Tuesday, June 29, 2010

Gearing Up to Fight the Fight...

Short history:

Normal white blood cell count - 4500 to 10,000
Normal Platelet count - 150,000 to 400,000

Don was diagnosed with Hep C genotype 1 late in 2008. He started treatment in January 2009 - completing it in Dec. 2009. He has cirrhosis and varices (like varacose veins in the throat - caused by liver not being able to filter the blood fast enough and it backs up causing pressure on the veins.. it is very dangerous if they rupture). After 3 months of treatment his WBC and Platelets dropped drastically.. he was given injections to get his WBC back up..but his platelets were dangerously low.. (lower 30,000 range) His interferon injections were cut in half and then he was referred to a liver transplant specialist.

The new doc - put him back on full interferon injections telling us that unless Don's Platelet counts were dipping in the low 20,000's he was comfortable being more aggressive with the treatment. The next appt, Dons Hep count was 30,000+ and the next time he was clear..but he was now past the 6 month mark. He was treated for 12 months total.

He was still clear in March for his 3 month test...and he looked amazing... bright white eyes and his strength returned.. At about the 5 month mark though his urine was sometimes very dark. That was the only indication something was not right . He still felt wonderful and his eyes were still clear.

Our appointment yesterday sadly revealed that he has had a relapse. Our treatment choices are:

1. resume old treatment.. this time for 18 months. (1 interferon shot per week with 14 daily pills.

2. more aggressive treatment of 7 shots per week..not sure about the pills.

3. being entered into a trial med test where some get the test drug and others get a placebo..and you don't know what you are getting..

4. do nothing and wait for "future meds" to be released...but in the time we have dealt with this ..I keep hearing the same old thing... 2 more years for these new meds...but that is what I heard 2 years ago.

Yesterday - I did what all big girls do facing something like this... I cried my eyes out... I slept for 5 hours during the day .. I ate an ENTIRE box of chocolate chip cookies ..and then I got up and started to do more research. I will fight for Don until my last breath...standing over him like a mad dog if I have to....

Please leave a comment .. Don asks me every once in a while about it and it is fun to read him the responses..


Helen said...

Dear Julie and Don,
Though I am on summer break from Living Boldly, I do check favorite blogs from time to time. I saw your post yesterday ~ and now today. And wanted to comment ......

I can't imagine the turmoil all of this has caused for you and your family members. I don't have words of wisdom ... I just want you to know there are many, many nameless, faceless people out here rooting for YOU ~ with all their might!

Catherine said...

Thinking of you Don, up here in Canada! I love your wife's blog(s) and her love for you shines through in her many posts. Hope the treatment is quick and effective, you will get through this! God Bless.
- Catherine

Dianne said...

I feel your pain. My husband is going through the same thing. Joni from Cote told me about you. I would love to email and comfort each other. We need all the moral and emotional support we can get. I hope you will respond.

Pamela Terry and Edward said...

I am so very sorry you two are going through this. Life is just so hard and confusing sometimes. Please know that you are in my thoughts and prayers!

bj said...

OOO, Julie...I am so sorry to hear your HUNK is sick again. I am so glad you let me know...that way I can add him to our prayer chain.
I am just sick about it because, like everyone else, I thought he was doing great.
Well, he is a strong man...he has proven that already so I have faith that he can whip this thing. Both you and Don seem to be really strong willed and that's what it takes sometimes.
Please tell him I am rooting for him with everything I've got...and give him a big ole hug for me. After all, he is INDEED the most handsome of all my Pink Saturday Hunks !! :)) Speaking of which, I think I'll start that back up again soon!!

fernvalley01 said...

SO sorry, is transplant and option? My mom had primary Billary cirrhosis due to a genetic condition so I am familiar with some of what you are watching hubby go though. In moms case 1988 brought her transplant and a near complete recovery (she has issues associated with the disease process prior but her liver is healthy) longest surviving liver transplant patient in Canada a. (I tell you this not to brag, but to say there is help and treatment and medical science is advancing daily) I will be keeping you and Don in my prayers

vivian said...

hi Julie (and Don!) so sorry to hear about the relapse. that really sucks! You have a great attitude.. I think the tears were necessary to clear your mind to make a fight plan! I'll be keeping you both in my prayers again. keep us posted!

pedalpower said...

I'm so sorry to hear about the relapse. You two seem to be such a great team...and you have a great attitude. I'll keep you and Don in my prayers!

Anonymous said...

Hello- I have been reading your blog for several years. I saw a link you had posted on COTH about your barn and house. I am a horseman.
I remember when you started blogging about Don's hepatitis- little did I know that I would be diagnosed with it a year later.
Anyway, thanks to reading your story I at least knew that there is a treatment for the disease. Previously I thought, as many people do, that there was no hope for any cure.
I have been thinking about emailing you to thank you for some time and when I saw the update yesterday I was very sad. I just want you to know that your blog has meant a lot to me. K

Julie said...

If you ever need to talk K...please e-mail me. juliesize@yahoo.com It is a strange illness ... and the meds to treat it can be trying at times to say the very LEAST!


gowestferalwoman said...


Not sure if you have researched on the website " Science Daily News " but they have a wealth of information that continues to be updated with the latest. I use it frequently, and they
quote their sources.
And make sure you two take mini vacations whenever you can fit it in; even if its just sitting a while in the backyard, admiring the chickens :)!

Dawn Marie said...

Real love is the greatest source of joy and also the greatest source of pain. Every day we have to face the fact that the people we love are mortal. I think of it every day with my four little girls as I look into those beautiful brown eyes and think of the amazing things they will do. However, I am not guaranteed that nothing bad will happen to them -or ME! But I also know that they are in the care of the Creator -who loves them even more than I do! I take comfort in that thought. God loves Don even more than you! And though we cannot see what is going to happen in the future, and even though we watch the ones we love suffer -helpless to ease their pain- we can trust that there is food for our souls in the process. The pain that we face and endure is going to be bad, but in the end it will be redeemed. There is a purpose in it all. Even though we cannot see.
I will pray for you both. Though you may not have Hep. C, I am sure you are hurting as much as he is. It is a pain that cannot be measured in physical terms, but is real. You are stronger than you think! God bless you, and comfort and sustain you both as only He can!

LivingTheLife said...

I agree with what Dawn Marie has to say...God does love Don even more than you do...I know that may be hard to phathom...but on the other hand it is so very comforting.

You know I have been through this same thing with my darling man...I just checked my blog after being absent for far too long. I am not happy that you two are facing this challenge once again...I would have had TWO boxes of chocolates and possibly a day of crying...but I like you know that you DO have to put your "big girl" and "big boy" panties on (Don I do hope you are wearing briefs and not panties, but I digress...lol) and get on with the FIGHT! WE were very fortunate in that sweet hubbin had 6 months of the treatment...about 9 years ago...I think...and all seems to be well...BUT we do know folks that had to have round II of the treatment...and they are enjoying great health today! I know with all that is being discovered medically each day and ALL of us out here praying for Don and you Julie...you guys are going to put up a hell of a fight and WIN!

I pray you get to take a nice relaxing vacation...I so know how you need it...and I will be here praying and rooting you on whatever treatment you decide upon.

Please keep us informed...let me know if I can do anything...and know that I care and will be praying for you both...

Now...go have some fun, you two...you deserve it!

Love and hugs...