Pre transplant doldrums

[Waiting-in-wiltshire]

Hi, my partner has been on the transplant list for 3 months now. He is at home & fairly stable though bouts of HE & SBP have meant some longer stays in hospital. I would love to connect with others who are waiting, or perhaps post transplant, with tips, advice or support.

[Hidden]

Hi Wiltshire,

The wait depends upon his general health, he is on the list, frame and blood group. No one can say how long the wait will be, I take it you have searched for a living donor?

You probably go to either Kings or the Royal Free, bit of a journey so you’ll need to get used to it. Also note you might get the call, get the ambulance in, to be told the donor organ is unsuitable. Make sure there is money to get home. My wait was 19 months, type B blood.

One more tip, the overnight bag, you really do not need that much, phone charger, toiletries and a change of clothes. Hope your wait is short.

[Waiting-in-wiltshire in reply to Hidden]

Hi Snoutie, thanks for replying. I can't imagine the toll a 19 month wait takes on you! I have the route planned, parking planned & somewhere to stay for the first few days, although we may need an ambulance or escort if its rush hour! We met a chap in the free while having the tests, he had 8 false starts before getting his transplant so we have fairly reasonable expectations. How are you now?

[Hidden in reply to Waiting-in-wiltshire]

Hi Wilts,

I can’t imagine 8 non-starters, that would be so emotionally exhausting. Royal Free for you then, Waterloo and Northern Line? So much easier than driving in London.

You’re done the assessment and plenty of research, two pieces of advice. Your focus will be on the transplant but give thought to post transplant, I didn’t and it’s a whole new ball game, this never goes away but the precious gift is life, everyday is now Christmas. There is no point visiting until your partner has cleared ICU (doolally land), he’ll go to 9North, most likely. The excellent transplant coordinators will keep you well informed.

Thanks for asking, my transplant was a great success, for which I am eternally grateful, to my donor and the transplant team.

Feel free to ask anything you may think is helpful.

Mark.

[Huggy7614]

Hi Wilts,

I also live in Wiltshire. Haven’t got to tp list yet, still with gastro at Ruhbut he has been talking for a while about an early referral to Q.E Birmingham. Came up again at last consult, sounds like he wants me to be there in less than a year.

If your partner wants to chat to someone vaguely local I’d be happy. He’s clearly further on than me, but always happy to join in a rant!!! Live in the middle of the county.

Andy.

[Waiting-in-wiltshire in reply to Huggy7614]

Hi Andy, we also spent a short time with the RUH but now being looked after by the amazing team at the John Radcliffe in oxford. The excitement of getting on the list was overwhelming, but boredom is the biggest enemy now along with his frustration at not being quite well enough to start a project or have a little part time job. Rant away, we're listening!!

[Adelou]

Hubby waited 4 days from going live after signing the consent, we laughed when the consultant at the Royal Free said he would see us in a couple of weeks. What we found strange when doing the consent forms as that some people will turn down a donated liver as it doesn't meet their personal preferences even though medically it is a match. That is what happened toy hubby, the person who it was intended for turned it down, it was a perfect match for hubby & an hour after arriving at the hospital he was taken down to theatre

I was the one at home stressing & feeling overwhelmed, he was none the wiser because it happened so quickly.

This was back in May & just 3 weeks after they changed the waiting list rules to make it a national list instead of regional list. We also thought that because of the rule changes we would be waiting ages

It will happen, just be ready, you only need a small bag with pjs & basic toiletries as they get stored away until they come out of ICU.. hubby had the transplant on the Saturday at 6pm ended at 1am with a minor bleed & was on the main ward on the Tuesday & was discharged 2 weeks after the operation.

Apart from being readmitted due to high potassium for a week's observation & a change in anti rejection drugs he has had a remarkable recovery so far

[Waiting-in-wiltshire in reply to Adelou]

Wow Adelou, that's so lucky. While we were having our talk with the coordinators he of the couple asked if it was ok to go on holiday to Spain while on the list! We barely have the courage to leave the county for fear of missing the call!!

