We're not sure what's going on with Ron. It began early Sunday morning with a fever of 102.7 - sick to his stomach - couldn't keep anything down. We called his transplant coordinator, who didn't seem concerned, I'm guessing because Ron's blood work looked good on Friday.
Sunday morning after a couple of doses of Tylenol his temp was down to 99.0. Ron slept all day - wouldn't eat a thing.
Monday he still was running a low grade fever and sick to his stomach. Monday evening he began to feel a little better and had a bite to eat.
This morning he had breakfast and went to work - sometime in the afternoon he began feeling weak, also complaining of a strange electrical surge going on in his eyes. By the time he arrived home this afternoon he was tired and weak AND still running a fever 100.5. Ron was able to eat dinner.
He's calling the transplant clinic tomorrow to see if he can get in to see them Thursday when he goes in for his weekly blood work.
I know there are signs of organ rejection - I feel like he either has food poisoning (wings Saturday night) or he caught a bug.
Tuesday, May 31, 2011
Friday, May 20, 2011
Routine and Tybee Island (our home away from home)
It's nice, the routine of the day. For many years I watched Ron's life circle become smaller and smaller - less time and energy for the things he liked to do - more time spent at doctor appointments, days in bed from pure exhaustion, and an occasional trip to the ER.
Now our days are filled with glorious mundane happenings: work, doing the dishes together, watching movies, and visiting with our grandchildren. Life couldn't be simplier and it's perfect.
This summer we'll spend 8 days on Tybee Island. We rent a large cottage just a block from the beach and invite all the kids to come; last year our middle child, Michael, got married on the beach and the whole family was there. This year will be a quieter house.....and we hope to continue our annual 'Summer on Tybee'. Ron and I were talking about our trip the other evening - hoping one day the beach house will be packed with all the kids and grandchildren - but this year a quiet time of rejoicing - sleeping late, great food, walks on the beach, and to end each day with our comfy old quilt sitting quietly together at 'the point' watching the sunset.......all as it should be.
Now our days are filled with glorious mundane happenings: work, doing the dishes together, watching movies, and visiting with our grandchildren. Life couldn't be simplier and it's perfect.
This summer we'll spend 8 days on Tybee Island. We rent a large cottage just a block from the beach and invite all the kids to come; last year our middle child, Michael, got married on the beach and the whole family was there. This year will be a quieter house.....and we hope to continue our annual 'Summer on Tybee'. Ron and I were talking about our trip the other evening - hoping one day the beach house will be packed with all the kids and grandchildren - but this year a quiet time of rejoicing - sleeping late, great food, walks on the beach, and to end each day with our comfy old quilt sitting quietly together at 'the point' watching the sunset.......all as it should be.
Sunday, May 15, 2011
3 Months
Ron is stronger day by day - it's been a little over 3 months; I remember the doctors telling us at 3 months we would have our life back - at the time, I didn't see that happening. After the surgery with medication complications - I wasn't sure if he'd ever be himself again....what a difference 3 months makes.
Here are a few recent photos of Ron. He looks as good as he feels.
Thursday, May 12, 2011
Edema and Laryngitis
Well after two ultrasounds, one by the transplant team and the other by his Primary Care Physician (PCP) - Ron does not have a blood clot in his left leg. The swelling has continued for numerous weeks. They did prescribe support hose (I know, it's creates a funny picture in my head).
The transplant team doesn't believe it has anything to do with his transplant; but I have read one of the odd side effects of his anti-rejection drugs is swelling (edema). Since Ron had neurological issues present when placed on both Prograf and Cyclosporine - Rappamune is his only choice. His blood levels are great and we certainly don't want to risk a rejection.
The transplant coordinator, Caroline, suggested Ron may have venous insufficiency; laymens explanation - blood goes through the valves to his foot - the blood gets stuck - and its unable to get back to the heart (the support hose will help with circulation). Of course, I'm worried about a blood clot forming - but was told its not likely to happen. I'm not sure that's enough reassurance for me.
