Sometimes you just have to hang up on someone. I know, my daughter, Libby, accuses me of being the Hang Up Queen..........but today, it was definitely called for.
Ron's left foot is swollen - much more so than his right........now we thought the post-transplant nurse would tell him to go back on Lasix and that they'd see him on Thursday. Instead she said, the doctor stated it could be a blood clot...........then proceeded to tell us, someone would call us in the next couple of days to schedule an appointment for an ultrasound.
Bizarre! It's like telling a patient, "Hey, you might be having a heart attack; we'll get you scheduled to come in - in the next couple of days."
We went back and forth and she kept giving us vague answers - I think it was her delivery - she sounds more like someone's secretary instead of a nurse (I am not calling out secretaries - I used to be one). This nurse had no reassurance in her voice - she was unclear and just kinda' BTW.
Finally Ron couldn't take it anymore and I took the phone - she again mentioned something about his swollen leg - when I again told her - no, not his leg............his foot.
Then she did it - I was at the end of my rope...........she said, (and I quote), "Now, when you say foot?"........I snapped and CLICK.........I was done.
Monday, February 28, 2011
Sunday, February 27, 2011
Day by Day
Everyday Ron seems stronger and stronger - clear headed - building his energy.
Today he emptied the dishwasher - YAY! He is feeling better.
A little trouble with his blood sugar; running very low (22), dangerously low - he has an appointment with his endocrinologist Thursday.
Libby and Oliver spent the night - Oliver had some Papa time and Beau time.
Today he emptied the dishwasher - YAY! He is feeling better.
A little trouble with his blood sugar; running very low (22), dangerously low - he has an appointment with his endocrinologist Thursday.
Libby and Oliver spent the night - Oliver had some Papa time and Beau time.
Friday, February 25, 2011
He's Home!
Ron is home and we're so happy. He asked me today if I had put anything up on the blog or on Facebook about what's been going on with him.......funny, huh?!
He asked me to thank everyone - you all are so special to us! There aren't enough words to express our gratitude.
We'd like to have an open house sometime early summer - and invite everyone to come by for hugs, food and fun!
Ready to go home
Just a small piece of coconut pie
A welcome home from our little Oliver (spaghetti stained)
He asked me to thank everyone - you all are so special to us! There aren't enough words to express our gratitude.
We'd like to have an open house sometime early summer - and invite everyone to come by for hugs, food and fun!
Ready to go home
Just a small piece of coconut pie
A welcome home from our little Oliver (spaghetti stained)
Thursday, February 24, 2011
It's Benign!
The thoracic surgeon came by to deliver the following news:
The spot is BENIGN!
They would do a PET scan before Ron leaves the hospital, but the lung area is inflamed from the biopsy and it would 'light up' on the scan.
So we are to wait a month, come in for a PET scan, and make an appointment for a couple of days after.
If the spot goes away, great; if not, they will watch it and/or we'll talk about removing it.
He said he didn't want Ron to come home and for us to worry about the spot..........what a relief!
THANK YOU EVERYONE FOR YOUR SUPPORT AND PRAYERS!
I look forward to picking Ron up tomorrow.......and beginning our new life!
The spot is BENIGN!
They would do a PET scan before Ron leaves the hospital, but the lung area is inflamed from the biopsy and it would 'light up' on the scan.
So we are to wait a month, come in for a PET scan, and make an appointment for a couple of days after.
If the spot goes away, great; if not, they will watch it and/or we'll talk about removing it.
He said he didn't want Ron to come home and for us to worry about the spot..........what a relief!
THANK YOU EVERYONE FOR YOUR SUPPORT AND PRAYERS!
I look forward to picking Ron up tomorrow.......and beginning our new life!
Another day in paradise
New symptom: stomach pain and upset stomach.
Liver Team reports: liver looks great, they are sure the new pain isn't the bile duct but they are running tests to see if Ron has some type of 'super infection' of the bowel. He'll be staying another night waiting on test results...........hopefully the lung biopsy will come in tomorrow as well.
Ron will be discharged tomorrow - barring any other complications.
Liver Team reports: liver looks great, they are sure the new pain isn't the bile duct but they are running tests to see if Ron has some type of 'super infection' of the bowel. He'll be staying another night waiting on test results...........hopefully the lung biopsy will come in tomorrow as well.
Ron will be discharged tomorrow - barring any other complications.
Wednesday, February 23, 2011
Heading in the right direction
Transplant team came in this moring and reported:
CAT scan of brain - NEGATIVE
CAT scan of lungs - ONLY THE 1 LUMP (fabulous news)
Needle aspiration lung biopsy scheduled for 1:00pm
Results won't be back for two days
Ron is much clearer (minded) today - more like his normal self
If all goes well today, they will discharge him tomorrow and treat the lung issue outpatient.
Let's pray the lump is benign and we can begin our life again.
