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My Liver Transplant Evaluation

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Posted 5/16/2011 10:55 PM (GMT 0)
Thinking good thoughts for you to keep up your strength.
Posted 5/16/2011 11:02 PM (GMT 0)
I know you'll be fine - you're stronger than you think !
Posted 5/17/2011 12:05 AM (GMT 0)
ditto what carol and pam said!

emma

 

Posted 5/17/2011 12:14 AM (GMT 0)

I'm already exhausted and it was a light day.  The next two will be grueling.

Carol and Pam:  How did your guys manage to get through the evaluation?  Were they scheduled for things almost every day like I am?

Hugs,

Connie

Posted 5/17/2011 12:15 AM (GMT 0)
Keep your thoughts positive. You can do this! One test at a time, you've already finished day one at the hospital. We are thinking of you and praying every day.

Dean and Linda
Posted 5/17/2011 12:19 AM (GMT 0)
Mike had several long days. The cardiac cath took from 6AM - 4PM. But a lot of that he was on a bed of sorts and napped.

We did psych at our own doc on our own time.

The long days were when they had multiple things schedule. But he rested in between. Anytime there waas going to be a physical examination, he climbed on the table as soon as they put him in the room and stayed there napping. I sat and waited while he took catnaps.

He even did that last Thursday at post clinic. The SECOND they got him in the room, he was on that table and sound asleep!
Posted 5/17/2011 1:54 AM (GMT 0)
Carol, they have given me no time to nap.  Appts. are all back-to-back.  One time I get a gap of 1 1/2 hours, where hopefully I can get something to eat.  I've never been able to sleep anywhere but in a bed...and who would wake me up if I fell asleep?

Good night, all!

Hugs,

Connie


Posted 5/17/2011 2:45 AM (GMT 0)
Connie,
I'd be surprised if there won't be times when appointments aren't back to back, as hospitals usually have back ups and run late. One day I waited 3 hours for a MRI, due to a machine going down. If you need to sleep, make sure to tell someone where you'll be and they'll come get you. I'll guess that Tita is from the Philippines.
Posted 5/17/2011 11:09 PM (GMT 0)
David, Tita is not Asian. She seemed more Hispanic...no accent at all, though. She is VERY short.


Day 2



They needed 24 vials of fasting blood. AaaaaHahahahaaaa! [img]/community/emoticons/turn.gif[/img] Riiiiiiiight...with my veins? [img]/community/emoticons/shocked.gif[/img] Two nurses used the only 2 accessible veins...one in each arm, actually just above the wrists. My body said, "NO MORE" after 23 vials. I was very surprised that they got that much. They asked me to come back later, but I never got the chance. There was such a long wait for my x-rays (chest and back) that I had no free time...as it was on to bone mineral /bone density scanning. After that, my van was due...but of course was late. By the way, I noticed one of the vials was marked No Alcohol...so THAT"S how they know if you are drinking--blood alcohol level.



The bone density tech told me that transplant meds can cause osteoporosis, so they keep a good eye on that.



The lab also needed a couple of cups of urine. I couldn't tinkle, so they also said to come back later for that. No time. However, they gave me a big jug for 24-hour urine collection, starting at noon today. I'll turn it in tomorrow and try to give them a fresh sample.



The van driver arrived in a new van...VERY high off the ground, NO stairs, NO lift! Whoever ordered these things for the handicapped van service must have been getting a kickback. That is just STUPID. I had to sit down backwards on the lowest part of the van (which wasn't very low) and grab onto something while the driver pushed me and somehow I got up in the seat. Getting out was just as bad. And my clean white pants got all dirty. Uggh.



My neck is killing me (probably from stress and weird positions for the tests), but on to tomorrow.



Hugs,

Connie

Posted 5/17/2011 11:13 PM (GMT 0)
Connie, I know it is grueling! You can do it!! I remember when my hubby had his transplant evaluation, it seems all of his appointments were back to back as well. It was a long week, but it got done. Just keep thinking about the goal and keep your eye on the prize!!

Hang in there!
Mer
Posted 5/17/2011 11:25 PM (GMT 0)

Week?  They have me going for 3 wks. with back-to-back appts.  I WISH it were only a week.

Hugs,

Connie

Posted 5/18/2011 11:32 AM (GMT 0)
Rock on girl... man Id fall over if they took 5 vials.... u r super hep 93.... u go girl... Sandia
Posted 5/18/2011 3:43 PM (GMT 0)
keep going connie, you can do it!!!,,, i have the greatest faith in you!. WONDERWOMAN!!!!
xxnatasha.xx
Posted 5/18/2011 11:36 PM (GMT 0)
DAY 3 (Is it only Day 3???) Monday seems like weeks ago.


I owed evaluation a vial of blood and a clean catch urine...but they couldn't take me right away, so I left to go to my Ultrasound for the liver. That took about an hour. The sonographer kept messing around in the area of my spleen. I asked if there was a problem. He wouldn't tell me anything. He proceeded with the rest of testing, but left me on the table while he conferred with the radiologist...who came back into the room with him, wanting more pics. It seems that there was something near the spleen that the sonographer couldn't identify. The radiologist asked him what happened when the rt. liver lobe is removed, as in my case. The sonographer was silent so I chirped up and said, "It GROWS" (meaning my left lobe.) To which the radiologist said, "She's right!" The left has grown to compensate for the missing rt. lobe. I can even feel it. So yes, I did feel proud of myself for knowing that. And it was the extra liver that the sonographer couldn't identify...but good on him for questioning it and getting the radiologist's opinion.



