Ron is depressed. He can admit it, but he really has no idea how depressed he is. I know it's normal after bypass surgery. I'm not sure it's just the heart surgery. When you've spent the last 4 years entangled in health issues, sometimes, I just want to say ENOUGH! I guess I'm depressed as well. Coming home everyday to someone who spends the day planted on the sofa in the same clothes you saw him in yesterday.........well, is depressing. I do everything for him, and he can't seem to do much of anything for himself.
Bad with the good - or good with the bad - it's all a toss up.
Sunday, December 9, 2012
Monday, November 19, 2012
Home again after triple bypass surgery
Modern medicine truly is a marvel - of course - a willing body.....allows the magic to happen.
Ron spent very little time in the ICU - overnight basically. The bypass surgery/ICU was Thursday, Friday he was moved to a 'step-down' room, Saturday all of his IVs were removed, and he came home Sunday. Today he's at home piddling around - made his own breakfast - pain meds = tylenol. It's amazing.
After his liver transplant in 2011 - the bypass surgery - has been a piece of cake. I think he's bummed about not being able to drive for 1 month. Thank goodness we have help - our daughter, Libby, is home on maternity leave until January - so she'll take him to the hospital for appointments and blood work.
During this ordeal - his liver has been perfect - no complications!
We are looking forward to Thanksgiving - all our children and their spouses - and our 6 grandchildren will be here to celebrate. Much to be thankful for!
Ron spent very little time in the ICU - overnight basically. The bypass surgery/ICU was Thursday, Friday he was moved to a 'step-down' room, Saturday all of his IVs were removed, and he came home Sunday. Today he's at home piddling around - made his own breakfast - pain meds = tylenol. It's amazing.
After his liver transplant in 2011 - the bypass surgery - has been a piece of cake. I think he's bummed about not being able to drive for 1 month. Thank goodness we have help - our daughter, Libby, is home on maternity leave until January - so she'll take him to the hospital for appointments and blood work.
During this ordeal - his liver has been perfect - no complications!
We are looking forward to Thanksgiving - all our children and their spouses - and our 6 grandchildren will be here to celebrate. Much to be thankful for!
Thursday, November 15, 2012
The Heart of the matter!
It's been an eventful month - Ron has been unsteady - falling - with a bit of 'dementia' in the evenings. The liver team has been following him closely......but we now know - after a 'wake-up' call from his old heart - we were barking up the wrong tree.
Tuesday, November 13th
10:00am - a call from Ron - he was having chest pains - I told him to call 911 - and I 'raced' home. I called and alerted the kids - Brittany loaded the kids and headed to our house.
Paramedics were in place when I arrived home - Ron was having chest pain with pain and tingling down his left arm.
He was transported to 'our' hospital, Piedmont (Atlanta) - the same hospital where he received his liver transplant in February 2011.
After a couple of nitroglycerin tabs - the chest pain disappeared - he was evaluated by the cardiologist (Dr. Taylor).........it was decided he would be observed overnight - stress test ordered for Wednesday (with a back-up plan for a heart catherization, if needed on Thursday).
Tuesday evening he had another cardiac episode at 10:00pm. The plan changed - nix the stress test and straight to cath lab Wednesday morning.
Wednesday, November 14th
The heart cath presented with 3 blockages - in the front top left main artery (90%), bottom front left main artery (70%) and a smaller one on the right side.
Because Ron's kidneys are a bit sluggish - it was decided he would be hydrated overnight to flush out the dye given during the heart catherization - bypass surgery scheduled for first thing Thursday morning.
With a nitroglycerin IV drip - he had an uneventful Wednesday night.
Thursday, November 15th - Heart Surgery Day!
7:30am - Taken to operating room
9:45am - Vein harvesting (yuck)
10:12am - Chest incision
10:45am - Placed on heart/lung bypass machine
12:00pm - Surgery over - triple bypass - heart is good - watching the kidneys
2:00pm - Visited Ron in ICU - he looks good - looks better than after liver transplant - he opened his eyes a couple of times - nodded yes to a question from the nurse - breathing tube in place - Ron is calm. If all goes well - the breathing tube should be removed in 4-6 hours.
I have to thank everyone (family and friends) for all their support - we've got a long road ahead - but with all the support - we're going to make it.
More updates soon.
Tuesday, November 13th
10:00am - a call from Ron - he was having chest pains - I told him to call 911 - and I 'raced' home. I called and alerted the kids - Brittany loaded the kids and headed to our house.