(We're still working on my anxiety medication to get the correct levels)
CAT scan of brain - NEGATIVE
CAT scan of lungs - ONLY THE 1 LUMP (fabulous news)
Needle aspiration lung biopsy scheduled for 1:00pm
Results won't be back for two days
Ron is much clearer (minded) today - more like his normal self
If all goes well today, they will discharge him tomorrow and treat the lung issue outpatient.
Let's pray the lump is benign and we can begin our life again.
(We're still working on my anxiety medication to get the correct levels)
Tuesday, February 22, 2011
Sometimes you have to believe him!
Libby called me earlier this evening - said she had spoken to Ron - well I had spoken to him not 10 minutes earlier - anyway - he told her he had to go - the nurse was there to pick him up to take him down for a CAT scan of his head.
Now you know - I've been going on and on about crazy things he's been seeing and hearing (today he told me he heard Trouble, our Jack Russell, running up and down the hospital hallway).........anyway, I called Ron and asked him what he was doing - he said the nurses were there to pick him up for the CAT scan of his heard....................so.........not believing him, I asked to speak to his nurse - listen, he was pretty upset with me.......but he put the nurse on the phone (who turned out to be a patient transporter ) - I asked who I was speaking to.....and she told me........and I asked if she was taking him down for a CAT scan of his head........she said YES......and I proceeded to tell her......well, I'm sorry, I had to ask someone, because he's been so delusional, I was sure what he was saying was in his head...........she laughed.
She put Ron back on the phone - they were in a hurry so he said he'd call me back........I guess the first thing I'll say, is ........I'm sorry..........but you know, I am trying to take care of him - so hopefully he'll forgive me.
My guess as to why they are sending him down for the test........because of the hallucinations - I still think it's due to his medication. The doctors told me it will take 3 days to clear his body and we're halfway there.
Now you know - I've been going on and on about crazy things he's been seeing and hearing (today he told me he heard Trouble, our Jack Russell, running up and down the hospital hallway).........anyway, I called Ron and asked him what he was doing - he said the nurses were there to pick him up for the CAT scan of his heard....................so.........not believing him, I asked to speak to his nurse - listen, he was pretty upset with me.......but he put the nurse on the phone (who turned out to be a patient transporter ) - I asked who I was speaking to.....and she told me........and I asked if she was taking him down for a CAT scan of his head........she said YES......and I proceeded to tell her......well, I'm sorry, I had to ask someone, because he's been so delusional, I was sure what he was saying was in his head...........she laughed.
She put Ron back on the phone - they were in a hurry so he said he'd call me back........I guess the first thing I'll say, is ........I'm sorry..........but you know, I am trying to take care of him - so hopefully he'll forgive me.
My guess as to why they are sending him down for the test........because of the hallucinations - I still think it's due to his medication. The doctors told me it will take 3 days to clear his body and we're halfway there.
A liter here and there
Ron had the thoracic parsenthesis and the drained over a liter of fluid (from his lung) - they haven't told me (officially) -but - I think what we were perceiving as panic attacks (when he laid down).........it was actually the fluid redistributing around the lung, and making him short of breath. He's been complaining of shortness of breath when laying down for a couple of weeks.
Then they performed a CAT scan (lungs) and hopefully we'll hear the results today.
Then they performed a CAT scan (lungs) and hopefully we'll hear the results today.
Brooke has a plan
I love a person who has a plan - today - that person is Brooke.
Waiting on a procedure (scheduled for 1:00pm) that will remove the fluid that accumulated in his right lung during his original stay after the transplant - not a big deal - and it would have resolved itself naturally - but in order for the team to get a good image of his lungs - that fluid needs to go.
Once the fluid is removed (today) - they will do a full CAT scan of his chest while he's there.
Tomorrow morning at 8:00am they will do a needle biopsy of the spot on his lung. We're hoping it's nothing, but if it is, as crazy as this sounds, we hope it's lung cancer and not liver cancer (liver cancer means the cancer could have spread from the liver to other areas of the body - visiting the lung too). Better to have lung cancer as the primary cancer - something they can treat.............but again, I'm getting ahead of myself.
They are reducing his Ativan for agitation/anxiety - because he's so out of it - they need to clear his body of as much medication as they possibly can. The Cyclosporine (which causes the crazy) will take another 2 days to clear - the Ativan is only prolonging the fuzziness he's feeling. It's still impossible to hold a conversation with him - he has absolutely no idea what's going on.
We have a plan - even if Ron doesn't know anything about it ............yet!
Here's a photo of Ron today..........and a picture of our view.
Waiting on a procedure (scheduled for 1:00pm) that will remove the fluid that accumulated in his right lung during his original stay after the transplant - not a big deal - and it would have resolved itself naturally - but in order for the team to get a good image of his lungs - that fluid needs to go.
Once the fluid is removed (today) - they will do a full CAT scan of his chest while he's there.
Tomorrow morning at 8:00am they will do a needle biopsy of the spot on his lung. We're hoping it's nothing, but if it is, as crazy as this sounds, we hope it's lung cancer and not liver cancer (liver cancer means the cancer could have spread from the liver to other areas of the body - visiting the lung too). Better to have lung cancer as the primary cancer - something they can treat.............but again, I'm getting ahead of myself.