Yesterday morning Ron awoke with 'no voice'; he felt fine, just couldn't talk (raspy). This morning Ron told me he doesn't feel well - so he'll call for an appointment with his PCP. We certainly don't want a simple laryngitis to turn into a visit to the hospital. The anti-rejection drugs suppress the immune system.
If Ron does need antibiotics - the prescription must be cleared by the transplant team.
It's been an amazing journey - we are blessed.
The transplant team doesn't believe it has anything to do with his transplant; but I have read one of the odd side effects of his anti-rejection drugs is swelling (edema). Since Ron had neurological issues present when placed on both Prograf and Cyclosporine - Rappamune is his only choice. His blood levels are great and we certainly don't want to risk a rejection.
The transplant coordinator, Caroline, suggested Ron may have venous insufficiency; laymens explanation - blood goes through the valves to his foot - the blood gets stuck - and its unable to get back to the heart (the support hose will help with circulation). Of course, I'm worried about a blood clot forming - but was told its not likely to happen. I'm not sure that's enough reassurance for me.
Yesterday morning Ron awoke with 'no voice'; he felt fine, just couldn't talk (raspy). This morning Ron told me he doesn't feel well - so he'll call for an appointment with his PCP. We certainly don't want a simple laryngitis to turn into a visit to the hospital. The anti-rejection drugs suppress the immune system.
If Ron does need antibiotics - the prescription must be cleared by the transplant team.
It's been an amazing journey - we are blessed.
Tuesday, May 3, 2011
Swollen foot, albumin levels and garage piddling
Ron's left foot is still swollen. He visited his PCP today; and the doctor would like to do another ultrasound. The ultrasound is scheduled for Friday.
In the meantime, his transplant team has taken him off Bactrim, Ron's albumin levels are off just a tad - and they will treat him with a nasal antibiotic - I'm not really clear what's going on - I'm back at work and wasn't with Ron at his clinic appointment last week. He has an appointment for the nasal antibiotic treatment tomorrow......hopefully he'll have more information.
Ron is feeling well - this past weekend he thought about blowing the (fall) leaves out of our yard - but realized the blower was too heavy (good call). He piddled in the garage straightening up his disorganized-organized garage stuff mess.....oh, and lysol wiped the door knobs (yes, he's a germ-a-phob).......but like he tells me....."I'll do anything not to have to go back to the hospital." Amen to that.
In the meantime, his transplant team has taken him off Bactrim, Ron's albumin levels are off just a tad - and they will treat him with a nasal antibiotic - I'm not really clear what's going on - I'm back at work and wasn't with Ron at his clinic appointment last week. He has an appointment for the nasal antibiotic treatment tomorrow......hopefully he'll have more information.
Ron is feeling well - this past weekend he thought about blowing the (fall) leaves out of our yard - but realized the blower was too heavy (good call). He piddled in the garage straightening up his disorganized-organized garage stuff mess.....oh, and lysol wiped the door knobs (yes, he's a germ-a-phob).......but like he tells me....."I'll do anything not to have to go back to the hospital." Amen to that.
Thursday, April 28, 2011
Clinic Visit
Today was Ron's clinic visit - he has labs done once a week - but it's been a month since he's seen the doctor(s). They were astounded that he's driving and back at work. I think the word of the day was GREAT! Here's the breakdown of the visit:
Prescriptions:
Bactrim (antibiotic) - this is his last month; once he takes his last pill, that's it.
Valcyte (antibiotic) - one more refill and he's done.
Problems:
Swelling in his left foot and ankle - the doctor is not sure what the problem is - he suggested Ron see his primary care physician and perhaps be referred to a vascular specialist.....in the meantime, the doctor said when Ron's at work with his feet under his desk - he should wiggle them about!
