Support during transplant process

[Pinkplanet]

I'm wondering how people manage the liver transplant process if they don't have a partner or any close family available? E.g. do a group of their friends come together to provide the support that they need? I'm thinking of them having someone available to take them to the hospital when they get the call, being there for them during the post op process and taking them back to the hospital weekly (which will be a long drive). How do people make it work? I'd be very grateful for any advice or suggestions.

[AyrshireK]

Which transplant centre is your friend under and what guidance has been provided by the liver transplant social workers? It's usually imperative that someone going through transplant does have some form of support network and what support someone has is usually examined during the assessment process.

I know in my husbands case he couldn't have gotten to pre transplant clinic appointments without me (and due to the degree of his ill health I was actually nursing him for nigh on 6 months before he finally got his call).

I had to drive him over after both of his calls though some hospitals will arrange a blue light ambulance - some folks even get flown depending on where they are and how quickly you need to get there.

During his 18 day stay in hospital I was there daily to provide company, fresh clothes, pj's, wash him when he needed help, take him in food or take him out of the ward for food and then when we left hospital I had to wheel him out in a wheel chair and carry all his bags and medicines (of which there were a lot). He can't drive for the foreseeable, can't lift anything too heavy and at home is still reliant on a bit of care for bathing, doing anything that requires bending - putting on socks etc. I am still ordering and sorting out hubbies medicines and more even 21 weeks on.

Like you say we had to attend clinic weekly for 8 weeks in our case (including 2 hospital readmissions) and then fortnightly for the next couple - we are 100 miles each way from transplant hospital on rural roads and we actually put our caravan closer to hospital so we didn't have to travel every time but could stay and have some relief between clinics.

Normally all this would be covered in transplant assessment as to the support network a person has.

Katie

[Pinkplanet in reply to AyrshireK]

Hi Katie, thank you! I really appreciate your response and the info that you have provided. My friend is under Birmingham and hasn't said what the social workers have advised. That's something that I can ask them. It's useful to know that this is something that is normally covered in the assessment.

[AyrshireK in reply to Pinkplanet]

Has your friend definitely undergone transplant assessment and been formally listed?

[Pinkplanet in reply to AyrshireK]

Yes, they have just gone through the assessment process and been listed.

[Cat1218]

I had my transplant 12 weeks ago at Leeds. It is just myself and my son at home. Neither of us drive and my son also has health problems. I attended every appointment alone and had no visitors after transplant. I took a large case on wheels with all of the essentials in. I use hospital transport to get to Leeds and when I got my call, Leeds arranged transport for me who were on call. Make sure Birmingham know that transport is needed when your friend gets the call. I have just been put on 3 weekly visits now. I managed when I got home and felt ok. I have all of my shopping delivered weekly so thats the food taken care of. Please tell your friend not to worry and use Hospital transport and deliveries. Any worries or concerns can also be dealt with via GP and 111 and the hospital once home. I hope this has been helpful.

[Pinkplanet in reply to Cat1218]

Thank you Cat1218! That's hugely helpful. I really appreciate your response.

[Cat1218 in reply to Pinkplanet]

I forgot to add that I still use Hospital Transport now and you can find out the phone numbers on line for your area. I book it myself to go to Leeds and you are given a reference number. I book mine approx 2 weeks before the appointment. You can also book when you need weekly transport and they will also escort you to the clinic when you get there if needed.

[Pinkplanet in reply to Cat1218]

That's really helpful to know, thank you Cat1218!

[Yellowsydney]

Hi, I had my transplant 7 years ago at Addenbrookes, my husband drives me to all appointments although I was quite capable of driving myself, in the day I got THE call I was offered transport as I believe most people are. In the day I was discharged my husband couldn't pick me up so transport was arranged to get me home. The next day he went to work, leaving me alone. You are not allowed to drive for six weeks post transplant so he did drive me to appointments. It is possible to go it alone, some hospitals provide transport for follow up clinic appointments, my husband drives for a community transport scheme and spends most days taking people to hospital appointments you could look into something similar. It sounds as if you are a good friend and will help as much as possible.If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called liver transplant support uk, thousands of people that have been in your situation.

Hilary xx

[Pinkplanet in reply to Yellowsydney]

Hi Hilary. Thank you so much for your response and for the information! Really helpful to know about the Facebook group too.

[Richard-Allen]

Just a little heads up if you can make it. There is a meeting tomorrow (Saturday 23rd of November) up at the QE Birmingham, of the QEHB Liver Transplant Support Group. The meeting is being held between 10:00 - 14:00 hrs in Lecture Theatre 2, just up the stairs from the main entance.

I shall be going along.

For further information please contact by email: [e-mail]

or calling the number on the poster. I believe there will be around 30 people coming along so far.

Hope this helps, if you happen to be local enough.

QEHB Liver Transplant Supporters Group.

[Pinkplanet in reply to Richard-Allen]

Thank you Richard. I appreciate you letting me know. Unfortunately we are too far away, but am grateful for the information!

[bagpuss7]

Hi, it really is the most unpredictable of recoveries. It may be best to have a degree of flexibility. I was very ill and in intensive care for weeks before transplant. However, I was out within a week and like yellowsydney, my husband had to go back to work almost straight away. I was back working within 6 weeks and up and about very quickly. It's not always so, so I would plan for a longer recovery but remain hopeful a short one. Good luck.

[Pinkplanet in reply to bagpuss7]

Thank you bagpuss7! That's really helpful to hear about your experience.

[McEwan1962]

Hi Pink Planet.

I went through the process pretty much on my own. Friends were and are supportive. My transplant centre was Kings, however I live over 4 hours away so it was too far for anyone to come. I had my transplant on the 5th trip up!

Post transplant I discovered my local hospital had a support group and I know that Birmingham have one too. It would have been so helpful to have known about them and have their support post transplant.

[Pinkplanet]

Hi McEwan1962, many thanks for your post! That's really helpful to know about your experience and the support groups.