So Good to hear that the op was a success, its difficult to imagine a life without all of the symptoms & drugs & food supplements.

[Adelou in reply to Waiting-in-wiltshire]

If you go more than 200miles away you need to be suspended on the list & are then reactivated upon your return. We wouldn't have even thought of going abroad in case he was too ill while we were away. We did during the first year of being but it had already been booked & he was a bit healthier then. Both of our parents are up North, we live in London but they said they would get us back if the call happened while visiting family.

6 months on I still wake up some mornings & can't believe it happened, I think over the course of 3 years I had gotten into a routine of getting up going to work coming home, looking after hubby, not being able to go anywhere because he's was too ill, cancelling plans when things got bad...now it's strange making plans to do things ..we have a life again

[Waiting-in-wiltshire in reply to Adelou]

It's so true Adelou, we live day by day depending on how well he is. I'm very lucky that we were able to afford for my to stay at home, working full time & trying to get him to the endless hospital appts was exhausting.

[Hidden]

Hello Wiltshire, firstly may I say a very special welcome to you. Having to live with a partner who has HE is not at all easy, if anything it can at times put a big strain on any relationship. But you must be one of those special people who stick by their partner no matter what. Well done for hanging in there and sharing this difficult time together.

The wait can seem like a frustrating time and your heart skips a beat every time that phone rings. There are a lot of different factors as to why your partners having to wait. His size and blood type will be a factor and his general health. If his condition is not so life threatening, then the wait maybe delayed, as more urgent cases will need to be considered first.

It goes without saying, that you'd all like to start the new year with a new lease of life and I can say it'll be the best ever gift that anyone can possibly receive. It's going to be a long climb back to full health so don't go trying to rush things once he's home, again like booking a holiday, or trying to see if the marigold gloves still fit.

I'll keep my fingers crossed and hope that the wait won't be too long for you both.

Good Luck

[Waiting-in-wiltshire in reply to Hidden]

Thank you Richard, what a lovely message. HE can be challenging but we have support from family & friends who do their best, but hearing from you all who have been in similar circumstances is really helpful - there's light at the end of every tunnel, otherwise it would be a cave!

[andy-g]

Hi, I know the agony of waiting I only went 4 times , twice in 24 hrs. I found the easiest way to deal with rejections was to go with no expectation but hope for the best. Yesterday was my re-birthday ( as I call it) 2 years post transplant. I still can't really believe it happened but what kept me going was never doubting that one day it would and making sure every day waiting was the very best day for me and those around me. Everyone has a different story , I hope yours is one of success. I wish you all the best . Just remember today is the best day you have.

[Waiting-in-wiltshire in reply to andy-g]

Happy re-birthday for yesterday Andy! Holding on to the good days & looking forward to longer term plans keeps us sane - mostly! I find his frustration one of the most upsetting things as I can do nothing to alleviate whichever symptom is causing pain & discomfort. Knowing that all of these will be gone one day makes it bearable.

[andy-g in reply to Waiting-in-wiltshire]

Hi, you are really important and sometimes it is hard to know what you can do. I saw many couples in hospital I had weekly ascetic drains and often frustration or helplessness was an overiding aspect .But in the good moments the gratitude was obivous. Those of us going through the mire of this illness feel a kind of guilt about our situation. I went through my whole journey alone , my sons could not accept it and I did not to burden them. Sometimes a kind word , a smile can be the greatest gift. People forget the burden and the pain loved ones go through. You are great to stand by and help and your strength is what will see you both through. Stay strong and share that strength with your loved one. It means the world believe me. I wish you both th very best and looking to hearing that you finally get the transplant and we can welcome him to that small and ever grateful special club.

[Waiting-in-wiltshire in reply to andy-g]

Amazing to have got through this on your own, it must have taken a lot of strength, I hope your sons are back in your life now.

[andy-g in reply to Waiting-in-wiltshire]

Sorry I did not reply before been of the grid. My sons actually all live with me. Being needed kept me going. Still needed still going. I hope all is well with you stay strong. Thanks for your reply.