Ron's liver has been giving his stomach the 'what for'....all week, and with the help of my dearest friends (lately) Google - I was able to find someone (Sherlene, nutrition person at Kroger in Tyrone) who told me just what to do to (hopefully) quiet the tiger in Ron's tank.
This is his new menu (at least for the next couple of days)
NO DAIRY
Brown rice protein powder
Bananas
Unsweetened vanilla almond milk
Baby food (PEARS).....with a side order of Probiotics and Milk Thistle
He started the new regimen this afternoon and feels better already.
If Ron feels well enough tomorrow we're going to the movies!
Saturday, January 29, 2011
Thursday, January 27, 2011
"Hello, it's the VA!"
We've been fighting with the Veterans Administration for almost three years. We've mailed, faxed, called and called and called - and many times refaxed.
A couple of weeks ago we got Senator Isakson involved - and today we received a package from the VA. To say the least, we're very disappointed and we plan to appeal with legal support. Here are their findings.
Hep C (due to Agent Orange) = CLAIM DENIED
Liver Cancer (due to Agent Orange) = CLAIM DENIED
Diabetes = 20% disability
For those who don't know - Agent Orange was used during the Vietnam War, between 1962 and 1971, the United States military sprayed 20,000,000 US gallons (80,000,000 L) of chemical herbicides and defoliants in Vietnam.
AGENT ORANGE IS POISON!!!
A couple of weeks ago we got Senator Isakson involved - and today we received a package from the VA. To say the least, we're very disappointed and we plan to appeal with legal support. Here are their findings.
Hep C (due to Agent Orange) = CLAIM DENIED
Liver Cancer (due to Agent Orange) = CLAIM DENIED
Diabetes = 20% disability
For those who don't know - Agent Orange was used during the Vietnam War, between 1962 and 1971, the United States military sprayed 20,000,000 US gallons (80,000,000 L) of chemical herbicides and defoliants in Vietnam.
AGENT ORANGE IS POISON!!!
Wednesday, January 26, 2011
Smooth as a baby's behind.........
When we visited the doctor Monday, I had lots of questions, and although at the time, I felt like they were kinda' answered (not really, but I was trying to be positive), as Tuesday night rolled into Wednesday morning, I realized I needed some clarification.
I'm pretty sure transplant doctors see things in black and white - and you know what? I'm glad! Imagine the driven and talented spirit required to be a transplant doctor. The average liver transplant can take up to 7-9 hours; I mean, really, can you imagine the skill and patience required.
I remember the first time I met Dr. S and shook his hand; small delicate hands and fingers, and skin as smooth as a baby's behind........plus he's not the tallest doctor I've ever met - just the right height for leaning over an operating table for hours at a time.
I like him just fine, just the way he is.
I digress.
So I went right to the horse's mouth and called Cindy, our transplant coordinator. Cindy's job is to keep the patients up to date - which includes...... lots of hand holding.
I told Cindy I really couldn't pin Dr. S down - at Ron's last doctors appointment (Monday); she said he's not easy to pin down.........this is how it went:
Me: We really want to know Ron's prognosis. What if he doesn't get a liver soon. Is Ron going to die before he receives a liver.
Cindy: Pam, let me talk you off the edge!
You know I'll be frank with you.
Ron's life expectancy (heart stood still) is until he receives his liver.
Pam, this is a horrible disease, the patients become very sick; we're watching his labs and if he didn't have the liver cancer exception, his MELD score would only be 8 (which is so low, if Ron didn't have cancer, he wouldn't be on the transplant list at all - I can't imagine - because of his cancer his MELD score is 25 - he's sick, thin, sometimes confused - all due to the liver disease). I know we keep telling you 'any minute' now....but this is the first time EVER, that we've had a patient go from a MELD score of 22 to 25 without receiving a transplant.
Cindy continues: Ron is number 1 at Piedmont, but we share our list with Emory (I checked Emory today - no patients waiting for a liver with a MELD of 25+), but if either of the hospitals receive a Status 1 Liver Patient (someone who is hospitalized with less than 24 hours to live) and the liver is a match, then Ron is bumped back (which of course, we're known all along - that's the way it should be). Plus we're waiting for a blood type A liver (match), which lately, the blood type has been O.
We talked about his latest malady (fluid retention, restricted diet, stomach issues....you know, pretty routine health stuff for us right now).
Cindy to the rescue!
Cindy's final words - a common theme at our house, "Hang in there, it's coming!"
I called Ron with the news, I think he feels some weight off his shoulders; I know I feel 'cautiously' relieved.
Today Sheri (Palmetto High School) our 'go to girl' sent out an email to my classmates - asking for words of support - and there's been a flood of well wishers - I tell you what - we really need it now.
Thank you for your continued prayers and support.....thank you for holding us up on days when we feel like we're drowning - as Sheri says, for being our virtual 'floaties'.
I'm pretty sure transplant doctors see things in black and white - and you know what? I'm glad! Imagine the driven and talented spirit required to be a transplant doctor. The average liver transplant can take up to 7-9 hours; I mean, really, can you imagine the skill and patience required.
