A Thanksgiving That Almost Didn't Happen

You can't appreciate life unless you look back - I accept that - I used to think that looking back was a way of making an excuse for not looking (moving) forward.

As I sit here, the night before Thanksgiving, waiting for the official day of the holiday season to happen.....I am well aware of how thankful I am this Thanksgiving.

I am thankful for Ron.  I hope we have many more Thanksgivings together.

I am thankful for our family.....loving thankfulness for our family as it grows and blooms.....our children and beautiful grandchildren......and perhaps one day.....great grandchildren.

I'm ready to move forward, and with every milestone: anniversaries, birthdays, holidays, vacations, quiet moments together - I'll try harder - to stop and 'be in that moment'.

We are most thankful for Ron's donor; although, I'm sure we'll never meet, I hope somehow, somewhere, this amazing family will feel our love.  We are thankful for their gift.

Much love to all!

Happy Anniversary to My Husband

Ron and I were married 19 years ago today.  We dated for 6 weeks and married at the courthouse one afternoon - Ron and I, and Libby (our little flower girl).  We had dinner at the Red Lobster and brought home strawberry cheesecake for dessert.  

It seems like yesterday and at the same time (after all we've been through) it seems like 100 years ago.

This morning Ron surprised me with flowers, candy and McDonalds for breakfast.  It would have been a very different day if he hadn't had the liver transplant just 6 months ago.

So today, as we celebrate our 19th wedding anniversary, we will continue to honor the donor - he or she is with us everyday.

Happy Anniversary Ron, I love you.

Pam

Six Month Milestone

We've been talking about how lucky we are.  Six months ago (at this very moment) we were sitting in the waiting room and Ron was receiving his liver in surgery.

We know of so many people waiting for transplants, and some with End Stage Liver Disease (ESLD) who won't ever qualify for a transplant.  

We know there is a family out there thinking of this day with a heavy heart - missing their loved one.

We rejoice in being given the chance to continue our lives together.....and on this day, we honor the donor.

There are so many precious memories we've made since Ron's transplant.

I won't say it was easy, because it was not.

I won't say sometimes I didn't think we wouldn't make it through the changes in medications, mood swings and snarkiness.

We found our way through the illness, challenged through the transplant, and out the other side with hope.

Ron is well - the crazy symptoms have left - he's working, helping our grandson with soccer and enjoying the family.

Many memories and hopefully many more.

Thank you for your love and support.





We may have figured it out!

Ron has been plagued with several odd conditions: night sweats, weight loss, fever, over all weakness and fatigued.

We've been told the problems are side effects from the anti-rejection drug Rapamune; and we're living with that explanation.

We spent so much time (years) dealing with the Hep C, ESLD (end stage liver disease); we are ready to get on with our life.  We want normal and I'm going to do all I can to make that happen.

So we're spending a week on Tybee Island (off the coast of GA.) very soon.  We can't wait.  This time last year, we thought it could be our last visit together; and now, with a new liver, 5 months post transplant, we'll spend another summer at the beach. 

There's a gorgeous sunset every night - I have our quilt and our favorite spot - and we'll sit and watch those sunsets together.

Cervical Injections and Fevers

CERVICAL INJECTION

Ron has had problems with his neck and shoulders over numerous months; after a visit to his bone and joint physician, they decided to try cervical injections (makes me kinda' sick thinking about it). 

A couple of weeks ago (after wonderful mind altering drugs) Ron received cervical injections (eeeehhhh); he spent the day completely oblivious to the world - and his blood sugar went totally out of control - over 500.  The following day was no different - sleeping and high blood sugar.  Finally on the second day after surgery he felt a little more like himself.

A follow-up visit (which was a waste of co-pay) the doctor decided Ron wasn't a candidate for the additional two injections (we had already decided Ron wasn't having any more injections) due to high blood sugar (duh).

FEVER

But the craziest thing has been happening to Ron over the past month - fevers - not everyday or every other day - low grade - and over 101.  The doctors aren't sure what is happening. Ron has an appointment to see a doctor in the transplant clinic tomorrow.

I'm not a doctor - but I'm wondering if the Hep C has begun attacking the new liver and the body is trying to fight the infection.

I'll update after the appointment tomorrow.

