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Posted 6/9/2011 11:56 PM (GMT 0)
I am sooo . . happy!! My husband got a call from his doctor at the VA today!! He has been accepted in Philadelpia PA @ the VA medical Center there for his transplant evaluation!! She is making all the arrangements for flight, hotel and tests/appts and will be contacting us soon!! smilewinkgrin our spirits are high, and we are hoping for a positive outcome!!

thanks to all of you for helping keep me positive and all of your excellent advise and experience!!

Debbie

Posted 6/10/2011 12:23 AM (GMT 0)

Debbie, thanks for sharing your wonderful news!  Try to keep us posted, if you can.  Will he need to go there and wait for the call or wait at home and be notified when a liver is available and then go to Philly?

Hugs,

Connie

Posted 6/10/2011 12:41 AM (GMT 0)
An extra Woo Woo from Mama Lama Land!!!! Glad for the great news.

Carol
Posted 6/10/2011 12:56 AM (GMT 0)
Connie, he will be coming back home to Tampa Bay until a liver is found. The VA here notifies us when there is a liver and from what I understand Medivacs (helicopter or plane) him/us to Philly for the actual transplant. I'm sure we'll get all of that info when we go up for the evaluation . . I sure hope its soon . . I haven't stopped crying since I found out!! He smiled a real smile today . .first time in months!! I feel confident I am going to get my husband back!! thank the Lord, AMEN!!

Thank you Mamma Lama . . I hope your hubby is still doing well!!
Posted 6/10/2011 4:04 AM (GMT 0)
Debbie-so happy for your good news.  Please keep us posted on progress.  Prayers and positive thoughts to you both.

Emma

Posted 6/10/2011 4:39 AM (GMT 0)
Debbie, when you guys go up there for his transplant evaluation, plan on staying for a week. The evaluation is really extensive. I don't even know if they can do it all in a week, but they may let some of the tests be done locally in Tampa (like 24-hour urine and some blood work.) Make arrangements for pet care, mail pickup, house checking, etc., before you go.

Hugs,
Connie
Posted 6/10/2011 1:57 PM (GMT 0)
As a wife of a Vietnam Veteran......YAY!  Not sure how the testing will take place, but my husband was only in the hospital 1.5 days for all the tests.  He received his transplant (not through the VA) February 3, 2011, and he's doing GREAT.  I wish much happiness and success for you guys!  Pam and Ron
Posted 6/10/2011 2:09 PM (GMT 0)
Another WOOOOWOOO from me!!!!!! That's fantastic news........ yeah yeah yeah
Posted 6/10/2011 7:13 PM (GMT 0)
More great news . . the evaluation is scheduled for July 19th in Pittsburg, not Philly . . my husband gets confused easily these days!! The Va here arranges the flight and the VA in Pittsburg arranges the trasnportation to and from the airport and the hotel, which is right accross the street. We found out it is all outpatient . . .no over nights in the hopsital, but we will be there all day every day. i will be bringing my laptop to stay in touch . .

thanks to you all for all of the positive feedback !!

Connie, our son lives 5 minutes from us, he's taking the dog and bringing the mail in the house . .also our neighbor is on disability and he's going to come over everyday and check the house for us!!


thanks to all of you again

Debbie
Posted 6/10/2011 9:27 PM (GMT 0)
Debbie!

WOO HOO!!! Congratulations! Doing the happy dance for you! yeah yeah yeah yeah

Mer

Posted 6/10/2011 10:24 PM (GMT 0)

Debbie, did they give you any indication of how long the testing would take?

Pam, they seem to have done a lot more testing and consults with me at Mayo.  There's no way that could've been done in 1 1/2 days.  I had a total of 22 appts. and not done yet!  Maybe because of the HCC, they've done extra...blood 3 x and nuclear bone scan, though that last one was before the evaluation started.

Hugs,

Connie

Posted 6/11/2011 12:47 AM (GMT 0)
Connie, no we haven't gotten the actual appt. schedule yet. We are awaiting it in the mail, but it's 7 days . . I'm not sure about the weekend . . from what I gather we are going to be there over the weekend. I'll let ya'all know when we get the info in the mail . . I am soo excited . . the family is so so happy!! His meld score needs to go up for him to get the transplant quickly . .I think its 15 right now, but I have to ask his doctor. I'm sure it changes . . I can tell the difference in how he's feeling by the color of his urine. the darker it is the worse he feels. Is that from the kidney part of the meld score?

talk to you soon

debbie
Posted 6/11/2011 2:26 AM (GMT 0)
If his creatinine is high, then yes.

You guys are very fortunate to have plane and hotel costs provided.  Most people are on their own with that.  The VA is doing something right, after all.

Hugs,

Connie

Posted 6/11/2011 3:49 AM (GMT 0)
Debbie,

My Mike is just 6 weeks post tx.

He has had Hep C since 1970, failed treatment 2003.  Continued to drink alcohol and his liver was shot.

His MELD was 23 or 24, I forget in the fall when he was referred to the transplant center, but because he was actively drinking he had to do a program and be alcohol free for 6 months.  Once he joined AA and was alcohol free about 2 months they decided he was serious about this transplant thing and started his evaluation...not like you guys are going to do at the VA with a marathon evaluation period, rather he came once or twice a month for this and that.

With no drinking and all the meds:  lactulose, aldactone, lasix, xifaxan, etc etc he was actually a bit better. MELD around 17, 18.

