HealingWell
Search Close Search
☰

New liver-2

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/26/2012 8:55 PM (GMT 0)
Just an update, we finally made it HOME!  After meeting with the surgeon on Monday of last week, we were told that we could make the 2.5 hour trip home!!  So on Tuesday morning we packed up and headed home.  Everyone was happy to return. 

All labs look  good so far, the Prograf levels are varying but that should level out.  His strength is coming back but very slow.  John has made many comments that he has absolutely no muscle left.  I have tried to reassure him that it will come back in time.  He was also very worried about the stairs at our house since there are about 15 steps going up to the 2nd floor.  After having a 2nd railing put in he has been able to get up and down, the first few days were a little harder!! 

He is eating better now, just still not very much.

We are back to the Burgh tomorrow for a clinic visit but so far everything looks good.

Amy

Posted 8/26/2012 9:04 PM (GMT 0)
Amy, I am so glad you posted today. Home is a huge milestone! Mike cried he was so relieved to be alive and HOME. He even cried when we got to the hotel that first day OUT. He was very emotional...they said it was the prednasone. His being emotional and thankful were a happy relief after all those cranky HE months before transplant.

No need to push. Appetite will come back, muscles will come back. For now it is about the liver learnng to do the 600+ jobs it has in our bodies and about healing good before he starts jogging or doing crunches!!!!!

After a year, they told Mike he could golf...but the poor guy needed a rotator cuff repair and isn't on the links yet!

Best to you both, keep us updated.

And congrats to you both as well,

Carol
Posted 8/26/2012 10:39 PM (GMT 0)
That's fantastic news, Amy! I know you guys are happy to be home. My transplant was 10 mos. ago and I still haven't regained muscle in my arms. I'm supposed to exercise with the broad elastic bands they gave me, but I find the moves difficult to remember and no fun at all. I need to get some light weights. My leg muscles are gradually coming back as I am walking more. It does take some work to get the muscles back.

Here's hoping it will be smooth sailing ahead for John.

Hugs,
Connie
Posted 8/26/2012 11:23 PM (GMT 0)
Amy,
Great news. Welcome home. Hoping for easy recovery and increasing healing and strength for John every day.

Emma
Posted 8/27/2012 12:08 AM (GMT 0)
welcome home... big smile!!! Sandia
Posted 8/27/2012 10:11 PM (GMT 0)
2nd clinic visit today, wounds are healing nicely, surgeon very pleased!!! We dont have to go back for 2 weeks now!!!!!!!!!!!!!!!!!!!!!!! YAY!!!!!!!!!!!!!

He told us keep up doing what we have been doing because the numbers look good and so does he!!

Amy
Posted 8/27/2012 11:57 PM (GMT 0)
Wonderful to hear such a positive report!

Hugs,
Connie
Posted 8/28/2012 2:14 AM (GMT 0)
Yup, yup, yup...wonderful!

Carol

Posted 8/28/2012 2:34 AM (GMT 0)
Amy,
Good deal. Way to Go.
Angie1953
Posted 8/28/2012 3:36 AM (GMT 0)
We love good news
Posted 8/30/2012 12:34 AM (GMT 0)
All great news Amy & John!! Phil is just shy of 7 mos. post TP and he still has no muscle. He gets tired sooo fast from no muscle that he pays for it for days when he does anything requiring , muscle and stamina. He's also experiencing alot of pain in his shoulders, probably arthritis that is getting him down. He goes for x-rays next week and an appt. w/his PC doctor . . I think she plans on scheduling him some in house physical therapy . . . he won't do it at home cuz it hurts. If he has to do it at the VA he won't like it, but he'll do it, and I'm sure it will help. Those stairs are gonna be a challenge for John . . once he gets the stamina for that its all better from there!!

Good Luck to you both and thanks for the wonderful news!!