Negative

Caroline called today (transplant coordinator) to say that Ron's blood work came back normal - NO CMV!  That's great!  The ulcer cultures are still out - but she suspects they will come back normal as well.

She is concerned about Ron not feeling well - and his extreme weight loss.  The clinic has a meeting every Wednesday to go over patients considered for transplant, and patients with complications - she requested Ron's name be submitted for discussion - so the doctors can put their heads together - to see if they can come up with what might be going on with Ron.

Caroline said she would call us tomorrow with any news.

Hmmmm.....still don't know for sure

Ron had an appointment with the transplant team today; he's been feeling, weak, fatigued and sick to his stomach.  He has ulcers in his mouth - making it very difficult to eat, and he's lost 13lbs in 2 weeks.

We have 'transplant' friends, Jerry and Chandra (Jerry received his new liver 5 weeks ago) and Jerry is in the hospital in Cincinnati - with blood clots and being tested for the CMV virus. (Jerry's a little better this evening and hopefully they'll be going home Monday). 

I never heard of the CMV virus until Chandra mentioned it yesterday.  So of course, I Googled it...........

When Ron went to the clinic today - I asked that he be tested for the CMV virus.  So what is CMV? Caroline at the transplant clinic explained it this way:  the CMV virus is  in the Herpes virus family; 80% of the population have been exposed to the virus.   Ron was tested prior to transplant and he was one of the 20% of the population which never has been exposed. But word came today, the donor had been........meaning once the new liver was transplanted, the virus was introduced.

Healthy individuals exposed to the CMV virus usually aren't  affected at all, but someone with a compromised immune system (transplant patients taking anti-rejection drugs) - well, it can be serious. 

Post transplant the patient is given a medication, Valcyte,  for the first 6 months, which usually prevents the CMV virus.  Ron was tested for the CMV virus today - we'll hear something first of the week.

In the meantime, Ron's  back on Valcyte for 3 months.  His liver enzymes look great.  His kidney function is high - meaning he's dehydrated.....we're upping his fluid intake to 2-2.5 ltrs daily.  Because of the ulcers in his mouth (unsure if it's a side effect from the Rapamune or caused by the CMV virus), a culture was taken, and he's 'swishing' with an anti-fungal rinse.  His Rappamune levels are high - so they are lowering the dose from 5 a day to 4 daily.

Caroline will call us first of the week.

Fever anyone?

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.

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.

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.

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.

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.

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!

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/

Even Better News

Today Ron went back for the results of his PET scan (lungs) - a lung biopsy was done after his bile duct repair surgery (February 18th), on a mass, and the results came back benign. 

The doctor wanted to keep an eye on it - so Ron had a PET scan earlier this month..............and.............the mass is smaller.  YAY!  It was 2.0cm in February and now it's .8cm; the doctor wants a follow up CT scan in 6 months........everything looks great.

I don't know if anyone out there deals with MEDCO for prescriptions...........here's a word of warning  - check and double check the communication between MEDCO and your physician. 

Ron has always been prescribed generic - well - today Ron calls MEDCO about a prescription that hasn't arrived yet (actually he's out)........anyway, they mentioned they shipped out his Cardura........and the copay cost is 127.00..........WOAH!...Cardura is the brand name drug..........the generic drug copay cost is 15.00.......but the brand name drug has been shipped and guess what - they don't accept returns........and if we don't pay for the Cardura - they won't send any other of his medications.......including his anti-rejection drugs.  Basically - they have us over a barrel.

A good use of a calendar

Calendars are great - every doctor appointment - added to the calendar (you can only imagine what our calendar looks like).

Tonight we were sitting talking about a doctor appointment I have scheduled tomorrow...........and Ron said, "Hey, I wonder when my PET scan appointment is?"........I joked and said, "Gosh, I hope you didn't miss it?" 

He checked THE CALENDAR - his PET scan is scheduled for TOMORROW @ 8:00am in Marietta (all the way across town in Atlanta rush hour traffic).

When Ron experienced pain 13 days after transplant - an MRI showed a bile duct leak and a mass on his lung.  A few days after the duct repair surgery; a biopsy showed a benign mass.  Due to all the anti-rejection drugs he's on - IF there's a  'seed' of cancer anywhere in his body - it will "sprout like flowers in the springtime" Dr. Johnson told us...............so, Ron is having a PET scan to verify there are NO OTHER growths in or on his lungs.  We'll get the results next Tuesday.

