As I said in a previous post, our son has his last 2 day assessment 23 & 24 March and has been told he could, after the Transplant team meeting the following day..Good Friday, lets hope it is...be on the transplant list..
How do folk manage this period being on the list...Keep the car full of petrol, we have got 130 mile trip, bags more or less packed all things at home will be taken care of by our daughter in law...our other sons wife so that is not a concern with those matters.
My real question is. ...you must be on edge..particularly in the first few weeks, but.......
Do you avoid cooking a full meal ...just in case??
Do you only shop at the supermarket with a basket rather than a full trolley load??
Do you just put the washer on a half load quick wash??
Do you have a quick shower rather than a long soak in the bath??
Do you make sure you have alternative transport in case your car is in the garage??
Should my good lady only have a quick hair do rather than a full perm??
I am sure these sort of questions would seem silly to folk who are not involved with Transplant, Thank goodness for this web site to help each other out with any concerns..
Thank you in advance for any help given.
Grumps
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grumps
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We found it best to live life as normal as possible although do have your grab bag packed and mobiles with you etc.
MOST but not all calls come in the early hours of the morning so you can not put your entire life on hold. We 'lived on the list' for 10 months - some people wait hours, days, months, even years for the call.
Your transplant co-ordinators should give you guidance on the wait during assessment and most TP centres have patient support groups so worth getting in touch with them.
You will get a barrage of info thrown at you during assessment - I was able to sit in with hubby for whole week due to his communication & comprehension difficulties. Take a written lot of questions so you get your questions answered by your particular TP team because procedures do vary from unit to unit.
Hi it best to try lead a normal life as best you can. Always have your mobile with you so you can be contactable. The 1st couple of months your heart will give a flutter when it rings but you get used to it after a while.
I will have been on the list myself a year next month & I am not as paranoid now as I was in the beginning.
It is a very stressful time I can assure you but you learn to live/deal with it as best you can.
I see from earlier posts grumps that you are worried about the journey time. As others have said (a) if you have problems with your own transport as Katie said they would most likely send an ambulance and (b) 'the call' will more than likely come in the wee small hours of the morning so if you do drive your son yourself the M6 wont be so busy at that time. So try and cross that worry off your list. There is a young lady here who was living in Bristol while on the list and her transplant was done in London, so thats a 3 hour journey and she was fine.
Initially your son will be in ICU or HDU, where they are not keen on bags or suitcases, so as Katie says just have a grab bag packed, it will be mainly you needing bits and bobs if you will be staying overnight somewhere. Mobiles, charger, spare cash, something to eat or drink for yourselves if its a night-time call, minimal overnight stuff for yourselves. I keep a bag packed with toiletries, nightwear, slippers etc in case I have to go into hospital as an emergency. You could take this time to suss out suitable hotels or whatever to book at short notice for yourself.
Re the day to day living, the shopping, cooking and cleaning, dont change your routine at all, as your son is most likely on the elective list not the 'urgent' list, as others have said you could be waiting many months, and its best if life goes on as normally as possible
I agree with all of the above and would particularly endorse the nation if aiming for normality (as long as that is fairly comfortable). I was on the list for 6 months, had one false alarm at 5 months and did as much as could be done within the 3 hour travel. This meant revisiting things we hadn't done for some time and seeing things that it is so easy to take for granted. It was quite a rich period in many ways but I was lucky that I was well. Hope you and family can have that too.
You're so right, once on the list it was like a weight had been lifted. I knew I had done all I could and was going to pull through so long as I could stay as fit and healthy as possible.
We have horses and I spent every day getting up at about 7 am and with my partner sorting them out before walking the dog and stopping somewhere for a coffee.
I spent time with my kids and other family members.
I had the time to organise my life to ensure I went to hospital prepared for anything.
Hi firstly I think you need to calm right down you are thinking too much into things and getting way ahead. Not to burst your bubble but I went for my assessment last year in August, I assumed it was a sure thing I was getting put on the list, but I didn't at that point and it was a big come down and took it out of myself my husband, family and friends. They said I wasn't well enough to go on list. You are overwhelming yourself and remember it's not you who has to deal with the reality of what they will eventually go through, I do understand you want the best for your son but if you was my father I couldn't cope with the pressure you seem to be placing on yourself. I do hope your son makes it onto the list as I finally did.
Thank you jojokarak for your reply..whilst I take on board you words, I am asking for an indication of what is the best way to handle this. Not for myself one bit but to help keep any stress whatsoever from our son when, fingers crossed, hope fully he will go on the list.
I feel the more I am organised the smoother the situation will be.
The co-ordinators will advise you. Nothing really needs preparing apart from your son it is still a long road ahead and even if you get the call to say he is on the list he wouldn't officially be on it for a few weeks after phone call because he has to sign the paperwork.
As others have already said, it's probably best to keep up as much normality as possible. Always be contactable by phone so make sure the transplant co-ordinators have all the numbers they need. I did about a 100 mile trip to London in an ambulance (blue lights), and this will probably be the same for you.
If anything like Kings, this will all be discussed at meetings after he get's on the list. Kings had charity donated flats that were minutes from the hospital and could be used by family members.
Hi there. Being anxious is normal. But the best thing you can do is relax, and just go about your day as normal.
Have a bag packed. Remember to pack a book.
I got the TV service, and I don't know what it costs anywhere else, but at Addenbrookes it's £50.00 per week for TV and movies. Also, check into the parking fee schemes at your hospitol for your partner,
Finally, eat a full meal..it may be your last for a while.
I got the call on a Sunday at 230 pm and had not eaten all day. I went to the hospital. I had just missed the time zone, and they were afraid of me eating then, because of when surgery would be.
I was soooooo. Hungry, and I did not go into theatre until 430 the next morning.
Thankfully I had a roll of hard candies, and I ate them. Lol. I know that sounds bad, but hard candy just dissolves in your mouth anyway.
You can't stop your normal life.
Trust me, When your NOT paying attention is when you'll get the call. It might be a week, it might be 4 months, it might be a year.
Also, be prepared to go into the hospital, get all prepared by the nurses, and then to get sent home...because the organ is not right for you. It happens all the time.
The month before I got the call, one of my specialists said they wanted to give me a shunt, because my blood works were good, and I was not up high on the list, although my ascites was bad. So we were considering another proceedure when the phone rang.
I can tell your anxious. Just try and relax.
There really is nothing else you can do.
Eat, take your meds, rest, stay healthy as possible.
Thaks again everyone, it really does help when you all give your support and knowledge of what could happen
Hope you are all keeping in good health
Kind Regards and Thanks
Grumps
Hi grumps, what the others advise, should more or less Cover it, and your first paragraph is fine. The only thing I would add is to make sure you have a phone by the bed and make sure your mobile is always fully charged as you will be using a lot when the call comes, I bought one of those portable chargers for under £25 which gives me about 4-5 full charges, good if you take a tablet in also.
Try not to worry pal, it is counter productive in a way.
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