They are reducing his Ativan for agitation/anxiety - because he's so out of it - they need to clear his body of as much medication as they possibly can. The Cyclosporine (which causes the crazy) will take another 2 days to clear - the Ativan is only prolonging the fuzziness he's feeling. It's still impossible to hold a conversation with him - he has absolutely no idea what's going on.
We have a plan - even if Ron doesn't know anything about it ............yet!
Here's a photo of Ron today..........and a picture of our view.
Another Day
I'm tired of counting!
Traffic was a bear today!
Liver Transplant Team @ rounds today: new anti-rejection medication, Rappamune; psychiatric report, anxiety and depression (may receive additional medication); nutrition, better menu.
Thoracic Surgeon visited today: Ron has a small lump in the lower part of his left lung, the doctor wants to talk with the liver transplant team to see if it's okay to go ahead and do a full upper chest CT with contrast; once that's done - the doctor said the LUMP IS NOT in a place where they can get to it via bronchoscopy (instrument inserted into the airways). The next option would be needle aspiration (that's what we're hoping for).......the final option would be to go in surgically, cut out and resection the lung......Ron is not physically ready for that.
I'll update later as soon as I know something.
Traffic was a bear today!
Liver Transplant Team @ rounds today: new anti-rejection medication, Rappamune; psychiatric report, anxiety and depression (may receive additional medication); nutrition, better menu.
Thoracic Surgeon visited today: Ron has a small lump in the lower part of his left lung, the doctor wants to talk with the liver transplant team to see if it's okay to go ahead and do a full upper chest CT with contrast; once that's done - the doctor said the LUMP IS NOT in a place where they can get to it via bronchoscopy (instrument inserted into the airways). The next option would be needle aspiration (that's what we're hoping for).......the final option would be to go in surgically, cut out and resection the lung......Ron is not physically ready for that.
I'll update later as soon as I know something.
Monday, February 21, 2011
Catching up
Hallucinations continue - they began a different drug, Cyclosporin (Friday AM); stopped the Prograf........I spoke to the doctors today and they've decided that because all the problems he's experiencing (neurological side effects) - they are changing the Cyclosporin and going with Rappamune. Rappamune does have some serious side effects - not neurological - but blood clots, low white blood cell counts and problems with bone marrow....of course there is a higher chance of cancer developing as well. The doctor told us it will take a good 36 hours for the Cyclosporin wear off..........I want them to keep him until they can get everything under control.
The doctors ordered physical therapy three times a day (for weakness), they are concerned about his nutrition - tube feeding stopped today and Ron is on clear liquids.
The thoracic surgery department sent a PA to begin the evaluation process (concerning the spot on his lung). We should see the surgeon tomorrow - I hope they will do a CAT scan on his chest before Ron is discharged from the hospital.
Ron is so out of his head due to the medication, it's impossible to carry on a conversation with him. He's confused. It's very frustration and disheartening to see him this way. Let's give him more time.
My doctor has taken me out of work for severe depression and anxiety - I'm having a difficult time dealing with panic attacks.
The doctors ordered physical therapy three times a day (for weakness), they are concerned about his nutrition - tube feeding stopped today and Ron is on clear liquids.
The thoracic surgery department sent a PA to begin the evaluation process (concerning the spot on his lung). We should see the surgeon tomorrow - I hope they will do a CAT scan on his chest before Ron is discharged from the hospital.
Ron is so out of his head due to the medication, it's impossible to carry on a conversation with him. He's confused. It's very frustration and disheartening to see him this way. Let's give him more time.
My doctor has taken me out of work for severe depression and anxiety - I'm having a difficult time dealing with panic attacks.
Saturday, February 19, 2011
DAY 1 - AGAIN
Yet - we begin again. We were told this second surgery will be more painful for Ron - more painful than the liver transplant. Still goofy and loopy - he called me last night to ask how the flowers were doing (we don't have any flowers)......today he was talking to the television (morphine drip).
Ron wil be better tomorrow - I have no doubt - we've been here before - he'll get better by the day. The surgeon stopped by and said the repair was complete, and we'd worry about the lung once he recovers from the surgery.
The nurses had Ron up and walking today.
Ron wil be better tomorrow - I have no doubt - we've been here before - he'll get better by the day. The surgeon stopped by and said the repair was complete, and we'd worry about the lung once he recovers from the surgery.
The nurses had Ron up and walking today.
Friday, February 18, 2011
SURGERY OVER
Dr. Johnson (yes, he looks like he's fresh off Grey's anatomy) swept into the cafeteria area with news (macrame necklace and all)..............and said, they found a small leak (the hole was the size of a pencil lead) in the bile duct - the doctor repaired the hole........said 15% of all liver transplant patients have some type of bile leak.
Next step, the spot on Ron's lung; the doctor said the spot is new........with Ron being on anti-suppressant drugs - any cell can grow like "a flower in springtime"......they plan to do a biopsy and hopefully remove 'the spot'.