Thinking positive thoughts!

Happiness

I love the newest photo of Ron and our youngest grandson, Braylen..........Ron has a 'giggle' on his face.

A foot with a mind of it's own

Ron had an ultrasound on his lower leg and foot today -  (preliminary report) no blood clot - but they're not sure what's going on.

Ron is on a pretty high dose of Rapamune (6mg a day) - the doctor called today and said his blood is saturated - to reduce his daily dose of Rapamune to 5mg.

Tomorrow the doctors will go over the ultrasound report .....and give us a call.   We may be making another trip up to Piedmont Hospital in the near future.

Ron was extremely tired today.  We've had a lot going on - that may be the reason.

I'm scheduled for an MRI (w/contrast) Monday to rule out Sacroiliitis.

Slipper Day

Ron wore slippers to work today.  Several days ago he noticed his left foot was swollen - this happened several weeks ago - and it resolved itself.....not this time.

Ron spoke with his post transplant coordinator yesterday - they want him to come in Thursday for an ultrasound - hoping it's not a blood clot - but honestly, I can't imagine what else it could be.  

Ron is feeling good - I think he's a little worried.  He's told me several times - he doesn't want to go back in the hospital.  I don't blame him!

2 Months

Today is April 3rd.
Ron received his new liver February 3rd.

We are grateful.

Ron is an active guy - just 8 weeks since his transplant and 6 weeks since his bile leak surgery.

He's driving

Went back to work

Loading and emptying the dishwasher

Vacuuming the livingroom

Working on his car

Walking our dogs
Grocery shopping
Taking trash cans down to the street
Playing in the sandbox with Oliver

Takes Oliver to the Dwarf House (through the little door) in Fayetteville

Ron takes his vital signs twice a day - with the help of his three apprentices (Lady Belle, Trouble and Gen. Cornwall Beauregard, Beau)

Beau is double-checking Ron's entries

180 Degrees

He's come a long way; I've been reintroduced Ron Cook.  It's been years since Ron's had so much energy....he sees some little detail that needs doing and he takes care of it. 

Okay, maybe he has taken it a bit far - one night this past week he was up at 2:00am cleaning door knobs with Lysol wipes (when your immune system is all but missing - you tend to have germs on your mind).

Another night he was up cleaning bathrooms at 2:45am - a blessing yes, but is he getting enough rest?

He sleeps about 5 hours a night, keep in mind - pre-transplant he was up every 45 minutes running to the bathroom from all the fluid retention and diuretics.  Anyway, I don't think he's getting enough sleep - I mean, 5 hours used to be one of his afternoon naps before he'd wake up long enough to eat dinner - then back to bed for the night (or 45 minutes snoozes). 

Ron went back to work - weeks before released............  It is suggested 3-6 months before returning to work......Ron went back 7 weeks after surgery.  I must come to his defense on this one.  Ron is a salesman; he sits at his desk and sells all day long - so when he said he was ready to go back to work - he went.  He comes home every afternoon refreshed and excited about work.

With Ron's new found life, I have to be honest, it's not been easy - he's more sure of himself, looks to me less to do things for him; he wants to be in charge (I'm not used to that, it's a give and take, and I'm trying to let go more).

I'm proud of Ron, I'm proud he didn't give up and didn't let me give up.......at times (silently) we weren't sure he was going to make it.  He loves his family - and his family loved him through it all.

Clinic Visit

Not much new - this week's clinic visit:

The incision is healing great
They added medication to slow Ron's racing heartbeat
Ron gained a couple of pounds (YAY!)
He'll continue to come in weekly for blood draws........but he doesn't have another clinic visit for 6 weeks.
They will see him less and less for the first year - then once a year for the rest of his life.
Ron is doing wonderfully!

Ron needs several procedures: hernia repair, cataract surgery, colonoscopy and dental work - all that has to wait until after his 6 month post transplant date.

Here's a photo of Ron and our pre-transplant coordinator, Cindy Quinn - yes, she's our favorite person.  She was always there for us - talked me down off the ledge several times while we were waiting for 'the call'.  We love you Cindy!

