Today's update: Kevin's numbers continue to improve albeit slowly. They DID figure out the source of the infection (the lining of his abdominal cavity) and are now treating that. If that infection clears up it might be what my liver needs to jump start repairs, but he is still listed on the deceased donor registry for the next available deceased liver.
My first follow up appointments are tomorrow. I'll have labs drawn, meet with my surgeon, meet with my donor advocate, and meet with the psychiatrist. We're going to arrive early enough for me to get the labs and then go visit Kevin.
I also have a stack of thank you cards for the nursing staff on my recovery ward we'll drop off before we go over for my appointments. We'll drop them off and go. I'm hoping they'll clear me to do a couple of days of work from home - not because I really want to work for my boss (who has not checked in on me, sent a card, or sent any sort of acknowledgment along that I'm gone. She did text me to ask about dates for my calendar for next school year but no "how are you doing?".) but there are a couple of easy graphic design jobs I was written into at the state level that will be nice additional income for the summer and because it's the state they'll need the clearance letter that says I can work from home as I deem appropriate. Fingers crossed for a good appointment overall.
I have to do the "Person, Woman, Man, Camera, TV" test with the psych again tomorrow - here's hoping I do better than TFG.
Todays updates: they told me two things never happen at the 2 week follow up:
1). We don’t clear you to drive
2). We don’t release you to virtual visits going forward.
today I was cleared to drive and told all my remaining visits can be virtual.
all of my numbers are way up - most being where they should be around the 4-5 week mark. I was expecting average and am apparently an Advanced Placement donor instead taking the accelerated course. I’ll get my clearance to work from home on a limited basis and ad I see and feel fit next week. Honestly could not be happier about my recovery.
Kevin's update: his body is slowly improving. They found the source of his infection and are now treating it directly. If they get that under control they see no reason my liver shouldn’t also finally be able to shoulder its burden. There will come a point where his numbers might be good enough to knock him off the deceased donor list. (He can always end up back on it if the need arises). Honestly we’re all pulling for mine to do what we all know it can do. Slow improvement is improvement and once that infection is under control …
the sun is shining and it’s a beautiful day - I’m glad I at least got to get a little fresh air in between 3 hour car rides. Kevin’s wife is doing well and will continue to keep us updated as part of her first wave of updates. I’m hopeful for some above average news for Kevin soon!
@dannyboy All good news! The body is an amazing healer, given time and rest (and the right meds)!
So glad to hear things are going in the right direction.
@dannyboy This is a new level of wonderful news. I thought Kevin was going to need a new liver, and now, your news shows a seemingly miraculous direction where your liver may work for him after all. You must all be feeling so much relief right now. And his wife and children must also be reassured. Thank you for letting us know.
@jeanne-mayell right now it’s like his family has two insurance policies. Mine and the deceased donor list. If a deceased donor becomes available 10 minutes from now mine is gone to be replaced with the new one.
But - his numbers are improving albeit slowly. If they reach a certain point he’s off the deceased donor list - at least temporarily. A continued improvement is the best course to hope for because it doesn’t involve someone else dying.
Either way it’s a win for him and that’s all I’ve ever really wanted for him - to be able to start living at long last. So grateful to all of you for the light and love! He’s going to be “birthed” soon I can feel it!
@dannyboy, my money is (and if you read my posts & pay attention to wording) and always has been on Collin. The Little Liver That Could. Collin is a Scottish masculine name perfect for a bold and mischievous soul. Collin can also be a variant of the French Colin, and means "victory of the people." I'm happy that Collin has a back up-just in case. Insurance can ease stress for all. You know where I stand in either event.
Your check-up is wonderful news, and I'm sure it makes your other half and the twins happy to know you are doing much better than they expected.
It's been a few days since I've given an update. There haven't been a lot of major changes for Kevin. He's still waiting on a new liver. He's had a couple of additional procedures, including one today that will take some pressure off the blood vessels in the liver. This went well and he's resting and comfortable right now - but he has to lay flat for 24 hours and restrictions like these leave him agitated.
He's still waiting on a new liver. Mine has made some growth but not anything nearly resembling the growth it should have made in him by now. BUT - mine is keeping him stable right now so one of two things will eventually happen. Mine will get its act together (team Collin) or it'll keep him stable until the deceased donor liver becomes available.