Ron will be in for the hospital for at least 5 days.
Will update once I see him.
Next step, the spot on Ron's lung; the doctor said the spot is new........with Ron being on anti-suppressant drugs - any cell can grow like "a flower in springtime"......they plan to do a biopsy and hopefully remove 'the spot'.
Ron will be in for the hospital for at least 5 days.
Will update once I see him.
BACK TO SURGERY
When I came to the hospital this morning, Ron's only concern was, that he hadn't eaten since yesterday morning at 7:30am. At 10:00am a large number of the transplant team arrived - including the surgeon (which is never a good thing).
Dr. Sellers said that he saw something on the CAT scan that concerned him (everyone was quiet and Beth, one of the transplant coordinators kept looking back and forth - at me, then Ron and back again - it was tense). The doctor ordered an OR and said he needed to go back in - suspecting the bile duct.
He then told us they found a spot on Ron's lung (which wasn't seen during any of his transplant prescreening or any of his recent CAT scans) - the doctor said a biopsy would need to be done - but not today - today is strictly the liver.
At 11:17am they began surgery, at 11:38 I was told everything is going well.
My stress level is sky high - I've had more and more panic attacks, taking Xanex on a regular basis. I have a call into my doctor, Ron's worried about my blood pressure - both of us can't be sick at the same time - that's for sure!
I will update as I hear.
Dr. Sellers said that he saw something on the CAT scan that concerned him (everyone was quiet and Beth, one of the transplant coordinators kept looking back and forth - at me, then Ron and back again - it was tense). The doctor ordered an OR and said he needed to go back in - suspecting the bile duct.
He then told us they found a spot on Ron's lung (which wasn't seen during any of his transplant prescreening or any of his recent CAT scans) - the doctor said a biopsy would need to be done - but not today - today is strictly the liver.
At 11:17am they began surgery, at 11:38 I was told everything is going well.
My stress level is sky high - I've had more and more panic attacks, taking Xanex on a regular basis. I have a call into my doctor, Ron's worried about my blood pressure - both of us can't be sick at the same time - that's for sure!
I will update as I hear.
Thursday, February 17, 2011
THURSDAY - DAY 14
Ron has been re-admitted to the hospital. Ron began having acute stomach pain at 4:00am this morning; doctor appointment at 10:00am, they decided his anti-rejection medication is 'toxic' to his body (we knew that days ago)...they changed his medication. Because of the pain, the wanted to re-admit him for a CT scan, because the hospital was on diversion lockdown, we were taken from the transplant clinic, he was wheeled to the ER and admitted from there.....hopefully this will be a 24 hour admission; his liver blood tests look good, the doctor doesn't think he has a bile leak but they need to make sure. I'll know more tomorrow.
We've not been happy with the post transplant care so far - but today, the team really stepped up - I feel like there is a missing puzzle piece to the post transplant puzzle. There are clinicians, PAs, doctors, pharmacists, coordinators, surgeons...........but not emotional support.
The doctor told us today that we have a touch of PTSD, after living in the pre-transplant cocoon of dealing with the idea of final days, the liver transplant doesn't 'feel' real - and THEY ARE SO RIGHT. Ron has told me for days, that he feels worse than he did before the transplant, and when you're lived with the knowledge that death is so near, it's difficult to break free of those feelings.......the 'highs' of newly transplanted - have left us and hopefully with the change in his anti-rejection medication, we'll feel more like Ron's on the road to a new life again. Lately it's been like living through a private hell - Ron is not himself - the coordinator told us that once all this is over with - Ron will probably never remember these bad days.........I can tell you what.....I'll never forget them.
We've not been happy with the post transplant care so far - but today, the team really stepped up - I feel like there is a missing puzzle piece to the post transplant puzzle. There are clinicians, PAs, doctors, pharmacists, coordinators, surgeons...........but not emotional support.
The doctor told us today that we have a touch of PTSD, after living in the pre-transplant cocoon of dealing with the idea of final days, the liver transplant doesn't 'feel' real - and THEY ARE SO RIGHT. Ron has told me for days, that he feels worse than he did before the transplant, and when you're lived with the knowledge that death is so near, it's difficult to break free of those feelings.......the 'highs' of newly transplanted - have left us and hopefully with the change in his anti-rejection medication, we'll feel more like Ron's on the road to a new life again. Lately it's been like living through a private hell - Ron is not himself - the coordinator told us that once all this is over with - Ron will probably never remember these bad days.........I can tell you what.....I'll never forget them.
Wednesday, February 16, 2011
WEDNESDAY - DAY 13
Ron woke me up at 3:00am - he hadn't slept all night and at 8:00 he went back to bed and slept for 1.5 hours - during that time he got up to go to the bathroom 3 times. He's physically and mentally worn out. I'm home with him today and tomorrow.
Tuesday, February 15, 2011
TUESDAY - DAY 12
Ron's practice day went pretty well. He was able to make his breakfast and lunch without a problem - take his medication/insulin and took his vitals without any help from me.
