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Schimbare's Transplant Journey Part 2

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Posted 5/7/2015 6:00 PM (GMT 0)
I always tell my surgeon thanks for saving my life, so I can go bankrupt.
Posted 5/8/2015 1:54 PM (GMT 0)
Schimbare I have seen people go on gofundme because their car is wrecked and get 50,000 so with a well constructed story of what you are going through I have no doubt you will do well. There are people still in this world who are willing to help!! I hope your day goes well!! Just to make you smile... a patient waits nervously in the operating room, the surgeon walks in and says..you seem very nervous my dear..why? she responds; this is my first operation and I,m a bit scared..the doctor responds oh don,t be!! its my first operation and i'm not nervous at all!!!
Posted 5/19/2015 10:21 PM (GMT 0)
How are things moving along with you, Susan? Thinking of you. Big Hugs
Posted 5/21/2015 12:31 AM (GMT 0)
Barry, that was a good joke.

Thanks for asking about me. I have been ok- just tired and sluggish along with having an upset stomach most of the time.

Paul and I decided to make a bit of a change in thinking. We are settling down a bit, rather than feeling we are on tenterhooks all the time. He bought an old sailboat last year, so he has enjoyed fixing things on the boat. The boat is named Susanna, after me and his daughter Anna. I never had a boat named after me!

And now, as it turns out, we came across a rental property in our neighborhood that meets our needs much better than our current rental does. So now we are moving. I am hoping that I will get seriously ill at the moment we are right in the middle of the move. Karma, do your thing!

Thinking of you all.
Schimbare
Posted 5/22/2015 1:53 AM (GMT 0)
A boat named after you! How sweet Paul is. Thanks for the update. I wondered how you were doing. Good luck with the move. I hope you love your new home! A change is as good as a rest? Big Hugs
Posted 5/22/2015 2:09 AM (GMT 0)
Are the chickens coming with you?
Posted 5/22/2015 3:12 AM (GMT 0)
Thanks for the well wishes!

Now, David, did you honestly think I would move to a house that would not take the girls?
Moving the coop may be the most expensive part of the move, as their run is made of chain link fence,
Then there are 4x4s holding up the roof. I am trying to find someone competent who can take it apart and move it without destroying it.

They are a nearly constant source of joy, plus we get eggs! Best pets ever!

xoxo
Posted 5/26/2015 6:32 PM (GMT 0)
Greetings All!

Along with our new attitude of not being all nervous all the time, Paul and I bought tickets to see my favorite band - The B52s. We got front row seats. The theater is about 45 minutes away. I have not done anything this strenuous in months - other than going for the transplant evals where they tried to kill me by testing me over and over again.

So, I slept all day, made it to the concert, and actually danced (I use that term loosely) to some of the songs. Everyone in the audience was standing and dancing. We would look behind us and see all these old people - clearly in their 50s and above, dancing and singing their hearts out. Then we looked at the B52's and noticed that they had to be at least in their 50s. It is amazing how everyone has aged while Paul and I look just as young as we did 30 years ago! : )

Anyway, Fred, Cindy and Kate have not lost a beat. They move more slowly, but their voices sound the same as back in the 80s. I was singing along for every song. At the end I started crying a little because I was so happy. Paul is all over with his musical tastes - excluding pop and 80's music. But he knew how important this was to me, and so he danced and fake sang along with me. It was definitely a peak life moment.

While hospitalization was avoided, on Sunday when I woke up something was very wrong. My throat hurt so much, and the whole area was swollen. I could not swallow because it hurt so bad. OMG. It was the singing. I oversang and my throat was screaming in pain. Not only that, but for some reason, the thrush I had been keeping in abeyance went berserk so my entire mouth was a painful disaster.

We went to the local doc in a box, and shockingly, I thought they were well run. The MD did not want to prescribe anything without checking with my hepatologist. Amazing. Normally their heads are swollen and so they want to give me anything without checking - which is not going to happen. But this MD was on top of it. Kudos to him.

I got some swish and swallow medicine and within hours the pain was subsiding and my mouth was healing. I took 1 tylenol for the singing pain, and sucked on ice cubes and icy pops and slept for the rest of the day.

Unfortunately, I also slept pretty much all day on Monday, and now I am sleeping almost all day today.

It was great, don't get me wrong. I'd see the B52s again in a second. But we are up to day three of recuperation and I feel really, really crappy. Mostly my digestive system. Bleh.

My thoughts are with my friends in Texas, two of whom are in flood zones.

That is all for now.

