Post transplant Update

Still staying near hospital in downtown Chicago. Wednesday labs were good so they gave me a day off yesterday. woohoo!!!

have to have labs again this am.

My 12 day out ultrasound and labs are scheduled for Monday. If my blood labs levels continue to improve today and Monday and I pass my ultrasound, I may be sent home Monday night. Here is to hoping for that!!!

I will continue to have a total of 3 labs per week but I can have my local Quest Diagnostics do the draws.

Scheduled to return to Transplant Center on Friday after Labor Day for staple removal and placement of steristrips and hospital lab work.

Scheduled to see my hepatologist for 1st time since surgery on September 25.

I don't have incision pain, but get an achy back so if I am not back at hotel I take a Tramadol. If I am at hotel, I put on the moist heating pad.

At night, I have been needing a couple of Hydrocodone tabs for back pain and to help me sleep. I am up a lot because I have to drink 3+ liters of water a day. Felt a bit constipated yesterday, so I was allowed to take t a stool softener. Success!!! And the color is no longer clay!!!!!

Post Edited By Moderator (hep93) : 8/16/2013 11:55:58 AM (GMT-6)

Susie,

I like they model they have chosen for you...out of the clinical environment quickly, stay nearby, and then send home with periodic return.

We did a similar process, staying at a Fairfield Inn nearby.

The one glitch for us was that they wanted Mike to do labs 2x a week AT a UMiami draw station. WE didn't have to go all 125 miles, to downtown Miami, but found a center 85 miles away in Pompano FL. It was a haul twice a week.

Some places rush to take out the staples. They left Mike's in a long time and that made him feel more secure.

Not sure about back pain...but I think they do what they want with your when you are under and likely twist and turn the patient to get the livers out and then back in.

Mike had a huge hematoma on his right shoulder for MONTHS. He had an existing sports injury there and eventually needed surgery. Maybe they strapped him down there or bent him this way or that.

I think a few of those pills to get you over the hump is fine! You have had major major major surgery.

Are you noticing an improvement in the FOG? Mike noticed that right away. Now 2 years post he is mostly (mostly) back to his old intellectual level. (Thank God.)

Best to you are you continue your recovery.

Hugs,
Carol

Wow,what an inspiration you are !
Glad to read of you doing so very well.

Robin

As long as you feel up to it, Susie. Don't stretch yourself too thin. How far out are you from TP now? A week or so? Be careful.

Hugs,
Connie

I think Susie is August 10th...just a few days ago, really!

Mike was 4 or 5 months before he started driving again.

He hates to be the passenger...talk about back seat driving.  But with the HE, he was a hazard to himself and others for a long time.

Hoping SS is having a quiet weekend.

Carol

 

They blame the flat metal or table for my lower back pain. My moist heating pad makes it feel better. On longer clinic days, I asked for Tramadol as it does not make me drowsy. Hydrocodone puts me to sleep.
I have not driven a car since July 2010 due to HE. I am going to take it slow. Start practicing in my townhouse development which has a cull de sac. then, back route driving to maybe the Quest and local grocery store. Then, maybe more congested local routes to nearby mall. Last step would be highway driving into Chicago. I live about 20 miles southwest of the city. I have never liked driving in snow so I thought I might restart this process early next Spring. With the HE, my response time got very bad and I got very nervous behind the wheel towards the end. I am signed up w/ local Dial a ride so will be able to get out of house after my parents return to Florida at the beginning of October. I will be able to get downtown on commuter train ( hubby drop
Me off at station)and cab it over to hospital. My husband works during the day so my job is to try to recover enough so I can be alone at home with my miniature weiner dog.

ML: I don't feel emotionally flat or in a fog anymore, but my short term memory problems are still w / me. I still forget people's names, the names for certain things. I am making them write all my instructions down for me and will continue to rely on list making to remember what I need to do daily. I am also super emotional right now- and cry at the drop of a hat in relief, happiness, , gratitude and sometimes in frustration w/ myself. I hope this starts to even out soon.

