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Schimbare's Transplant Journey Part 2

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Posted 6/11/2015 1:58 PM (GMT 0)
www.ncbi.nlm.nih.gov/pubmed/21117246

Themister has seen 4 of the doctors on the above abstract. The 6 minute walk is used in things other than transplant.

Yes, an MRI for HCC surveillance, as well as TIPS placement.

No endoscopy or colonoscopy since TIPS. A little video for you.



www.radiologyinfo.org/en/photocat/gallery3.cfm?pid=1&image=tips-explained.jpg&pg=tips

TIPS takes care of the portal hypertension. Ascites and bleeding issues are not a big concern now. He no longer needs a beta blocker. TIPS does do a great job for those who do not get HE. It is a crap shoot. But bleeding to death was far riskier in themister's case. Transplant is the only cure.

Another question for you. Why do you think your MELD would go down? Themister's MELD fluctuates every time they pull labs. Frustrating trying to catch the high MELD labs when in the 3 months 19 and under schedule.

It does sound like your over qualified dismantling crew was able to attack your DIY coop move, so you score a big win:)

You are doing great with your move and managing it yourself. I commend you.

As a guide, Themister slept through our 1,000 mile move. He was unable to function at all.This man went from whip smart with a wicked sense of humor, to an old appearing man, who barely could function on any level. I literally, stood outside the men's room of gas stations so he would not get lost by walking away. He doesn't remember much of it, certainly not the details. He slept as the guys loaded the trucks, moved to the floor as the crew loaded the bedroom, then slept as I drove out of town. 2013 was a pitiful year for him.

You get settled into your new place, and enjoy sorting out of the fun parts of having a new space. A change is as good as a rest!! Big Hugs

edited to make sense of a word salad ;)
Posted 6/15/2015 1:21 AM (GMT 0)
schimbare,

When I was waiting for tx, my team monitored me for HCC through MRI's every 4 months, and Alfa feta protein blood tests. It was the MRI that showed my tumor grew over the 2 cm criteria which gave me extra meld points to 22 (Milan Criteria)which was enough to get transplanted 2 months later.

I am now nearly 2 years out. I am involved with a local transplant support group and went back to work part time, so I am not online as often. Recently, an organization called National Foundation For Transplants contacted our support group. They are a non profit that provides fundraising assistance to tx. Candidates. Theiy are at www.transplants. org or 800-489-3863.

I can relate a little with the pain of dual listing. 6 months before my tx., I started to dual list list at Indy since my stellar creatinine keep my meld between 16-18, not high enough for transplant here in Chicago. Since I had all my testing for Northwestern done in 2008, Indy made me redo all the testing in 2013. ironically, I got my call in Chicago after I finished all their testing but before Indy received all the results.

Hang in there!
Posted 6/18/2015 11:23 AM (GMT 0)
Thanks for all the info.

Today I visit my Hep in NYC. My buddy SCL is taking me - Well, Paul is taking me half way, then dropping me at SCL's house. It is always a dog and pony show to get me into NYC.

We changed houses last weekend, moving about a half mile from out old home to a much larger space. It was exhausting - and continues to be. Moving is one of the most horrid tasks in life, once one has the audacity to own things like furniture.

It will take months to put it all away, but as usual, Paul keeps everything low key. We do what we can each day and don't stress out. Frankly, I was only really stressing about the chicken coop and run, but now the girls are moved and happy, as long as they have their chicken chow and some water. If they are happy, I am happy.

In terms of my health, various small things are going on in my body - mostly digestive things, with HE that really sets in when I am overtired. I do not have a good attitude about this whole waiting-to-get-sicker thing.

Plus it is coming up on the one year anniversary of the death of a dear friend. He and I were very close for many years, then our paths diverged, but we always were so thrilled when we got to see each other. He died of Lung Cancer. (never smoked...sigh) He found out he had it after it had already moved into his hip. He lived for four more years. I think of him many times a week, and darn, I miss his presence in this world. Our lives were earily similar. He was such a special person.

OK, I am off and running at this ungodly hour of the morning (7:30...lol). Appointment at 11. Woo Hoo.

xoxo
Schimbare
Posted 6/18/2015 1:11 PM (GMT 0)
Moving...UGH.

Holding my breath for report on your Dr's appt today.

Post when you feel up to it.ML
Posted 6/18/2015 5:51 PM (GMT 0)
Good luck today. Fingers crossed for the needed MELD. Big Hugs
Posted 6/19/2015 4:03 AM (GMT 0)
Thanks you two for the good wishes.

Appt was extremely uneventful. Got blood drawn - hopefully the transplant coordinator (whomever she is - my amazing TC got a job at ALF, in their national office. She will be awesome!) will email me the results as she said she would.