I think sometimes he forgets he received a liver - emotionally becomes swallowed up with not feeling well - I think that takes us both back to the days when he was so very sick before the transplant. I think getting out would make him feel better - but right now he doesn't have the strength for anything but trips to the doctor. Maybe this weekend we can take a drive - hope the weather holds out.
I'm going back to work tomorrow (7 miles from home), and if he needs me I can be home in 10 minutes. He has a doctors appointment tomorrow afternoon with his diabetes doctor.
I think sometimes he forgets he received a liver - emotionally becomes swallowed up with not feeling well - I think that takes us both back to the days when he was so very sick before the transplant. I think getting out would make him feel better - but right now he doesn't have the strength for anything but trips to the doctor. Maybe this weekend we can take a drive - hope the weather holds out.
I'm going back to work tomorrow (7 miles from home), and if he needs me I can be home in 10 minutes. He has a doctors appointment tomorrow afternoon with his diabetes doctor.
Monday, February 14, 2011
MONDAY - DAY 11
Spent the day at Piedmont Hospital - today was supposed to be a 'lab' only day with a clinic appointment (see the doctor) this Thursday, but since Ron's having so many problems - the team saw him today.
This is a list of his symptoms:
Huge swollen feet and legs
Tremors
Unable to sleep (slept 30 minutes last night)
Incision pain and unable to take any of the pain meds they've given him so far - trying a new scrip tonight
Still loopy - today he told me the lights on the cable box are larger - said DISH made the lights bigger for senior citizens, at the hospital today - he told me he was thinking today that he lived with his Aunt Virginia in College Park
Mood swings, grumpy
We were told all the problems he's having are due to medication.....the clinic called late this afternoon and they want to lower the dosage of one of his anti-rejection drugs.
Tomorrow I'm going to leave the day and the schedule up to him - I'm going to see how he does on his own - if he remembers his medication/his morning routine: weight, blood pressure, temperature, ck blood sugar, insulin - make his own breakfast - I'll step back and see how he does.
Hopefully he'll sleep better tonight.
This is a list of his symptoms:
Huge swollen feet and legs
Tremors
Unable to sleep (slept 30 minutes last night)
Incision pain and unable to take any of the pain meds they've given him so far - trying a new scrip tonight
Still loopy - today he told me the lights on the cable box are larger - said DISH made the lights bigger for senior citizens, at the hospital today - he told me he was thinking today that he lived with his Aunt Virginia in College Park
Mood swings, grumpy
We were told all the problems he's having are due to medication.....the clinic called late this afternoon and they want to lower the dosage of one of his anti-rejection drugs.
Tomorrow I'm going to leave the day and the schedule up to him - I'm going to see how he does on his own - if he remembers his medication/his morning routine: weight, blood pressure, temperature, ck blood sugar, insulin - make his own breakfast - I'll step back and see how he does.
Hopefully he'll sleep better tonight.
Sunday, February 13, 2011
SUNDAY - DAY 10
Ron's pain is overall better today - change in medication has helped. He's still a little loopy - medication makes him say and do some pretty weird things. Tomorrow morning back to the hospital for blood work and hopefully he'll be feeling better.
Enjoyed the kids and grandkids today - we've missed seeing them. As a caretaker, I'm pretty worn out, between taking care of Ron, doctor appointments, making sure he takes his medications are taken on time, the house, the laundry, cooking, cleaning, DOGS, DOGS, DOGS and running up and down the stairs all day - I'm TIRED.
UPDATE: Ron has been experiencing tremors today - called the post transplant coordinator - she said the anti-rejection drug Prograf is most likely causing the issue. His incision pain is back - he's trying to get by on Tylenol - because stronger medications make him loopy. Ron's blood pressure has been creeping up over the past two days - he was on blood pressure medication before the transplant (for varices) - they may need to put him back on it to control his blood pressure.
Enjoyed the kids and grandkids today - we've missed seeing them. As a caretaker, I'm pretty worn out, between taking care of Ron, doctor appointments, making sure he takes his medications are taken on time, the house, the laundry, cooking, cleaning, DOGS, DOGS, DOGS and running up and down the stairs all day - I'm TIRED.
UPDATE: Ron has been experiencing tremors today - called the post transplant coordinator - she said the anti-rejection drug Prograf is most likely causing the issue. His incision pain is back - he's trying to get by on Tylenol - because stronger medications make him loopy. Ron's blood pressure has been creeping up over the past two days - he was on blood pressure medication before the transplant (for varices) - they may need to put him back on it to control his blood pressure.
Saturday, February 12, 2011
SATURDAY - DAY 9
It's been a rough day for Ron today; lots of pain in his incision area - he can't decide if the pain is the incision or internal. His feet are swollen and he spends most of his time laying with his feet up on pillows. He's been taking hydrocodone but says that when he lays down (feet up) - he has a difficult time breathing. He's switched to a different pain medication but it's not strong enough to take care of the pain. He's restless - not sure how he's going to get any sleep tonight.
