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Posted 5/17/2011 3:27 PM (GMT 0)
It is a rollercoaster ride - I remember Ron was at the doctor/hospital/ER so many times prior to transplant. You're right - it is a fine line...when Ron first started on the list - he was in good health (except his liver) - but a few months later and things began to get out of control. We prayed and waited - tried to do the right things (diet, medication...etc). I'm praying that he's put back together and you guys will get on with your journey. Best to you and Mike. Pam
Posted 5/17/2011 5:28 PM (GMT 0)
good luck to you both, thoughts and prayers,xxnatasha.xx
Posted 5/17/2011 9:34 PM (GMT 0)
Thanks everyone for your good wishes....

Mike, Hubby had to go through an evaluation process with the following specialists/tests before being listed for transplant in South Australia:

Echocardiogram; CT Scan of Abdomen; Ultrasound of Liver; Lung Function Tests; Chest Xray; Bone Density Tests; ECG; Dentist; Social Worker; Dietitian; Physiotherapist; Cardiologist; Anaesthetist; Psychiatrist; Transplant Education Session.

The specialists and liver team meet on Friday's each week to discuss 'the list' and decide who makes it.

He was an inpatient while these tests/appointments were being done, as he was so sick at the time, having had kidney failure etc. Initially he was denied transplant, but then after giving up smoking and meeting with DrugArm they decided to list him in March. Since the 8th Feb he has only spent three weeks out of hospital, and is getting weaker and weaker.

I'm not sure what the process is in NSW, but it sounds like you didn't have to go through this with all the different specialists etc....? Is that right?

RCMoon & ML - Thank you for sharing your experiences, it makes what we are going through somehow sort of 'normal'. Sometimes I worry that he will be too sick and not make it; but we have to stay positive and I can't afford to lose my bundle and have it affect his attitude.

Thanx again everyone xx
Posted 5/17/2011 9:57 PM (GMT 0)
Here is a link to an information manual published in 2005 by RPA. It has info on how the evaluation process works in NSW.

Australian National Liver Transplant Unit Manual
Posted 5/17/2011 10:02 PM (GMT 0)
Mike was being evaluated for transplant by the team at the Rochester MN .... its is pretty much the same process checking every crevice ... every part of the body... or anything that could go wrong... its all part of the process... a very rigorous one... sorry its so tough.. Sandi
Posted 5/17/2011 11:35 PM (GMT 0)

Goddess, they don't have me seeing a dentist or physiotherapist, but I do have all the ones you listed plus about 10 more (half of them meetings with transplant nurse, social worker, financial counselor, hepatologist, etc.)  They don't have me scheduled for a cardiac cath...maybe they will if there are cardiac problems, but I've never had any.

I'm sorry your husband is so very ill.  Has he been able to complete transplant evaluation?

Hugs,

Connie

Posted 5/18/2011 1:22 AM (GMT 0)
Goddess, Hello ,I've had all the CT scans Ultrasounds etc over the last month and a biopsy to boot . I'm under the impression from Prof V all I have is the Anaesthetist and Psychiatrist and education to go . I've also been told by another DR that is under Prof V that I'll never get a liver because of my blood type AB- . There's one person already in front of me . To my way of thinking nothing seems like it is .I didn't do AA ,but seen Prof V every 2 weeks and now 3 , I wouldn't be alive if I had drank . I don't know why they have a team of people working that out . Once again I wish you and your man all the best .I know how he is feeling and it's tough going but there is a light at the end of the tunnel.
Mick
Posted 5/18/2011 4:00 AM (GMT 0)
Hepmom: Thanks for the link to the RPA guide for liver transplant - I thrive on information from all sources and experiences, so although we have a similar publication from Flinders, I will read that one through too.

Connie: Yes, hubby has completed evaluation and is/was on the list, pending this latest setback. Once he is out of ICU and back on the wards he will continue to be 1st on the list for his blood group O+. Good luck with your evaluation process, it is a tiring drawn out affair, but think of the potential rewards at the end....

Mick: My Hubby didn't do AA either, but his specialists relied on my vouching for him not drinking, and he did attend a few DrugArm sessions (mostly been in hospital the rest of the time, so couldn't go to many). I'm sorry that you have a rare blood group, but hopefully the wait won't be long for you.... Are you very sick at the moment? What is your MELD?

Thanks everyone for your kind thoughts.... Hubby's creatinine is up now, so they are looking at his kidney's again, still on antibiotics for staph infection, and more blood products overnight.... BUT still hanging in there!!
Posted 5/18/2011 11:59 PM (GMT 0)
Hello Goddess,
At the moment I'm battling fatigue ,vertigo ,severe cramps (even when I yawn) and the icing on the cake ,unsteadiness on my feet. My MELD is currently 12 and I'm back in hospital on Monday for re-banding and Thursday appointment with Prof V.
Take care ,all the best Michael .
Come on Aussie
Posted 5/19/2011 1:46 AM (GMT 0)
Mick,
Drink more water for one thing. It helps with cramps. For almost a year, I didn't dare move without leg, foot and hands cramping. Hands were the worst. I'd have to push my hands against a flat surface or they'd curl up into claws. Now is the toughest time. Transplants take care of most problems you're now dealing with.
Posted 5/19/2011 6:40 AM (GMT 0)
David, I drink 750ml beetroot/apple juice , 500ml's water ,250 ml's of organic tea . I'm only supposed to have 1200 ml's liquid daily . Cheers mate.


Goddess ,my MELD is 21 not 12 . After being steady for awhile on 10. Cheers


Mick
Posted 5/19/2011 7:33 AM (GMT 0)
Hi Mick,

I sympathise with the vertigo - its the only thing I can really relate to in your list... I get it from the planes going to and fro to Adelaide and especially from the lifts in the old hospital wards. Really messes with my balance and headspace, so I can only imagine what you must be feeling on a daily basis.

I'm sorry that the MELD is higher than 12... I thought you may have been lucky to get listed at that score, or that eligibility may have been lower for the rarer blood type.

Nice to hear you are keeping your fluids up. Hubby could not stand beetroot even though it is so good for the liver, so you are doing really well.

Good luck with the rebanding, and all the best with your Prof on Thursday. Wishing you good health, always.
Posted 5/19/2011 11:02 PM (GMT 0)

Mick, I also want to wish you luck with the rebanding procedure.

I have 0+, which is a very common blood type.

Hugs,

Connie

Posted 5/20/2011 12:32 AM (GMT 0)
I am B+. It helped me to get a transplant. There's less competition for unusual blood types.

Mick,
Don't be discouraged that there's someone ahead of you. There were 2 people ahead of me with the same blood type, but they decided I was the best candidate. It isn't simply MELD scores that close the deal.
Posted 5/20/2011 12:57 AM (GMT 0)
My Mike is O positive also.

Two ways to look at it...most commonly requested, most donors!

It works out how it is supposed to work out!

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