Paramedics were in place when I arrived home - Ron was having chest pain with pain and tingling down his left arm.
He was transported to 'our' hospital, Piedmont (Atlanta) - the same hospital where he received his liver transplant in February 2011.
After a couple of nitroglycerin tabs - the chest pain disappeared - he was evaluated by the cardiologist (Dr. Taylor).........it was decided he would be observed overnight - stress test ordered for Wednesday (with a back-up plan for a heart catherization, if needed on Thursday).
Tuesday evening he had another cardiac episode at 10:00pm. The plan changed - nix the stress test and straight to cath lab Wednesday morning.
Wednesday, November 14th
The heart cath presented with 3 blockages - in the front top left main artery (90%), bottom front left main artery (70%) and a smaller one on the right side.
Because Ron's kidneys are a bit sluggish - it was decided he would be hydrated overnight to flush out the dye given during the heart catherization - bypass surgery scheduled for first thing Thursday morning.
With a nitroglycerin IV drip - he had an uneventful Wednesday night.
Thursday, November 15th - Heart Surgery Day!
7:30am - Taken to operating room
9:45am - Vein harvesting (yuck)
10:12am - Chest incision
10:45am - Placed on heart/lung bypass machine
12:00pm - Surgery over - triple bypass - heart is good - watching the kidneys
2:00pm - Visited Ron in ICU - he looks good - looks better than after liver transplant - he opened his eyes a couple of times - nodded yes to a question from the nurse - breathing tube in place - Ron is calm. If all goes well - the breathing tube should be removed in 4-6 hours.
I have to thank everyone (family and friends) for all their support - we've got a long road ahead - but with all the support - we're going to make it.
More updates soon.
Falling Down
THIS IS A POST I NEGLECTED TO PUBLISH
September 9, 2012:
Last week someone asked how Ron was doing, and I made the mistake of saying everything was going great..........
Mid week Ron began having problems with his balance, he became weak and began vomiting; at first I thought he had a bug. Thursday evening he was following me into the kitchen, he became dizzy, leaned over the kitchen island for just a few seconds, and fell to the floor - hitting his head on the cabinet on his way down.
I turned and saw Ron lying on the floor and all I could think of - was to get him flat on the floor (CPR) and over and over in my mind - questioning where was the phone. I feel like I'm good in a crisis (I've had some practice over the years). (He was okay).
October 2012
When Ron stands up, he feels so dizzy that he has to immediately sit down. One evening while we were working side by side in the kitchen - I looked over and he was laying on the floor......we were afraid he had broken his arm. (He was okay).
November 2012
In the early morning hours I heard a horrible clunk and thud; Ron had fallen in the bathroom, hitting his head on the toliet seat (busting the top of his nose - with a full nose bleed as well)....he hit his ribs on the way down.
I suggested physical therapy thinking, perhaps, the issue had to do with 'strenghtening his core' - that he had become weak after surgery and was unable to gather his strength.
He was evaluated by physical therapy - was told they can't help him (he passed all their tests) - so they suggest neurological testing.
September 9, 2012:
Last week someone asked how Ron was doing, and I made the mistake of saying everything was going great..........
Mid week Ron began having problems with his balance, he became weak and began vomiting; at first I thought he had a bug. Thursday evening he was following me into the kitchen, he became dizzy, leaned over the kitchen island for just a few seconds, and fell to the floor - hitting his head on the cabinet on his way down.
I turned and saw Ron lying on the floor and all I could think of - was to get him flat on the floor (CPR) and over and over in my mind - questioning where was the phone. I feel like I'm good in a crisis (I've had some practice over the years). (He was okay).
October 2012
When Ron stands up, he feels so dizzy that he has to immediately sit down. One evening while we were working side by side in the kitchen - I looked over and he was laying on the floor......we were afraid he had broken his arm. (He was okay).
November 2012
In the early morning hours I heard a horrible clunk and thud; Ron had fallen in the bathroom, hitting his head on the toliet seat (busting the top of his nose - with a full nose bleed as well)....he hit his ribs on the way down.
I suggested physical therapy thinking, perhaps, the issue had to do with 'strenghtening his core' - that he had become weak after surgery and was unable to gather his strength.
He was evaluated by physical therapy - was told they can't help him (he passed all their tests) - so they suggest neurological testing.
Thursday, August 30, 2012
More good news - and smoother sailing!
Ron met with his ENT today - to go over the results of the CAT scan of Ron's sinuses. Everyone has been concerned the Mucormycosis had set up residence in his sinuses on the way to his lungs.