The only good thing was that it was a slightly chilly day, as opposed to the horrific winter days I've had to travel in the past. And of course, just being in NYC makes me instantly happy. a
Posted 6/20/2015 2:06 AM (GMT 0)
Glad you have that trip behind you and now you can organize your new place. Has to be more fun than visiting doctors and having labs :) Big Hugs
Posted 6/20/2015 3:37 AM (GMT 0)
Thanks again, themiz.

New Meld? Down a point to 17. Great.

schimbare
Posted 6/20/2015 3:45 AM (GMT 0)
Most people deal with the ups and downs of their MELD score. You can't let this get you down. At some point, you will qualify for a liver. Be well.
Posted 6/20/2015 11:33 AM (GMT 0)
Do you ever hatch out chicks? I have found that there are few things that can ground me as well as watching peeps interact with their mom and the world.

I am hopefully waiting, my peahen disappeared about four weeks ago and I suspect she went off to nest on eggs. Looked but haven't found her. Keeping my fingers crossed. The peacocks were a filling of my bucket list when I was diagnosed with cancer and have been delightful. Not without some trauma - he disappeared when the peahen went off and has done some local roaming and nights off the property. Seems to be settled here again and is just stunning to look at. Skittish but will come within about four feet.

Hope your hens can keep you somewhat distracted. The road you are on sounds pretty rough. Maybe keep in mind that all those boxes don't care at all about when they get unpacked...and it is a choice for you whether you care.
Posted 6/26/2015 4:02 AM (GMT 0)
Thanks for all the nice posts. I would like to address them when I can.

FYI, today was my birthday. I will never be grateful for liver disease, but being sick has enabled me to focus on love, and not the other crap that can bring you down.

I had perfect, magnificent day, but if I told you the details you would think it was quite mundane or even aggravating.

I've always been sort of a Mary Sunshine, but now I am even more aware of how great my life is! Truly, I don't think I would have this depth of happiness and love if I never got deathly ill. So it is all good.

Plus, let's face it - I look darn good for a sick 51 year old! tongue

Much love and good thoughts to you all!

Liver Girl
Posted 6/27/2015 1:24 AM (GMT 0)
Happy Birthday, Schimbare!! Enjoy each day. Big Hugs
Posted 6/27/2015 3:14 AM (GMT 0)
Congratulations, Susan!

You're going to be fine.
Posted 6/27/2015 4:32 AM (GMT 0)
Susan,

Happy Birthday a day late.

I hope our Administrator fixes your log in.

Hugs, etc.

Carol
Posted 6/29/2015 5:28 PM (GMT 0)
I had a great birthday with my kids, Paul and SCL, my second caregiver and best buddy since elementary school.

I'm not feeling well now. I think I will call my hep and ask him to order some blood work at the local blood sucking place, in case something is going on.

I think, however, that my sick and tired feeling is not indicative of any interesting or important changes in my blood. No harm checking, though.

The icing on the cupcakes that SCL brought would have been enough to send one into a diabetic coma - but for me, I think everything went down fine with this lingering bad feeling to pay for the enjoyment! I'm still the healthiest sick person around.

Back to sleep.
Schimbare
Posted 6/30/2015 12:36 AM (GMT 0)
I hope you start feeling better, Susan.

Any 4th of July plans? We will go out to a field and watch the fireworks over the stadium. PHX is about 110 degree's, so we drive over and watch from the air conditioned car. This stadium has Spring Training for the Indians and the Reds. Nice that it is only 5 miles from us. That first 4th in AZ, themister was having his eval week and I drove us out after dark. It was good to do something as a break from moving and medical. I never dreamed he would have three 4th of July's and still, no transplant :( It is what it is!

Check in and let us know how you are doing. Stay strong. Big Hugs
Posted 6/30/2015 7:00 AM (GMT 0)
Thanks for thinking of me, TheMiz.

On the 4th, I will (hopefully) attend an outdoor concert of patriotic and other tunes by a local volunteer symphonic band.

The setting is lovely - on the grass area of a local public beach. After the concert there are fireworks. It is very small-town Americana-ish. We don't get much of that here on Long Island. It is actually sort of hokey, and we seldom do "hokey". So it is nice.

Oh, and my dear Paul plays in the French horn section. cool

I hope I can make it. It draws very large crowds and it just might be too much for me. We'll see.
------
Hep MD kindly ordered blood work at the local blood place, so I will go on Tues, just to see if my liver feels as bad as the rest of me does.

Have a good night.
Schimbare
Posted 6/30/2015 9:26 AM (GMT 0)
imbb,

Thanks for your interesting post about the peacocks and hatching chicks.

I ordered my girls online. Chicks can stay alive for 72 hours after hatching as they subsist on what is left of their yolk sack. (I think it it the yolk sack.)

In any event, you choose the breeds you want, being sure to choose those that are going to be available to ship all on the same day. The poor things are put in a strong, heavy, cardboard box with holes in the top. Inside are a couple of heat producing things.

