Driving Miss Daisy

Ron's had some fluid retention in his belly (again); we were just in the hospital a few weeks ago having his belly 'tapped' - and now the fluid is back with a vengence. He went from 7 months pregnant - to 9 months in less than a week. Ron went back to see one of the liver team doctors today - Dr. S said it's too dangerous to perform another tap so soon. They upped Ron's medication (diuretics) and hopefully he'll 'thin' out a bit.

The doctor wants to see Ron again Monday, and he was told it's probably time to stop driving. I'm going with Ron Monday with a ton of questions for the doctor - it's time to really find out.

Ron is still #1 on the Piedmont liver transplant list (A blood type group) - hopefully, we'll get a call before he has to give up driving.

Senator Johnny Isakson

The first of the year I sent several emails to our representatives concerning the problems we're having with Ron's VA claim. Today I received a call from Senator Johnny Isakson's office - and the Senator wants to help.

The VA process has been infuriating, agonizing, insulting, and down right maddening. If I have one more person at the VA to tell me to fax them something, then to follow up by saying it takes 4-6 weeks for faxed items to be scanned into the system - I think I'm going to scream.

It's horrific the way the VA treats our veterans - shame on them!

We hope Senator Isakson can help us. Thank you, Senator.

Another appointment

"You're 1st on the list"
"Keep your bags packed"
"It could happen any time now"

Ron's MELD score is 25 and if he doesn't have a liver by February, his score will be raised to 28 (they said they've never had a 28 on the list).

Next appointment is in two weeks - hopefully - we'll receive a call before then.

A side note: Ron is feeling better since the fluid was removed a couple of weeks ago.

Catch Up

A couple of weeks ago, Ron's belly began swelling; he looked like he was about to 'deliver' any day. The bigger his belly, the more uncomfortable he became. I always think the worst, and I was concerned he had congestive heart failure.

Saturday afternoon we ended up in the ER at Piedmont Hospital (Atlanta); after 8 hours, he was admitted for a 'tap' of the fluid. The procedure is usually done by radiology, but since it was a weekend, the doctor did it 'bedside' (Sunday). The doctor drained 5 ltrs, and after 4 IV bags of albumin, Ron was discharged....YAY!

Last week Ron had an appointment with one of the transplant team surgeons; again, Ron was told, any time now.....how can they keep saying that - and nothing happens.

#1

Ron received a call from the transplant coordinator - he is #1 on the list - the next liver with matching blood type will be his. We're both anxious and hoping to hear this weekend.

"All we want for Christmas......"

Our number one wish for Christmas is a new liver for Ron. We know it's out there somewhere........

Ron had his monthly visit with the liver transplant team:

• Organ donation has been down - so fewer livers have been transplanted over the past three months.
• Ron is at the very TOP of the list.
• They increased his blood pressure medicine (his blood pressure has been creeping up over the last two months).
• They cut his lactulose due to stomach cramping; and suggested he take his anti-nausea medicine daily (before he becomes nauseous).
• They did the normal blood tests and he has another appointment in 4 weeks.
• If by chance, he doesn't receive a new liver......in February his MELD score will be raised to 28.

The house is full of boxes - waiting to be emptied - waiting for the house to be turned into a Christmas winter wonderland.

I fell in a hole at the farm in October and injured my ankle - after 2 months and 2 different types of braces - the ankle hasn't healed.....4 days ago, I was put in a hard cast for three weeks. The cast comes off December 28th.

We want to wish you all a very Merry Christmas.

Thank you for your thoughts and continued prayers.

Moving on up!

Ron had a CT with contrast last week and met with his doctor today. The tumor hasn't gotten much bigger - and they won't be doing the chemoembolization (whew) right now. His MELD score has climbed from 22 to 25 (good thing). He was told it shouldn't be long now. Ron is showing signs of jaundice (yellowing of his eyes), and he was given new medication for his nausea. Ron is exhausted and spends a lot of time resting and sleeping.

We're still caught in 'the wheel' with the VA - they acknowledged Ron's Hep C and diabetes was caused by Agent Orange, and Ron has an appointment with another VA doctor next week - keep in mind we've been fighting with the VA and the bullshit paperwork for almost 3 years. It's very disheartening.

I try to keep Ron moving forward - whether he wants to or not - we'll make it!