We're hoping for a better tomorrow. The kids are coming for lunch - I know that seeing the grandkids will help.
We're hoping for a better tomorrow. The kids are coming for lunch - I know that seeing the grandkids will help.
Friday, February 11, 2011
FRIDAY - DAY 8
Ron had a difficult night - didn't keep up with pain meds and pain hit around 3:00am; up early and down to the transplant clinic to draw labs, home and breakfast, resting with feet up; still lots of swelling in his legs and feet. He's having lots of pain today - probably because his first day home. The pups missed him!
Wednesday, February 9, 2011
WEDNESDAY - DAY 6
The doctors arrived and said, "Unfortunately, we're going to have to kick you out TOMORROW!" I can't wait!
The new Ron is the man I fell in love with - his light was hidden by the disease - his enthusiasm diminished - he is now joyous, exhuberant and can't wait to begin his life again.
I'm going home after work, take care of the dogs and get the house ready for Ron. I plan to work 1/2 day tomorrow, then run by the hospital and wait for his discharge instructions.
Tuesday, February 8, 2011
NOT GOING HOME YET - BUT TALKING ABOUT IT
We attended a 'discharge' class today - so many things to learn about life after transplant:
Whatever it is - we'll handle it - living a good life and taking care of the liver - that's our job now.
- Ron should be discharged Thursday or Friday
- Return for lab work 2 times a week
- Clinic visit (doctor/labs) once a week
- No lifting more than 5lbs for 6 weeks
- No drivning for 4 weeks
- Take medication at the EXACT same time everyday (anti-rejection drugs - nothing to play around with)
- Avoid crowds 4 weeks
- NEVER clean litter boxes, fish tanks, bird cages, turtle tanks (no restrictions on dogs - we don't have any other pets but our precious 3 dogs (which by the way, opened the pantry/paper towels from one end of the kitchen to the other, got into the popcorn, tried to dig their way to China through the carpet in our laundry room - that was the first day - then they went to the kennel on vacation)
- Can't be around the children for 7 days if they receive as 'live' vaccine shot such as polio, MMR....childhood shots
- Any new prescriptions must be cleared through the transplant clinic - that's for life!
- Can't visit any construction or demolition sites (asbestos)
- Can't rake leaves - due to mold spores
- This is the kicker - NO BUFFETS - ever - only cook to order food - plus nothing rarer than medium
Whatever it is - we'll handle it - living a good life and taking care of the liver - that's our job now.
TUESDAY - DAY 5
WOW! What a fabulous morning; Ron is full of energy, showered, eating regular food, walking the halls. His new liver has given him a bright outlook - he looks refreshed, thinking about how he's going to organize the garage (many months down the road).
The doctors came in this morning - amazed at how well he's doing - looks like he may be able go home Thursday/Friday. Ron said to the doctor this morning, "I don't know if it's the liver, but I feel GREAT!" They laughed.
I'd almost forgotten my 'old Ron'............it's lovely to have him back.
The doctors came in this morning - amazed at how well he's doing - looks like he may be able go home Thursday/Friday. Ron said to the doctor this morning, "I don't know if it's the liver, but I feel GREAT!" They laughed.
I'd almost forgotten my 'old Ron'............it's lovely to have him back.
Monday, February 7, 2011
MONDAY - DAY 4
Ron had such a great day - milestones include: walked up and down the hall 4 times, walked up 4 steps (he'll be able to walk up the stairs to his very own bed once he comes home), had clear liquids, telemetry removed, 1 tummy drain removed.
The doctor said he's doing great, blood tests - FABULOUS - tomorrow we're scheduled to attend a discharge class - he'll be going home in 3 to 5 days - tomorrow he goes on a regular diet - YAY!
Sorry for the poor quality of the video!
The doctor said he's doing great, blood tests - FABULOUS - tomorrow we're scheduled to attend a discharge class - he'll be going home in 3 to 5 days - tomorrow he goes on a regular diet - YAY!
Sorry for the poor quality of the video!
Sunday, February 6, 2011
SUNDAY - DAY 3
The doctor was in this morning - said Ron looked really good for someone who just had a liver transplant. They still aren't terribly happy with his blood test results - and hopefully the liver will begin to participate fully within the next few days. They plan to put him on a liquid diet tommorow - YAY! Ron's coloring is great - pink as can be!
Last night was rough for him - lots of pain - they gave him oxycodone which totally wiped him out - this morning they changed his pain meds to morphine. He slept most of the morning - a cup of ice every two hours - he much less thirsty today.
They haven't gotten him up on his feet yet - that was supposed to happen yesterday....hopefully PT will get on the ball tomorrow.
He's feeling pretty good (in spurts) - talked on the phone a couple of times today for just a few minutes.
Last night was rough for him - lots of pain - they gave him oxycodone which totally wiped him out - this morning they changed his pain meds to morphine. He slept most of the morning - a cup of ice every two hours - he much less thirsty today.
