Lost Son's Updates on Dad with Hep C, Part III

How's the edema today?

We haven't heard from lostson in few days...maybe they had holiday plans...but they seem like a stay nearby family and with dad so ill I'm really worried...

Lost son??? you out there lurking? Let us hear from you.

Hey guys, thanks for the concern. Means a lot. Things have been so hectic lately, and at home things are the same...I actually had to go away on business to Boston (beautiful city) last week a few days and then had a death in the family of a close friend. That and topped off with visiting my dad and seeing him really caused me to take a mental break. I walked the freedom trail in one morning and just thought of so many things along the way. It is good to do some thinking far away.

As for my dad, last week he was in bed for 4 days straight only getting up to use the restroom. Yesterday I stopped by to visit and he did come out to the deck to get some air and talk. He is very thin (Most I've seen him) and his arm is extremely bruised. My mom says he won't eat much at all. Luckily she is on vacation and is forcing him to eat breakfast and making him get up and go for a light walk.

The edema is still pretty bad and he says that when he walks for more than 10 minutes his feet swell up a lot. His eyes are also a bit more on the yellow side than the past few weeks. Worse of all is my mom is struggling to get up everyday herself. Her arthritis is so bad she can't sit nor stand for more than 30 min. at a time. It was a very sad visit seeing the once so happy and loving couple now in bed with a look of sadness and defeat in their eyes.

I bought some groceries and then made some small repairs and moved some items they needed while I was there. It was a nice yet depressing day.

Hope everyone had a great holiday weekend.

LSon...glad you checked in....I was really worried. More hugs, Mama Lama

Mae, I absolutely LOVED Boston. Being a huge history buff I was in awe pretty much the entire time. I was also amazed at how friendly the people were. Long way from Chicago....lol. I would certainly go back again. In 2 short days after work I was able to do the entire freedom trail, paul reveres house, bunker hill and many other places. The weather was in the 90's as well so it was a perfect time to be there.

themiz, YES! My mom did get them at Walmart. Thanks for the recommendation. They were around $24. My mom said he wasn't too convinced about wearing them at first since they went up so high. He joked about wearing a dress to go along with them. Lol. But it looks like yesterday he put them on and feels comfortable.

Worried....

Well he went and just as suspected his swelling is getting bad. Looks like they are going to give the diuretics one more shot by doubling the dosage yet again. If this doesn't help in a weeks time then he needs to go back for a paracentesis procedure. Not sure where I read this but is it true they can only do it so may times? This would be his second.

I am not sure why the diuretics stopped working.

He is also to go back in a few weeks for a follow up. He got some blood drawn so let's see where this comes in....Not sure why but I haven't been feeling as upbeat about all of this lately...

Once he takes the diuretics and let's assume they DO work, does this mean he will need to stay on the high dosage from here on out? Has anyone here ever had their dosage raised so much?

Thanks Splash,

He was on 5mg of AMILoride for months. Then they doubled that to 10 mg 3 weeks ago. And today they double that. So he is up to 20 mg daily effective today.

He is also on 40 mg of furosemide.

They did keep a close eye on his kidneys and last week went in for labs to check things out. It all seemed ok. I will have to wait on todays labs.

LS,

Maybe bblbt's doc knows something your dad's doc doesn't. When you get a chance, ask about the bumetanide vs furosemide situation. Maybe it will help dad, you never know.

So glad you checked in LS.

Hugs,

bblbt, what dosage are you on for those medications? I know my dads creatine levels were holding steady. Gradual increase but nothing too significant (Prior to todays labs that is) I hope the change in medication helps you get better. Sometimes one medication makes a huge difference.

Mae, It sure doesn't hurt to ask. I will ask my dads doc about it. It also helps to show them I am keeping a close eye on things.

My creatinine levels have been above 1.5 for several months and recently have been flirting with 1.7 to 1.8. Getting blood in the urine now as well so, between my liver disease and the overlapping CTD, my poor kidney's showing the strain. Originally I'd been using the standard aldactone/lasix combo with corresponding dosages of: 100mg & 40mg both 2xDaily. This was working very well wrt the edema/ascites but then my kidney started to "over-heat". We had to reduce the dosages down to: 50mg & 20mg both 2xDaily and this worked for a bit but my edema/ascites started to make a comeback. Now the kidney's complaining even more and we switched to aMILoride/Bumetanide at: 5mg/1mg both 2xDaily. Definitely not liking the trend here ...

You have but one kidney, right bb? You have so much info on the science side of this. Really happy you hang here with us :) Like you, I think many would like to see their ankles..lol. Along with the ankle, I have forgotten what themister's normal knee's look like. Big Hugs

themiz - Yes, unfortunately I'm down to one kidney but it has performed admirably for the past decade or so. It's just been a very rough past several years for it I'm afraid. David - I did use TEDs myself for a bit and it did help some. Also massaged my own feet and lower legs as well, the best I could anyway. Made sure I moved my feet through an exaggerated range of motion too as I slowly walked to enhance the natural pumping effect just walking has. Every little bit helps.