Dr. Dockery gave Ron the great news - no Mucormycosis in his nasal passages.
He followed up by saying he has treated Mucormycosis - and said - that if Ron had Mucormycosis - he'd be seing Ron in the hospital - not in his office. Mucormycosis eats tissue and ravages the body.
So now we're wondering - what's going on in Ron's lungs? Mucormycosis grew from a culture taken from Ron's lungs in June - Ron is being treated for the disease - and thank goodness not showing any symptoms of the disease; we'll find out - in approximately 5 months with another CAT scan of his chest.
Ron is feeling great - better than he has in months.........so we're sailing smoother seas and heading for open water!
Dr. Dockery gave Ron the great news - no Mucormycosis in his nasal passages.
He followed up by saying he has treated Mucormycosis - and said - that if Ron had Mucormycosis - he'd be seing Ron in the hospital - not in his office. Mucormycosis eats tissue and ravages the body.
So now we're wondering - what's going on in Ron's lungs? Mucormycosis grew from a culture taken from Ron's lungs in June - Ron is being treated for the disease - and thank goodness not showing any symptoms of the disease; we'll find out - in approximately 5 months with another CAT scan of his chest.
Ron is feeling great - better than he has in months.........so we're sailing smoother seas and heading for open water!
Friday, August 17, 2012
TGIF
It's a good Friday. Ron hasn't had any hallucinations today - hopefully he'll make it through the night without the 'little men' staring at him through the windows!
Tuesday, August 14, 2012
A CHANGE IN MEDS
Last night was rough (drug combo of Voriconazole and Prograf), Ron's hallucinations included: someone parked a tractor trailer on our street which it was filled with men in white clothes, the men came up the driveway and stood around our cars - got in Ron's car. They stood at the windows and stared at him all night, he saw the door knob jiggling and there were bunnies on the sofa. Someone scratched their initials on the refrigerator door. He paced the floor all night.
Today he had a conversation with our daughter-in-law and her friend - in our livingroom; there was no one here. To convince him, I told him to look out the window to see if Brittany's car was there - it wasn't. A snake was sitting on our china cabinet - with a large mouth and big eyes.
NOW THE GOOD NEWS
We just received a call from Beth (post transplant coordinator); she spent the majority of the day getting doctors/pharmacists together - and they have a new plan. YAY!
Ron is to stop taking Voriconazole; tomorrow he'll begin a new drug, Posaconazole, and it doesn't cause hallucinations!!!!!!! Posaconazole is the second choice, and the last choice before IV anti-fungal drugs.
It may take several days for the hallucinations to go away.............but they are going away.
I don't know what we would do without our Beth!
Today he had a conversation with our daughter-in-law and her friend - in our livingroom; there was no one here. To convince him, I told him to look out the window to see if Brittany's car was there - it wasn't. A snake was sitting on our china cabinet - with a large mouth and big eyes.
NOW THE GOOD NEWS
We just received a call from Beth (post transplant coordinator); she spent the majority of the day getting doctors/pharmacists together - and they have a new plan. YAY!
Ron is to stop taking Voriconazole; tomorrow he'll begin a new drug, Posaconazole, and it doesn't cause hallucinations!!!!!!! Posaconazole is the second choice, and the last choice before IV anti-fungal drugs.
It may take several days for the hallucinations to go away.............but they are going away.
I don't know what we would do without our Beth!
Monday, August 13, 2012
Mucor - A Nasty Little Booger!
A new adventure! MUCORMYSOSIS (a.k.a Mucor)
Mucormycosis (also called zygomycosis) is a rare infection caused by organisms that belong to a group of fungi called Mucoromycotina in the order Mucorales. At one time these fungi were called Zygomycota, but this scientific name has recently been changed. These fungi are typically found in the soil and in association with decaying organic matter, such as leaves, compost piles, or rotten wood.
This is a VERY rare disease - you and I, with healthy immune systems fight off this organism (fungus) with no problem; but someone like Ron who has a weakened immune system (due to the anti-rejection drugs he must take to keep his liver) can be infected with it. Without treatment, this is a deadly organism.
This all goes back to the cardic visits of May and June (2012); with fluid in his lungs and around his heart; his medications were changed and he was seen by a Pulmonologist, who did a lung biospy.
Ron's anti-rejection drug was changed from Rapammune (causes fluid build-up) back to Prograf (the original anti-rejection drug he took in the hospital right after surgery - this drug caused hallucinations)
In July we were told the lung biospy had grown Mucor. The liver team has never treated anyone with this infection - so there are many doctors involved in Ron's treatment; (liver, lung, heart, ENT, and an infectious disease doctor) watching his progress.