He was hospitalized 4 times while waiting with acute renal failure, peritonitis, acute pancreatitis and renal failure again. They'd pump him full of flud and IV stuff, maybe give him some plazma and he'd be good to go for a little longer.

He was listed in February 2011.  They found a heptocelular carcinoma about 2.5 cm about the same time as he was listed.  That bumped his MELD score to 22 quickly.  The cancer was reconfirmed in April and he got the call April 30th for a May 1st surgery.

So, once they got him worked up and found that tumor...he got his liver quite quickly.

Some wait a longer time.  I looked at the UNOS statistics for our center and his MELD was about average for those transplanted here...22.  And I was able to see that there were only a few with his blood type, age group and diagnosis in line.  It gave me great hope to track the statistics. 

He was transplanted at Jackson Memorial in Miami FL.

He is resting comforably at home, doing more each day.

I hope you have a happy ending too.

Posted 6/11/2011 4:14 AM (GMT 0)
Debbie,
Congratulations! That is great news! I love hearing that some stories here have happy endings.
I hope it is soon for you both and that all goes well.
Posted 6/11/2011 7:38 AM (GMT 0)
so happy for you to have had good news, reading the stories that progress in such a positive way makes coming here heartwarming and restores my faith in the human race!!! good luck.xxnatasha,xx
Posted 6/11/2011 3:56 PM (GMT 0)
Debbie-great news.

Emma
Posted 6/12/2011 3:02 AM (GMT 0)
All of you have saved me from myself!! I was really low and very depressed when I found all of you. Your experiences, advise, knowledge, and support turned me around to a much more positive attitude.THANK YOU!!!


Since joining my friends here, we have stopped eating red meat, and I beleive it has helped my husbands condition. I learned that here, from several of you!! I've also learned what all these medications he is taking is actually for. I worked for 3 months before i was laid off, so he was going to the doctor alone, and he'd come back with a new medication and said they just told me to take it??!!

I can't wait to get the schedule for the evaluation so I can post it and all of you can put it in laymans terms for me, so i know what is actually happening.

thanks again to all of you, and i do mean all of you!!

Debbie
Posted 6/12/2011 3:23 AM (GMT 0)
Debbie,

My husband's transplant evaluation was actually done in one "marathon" week! It was a crazy week, but I am glad it was done in a week! Let us know once everythin is scheduled.

Again, so happy for you!

Mer
Posted 6/12/2011 3:54 AM (GMT 0)

Debbie, you might want to read my Transplant Evaluation thread.  I break down all of the tests, etc., that are part of the evaluation for placement on the list.

Hugs,

Connie

Posted 6/12/2011 1:38 PM (GMT 0)
Connie, I have been reading it, and some of it I understand, and some I don't. I am going to compare his to yours and make a list of questions of things i don't understand and address them with his doctor here and there if needed. I am so excited about all of it . .

thanks again

Debbie
Posted 6/12/2011 7:34 PM (GMT 0)

Debbie, if you have questions about my testing/appts., I'd be happy to answer them for you as best as I can.  My e-mail is in my profile if you'd rather do it that way.

Hugs,

Connie

Posted 6/16/2011 2:32 PM (GMT 0)
We rec'd a call yesterday about the hotel info and some of the testing info. We are going in style . .the Hoilday Inn!! WOOWOO!! The day we arrive we go straight to the VA Medical center and he does his bloodwork . .15 viles I think, and then the next morning, after fasting, he has CT scan and untrsound, theres alot more, I could not write that fast, but we are receiving a package with all the info, so . . Friday, supposedly the last day there, we meet with the transplant team and discuss, review and ask questions, and then off the the airport for the trip home. If the tests show anything questionable and require more testing we will be staying thru the weekend and afew more days thru the next week to get that completed before we go home.

I went and got a note book/binder for record keeping and staying organized!! Thanks to all of your posts . . I was aware that this is a good idea!! Thanks to all of you!!

I will keep you posted . .we are in really great spirits right now, even my husband with his huge belly and swollen ankles and legs!!

Debbie
Posted 6/16/2011 10:11 PM (GMT 0)
Got our info from VA Pittsburgh today . .
Arrive July 19th, get arm band/ID and go to lab for bloodwork
July 20th Ultrasound and CT Scan, then chest xray
July 21st Physco eval, EKG and Anesthesia . . counseling I think
July 22nd Liver transplant clinic to meet with TP doctors
then back to airport if there are no additional tests required

Still waiting on the flight info from VA here at home

Debbie
Posted 6/16/2011 10:14 PM (GMT 0)

Debbie, I'm glad everything is coming together for you.  Your hubby's testing is already better than mine:  I had to give 29 vials of blood.  And then they did some 1-vial ones on a couple of occasions.  They also have added some tests. With any luck, I'll be done the end of the month.  And this started in May.

I got folders of info from the class I went to that included talks by a nurse, a dietitian, and a pharmacist; also from the SW, and a meds/specialty pharmacy one.

Very best of luck with everything!

P.S.  I guess you were posting at the same time as me.  Good that you got your schedule.  I would say they are doing minimal testing, compared to what I've had so far.  Of course, with liver cancer, they've done extra ones.  But your hubby is not having a stress test or a pulmonary function test or psychiatric exam?  Or an echocardiagram?  From what others have posted, I think Mayo is just extremely thorough.

Hugs,

Connie


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