Bloodwork:
The word GREAT was used again; the doctor is very happy with Ron's bloodwork. There is a TINY issue though - his albumin is a little high - it could be the Bactrim - the doctor said Bactrim can cause the swelling - since Ron is on his last dose of Bactrim - we should be able to see that in his future bloodwork. Ron will continue to visit the lab for blood weekly. His next clinic appointment is in 3 MONTHS - can you believe it?!!
Weight:
They are thrilled with Ron's weight - at one time he was down to 135, and today he was 154.....YAY for weight gain (I never thought I'd be saying that).
Suggestions:
The doctor would like Ron to see a cardiologist; for those who have read the blog from the beginning, you'll remember when Ron was going through the pre-transplant testing we weren't sure he would pass the cardio test..........they did see some calcification - and in the end - it was chalked up as.......Ron is 63 and it's probably his age.
Since they did see the calcification and Ron's newest oddity - feeling his pulse in one ear - Ron will be seeing a cardiologist - just to see how he's doing.
When people ask how Ron is doing (and they do, several times a day) - I say he's GREAT!......and he is.
Right now Jerry is going through liver transplant surgery, probably in the recovery room, and Chandra is waiting to see him........Chandra take heart in our journey - although a bumpy ride - it's all worth it!
Prescriptions:
Bactrim (antibiotic) - this is his last month; once he takes his last pill, that's it.
Valcyte (antibiotic) - one more refill and he's done.
Problems:
Swelling in his left foot and ankle - the doctor is not sure what the problem is - he suggested Ron see his primary care physician and perhaps be referred to a vascular specialist.....in the meantime, the doctor said when Ron's at work with his feet under his desk - he should wiggle them about!
Bloodwork:
The word GREAT was used again; the doctor is very happy with Ron's bloodwork. There is a TINY issue though - his albumin is a little high - it could be the Bactrim - the doctor said Bactrim can cause the swelling - since Ron is on his last dose of Bactrim - we should be able to see that in his future bloodwork. Ron will continue to visit the lab for blood weekly. His next clinic appointment is in 3 MONTHS - can you believe it?!!
Weight:
They are thrilled with Ron's weight - at one time he was down to 135, and today he was 154.....YAY for weight gain (I never thought I'd be saying that).
Suggestions:
The doctor would like Ron to see a cardiologist; for those who have read the blog from the beginning, you'll remember when Ron was going through the pre-transplant testing we weren't sure he would pass the cardio test..........they did see some calcification - and in the end - it was chalked up as.......Ron is 63 and it's probably his age.
Since they did see the calcification and Ron's newest oddity - feeling his pulse in one ear - Ron will be seeing a cardiologist - just to see how he's doing.
When people ask how Ron is doing (and they do, several times a day) - I say he's GREAT!......and he is.
Right now Jerry is going through liver transplant surgery, probably in the recovery room, and Chandra is waiting to see him........Chandra take heart in our journey - although a bumpy ride - it's all worth it!
Jerry and Chandra
It feels like Christmas morning - Jerry and Chandra received their 'call' last night. I met Chandra through our blog. Jerry needs a liver and last night they received the call - Jerry is in the beginning stages of his surgery.
It's a scary time - and I think what got me through that time (support and prayers); I felt a sense of knowing that Ron would come out of the surgery OK. The waiting during his surgery, with family and friends there for support, was a great distraction. I knew when I turned Ron over to the surgeon and his team, they 'had' him - and they did.
So prayers are going out for Chandra and Jerry!
Check out Jerry's Journey
http://jerrysjourney.blogspot.com/
It's a scary time - and I think what got me through that time (support and prayers); I felt a sense of knowing that Ron would come out of the surgery OK. The waiting during his surgery, with family and friends there for support, was a great distraction. I knew when I turned Ron over to the surgeon and his team, they 'had' him - and they did.
So prayers are going out for Chandra and Jerry!
Check out Jerry's Journey
http://jerrysjourney.blogspot.com/
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