Getting closer to transplant

We just got back from Vanderbilt in TN to our home in FL after my husband's 6 month checkup since being listed for tranplant.  His meld has gone from 21 in Dec. to 22 in Feb, back to 21 in April and now back to 22.  He's in the top 5 candidates for his blood type and we have gotten a 'maybe' call 2 nights ago but the liver turned out to be unacceptable.  I'm feeling like 'the call' will happen sooner rather than later.

They added Neomycin sulfate pills to combat the ammonia which is the biggest complaint (besides the swelling in his legs).  It has really helped and he's gone from sleeping 20 out of 24 hrs to sleeping about 16 hrs and being way more alert and energetic. 

We met some great people that were at different stages of transplant from 3 weeks out to almost 5 years. 

I have made lists of important contact phone numbers to carry with us and have bags arranged for each of my pet's caretakers.  We have suitcases packed and ready to go.  We've done dry runs to the airport and talked to the company that will airlift us to TN.  Is there anything that anyone has that they can recommend we do to prepare that we may not have thought of? 

 

Try to get some sleep while you can. You won't get much after transplant as they will want you in his room every day for teaching purposes (medications, care of drains, dietary instructions, diabetic instructions--steroid-induced diabetes), etc.

Keep your cell phone on and plugged in at home, as they well may call you on that phone (they did with me.) Then take it with you, along with the charger, as David mentioned.

Hugs,
Connie

Here are some things I wound up purchasing at Target near translant center:

Sports shorts with elastic waste bands and pockets...his belly was distended and he had a drain just below the incision that had to be drained often. It was awkward to use the toilet with zippered pants. And the drain fit nicely in the pocket And they needed to be a size larger as his waist was different.

The drain leaked some and we needed pads. The hospital may supply or he may not need a drain.

Something to organize the pills regime... a craft box as they take pills before and after meals, twice a day on a pretty strict schedule (7 am and 7PM). pills you take every 8 hours for 3 times a day, the antibiotic was MWF only, etc.. Some folks say their docs got them on a 3 times a day schedule from the start, but that was not our experience.

We got an app for my iPhone to schedule the pills..there are several. I used Pill O'Clock. it set an alarm each time it was a pill time. We used it for about a week.

Since you don't know how long you will be there, bring enough meds or RX for the caregiver. Some patients have complications and the family stays a long time.

Mike wanted a clock for his bedside table as hospitals don't have them. We got him a cheapie with big dial.

HIS cell phone...Mike called me night and day if I wasn't there...and I was glad he called rather than be anxious. There was a wild fire one night with a lot of smoke outside and he could smell it in his room and wanted to be sure I was okay at the hotel, for example. and I was glad he could reach me.

His toiletries...the hospital stuff isn't good.

he may not be able to shower for some days. We got some dry hair wash stuff (they had some at the hospital, but didn't offer it...odd). His hair started to smell in about 2 days. He didn't take a shower til day 7.

A lap top if you are going to stay connected. And its charger.

Phone list.

That's all I can think of right now.

We were ready like you but did'nt have the air transport issue...Mike and his daughter drive the 125 miles. They wanted him there ASAP.

He got the call at 5:15 on a Saturday afternoon, was at the hospital by 7:30...went to OR at midnight once the donor liver was found to be a good one, no tumors, etc. They started the surgery about 3 AM They closed him about 3 PM. I got to peek at him at 5:30PM. he was not awake, he had tubes everywhere you can have a tube, and he was in distress and restrained. It was hard to see, but they told me it was normal after this surgery, that he wouldn't remember, and was fine.

To me the mort important thing was that he was PINK. He hadn't been PINK in a very long time. That liver started working right away.

I took a notebook with me and created a journal of every day. At the VA in Pittsburgh, they had pharmacy people come around and go over medications with the caregiver serveral times. The TP Cordinator also had a book with release info, phone #'s, etc. Also taking care of the T tube, instructions were given on that, Checking blood sugar . . even if the recpient is not diabetic, alot of surgeons want the Blood sugar kept in an acceptable range, they say it helps in the healing process.

If you are being med flighted, check and see how big of a suitcase you are going to be able to bring. I had spoken with them about it, and was totally packed. When the call came, the plane they had scheduled for us was busy and we had to go with a smaller one, so I was told to downsize. We were in PA, in the winter and I packed alot of warm clothes . . didn't need them!! I also brought too much for my husband . . he is always cold . . .he was an exceptional case, but he was only out of the hospital 3 days before we flew home. Remember, what you bring on the med flight has to be acceptable on the Commercial flight for the trip home.

I have a friend awaiting transplant @ Vanderbilt TN. She is also MELD 20!!

Debbie

Some transplant clinics require higher MELD scores than others. I got mine at 24, but when I originally got in the pipeline, was told I'd have to be around 27-28 to have a chance on the list.

prayers your way

The VA gives you the pill organizer, all the bandages you will need, blood pressure cuff, themometer, and glucose meter, and all of the meds you will need for 1 month till you get back to your own VA and get them filled!!

I LOVE THE VA!!

Debbie

You guys are all so helpful and informative. This is great. Even though it's not been idyllic these last few years with a year of hep C treatment (for a while they had him injecting interferon daily until I thought THAT would kill him) followed by a downhill spiral with his meld going from 13 to 20 in 18 months. BUT - in some ways we are really lucky (knock on wood) in that his varices are tiny and insignificant and the fluid is mostly in his legs and the dr. said he's actually carrying the right amount of fluid. He hasn't had to be hospitalized and can still walk the dog almost daily - sometimes only a block but sometimes he can go 1/2 mile! He's lost tons of muscle tone but was in VERY good shape prior to his liver failure.

I have a 12 step program that keeps me sane (most of the time). My biggest concern is if we are gone for an extended time frame i'd be more comfortable in a little apartment or house where we can have our little dog. The VA hotel doesn't allow dogs but maybe I can get the little guy his service dog certification. I'll update everyone if we anything changes.
Terri

One of the things I've read is no kitty litter and no bird cage cleaning.

We have a Yorkie and actually got him because they don't shed. We keep him in a manageable cut. We tried to keep him in show cut when he was really young but it's way too much work and he was very unhappy. He is Harry's constant companion and sleeps when he sleeps. For me he's just 5lbs of trouble.... cute trouble though.

Went to see Harry's primary today. He's anemic so the primary is going to run some extra blood tests next time he gets blood work. Other than that, everything was par for the course.