You tell the post office that they are going to arrive and to please call when they do. Interestingly, neither fed ex nor UPS will deliver them. Only the Postal Service.

When the post office called me, I cold hear the peep, peep of their little voices. It was so exciting. I opened the box a little bit right in the post office, as the chicks had caused quite a bit of interest from the other customers and staff. This is deep suburbia. We seldom get to see chicken chicks.

I brought them home to a box that I had set up for them with wood shavings, a little bowl of water, and a little bowl of Chick Chow. Then I had to teach them where the water was by holding each one and pushing its little head down to that their beak touched the water.

They were all very healthy, except for P Diddy. But with extra TLC, she perked up into full health.

P Diddy was so weak. When she would stand up or walk a bit, she would just stop and her legs would slowly give out. She would go limp and she would fall asleep face down in the wood chips. It was the cutest thing.

I would love to see a mama hen care for her babies, but that would mean the presence of a rooster, and there are no roosters allowed in my town. lol And only six chickens per house, so that is what I have now. I absolutely adore taking care of them and watching them. It really is therapeutic. They have such robust individual personalities, and yet they are so dumb!

Really, I don't know what possessed me to get chickens (post divorce from the animal-hater husband) . But it has turned out to be a complete joy.

Schimbare
Posted 6/30/2015 3:14 PM (GMT 0)
Wondering how old your hens are? It may be in a prior post... I am also in suburbia but in a Borough with no regulations whatsoever about chickens. We would likely be exempt as we are a small farm, fortunately our new and closest neighbor loves the sound of the rooster crowing.

Not so sure I agree that they are all dumb. Will concede the Polish Cresteds seem to be pretty ditzy but they are so endearing... Regardless of their brain power I agree they are fun to have and watch.

Wishing you the best.

Barbara
Posted 7/1/2015 7:09 PM (GMT 0)
Barbara -

The girls are two years old. And my Polish Crested is totally out to lunch. Either that or she is smarter than we all think!

Schimbare
Posted 7/2/2015 8:33 AM (GMT 0)
Hi Group,

For about a week or so, fluid has been accumulating. I've gained ten pounds in two weeks. I went and got my labs yesterday, and everything is status quo.

But, my feet are not fitting into my shoes, my knees hurt when I bend them (because they are distended with fluid), my belly is large, and I can feel the belly fluid pushing up on my lungs or I am getting fluid in my lungs again.

I cannot take a higher dose of diuretics as I am already at the max dose.

So, what happens now? My feet and ankles are just getting worse. I've had fluid removed from my pleural cavity, with a partial collapsed lung, several months ago.

Aside from the belly and lung fluid that can be removed, what do people do about swollen feet, ankles, and legs? Do they just get bigger and bigger and thus more uncomfortable and painful?

Of course I changed my diet from low salt to very low salt, with little effect. Elevating the feet has no effect.

What happens next, if I cannot get the fluid out of my ankles and legs via diuretics and diet?

Thanks
Schimbare
Posted 7/7/2015 3:01 AM (GMT 0)
Greetings Friends!

Sorry to be so quiet and/or not replied to your posts. I am so dependent upon the people here for information, support and a few laughs. Thank you all so much. My thoughts are with all of you every day.

We are still working on putting everything away after our move. As you can imagine, I cannot do much, if anything each day. Paul, as usual, is an amazing partner, with a lot of energy. Fortunately, he really enjoys putting together the computers with the apple tv, with the cable tv etc, etc. We'd be watching three channels with some rabbit ears without Paul.

Anyway, I feel crappy and for now, that is ok, if it means that I might be getting sicker and raising the MELD score.

I call Ochsner every so often to touch base. Actually, I need to send them my last blood test results. Tomorrow.

The edema is bad, despite high doses of diuretics and salt restriction. So that is sucky. My belly and lungs seem ok. It is mostly my legs. None of my shoes fit.

I've never had enough fluid in my abdomen to be tapped. I was tapped only once from my plural cavity. But my lungs and breathing feel ok this time.

I hope things do not get as bad as they did for David when they put you in the hospital with the IV lasix. If I had to have that treatment I can only imagine dragging that darn IV pole to and from the bathroom a thousand times a day. Fun!

OK, the days go by. They are bringing me closer to transplant. I just have to remember that.

Schimbare
Posted 7/7/2015 3:26 AM (GMT 0)
The IVs were only hooked up for about 30 minutes a day. It was worth it. After 6 days and loss of 29 pounds of fluid, it was the best I'd felt in a couple of years. Turns out my MELD score had gone up 6 points that week and 3 days later I got the call.
Posted 7/7/2015 7:22 AM (GMT 0)
David, thanks for clarifying the short duration of the lasix IVs.

Have I mentioned lately that I am very happy that you got that call?

Schimbare.
Posted 7/7/2015 12:21 PM (GMT 0)
Now, it's your turn...
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