There are very few treatments for this infection - their drug of choice (and the best) is Voriconazole (a.k.a. V drug): is a triazole antifungal medication that is generally used to treat serious, invasive fungal infections. These are generally seen in patients who are immunocompromised, and include invasive candidiasis, invasive aspergillosis, and certain emerging fungal infections.
Ron began taking the V drug, Thursday, August 9th.
Friday, August 10th, Ron began having hallucinations: spots on people, objects moving - while sleeping very 'physical' hallucinations: he became lost in the bedroom and couldn't find his way to the door, threw a bedside table over (trying to steer his car - because he was crashing), a cat on the floor at the foot of our bed (white plastic bag), a little girl sitting with the cat............he taps me awake just to say, "I'm sorry for waking you up." He has 'telephone' conversations with people who aren't there. During the day, he sits quietly and rarely speaks. The drug works on the central nervous system.
Today he went back to the liver clinic for blood levels. This is their explanation: The V drug increases (10 times) the affect of Prograf (anti-rejection drug) - the high levels of Prograf is what is causing the hallucinations, so they have reduced his Prograf and told him he must continue on the V drug. The liver doctor again, explained how deadly this disease is.......this is not a choice for us (to go off the drug). Ron will be on the V drug for 6-12 months.
Ron really isn't himself - today is our 20th wedding anniversary and he didn't remember.
Mucormycosis (also called zygomycosis) is a rare infection caused by organisms that belong to a group of fungi called Mucoromycotina in the order Mucorales. At one time these fungi were called Zygomycota, but this scientific name has recently been changed. These fungi are typically found in the soil and in association with decaying organic matter, such as leaves, compost piles, or rotten wood.
This is a VERY rare disease - you and I, with healthy immune systems fight off this organism (fungus) with no problem; but someone like Ron who has a weakened immune system (due to the anti-rejection drugs he must take to keep his liver) can be infected with it. Without treatment, this is a deadly organism.
This all goes back to the cardic visits of May and June (2012); with fluid in his lungs and around his heart; his medications were changed and he was seen by a Pulmonologist, who did a lung biospy.
Ron's anti-rejection drug was changed from Rapammune (causes fluid build-up) back to Prograf (the original anti-rejection drug he took in the hospital right after surgery - this drug caused hallucinations)
In July we were told the lung biospy had grown Mucor. The liver team has never treated anyone with this infection - so there are many doctors involved in Ron's treatment; (liver, lung, heart, ENT, and an infectious disease doctor) watching his progress.
There are very few treatments for this infection - their drug of choice (and the best) is Voriconazole (a.k.a. V drug): is a triazole antifungal medication that is generally used to treat serious, invasive fungal infections. These are generally seen in patients who are immunocompromised, and include invasive candidiasis, invasive aspergillosis, and certain emerging fungal infections.
Ron began taking the V drug, Thursday, August 9th.
Friday, August 10th, Ron began having hallucinations: spots on people, objects moving - while sleeping very 'physical' hallucinations: he became lost in the bedroom and couldn't find his way to the door, threw a bedside table over (trying to steer his car - because he was crashing), a cat on the floor at the foot of our bed (white plastic bag), a little girl sitting with the cat............he taps me awake just to say, "I'm sorry for waking you up." He has 'telephone' conversations with people who aren't there. During the day, he sits quietly and rarely speaks. The drug works on the central nervous system.
Today he went back to the liver clinic for blood levels. This is their explanation: The V drug increases (10 times) the affect of Prograf (anti-rejection drug) - the high levels of Prograf is what is causing the hallucinations, so they have reduced his Prograf and told him he must continue on the V drug. The liver doctor again, explained how deadly this disease is.......this is not a choice for us (to go off the drug). Ron will be on the V drug for 6-12 months.
Ron really isn't himself - today is our 20th wedding anniversary and he didn't remember.
Saturday, May 26, 2012
Beginning a New Adventure - Heart Failure
Let me try and put the pieces of information together.
Before Ron's liver transplant, he underwent several tests, one of which was a 'once-over' of his heart.
He was told he had some calcification (heart) but nothing more than was expected for someone his age. We were told he should have his heart checked out once he received his liver and after recovery.
After Ron's liver transplant he began experiencing swelling in his left leg; we were told it was a side effect of the anti-rejection drug, Rappamune.