They haven't gotten him up on his feet yet - that was supposed to happen yesterday....hopefully PT will get on the ball tomorrow.
He's feeling pretty good (in spurts) - talked on the phone a couple of times today for just a few minutes.
Saturday, February 5, 2011
Papa's Chopper
Oliver has this little toy helicopter at our house - we call it Papa's Chopper.
I was sitting in the ICU waiting room yesterday talking with a pastor who was there to visit another patient - someone who was being taken off life support - so sad........
The pastor asked when my husband received his new liver, and I told him Thursday at 5:00pm - he said Thursday afternoon he heard some doctors saying the liver was on it's way - then heard a chopper land - white coats were hurrying down the hallway - the LIVER IS HERE!
Funny thing - we heard that same chopper at 3:00pm and remarked - wouldn't that be something if it was Ron's new liver.
As you may know, Ron was a helicopter gunner in the Vietnam War - that's how he picked up HEP C - flying through Agent Orange everyday......how ironic.....his new liver arrived via chopper - bringing him a new life - a life that could very well have been taken.......if the new liver had never arrived.
I was sitting in the ICU waiting room yesterday talking with a pastor who was there to visit another patient - someone who was being taken off life support - so sad........
The pastor asked when my husband received his new liver, and I told him Thursday at 5:00pm - he said Thursday afternoon he heard some doctors saying the liver was on it's way - then heard a chopper land - white coats were hurrying down the hallway - the LIVER IS HERE!
Funny thing - we heard that same chopper at 3:00pm and remarked - wouldn't that be something if it was Ron's new liver.
As you may know, Ron was a helicopter gunner in the Vietnam War - that's how he picked up HEP C - flying through Agent Orange everyday......how ironic.....his new liver arrived via chopper - bringing him a new life - a life that could very well have been taken.......if the new liver had never arrived.
Ron and Friend
Ron resting comfortably with his friend - his guard dog - thank you Christi, Amy and Julie!
FRIDAY AND SATURDAY
Surgery ended Thursday evening around 10:00pm - Ron was stable.
FRIDAY EARLY MORNING: 1:00am Ron had a terrible bout - actually - we came very close to losing him. His belly was hard, blood pressure dropped 42/25, his pulse rate soared to over 130; a large group of people came running. Nurses were shouting orders, "CALL THE DOCTOR NOW!!!!" - I heard someone say they thought is was a bleed - and I was hustled back to the waiting room. My family had gone home - it had been a long day - and we were sure things were going as they should. After a few calls, Libby was on her way back to the hospital, Michael was trying to get out the door - approximately 1 hour later the ICU nurse found me - she told me she's knows I was scared and so was she. Ended up, after blood tests, no bleed; combination of pain medication, general anethesia and dehydration - Ron was holding his own. Libby slept in the waiting room after making me a 'college made sleeping crib' - I couldn't sleep - so I spent the night in Ron's room.
FRIDAY MORNING: Ron was still heavily sedated and fighting the breathing tube; he was restless, both arms strapped to keep him from pulling out the endless tubes and wires. He had a large IV in his neck, left hand an arterial line, two stomach drains, right hand 2 IVs, catheter, heart monitor, NG tube in his nose, a skinny line that ran in and down through his heart to measure pressure......10 bags of IV medications.
The charge nurse talked me into going home for a nap; Michael came and sat with Ron, and I know it was good for both of them.
Finally the breathing tube was removed and Ron could communicate; sleepy, dazed and confused, but he was able to hold a short conversation with Michael. They sat Ron up in a chair for a few minutes; he was beginning to wake up enough to know he was in pain.
WARNING - GRAPHIC PHOTO
Libby and Anthony came by to visit and by the afternoon, he joked a little; introduing Libby to the nurses as his husband.........then said, "No, this is my sweetheart daughter."
Early evening Ron slept for a couple of hours - it was good to see him sleeping and quiet after a day of struggling with the restraints and the breathing tube.
I was able to reserve a room in the guest suite area - small little 'hotel' rooms offered to family members. So with Ron resting so well - at 10:00pm we said our goodnights - up to the suite; I set the alarm clock, enjoyed a piece of coconut cake and milk saved from lunch........and I was asleep before my head hit the pillow.
FRIDAY EARLY MORNING: 1:00am Ron had a terrible bout - actually - we came very close to losing him. His belly was hard, blood pressure dropped 42/25, his pulse rate soared to over 130; a large group of people came running. Nurses were shouting orders, "CALL THE DOCTOR NOW!!!!" - I heard someone say they thought is was a bleed - and I was hustled back to the waiting room. My family had gone home - it had been a long day - and we were sure things were going as they should. After a few calls, Libby was on her way back to the hospital, Michael was trying to get out the door - approximately 1 hour later the ICU nurse found me - she told me she's knows I was scared and so was she. Ended up, after blood tests, no bleed; combination of pain medication, general anethesia and dehydration - Ron was holding his own. Libby slept in the waiting room after making me a 'college made sleeping crib' - I couldn't sleep - so I spent the night in Ron's room.
