HealingWell
Search Close Search
☰

From ML...they got THE call!

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
1 2 34
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/7/2011 11:43 PM (GMT 0)
Carol, if they didn't disclose that the liver had hep C, then it didn't.

Emma, I also have very positive feelings about your guy, too.  The longer he is sober (hopefully forever more), the better he's going to feel.

Hugs,

Connie

Posted 5/8/2011 12:22 AM (GMT 0)
I am finally feeling positive about things too Connie. He had some stressful times this week at work...had to fire 2 guys...one that is only 23 and supporting his mom...he didn't want to let them go, but the owner wanted them gone. he was so mad...and I was concerned about how he would deal with the stress and anger without drinking. But, he did great. Stormed around with a mad face, calling the boss names, then was quiet, and by bedtime he was himself again. Learning new ways of coping and behaving.

I have been telling him about ML's hubby (and about Ron too). Showing that there is always another treatment that can be pursued if his health takes a bad turn. But he is doing really good following doctors' orders!

Emma
Posted 5/8/2011 1:11 AM (GMT 0)
I can't say what you'll be taking after a transplant. In my case for the first 3 months my meds were about the same quantity as before the transplant. Then the docs cut much of the meds out. It also depends on how much your system needs to keep the rejection at bay. I take one med (prograf) for that and my dose is as minimal. Now, I take less meds, with less side effects than before. Not everyone has had the same experience.
Posted 5/8/2011 1:24 AM (GMT 0)
David-does that mean that the chance of rejection reduces over time? --- so that your does of anti-rejection meds is minimal?
Posted 5/8/2011 1:52 AM (GMT 0)
Hi Carol,
Glad everything is going so well , Told you Irish men are fighters .Will keep in contact with you personally. Give Mick our regards . Thinking of you both.
Take care Karen and Mick
Posted 5/8/2011 1:58 AM (GMT 0)
Emma, glad that he is coping well.  When the anger goes on too long, remind him to "Let Go and Let God."  That's one of many coping tools we use in AA.

Hugs,

Connie

Posted 5/8/2011 2:38 AM (GMT 0)
Healthynow,
Everyone is different when it comes to anti rejection meds. At first I was taking 2 meds, cellcept and prograf. Both meds doses were knocked down and at 6 months, the cellcept was discontinued. Another 6 months and the prograf was reduced to a minimal amount. I have spoken to people that have had their doses go up, then down, then up. I've been lucky, in that my immune system has stayed consistent. There are those folks that take less than I do.

Here are the meds I take:
prograf- 1 mg. x twice a day
bactrim- antibiotic 1 pill am
omeprazole- 20 mg. am
fish oil- 1,200 mg. x twice a day
trazadone- 100 mg. before bed

The only med that had a side effect was when I was first taking prograf, 3 mg. twice a day. Prograf is very powerful stuff and some patients feel shaky, mostly in their hands. It also made my toes feel a little numb. Once my dose went down, the side effects disappeared.
Posted 5/8/2011 2:58 AM (GMT 0)
You asked about whether your chance of rejection reduces over time. I've never asked the question, as they tell you up front that you could have rejection problems a day out, or a decade out. I know the signs to look out for and with blood work done monthly, I feel fine.
Posted 5/8/2011 5:05 AM (GMT 0)
With regard to the anti rejection meds, my brother in law had his liver transplant 19 years ago (and he is still going strong), and I do remember him saying that he started out with large doses of the anti rejection meds, but then have reduced the dosage over the years. Yes, the anti rejection meds will be taken for the rest of his life, but I think over time the dosage was decreased. Hope that helps

Mer
Posted 5/8/2011 5:46 AM (GMT 0)

MamaLama said...
@ connor

we have not asked about the donor though i peeked at the obit in the miami papers this week as they did tell us it was "local."

carol

Carol, This is such a serious conversation but I must admit when I read this I laughed picturing you looking in the obits!

Take care Karen

Posted 5/8/2011 9:00 AM (GMT 0)
so pleased to hear things are going well for you both. xxnatasha.xx
Posted 5/8/2011 2:44 PM (GMT 0)
I looked for my donor as well. I didn't find out who it was, as local could be someone from a hundred (or more) miles away. Twice I heard nurses outside my door mention that my donor was a 12-13 year old boy that had taken the family car for a ride and crashed it.
Posted 5/8/2011 6:08 PM (GMT 0)
Carol e-mailed me a pic with the reference line "Cruising the halls."  Mike was walking the hallway with Carol and their young granddaughter.  She gave me the OK to post the pic here, but I wasn't able to do so (not good with graphics.)   His color is good and he really looks wonderful.