As for me - this is my first week home alone and it's going well. I mowed the lawn (relax people it's an electric riding mower and I took it easy and did it over 3 days). Our meal train ends on Friday and I think that'll be fine - my stamina gets a little better every day and I no longer need a nap after doing the dishes. I have been walking in the morning on the treadmill and have gotten my MPHs up as well as my length of time on the treadmill proper. Next week I'm going to attempt walking Boone. (I feel bad leaving Oliver behind but even without major abdominal surgery I can't control 2 dogs and Oliver is the only chocolate lab I know who pulls like a Husky.) Taking it easy overall. This weekend we're going to see Six at Wharton Center. When I wen to my daughters dance concert last week I was not able to sit well for the hour and a half program but I'm further ahead in my recovery now and Six is 90 minutes without an intermission so I should be able to trooper on.
Still no pain. Some random soreness that comes and goes depending on how (and how long) I sit and/or sleep. I was able to sleep on my side for about an hour the other night which was heavenly. I am not a back sleeper. I have to wait until clearance in June to sleep on my right side per the doctor.
I will work the next two Wednesdays from home - I have a stack of things to get done. If I need to I'll also work June 3rd. I will get over the guilt of not working right now. I have the paid time off and I need to not feel bad about taking it.
Your comment about the lawn mower cracked me up! Haha.
Don't feel bad about that saved up time. Yes, you deserve all the time off you can get. You are doing so well it is amazing!!!
Things sound rather stable for Kevin so this is good news for sure.
Thanks for the update.
@journeywithme2 I needed that 🤣
this is still very much indicative of late stage. Capitalism if you ask me. I am off of work. I’m off of work for a very good reason. And instead of saying, hey! I am off work. It’s time to recharge my batteries In a way that I’ve been desperately wanting to for several years! Instead, I check my email on the sly and spend most of my days feeling like I should be at work.
so - to quote Newhart…
STOP IT! 🤣
We can't win for losing in life-LOL. When we're away from work in the short term, we can't help but think about what we should be doing. When we're off work (like summer vacation for teachers), it gets to the point where we say "Oh no, it's almost over. Do I have to go back?"
I'm still team Collin. Still keeping you both in my prayers @dannyboy.
@dannyboy I see it is awaiting moderation so evidently it has offended someone... which was far from my intent. Know that I care deeply and was sharing a rueful laugh at myself ... when I find myself in your situation ... and I still feel that I must work and earn my keep... I tell myself ... "Just Stop it!!!"
Again my apologies if sharing the link triggered anyone.
@journeywithme2 the link was there today and I saw it! It made me laugh because really - STOP IT! Is the perfect advice for my current mental state :-)
I sent my “intent to work from home” letter to my boss today. She’ll either accept it or she won’t and if it’s a no I’m done working for the school year including email checking.
Asking for prayers and for my "housemate" ... we both downsized to move in together... conflicts have arisen.. as will happen between two strong willed women who were "oldest sister" in family of youth. Health challenges for her and different ways of showing love and care conflicting. Please send me and P. Much Light and Love and Guidance to peaceful ,loving,quiet and harmonious way of life in this new living arrangement for two seniors wanting to "age in place" and care for each other to the Highest Good of All Concerned . Thank you for your support during this very trying transition at this stage in our lives.
Prayers and appreciation going out tonight for Alice Stewart, long time CNN political Republican contributor who passed away unexpectedly today. She was only 58.
She was a regular staple on the network, even worked last night. She was HIGHLY regarded and loved by her colleagues for her inside, kindness, civility and thoughtful personality. Truly one of the rare shining lights in the current Republican Party. I didn't agree with her a lot, but I appreciated her. She was a welcome bridge over a wild river in a world of crazy stupid politics.
May her memory be a blessing.
As I recall you too are a Libra. Balance is vital for us. I don't know what your friend's astrological inclinations are but maybe if you research her sign you will find some clues to help you?
My husband and I had a citrine crystal (yellow/gold for communication) that we used like a "talking stick" and that often helped us LISTEN instead of just reacting. He was ADHD and Bipolar AND had had a terribly dysfunctional/abusive childhood. I learned a lot. Ha. & of course I was not exactly perfect myself, although my issues were less medically diagnosed and more invisible. We had been married 30 years when cancer from agent orange took him, and he passed very cognizant, awake, still funny as hell, and completely unafraid.
I will visualize you and your friend in perfect harmony (well we all can dream right) and at the very least with good, healthy tools for communication and your loving heart balancing not only your own issues but leaving a window open for her to come to terms with hers. Blessings ❤️