FRIDAY MORNING: Ron was still heavily sedated and fighting the breathing tube; he was restless, both arms strapped to keep him from pulling out the endless tubes and wires. He had a large IV in his neck, left hand an arterial line, two stomach drains, right hand 2 IVs, catheter, heart monitor, NG tube in his nose, a skinny line that ran in and down through his heart to measure pressure......10 bags of IV medications.
The charge nurse talked me into going home for a nap; Michael came and sat with Ron, and I know it was good for both of them.
Finally the breathing tube was removed and Ron could communicate; sleepy, dazed and confused, but he was able to hold a short conversation with Michael. They sat Ron up in a chair for a few minutes; he was beginning to wake up enough to know he was in pain.
Libby and Anthony came by to visit and by the afternoon, he joked a little; introduing Libby to the nurses as his husband.........then said, "No, this is my sweetheart daughter."
Early evening Ron slept for a couple of hours - it was good to see him sleeping and quiet after a day of struggling with the restraints and the breathing tube.
I was able to reserve a room in the guest suite area - small little 'hotel' rooms offered to family members. So with Ron resting so well - at 10:00pm we said our goodnights - up to the suite; I set the alarm clock, enjoyed a piece of coconut cake and milk saved from lunch........and I was asleep before my head hit the pillow.
SATURDAY MORNING
What is that grumpy Sesame Street character's name? Ron had a good night, but is grumpy about EVERYTHING. Every person who comes in the room - he asks them for water. No liquids - if he were to drink and become nauseous he could tear those delicate sutures. Ron is on huge doses of steroids - the cause of his short nerves and grouchy demeanor. As the days progress, the steroids will be reduced.
He sat in a chair for 30 minutes, had a breathing treatment, the large arterial IVs were removed....AND we were just moved to the transplant floor - 6th floor - room 11.
Thursday, February 3, 2011
LIVER DAY!!!!
4:02am - "Mr. Cook, we have an offer for a liver." Ron - "I'll take it!"
5:00am - arrived at the hospital - and the waiting began.
First of all, today is an exciting day for us; but a sorrowful day for the donor's family. Organ donation is a selfless act - a gift that can only be minutely repaid by living a good life and passing on the gift of life to others - that is our plan. We are prayful and grateful. Ron's donor (and family) will be forever in our hearts.
It is 5:38pm and Ron has been in surgery since 5:11pm. We received our first update at 5:25 - the surgery is going well. The surgery takes approximately 5-7 hours and if all goes as planned (again, that's our plan), we'll see him sometime between 11:00-12:00pm. He'll be in ICU for a couple of days, then placed on the transplant floor for several more days.
Okay, now that I have all the practical things down............I have to say: I feel brave and vunerable and scared and relieved and fortunate and loved and overwhelmed and prayful and sick to my stomach and time is standing still. I feel like everything is going to be okay - I always have since the beginning.
So today is liver day - Ron's official '2nd' birthday! Say a prayer please.
5:00am - arrived at the hospital - and the waiting began.
First of all, today is an exciting day for us; but a sorrowful day for the donor's family. Organ donation is a selfless act - a gift that can only be minutely repaid by living a good life and passing on the gift of life to others - that is our plan. We are prayful and grateful. Ron's donor (and family) will be forever in our hearts.
It is 5:38pm and Ron has been in surgery since 5:11pm. We received our first update at 5:25 - the surgery is going well. The surgery takes approximately 5-7 hours and if all goes as planned (again, that's our plan), we'll see him sometime between 11:00-12:00pm. He'll be in ICU for a couple of days, then placed on the transplant floor for several more days.
Okay, now that I have all the practical things down............I have to say: I feel brave and vunerable and scared and relieved and fortunate and loved and overwhelmed and prayful and sick to my stomach and time is standing still. I feel like everything is going to be okay - I always have since the beginning.
So today is liver day - Ron's official '2nd' birthday! Say a prayer please.
Wednesday, February 2, 2011
Pears, Probiotics and Liver Drops....Oh YUM!
Ron's feeling better - I think he has a little more energy - so cross your fingers. This week he has three appointments (3 days) at the hospital: MRI, ultrasound, and doctor appointment (transplant team tomorrow). They should be raising his MELD score sometime this month.......but in meantime, we'll continue to wait for the illusive liver.
Some VA news; Ron received a call from his VA counselor today. Ron was told the VA is continuing to consider compensation changes.....(add additional medical conditions to his original rating). Just in case things don't go our way, we have an appointment with an attorney Tuesday.
I'll have more news tomorrow after his appointment..........maybe we'll get a call tonight!.......at this point, it feels like he's only getting a liver, in my dreams.
Some VA news; Ron received a call from his VA counselor today. Ron was told the VA is continuing to consider compensation changes.....(add additional medical conditions to his original rating). Just in case things don't go our way, we have an appointment with an attorney Tuesday.
I'll have more news tomorrow after his appointment..........maybe we'll get a call tonight!.......at this point, it feels like he's only getting a liver, in my dreams.
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