Hugs,

Connie

Posted 5/8/2011 9:57 PM (GMT 0)
Thanks for the update on ML's Mike Connie!  What wonderful news.  Anyone around that can help you post the picture?

Go Mike!  Go!  Glad your recovery is progressing.

Emma

Posted 5/8/2011 10:54 PM (GMT 0)
Not around here, Emma.

Hugs,

Connie

Posted 5/9/2011 4:09 AM (GMT 0)
Tomorrow is day 9. Mike getting out!

Our plan is to stay close at hotel near campus where we have (or I have) stayed before.

He will have bloods drawn every few days while they adjust his antirejdction meds. And since we live over 100 miles away we think the trips would be too difficult

Once we have his meds settled some and feel more confident with his regime, we will head to our e and do blood draws at our local lab.

But they want you to see the docs the first few times

I am a little nervous about being on our own so quickly

Thanks everyone for si many nice notes

Hugs

Carol

He walked quite a bit today. But out on your own after complete bedrest and a 6 day fast is going to take a lot of energy.
Posted 5/9/2011 10:23 AM (GMT 0)
That's so great Carol , Glad Mike is doing so well. How are you doing Carol ? Take care and keep in touch.
Thinking of you both
Karen and Mick
Posted 5/9/2011 11:10 AM (GMT 0)
I am fine

But have a problem today. There is a huge brush fire in the Everglades that started with a lightening strike days ago

The wind shifted in the night and downtown Miami is full of smoke

I woke at 4 a m with a burning feeling in my chest I thought some jerk was smoking bad pipe tobacco downstairs. Called front desk and they told me about the fire. Then mike dinger in from hospital. It stinks on the 15th floor too.

I have asthma and have a COPD dx, so stinky fires are rough for me
I know I know, Im being a diva and need to get over myself

Wind should change this afternoon. Hope so
Gonna grab a shower and head over to spring my man out of the hospital!

Carol

Post Edited (MamaLama) : 5/9/2011 8:02:46 AM (GMT-6)

Posted 5/9/2011 1:46 PM (GMT 0)
Tell Mike to take things easy, but short walks every few hours really help you to get in shape. Also, ice cream is a good way to get nourishment.
Posted 5/9/2011 2:04 PM (GMT 0)
They started him on way too rich food. He feels better on a very lite diet. Ice-cream is a good idea, David. He loves that and sorbet.
Posted 5/9/2011 3:56 PM (GMT 0)
I have been reading the progress and thought I would pop in quickly so say Hi, I hope Mike continues on with a fantastic recovery. Hopefully you guys can go home soon as long as everything is going so well. ML please remember to rest and take care of yourself.
Take care
Rose
Posted 5/9/2011 5:26 PM (GMT 0)

Carol, before you guys leave, grab some of those face masks for both of you to filter out the smoke!  We have the same thing happening here, but to the west and north.  With the beach breeze, it won't make it here.

I know it's scary, but you'll be staying near the hospital for a bit, so don't worry.

P.S.  An ice cream diet?  Now that's a real positive for moi having a transplant

Hugs,

Connie

Posted 5/9/2011 8:53 PM (GMT 0)
Almost everyone that I met in the clinic while recovering from my transplant (and theirs) was eating lots of ice cream. The main reason is that food had no taste and no one was very hungry anyway. Ice cream went down easily and there was some taste to be had. If nothing else it was soothing. My taste didn't come back fully until 3-4 months after the transplant.
Posted 5/9/2011 9:00 PM (GMT 0)

Since we are on page 4, I'm going to ask Carol to start a new thread.

Hugs,

Connie


Posted 5/10/2011 2:43 AM (GMT 0)

UPDATE:  ML/Carol's hubby, Mike, has been discharged from the hospital following successful transplant.  They are continuing to stay at the hotel near the hospital for awhile.  She is too tired to post tonight, but hopes to start a new thread tomorrow.

Hugs,

Connie

✚ New Topic ✚ Reply
1234