Ron began having difficulty breathing when walking over a short distance.
Several weeks ago Ron's right leg began to swell.
He has difficulty sleeping - he takes a couple of breaths and wakes himself up trying to catch his breath. He's having vivid hallucinations during his half wake/half sleep periods; so much so, I can't sleep in the same bed with him. He has conversations with people that aren't here - he told me this morning - that the room was filled with people last night.
His recent stress test showed heart failure (we don't know what class/stage) - he has many more tests to go through.
His kidney function is elevated.
I will update as we have more information.
Before Ron's liver transplant, he underwent several tests, one of which was a 'once-over' of his heart.
He was told he had some calcification (heart) but nothing more than was expected for someone his age. We were told he should have his heart checked out once he received his liver and after recovery.
After Ron's liver transplant he began experiencing swelling in his left leg; we were told it was a side effect of the anti-rejection drug, Rappamune.
Ron began having difficulty breathing when walking over a short distance.
Several weeks ago Ron's right leg began to swell.
He has difficulty sleeping - he takes a couple of breaths and wakes himself up trying to catch his breath. He's having vivid hallucinations during his half wake/half sleep periods; so much so, I can't sleep in the same bed with him. He has conversations with people that aren't here - he told me this morning - that the room was filled with people last night.
His recent stress test showed heart failure (we don't know what class/stage) - he has many more tests to go through.
His kidney function is elevated.
I will update as we have more information.
Friday, February 3, 2012
Today is Ron's 1st Birthday - A Letter to the Donor's Family
Today is Ron's 1st Birthday. A year ago today we were in ICU.
Today is Ron's 1st Birthday. We're thankful to the donor's family for their unselfish gift.
Today is Ron's 1st Birthday. He has so much to be thankful for.
Today is Ron's 1st Birthday. We love him.
This is the letter to the donor's family. Ron will deliver this letter to the transplant team at his 1 year appointment. The letter will be delivered to the family.
February 3, 2012
We’ve wanted to write this letter for a very long time…. we don’t have the perfect words. To say thank you will never be enough – but it’s a good start – thank you.
Our entire family are organ donors, and you of all people know why that’s so important – to share the gift of life with as many people as can be saved. That’s what you did for us – your decision saved my husband.
My husband and I have been married for 19 years; he is a loving man, a Vietnam Veteran, and we have 3 wonderful children and 5 grandchildren.
Our journey has taken us down some dark roads, and we weren’t sure he would make it through his illness; your decision was the gift we will never forget.
There isn’t a day that goes by that we don’t think of your loved one, and we promise, we won’t waste one day of our lives together.
Although we’ve never met – we want you to know – you and your loved one will forever be in our hearts – and my husband will carry this precious gift proudly.
Always,
Ron and Pam
Today is Ron's 1st Birthday. We're thankful to the donor's family for their unselfish gift.
Today is Ron's 1st Birthday. He has so much to be thankful for.
Today is Ron's 1st Birthday. We love him.
This is the letter to the donor's family. Ron will deliver this letter to the transplant team at his 1 year appointment. The letter will be delivered to the family.
February 3, 2012
We’ve wanted to write this letter for a very long time…. we don’t have the perfect words. To say thank you will never be enough – but it’s a good start – thank you.
Our entire family are organ donors, and you of all people know why that’s so important – to share the gift of life with as many people as can be saved. That’s what you did for us – your decision saved my husband.
My husband and I have been married for 19 years; he is a loving man, a Vietnam Veteran, and we have 3 wonderful children and 5 grandchildren.
Our journey has taken us down some dark roads, and we weren’t sure he would make it through his illness; your decision was the gift we will never forget.
There isn’t a day that goes by that we don’t think of your loved one, and we promise, we won’t waste one day of our lives together.
Although we’ve never met – we want you to know – you and your loved one will forever be in our hearts – and my husband will carry this precious gift proudly.
Always,
Ron and Pam
Thursday, January 26, 2012
Sunday, January 22, 2012
Savannah
Our second beautiful granddaughter, Savannah Leigh Falanga was born last night @ 11:20pm. She is 8lbs 8oz and 20 1/2" long. Of course we can't help but say how gorgeous she is. We have 5 wonderful grandchildren: Caden (almost 4), Oliver (3) Brooklyn (2), Braylen (14 months) and Savannah.
Congratulations to our son, Michael and his wife, Brittney on the birth of their new little girl.
Congratulations to our son, Michael and his wife, Brittney on the birth of their new little girl.
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