I remember the first time I met Dr. S and shook his hand; small delicate hands and fingers, and skin as smooth as a baby's behind........plus he's not the tallest doctor I've ever met - just the right height for leaning over an operating table for hours at a time.
I like him just fine, just the way he is.
I digress.
So I went right to the horse's mouth and called Cindy, our transplant coordinator. Cindy's job is to keep the patients up to date - which includes...... lots of hand holding.
I told Cindy I really couldn't pin Dr. S down - at Ron's last doctors appointment (Monday); she said he's not easy to pin down.........this is how it went:
Me: We really want to know Ron's prognosis. What if he doesn't get a liver soon. Is Ron going to die before he receives a liver.
Cindy: Pam, let me talk you off the edge!
You know I'll be frank with you.
Ron's life expectancy (heart stood still) is until he receives his liver.
Pam, this is a horrible disease, the patients become very sick; we're watching his labs and if he didn't have the liver cancer exception, his MELD score would only be 8 (which is so low, if Ron didn't have cancer, he wouldn't be on the transplant list at all - I can't imagine - because of his cancer his MELD score is 25 - he's sick, thin, sometimes confused - all due to the liver disease). I know we keep telling you 'any minute' now....but this is the first time EVER, that we've had a patient go from a MELD score of 22 to 25 without receiving a transplant.
Cindy continues: Ron is number 1 at Piedmont, but we share our list with Emory (I checked Emory today - no patients waiting for a liver with a MELD of 25+), but if either of the hospitals receive a Status 1 Liver Patient (someone who is hospitalized with less than 24 hours to live) and the liver is a match, then Ron is bumped back (which of course, we're known all along - that's the way it should be). Plus we're waiting for a blood type A liver (match), which lately, the blood type has been O.
We talked about his latest malady (fluid retention, restricted diet, stomach issues....you know, pretty routine health stuff for us right now).
Cindy to the rescue!
Cindy's final words - a common theme at our house, "Hang in there, it's coming!"
I called Ron with the news, I think he feels some weight off his shoulders; I know I feel 'cautiously' relieved.
Today Sheri (Palmetto High School) our 'go to girl' sent out an email to my classmates - asking for words of support - and there's been a flood of well wishers - I tell you what - we really need it now.
Thank you for your continued prayers and support.....thank you for holding us up on days when we feel like we're drowning - as Sheri says, for being our virtual 'floaties'.
Monday, January 24, 2011
Mellow Mushroom Pizza with a Side of Liver
Libby and I decided we'd go with Ron to see his transplant doctor today. I had a battery of questions for the doctor - I planned to pin him down and receive some definite answers. This is how it went.
Me: What is Ron's prognosis?
Dr.: He on the top of the list.
Me: Yes, I know, but what if he doesn't get a liver?
Dr.: Well, I don't have a crystal ball, but he's doing okay. His MELD score will go up to 29 (actually I think it's 28, but who am I to argue with a doctor) the score will go up in a few months (actually in February, but again, what do I know)
Me: Are there any support groups?
Dr.: Yes, we have some here, you must come (yes, they sure do - at 11:00am - I mean don't most spouses of liver patients work)
Me: What about driving? Ron was told last week that he shouldn't drive.
Dr.: With all the fluid in his belly it becomes difficult to drive, like when a woman is pregnant (I guess pregnant women don't drive)
The best thing about the appointment was Mellow Mushroom Pizza. I guess I'm doing better than yesterday - nothing was funny yesterday.
Ron and I talked it over and we're on the up-beat side again. Ron has an appointment Thursday for an MRI (on his way to a MELD score of 28 or 29). Another appointment next Thursday for blood work and results from MRI.
Like Ron told the nurse - "Maybe I'll have a liver by next week"......what a novel idea!
Thanks to everyone for getting me through yesterday - it was a very dark day!
Me: What is Ron's prognosis?
Dr.: He on the top of the list.
Me: Yes, I know, but what if he doesn't get a liver?
Dr.: Well, I don't have a crystal ball, but he's doing okay. His MELD score will go up to 29 (actually I think it's 28, but who am I to argue with a doctor) the score will go up in a few months (actually in February, but again, what do I know)
Me: Are there any support groups?
Dr.: Yes, we have some here, you must come (yes, they sure do - at 11:00am - I mean don't most spouses of liver patients work)
Me: What about driving? Ron was told last week that he shouldn't drive.
Dr.: With all the fluid in his belly it becomes difficult to drive, like when a woman is pregnant (I guess pregnant women don't drive)
The best thing about the appointment was Mellow Mushroom Pizza. I guess I'm doing better than yesterday - nothing was funny yesterday.
Ron and I talked it over and we're on the up-beat side again. Ron has an appointment Thursday for an MRI (on his way to a MELD score of 28 or 29). Another appointment next Thursday for blood work and results from MRI.
Like Ron told the nurse - "Maybe I'll have a liver by next week"......what a novel idea!
Thanks to everyone for getting me through yesterday - it was a very dark day!
Thursday, January 20, 2011
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.
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.
Thursday, January 13, 2011
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.
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.
"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.
Monday, January 10, 2011
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.
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.
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