Prior to all this, I could have no dairy or fat products after midnight and had to be fasting for at least 6 hours before. A lot of the tests have dietary restrictions and/or fasting.



I went down to the lab to let them try for bloodwork and the clean catch. They had no orders. Apparently, they clear them at the end of the day. So they had to request new orders. I knew I wouldn't have time before my next appt., and I was starving. So decided to try again later.



Went to their cafe for coffee and ate half the fiber bar I'd taken with me. That's all I could manage before heading upstairs for the Echocardiogram. It was supposed to be with contrast, but the tech said I didn't need it. But guess what? The radiologist wanted some pics with contrast. I explained that my poor little veins were shot from earlier this week. I was told that they would have to give contrast for the stress test coming up next week, so he agreed to let contrast slide today. Whew!



After that, I went back to the lab. The couple of blood draws they tried to combine on Mon. didn't work...so now, instead of 1 vial, they needed 5. Darned good thing I didn't have to use contrast for the echo because she got my last remaining vein. However, they said they didn't have orders for the clean catch.



Back upstairs again for my 4 PM TB test. That was very quick, so I was able to leave by 4:10. I had alerted my neighbor that I might need her to pick me up today, so I called her and she was there in 13 min. to bring me back home. I just didn't feel like waiting for the van for an hour or more, so I canceled the ride back with them.



I am sore all over, tired beyond belief, and THANK GOD I'm "off" tomorrow...though I have to get up early for a plumber (wouldn't you know..the first day I could sleep later!) and go to Walgreen's (picking up my Go-Lytely prep for Mon's colonoscopy and upper endoscopy.) Then grocery shopping.



When I got home, I called the TP nurse. Was told that no more urine was required and also that my hepatologist had just ordered a PIC line for me!! Yay! She didn't know when it would be done as it had just been ordered. This will relieve me of a lot of stress and eliminate vein problems.



Back to Mayo on Fri.



Hugs,

Connie

Posted 5/19/2011 1:30 AM (GMT 0)
Connie,
I know you're beat, that's to be expected. Stay with it. Will you get the weekend off?
Posted 5/19/2011 1:34 AM (GMT 0)
Hang in there Connie. We are all rooting (sp?) for you! Rest up and be ready for tomorrow.

Emma
Posted 5/19/2011 1:53 AM (GMT 0)
Yes, stay with it - believe me - it's well worth it!
Posted 5/19/2011 3:21 AM (GMT 0)

David, yes, I get the weekend off.  The clinics don't stay open on the weekends.  I'll be doing laundry...and sleeping a lot.

Hugs,

Connie

Posted 5/19/2011 6:33 AM (GMT 0)
Sounds like an exhausting day! Make sure you rest as much as you can over the next three days so that you are fresh for next week. Can you do your grocery shopping online at all? If you could maybe you could do that for the next few weeks.
Posted 5/19/2011 10:54 AM (GMT 0)
Wow Im exhausted remembering all that... drives me nuts sitting here reading and not being able to help... there is no way Mike could have done all of what we did.. or even remember everything... u r a CHAMP.... a CLASS ACT... u like ROCK... u GO GIRL... I know u can do it... my prayers are with u... Sandia
Posted 5/19/2011 11:27 AM (GMT 0)
awww connie, you are so brave!! try to have a relaxing week end, pamper yourself, sleep lots!! you are so amazing!! lots of hugs and prayers for you connie.xxnatasha.xx
Posted 5/19/2011 3:15 PM (GMT 0)
Connie,

What a day you had.

Hurry up and wait and then the mess up with orders, etc.

The new pic line will help.

Mike had a cardiac cath one day. Had to arrive at 6AM NPO from midnight.

They fiddled with this and that, did his bloods over cause there was something they didn't like, the doc had an emergency --- and it got to be 2PM before the cath BEGAN.

I had one hungry/cranky/tired man on my hands after THAT.

And us 100 miles from the center.

We didn't drive home in the end, rather got something to eat and put him to bed at a hotel.

The only saving grace is that they had him in a hospital gown on a gurney like in the ER and he simply napped the hours away.

Wish you could sleep like that...in your spare moments.

Hugs,

Carol

Posted 5/19/2011 3:55 PM (GMT 0)
Hi Connie,

My mother in law has breast cancer and with a doctor's prescription and her medicare/medicaid she is able to have a 'coach' type person to drive her to her doctor appointments. This is someone who has been through what she's going through and so helps her in more ways than just driving, she shares experience, advice, and friendship.

Maybe this is something they offer in your area? I would ask your transplant coordinator about getting an advocate of this type. They are all volunteers, like you - wanting to help people that are hurting the way they hurt.

Much love, thoughts and prayers are with you,
Kori
Posted 5/19/2011 4:57 PM (GMT 0)
Hi Sandi(a),
It only makes sense. Women are tougher than men.
Posted 5/19/2011 8:37 PM (GMT 0)
This is the link for Road to Recovery, the transportation assistance from the American Cancer Society.

http://www.cancer.org/Treatment/SupportProgramsServices/Programs/road-to-recovery

The toll free number to see if there are volunteers in your area is- 1-800-227-2345
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