Schimbare
Posted 5/26/2015 8:25 PM (GMT 0)
I sure know about the 3 day recovery after over exertion...putting on a good face. But they joy of doing something that made you feel NORMAL was worth it.

We always say that liver disease is like a roller coaster ride. You are on the MEGA Giant Ride my dear.

Hugs,

Mama Lama
Posted 5/26/2015 10:41 PM (GMT 0)
Stop the ride. I want to get off.
Posted 5/27/2015 1:19 AM (GMT 0)
You only live once...
Posted 5/27/2015 4:40 AM (GMT 0)
I was thinking coq au vin when they get too old to lay...
Posted 5/27/2015 2:21 PM (GMT 0)
Yummy. Though they will probably be fatty, because we give them so many treats, and tough because they will be middle aged.

crap, that sounds a little like I was speaking about myself. LOLLOL Fatty and tough. Snort. Actually, not so fat anymore thanks to ESLD..... But I am definitely tougher than I was years ago.

Today they have watermelon rinds and raspberries with a smidgen of mold. Oh and some quinoa and rice and oatmeal cooked up in whole milk. Along with their normal high end fancy chicken chow.

If it occurred, that would be the most expensive coq au vin ever made. I love those chickens.

You should definitely get a few, David. Fresh eggs every day!
schimbare
Posted 5/27/2015 6:46 PM (GMT 0)
I don't like eggs, but do like coq au vin, which is specifically aimed at old chickens that would be tough, unless they're cooked low and slow.

I'll bet that mold adds a lot of flavor...
Posted 6/1/2015 5:02 PM (GMT 0)
David, I did not know that coq au vin worked well for tough old birds.

I will not tell the girls.

Shimbare
Posted 6/1/2015 11:08 PM (GMT 0)
They're so plucky...
Posted 6/2/2015 9:37 AM (GMT 0)
Ah, chickens. I can discourse at length as I am a chicken owner who loves my birds....and, here's a suggestion. I sold my chickens and coop when I was dxed with melanoma to a guy who now is in the midst of a two step move and has parked them here for the initial step. He has a woven wire and nylon fence hooked up to a solar charger that surrounds the coop and gives the chickens a large and easily portable yard. They could easily fly out but don't, despite the fact that they are back home where they used to self roost in the barn rafters I am amazes by it and it is a brilliant option. He got component parts for the solar charger on line and built it very inexpensively.

I replaced my flock shortly after selling them. In hindsight I am not sure why I thought having cancer precluded chickens - but it had to do with getting something off my plate. They are back on and I recently got a pair of silkies to add to the mix.

BTW David, that plucky was very bad punning. IMHO.
Posted 6/4/2015 12:36 PM (GMT 0)
imbb, what is the charger for? I would love to get some silkies, but I don't want to disrupt the flock. They are are very attuned to each other and there is almost no pecking, so I am not going to make changes.

I do have a blue (really black with iridescence of blue) polish with a big fluffy white head. She is hysterical. She cannot see a blessed thing, despite our trimming her feathers away from her eyes. She is always wandering off away from the other girls - I think she just cannot find them. LOL She is the sweetest chicken ever! Her name is PDiddy - named by my son.

They are definitely therapeutic - I could watch them all day!

Schimbare.
Posted 6/4/2015 12:48 PM (GMT 0)
My daughter had one of those they named Pouff. Her toddler used to catch it and carry it around in a kiddie baby carriage. Pouff never seemed to mind. But it became a war at one point...the coyotes won. Sad.
Posted 6/5/2015 11:14 AM (GMT 0)
The charger is to electrify the fence which keeps the varmints out. The chickens stay in regardless of it being on or off. It works great and is sooo easy to move around.

Love the personality of the polish crested, we had a red and white that I called phylis diller - the name suited her well. Our birds are free range except for the silkies, the polish could never free range as they simply didnt get it, I would have to search for them at night, not to mention having no overhead vision to spot circling hawks. Gave them to a farmer who doesn't free range.

The silkies are set up in a separate cage and coop, they can't free range either. They can't fly to self roost and have the same problem with not seeing overhead...

Post Edited (imbb) : 6/5/2015 5:17:46 AM (GMT-6)

Posted 6/10/2015 10:09 AM (GMT 0)
imbb, really, I thought that my polish just could not see well enough to free range with the others. She just wanders about, and she is the only one who has escaped the yard and walked two houses down all by herself. We just think she is a riot. And she lays an egg every day without fail, unlike the other girls who can be slackers in the egg department.

Schimbare
Posted 6/10/2015 12:43 PM (GMT 0)
Did you get yourselves moved into your new place? Hope that you are getting settled, if it happened.