Debbie
Posted 9/10/2012 4:55 PM (GMT 0)
Well clinic appt last week went good, John's 3 spots are healing well, surgeon is very pleased with the progress.  Most of the blood work is looking good.  Doc is a little concerned with the gGTP labs.  He has scheduled an ERCP procedure for next Monday.  When they did the transplant they had put a stent in the bile duct.  Prior to leaving the hospital it was still in place.  We have to go get an xray this week and either confirm that it is still there or it is gone.  If it is still there, they will remove it and make sure that the bile duct is working correctly or they will put in a new stent.    Of course he is a little apprehensive about being put under again for the scope,  I keep telling him that this is a quick procedure and that we will be home by dinner time that night.  Anyone else have a stent there and then had it removed.

On a better note, during PT on Friday John walked around the block!!  After the therapist left, he was ready for a nap!!  He is getting better on the steps and soon I bet he will only be using one railing to go up and down.

Hope all is well with everyone else.

Amy

 

Posted 9/10/2012 5:38 PM (GMT 0)
Amy, nice to read such good reports about John! I didn't have stent placement in the bile duct, but did have a drain for a couple of weeks. They did a series of ultrasounds of the bile ducts. I had to have 3 clear ones (no clots, etc.) before they would remove the drain.

Transplant is a HUGE surgery. It absolutely knocks you for a loop. In the beginning, I was going on false energy from Prednisone. As that decreased, I realized how weak I was. It does take time and work to regain muscle and strength. The stair climbing is actually going to be good for him.

Hugs,
Connie
Posted 9/10/2012 5:52 PM (GMT 0)
Tell him to keep using both rails, well beyond when he thinks he's fine. A fall would be a huge setback in his recovery. There's nothing wrong with needing help.
Posted 9/10/2012 7:23 PM (GMT 0)
Good advice from David... bones take a lot longer to heal when there is not a lot of muscle on them. Go easy.

Peace,

Marie

Posted 9/10/2012 10:28 PM (GMT 0)
"bones take a lot longer to heal"

EVERYTHING takes longer to heal when one is immunosuppressed. Speaking from personal experience.

Hugs,
Connie
Posted 9/11/2012 1:39 AM (GMT 0)
I agree with the take it slow and also about the Prednisone statement Connie mentioned. Since Phil got off it, he has alot less energy. He is also having other issues that we are addressing Friday with pain in the shoulders and lumbar . . alot of his joints . .it's too painful for exercise. PC is thinking its Arthritis . . I'm hoping its not the HCV causing the fatigue . . got a viral load in the last blood work soo . .

Amy and John!! I am soo proud of you both and love hearing about the positive recovery and hope things continue to be positive!!

Debbie
Posted 9/11/2012 2:27 AM (GMT 0)
Debbie, in my case fatigue IS from hep C. It showed up with a vengeance about a month after transplant and viral load a short while after that was 3 million. Also, Prednisone does a number on bones. I'm now experiencing joint stiffness and pain in my fingers, including a trigger finger, as well as rt. knee pain. I had none of these prior to taking Pred. I've had x-rays taken of my hands and will have a consult with a hand specialist at Mayo tomorrow morning. I have an MRI of my rt. knee scheduled. I've had bilateral hip replacements as a result of osteonecrosis...wondering if the knee is also succumbing to that. Mayo has also diagnosed me with osteoporosis, which happened after 4 mos. of Prednisone.

Just things for transplant patients to be aware of.

Hugs,
Connie
Posted 9/21/2012 3:16 AM (GMT 0)
On Monday, John had the stent removed from the bile duct.  The duct is working and no other stent was needed.  The trip to Pittsburgh was long but we dont have to go back til October 1st.  Thank goodness!!  Everything else is going good.  PT and his visiting nurse discharged him today, they both said that he is doing very good.  John is no longer using the walker and is still getting a little stronger every day!!  And he is eating much better also. 

I just wanted to give a quick update as to his progress!!!

Amy

 

Posted 9/21/2012 5:07 AM (GMT 0)
Amy, thanks so much for the update!! So happy to hear that John is recovering well from transplant. He should feel a little stronger each day. Please continue to keep us updated!

Hugs,
Connie
✚ New Topic ✚ Reply