopped my weekly updates when I caught him drinking during Thanksgiving. It did not feel right to continue since I was hurt and angry that he was not respecting what liver he has left.

Week after week he faithfully took his shot, every day he took his pills and every month we headed off for doctor appointment. Problem is his liver enzymes are not getting better. Actually they were getting worse.

This past week the doctor ordered some new tests to see if he was developing autoimmune hepatitis and maybe this was causing the extremely high liver enzyme levels, one of the tests was also to see if he had any detectable viral load. By now he should have no viral load, but he still has a small detectable viral load. He has had an ultrasound and that looks ok. Some of the tests they have ordered are commonly used for cancer testing, well unless my “self proclaimed internet doctor degree" is way off course. So that scares the shit out of me.

Yesterday the doctor called and said he can stop taking the shots and pills they are not going to work so no use taking them any longer. I guess I should be happy that he can feel better now and catch his breath and enjoy feeling normal, but I was really wanting a cure for him. We have an appointment tomorrow and it sounds like the local doctor will need to refer us to a specialist either in Portland or UC Davis.

To say were bummed out is a understatement, Bruce thinks it is all a huge waste of money, and I just want him to feel good and have good health. I know we will do what we have to do and put one foot in front of the other and figure out what life has in store for us, but DAMN I wish we could catch a nice break, so keep him in your prayers please.

Shots 22 & 23

I think maybe i have found the magic answer.  Low and behold the medication that Bruce was taking for gout does cause high liver enzymes.  So after asking his Doctor to google it he took him off that medication and Bruce is feeling much better.  He felt good enough to play on the floor with Bella this weekend, something he has not done for 5 months.  I think the 2 drugs were jsut poisoning him.

I have my fingers and toes crossed that this lasts. 

Week 21

I think it is definately helping to remove the Allpurinol.  Bruce looked much better this weekend, not nearly as white and pastey looking.  He seem to feel better also.  He is still tired and out of breath but i think he looks better than he has in several months.  I sure hope it stays this way.

We went out to dinner Saturday night something he has not felt up to doing in several weeks.  On Sunday we went to Walmart and Costco and he made it thru both of them.

He has a ultrasound tomorrow heres hoping all goes good.  His blood test should be back by Wednesday I sure hope his liver enzymes are on the way down.

Now we have to change insurance companies to his new employers coverage.  Not sure how much the co-pay will be  but I am hoping it is at least comparable to what we pay now.

If all is good he can start the other antiviral.  One way or the other we should find out what is causing the problem this week.

Week 19 & 20

Bruce weekends really have not changed, he just feels like crap and is tired and he needs to rest with naps. After taking the shots Friday night Saturday and Sunday are just plain ole TOUGH.

I have been so frustrated with his liver enzymes be high that I stayed up late last weekend to google everything that I could think of to see if I could figure out what might be causing this. I started investigating all the drugs he is on and low and behold I stumbled on to something on drugss.com. The medcation he is on for is gout indicated that it could cause elevated liver tests, so I asked his doctor this week to google it and it looks very likely that this may be the problwm . He is off that drug for a week then a blood test to see if his levels are lower. The doctor also has ordered a ultrasound to look at his liver see if anything looks abnormal. I sure hope we found the answer.

It now looks like he will need to be on treatment for 72 instead of 52 weeks, which really sucks but were looking for a cure, so we will hold it together and make it through this.

Thursdays and Fridays before shots are becomming my favorite days of the week, he feels better and that make me happy.

Week 18

Friday night same drill as always The sad thing is Bruce feels good on Thursday and Friday until he takes that damn shot. Saturday he is wiped out again. This Saturday he got up for an hour or so Kylei and the girls came over. Bruce took a nap and moaned on the couch. Kylei says I need to tell the doctor. I of course have told the doctor, but his appointments are on Thursday's. She now understands why I don't sleep well on weekends. Sunday he felt much better.

I am asking doctor about the medical marijuana this week for the nausea and pain, if it works, what the hell I am all for it.

His new drugs finally showed up. So we will start those tomorrow since he had his blood drawn today.

I have made this new blog and moved all the content from the old blog, that one is for our Isla plans.

Week 17

Tuesday, October 20, 2009

week 17
We decided to drive over to coast this weekend for a little get away. Bruce had a very restless Friday night after his shot so neither one of us slept well. Saturday it rained, well actually poured most the day. We went downtown Brookings for a few but Bruce was tired and looked pale so we went back to the condo so he could get a nap.

I honestly think he should try some medical marijuana but were both so damn old and straight neither of us has any idea were to get any. Can't imagine going to one of those quack doctors in the Nickle newspaper. Plus I am pretty sure we would get busted since I have no idea how much an ounce is unless it is in a measuring cup or a shot glass. Still crack my self up when I ordered a kilo of turkey at the deli in Mexico, I thought it was something like a pound, nope that would be 2.2 pounds.
We agree we loved staying in Suzie's condo. It is right on the river overlooking the Jetty and opening to the ocean. It is so much more comfortable to have a whole house to come home to and stretch out.
Later we took a drive down to Crescent city casino for a hour or so. Went to dinner at O'hollerans and headed to casino at Smith River. Bruce won a few bucks I ended up even, so all and all a win.
Saturday night was another sleepless night, not sure why but we both tossed all night. I finally got some sleep on the drive home.
I have a busy week ahead, two after work meetings, a yearly board of directors update along with the normal day to day excitement.
Bruce has a doctor appointment next week so he will need to get his blood work done again. Here's hoping his liver enzymes are down.