I wondered if Ochsner requires you to be physically present every so often, or can they coordinate your labs and tests with NY? Themister goes back to Mayo in a few weeks for his annual testing and labs. He will be 2 years on the list. We figured he would be recovering by now, when he was called in so many times in Jan....but here we are. Crazy journey you and he are on. How you feeling? Big Hugs
Posted 6/10/2015 8:24 PM (GMT 0)
The Miz,

I feel like crap most of the time. My stomach hurts, I sleep all day and fuss and toss and turn at night. My brain has been a bit fuzzier than usual, so I upped the xifaxin from one to two a day.

The moving is totally stressing me out because I can't do what I want to do to pack and get ready. I feel like a total waste product. My boys are having teenaged angst (no drugs or alcohol thank god). They are both very good boys that will get through the teenaged/young adult years just fine. But they are causing me to prematurely age.

This waiting and waiting to get sicker is absurd. It is getting more and more difficult to avoid becoming
depressed, angry and irritable.

I have a scheduled appt with my transplant hep next week. I will try to get my blood drawn prior to the appt so that there will be something to talk about and hopefully my MELD will go up. I do not feel confident that it will go up. I fear it may go down.

I call Ochsner, and they call me every so often. I send them any new medical records.

I hope theMister has the kind of appt he would like.

The new house is awesome, so despite the stress I am totally excited about living in a larger environment. We are way too squished in this house.

Oh and the dog either threw up or pooped on the white down comforter. I could not tell what it was and I was not going to smell or examine it too closely. I had to string up a clothes line, hang it up and use the hose to spray off the disgusting mess.

Thank goodness for Paul.

Much love to you all
Shimbare.
Posted 6/10/2015 9:07 PM (GMT 0)
I hoped you would be moved in and feeling a bit settled. I know how difficult the 2 moves in 2013 were on themister. It is worth it after, and you will get it behind you. Sure sounds like a much nicer living sitch' with the extra roominess.

Xifaxan has been a wonderful addition for HE and I hope you are getting good results. After TIPS, we were so clueless on the HE meds and dosing. I knew he might get HE in advance of the procedure, but no one really understands that until it happens in their world.

The regional hospital that did his TIPS sent him home with only lactulose. He had HE in ICU. The doctor in this "not a liver hospital" RX'd 15 ml, 2 times per day. Themister was really messed up...quite quickly! Thank goodness for this forum or I may have lost him . We had not been told anything about Xifaxan and had no info on adjusting lactulose. I hope the Xifaxan gets you feeling clear headed.

The transplant center annual visit is mostly for HCC watching, and labs. They do the 6 minute walk, and a Hepa appt. We never know who it will be. We are always glad to see what is going on inside, see his labs and of course, hope it will be his last PRE-transplant visit.

I hope your MELD is up where you need it to be for Ochsner. And I hope Themister's if off the charts, as well. Hey, I am still hopeful :)


I totally agree with you. Getting more and more sick is simply ridiculous and gruesome.

I am so glad your two young men are moving forward as they should. Big Hugs
Posted 6/11/2015 7:37 AM (GMT 0)
themiz, What are you referring to when you say "the 6 minute walk"?

And do they give themister an MRI to check for HCC?

I think I am due for another endoscopy. Does themister have regular endoscopies or colonoscopies to check for varicies?

We will be in the new house on Saturday. The movers are moving all the big furniture on that day. We've been taking carfulls of boxes over for about ten days now. I put the call out for help and just the right amount of friends came on the last two Saturdays to take apart the chicken run, and to supervise the grunt workers-the teenagers. I was adamant that the grown ups (aka the oldsters like me) not be involved in lifting. They either supervised my son and his buddies, or they wrapped delicate stuff, or they worked on dismantling the coop.

The coop dismantlers were the pastor from my church, who went to Union Theological Seminary, an English professor with an undergraduate degree from Harvard, a computer engineer with a degree from Carnegie Mellon and another computer guy with a BA from Dartmouth and an MBA from Stanford.

The most highly over-educated, yet perhaps the least handy men I could have possibly found. LOL. To say they lack common sense and handy-man skills is an understatement.

(ok, I am exaggerating there...only two of them really have no clue. But they worked together and figured it out)

They did an excellent job dismantling the run, and none of them hurt themselves. Snort.

I limited the work time to two hours each Saturday, as that was pretty much all I could do without becoming over-tired. It worked out well. No one was overly burdened or wound up in traction due to over-exertion. I gave them pizza and sent them home and took a long nap. That two hours of bossing people around was exhausting!

I am so glad that the end of this move is near.

Thinking of you all
schimbare
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