Ron spent the afternoon with Oliver



Some Firsts

Ron's life on this side of liver transplant:

Ate a steak (he was protein 'starved' pre-transplant due to 'brain fog' caused by protein)
Worked a few half days last week (haven't told his doctor this yet)
Cut half the front yard on his riding lawn mower
Went to the grocery store several times
Took the dog to the vet
Enjoying life again
Sleeps at night
Happy

The Best Medicine

Clinic Visit

Ron had a clinic visit today and had his incision staples removed.  He said it didn't hurt.  (Thanks Carolyn)

Ron is anxious to go back to work - I think (I know) it's too early and so does the doctor - she said maybe a couple of weeks. 

Ron is feeling well - very little pain, sometimes tired, and needs a nap in the afternoon....not sleeping well at night.  They addressed his blood pressure issue - put him back on bp medication.

Ron needs to put on more weight - we were told it will take him a good year to gain weight and muscle mass. 

We are thankful.

Birthday

Today is my 54th birthday.

Ron and I spent many months not knowing when or if he was going to receive a new liver.  End Stage Liver Disease, that's exactly what it is - the end; you know I can't get over that.  I don't know how long I'll have to talk about almost losing Ron - but I have to - I guess although I was well aware and fighting and caring for him; the deep emotional part of me was in total denial.

Moments of pure panicked clarity rang in my ears, and I went through the scenarios of 'what ifs'; I think it was subconsious self preservation.  I tried to picture my life without Ron; it was a hazy picture, it was a surreal picture.

I went through all those stages - you know - those stages: fear, anger, denial....blah, blah, blah - it was like riding a monsterous rollercoaster, in the dark, in the rain, and alone.  I went through these emotions (and still do) more often than not.

So you wonder why now - I mean, shouldn't I be happy about Ron's transplant?  I am thrilled and grateful - but something quiet inside - whispers reminders of the loss that could have befallen me and our family.  It's wrapped tightly around me, like a second skin - I want to shed it, to rip it away, to wish it away, pray it away - but as if it has a life of it's own - it won't leave me - it's not time yet.

So today is my birthday and we shared one more special 'today' - 'together'.

On that note - goodnight my friends.

Quiet Weekend

As Ron feels stronger and clearer he has more and more questions about the transplant, and his health overall.  He told me he doesn't remember any of the time between the transplant (Feb. 3) and a couple of days before he was finally released from the hospital,  after the bile duct surgery (Feb. 23).  I'm glad he doesn't remember.

It's been a quiet weekend - and I love it.  No medical emergencies or trips to the hospital........that means the world to us.

We are thankful.

Appointments

Ron had a clinic appointment yesterday:

Transplant Clinic
Bloodwork (no news yet)
Staples come out next week
He lost yet MORE weight - he's down to 135 (that's 20lbs since the surgery)
Suggested 'grazing' - (ladies, wouldn't that be fabulous - if someone told you to graze all day?)
He can drive short distances - no interstate - like up to the corner store

Diabetes Clinic
Ron has had a terrible time with super low blood sugar - 22, 26, 32.......
Changes in insulin units

He's doing better   :-)

1 month ago

One month ago, at this very moment, Ron was on the operating table receiving his new liver.  One month ago, a family was planning a funeral.  Those are the facts.  Because of the way things lined up, our lives met, crossed and were changed forever.

I've been thinking about the letter we'll 'try' and write - the letter to the donor's family.  The transplant team suggests waiting for 3-6 months before contacting the family.  What can we say?  I know I'm searching my heart for the words.

We are grateful.

When you say foot?

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.

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.

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)

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!

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.

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)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 - 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. 

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.

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.

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.

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!

THURSDAY - DAY 7

He's home - and we're thankful!

WEDNESDAY - DAY 6

I went back to work today - Ron is on his own and doing great - walked the halls - enjoying his meals.  He has had some crazy itching - they are not sure what it could be - but they feel it's not serious. 

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.

NOT GOING HOME YET - BUT TALKING ABOUT IT

We attended a 'discharge' class today - so many things to learn about life after transplant:

• 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.

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!

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.

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.

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.

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.