I was offered the liver at 6:30 pm on Auguust 6, but the transplant surgery was from 3:30-8:30 am on the 7thp. so my official tp date is 8/7/2013.
:

I am so grateful to have my 80 year old mom and 79 year old Dad helping me. They are in great physical and mental shape. Must be that Florida lifestyle. They are happy to escape Florida in August and September. Weather here has been great. Highs in mid 70's and sunshine and little humidity. The transplant came at the worst possible time for my hubby. He is an architect whose firm specializes in schools. August is peak remodeling time before school starts in September.

David, I had a couple of nurses I worked with tell me that it takes a year for anesthesia to fully get out of the system. Considering all that I've had, I think I'm still under the influence. I have memory problems, but chalk it up to "old age." Or "creeping senility."

One of the reasons Susie is doing so remarkably well is that she doesn't have hep C. I think those of us with HCV have a rougher time. However, she was quite sick, so it's still remarkable how well she's doing.

Susie, I think your driving plan is great. Also good that you have Dial-A-Ride. We have it here, too, but I never take it as they only work the Beach and I have to go to Mayo a lot, which is over the Intercoastal. I take the Jacksonville Connection Van service, which is door-to-door anywhere within the county. They've even taken me to the airport and picked me up there on return twice. You might check to see if you have such a service up there. You should qualify at this time, since you are unable to drive. I qualify by virtue of my artificial hips, which make it impossible to walk far enough to take a city bus...and now the SOB.

It's great that you have a commuter train and also that your parents are there to help. You will do just fine.

School starts here in Aug., so that wouldn't have worked out well for your hubby if you lived in FL!

Hugs,
Connie

SS

Mike has amnesia for about a year before transplant on all but minor details

From your posts you have sounded pretty with it all along by comparison.

Mike has learned that family and friends came from all over the US to say their goodbyes and cheer me up a bit. He was really out of it for a long time.

After TP he was much better but for hard things. Like organizing the pills and pill schedule etc

He never could have posted like you.

It took a long time for him to be able to function at the intellectual level he once did

He is a big reader and he continued to real all along even when he could no longer follow a tv story line. Bit he has started re reading and he says it is like reading them for the first time!

Hugs
Carol

Post Edited By Moderator (hep93) : 8/17/2013 2:38:21 PM (GMT-6)

Ok Connie I am on the following drugs:
8 mg Prograf 4,1 mg capsule in am, 4, 1 mg capsule in pm
20 mg prednisone, 4,5 mg tablets a day
20 mg furosemide for high calcium urine
20 mg Pepcid to prevent ulcers, 1 in am, 1 in pm
For 1 month
Mepron liquid, 10 ml to prevent infection for 1 year
Nystatin liquid, 5 ml, 4x day to prevent mouth infection for 3 months
Valcyte 450 mg tablets , 2 in am and 2 in pm,prevents infection got 6 months
Magnesium Oxide, 400 mg tablets, 2 in am, 2 in pm Supplement
Vitamin D3, 2000 units only, supplement
Thiamine, Vitamin B1
Aspirin 81 1x day
Potassium Citrate, 10 MEQ tabs , 2 in am, 2 in pm to prevent calcium oxalate kidney stones
Multivitamin Gummies, 2 a day
Tramadol, 50 mg as needed every 8 hours for pain
Hydrocodone/ APAP 1-2 tabs every 4-6 hours as needed max 12 pills in 24 hours for pain

Susie, I didn't take a lot of those meds. They will likely decrease the Pred after a month, not discontinue it. Same with some of the other meds. You are actually on 8.2 of Prograf.

ML, I take cascara sagrada (herbal laxative) every night for constipation. I was taking MiraLax when it was still by RX, but now that it's available OTC it's too expensive for me. The CS is $6 for 100 pills. They just raised the price from $5.

Hugs,
Connie

You are doing remarkably well. Some up's and downs, but geeze girl, just 2 weeks? I do think your positive attitude is a major factor with recovery. I read some transplant boards and have spoken to many transplanted folks over the years. So many have bumps, pick up and get right back to living a life! The happy ending for you after such a tough year....or 3, just amazing!

Stay remarkable.

Big hugs...and one for your hubby and your folks...themiz

Your family must be ecstatic Susie, hope you continue with your amazing recovery :)