Hi all you wonderful friends, you are truly all priceless people.
Hubby is being moved to high dependency as I write this .
All went well and to plan.
He’s awake and thirsty so that’s good,
Another step closer to home.
Talking about home, can I ask what kind of support you all needed once you were discharged.
Agnes
Great news. The hardest part is now behind you . We didn't have or indeed need any support once my partner came home. We did make weekly trips back to hospital for dressing checks & stitch removal etc but just don't let Hubby try to do too much. I know my other felt so good that I had to keep him in check & send him to bed for a rest quite often! Hope you have a wonderful ( relaxing) Xmas. xxxx
My hubby managed fine when he got home on the 8th day.So fine that he took himself for a walk after 10 days and fell and broke a rib.Biggest hastle was getting the gp and pharmacy to get the meds and doses right.So helpful that the hospital had made hubby take a meds test and explained that he had to check everything in his green book.
Delighted to hear he’s doing the step down from ITU to HDU - that was quick. (I’m a nurse, used to specialise in intensive care, now infection control). This didn’t stop me worrying about my husband when he got his transplant! I just felt familiar with hospital routine and terminology! As for going home , the physios will ensure he can mobilise well before discharge and offer guidance. You’ll also have weekly outpatient clinic visits to keep an eye on things and again offer support. The transplant co-ordinators are always at the end of the phone. You’ll both love the peace and quiet of being home and I’m sure he’ll make a speedy recovery. Just take things slowly though and be patient. Good luck to you both and have a wonderful Christmas. So pleased you got the best Christmas present ever. All the best for 2019. X Pam
Certainly not the case in my case?
What's not in your case Poobear69?
Support after transplant?
In fact it was crap.....
Do you mean the clinics?
Not outpatients or consultants etc there amazing.
Don't quite understand what you mean. What support was crap?
Transplant coordinators.......
Hi,
Now the biggest hurdle is behind you and he is safe and well in the care of the intensive care nursing and medical team, you need to take a deep breath and relax. I wonder how much sleep you've had in the last twenty four hours ?
being home felt a bit strange at first, I kept trying to raise the bed ! You quickly get used to being normal again but then its suddenly time for your first post transplant clinic. That's a handy safety net where you can ask any post op type questions and be further reassured that all went really well - don't forget the instruction to not take a certain medication on the morning of your appointment. In the next few days when back on the ward, the transplant coordinator will take you through the meds you will be taking home when discharged.
As for care needed at home, as h0b0 has just said, the actual care needed is just common sense, no overdoing it and getting used to the 'not sick' you. They will stress before you go that you have to let go of the old 'sick person' and embrace the 'new you'
I'm sure you will have a smooth recovery over the next day or so and he'll be on his feet before you know it.
Jim
Agnes,
Great news, sounds good. You will need to sort that GP out ASAP.
Best,
Mark
Hi Agnes that's good that he's moved already. I only spent one day in HDU and then onto the liver ward for 8 days. I had to have a few staples removed after 4 days to drain a haematoma. So when I got home I had district nurses twice a week to see to dressings for 11 weeks because my wound was being awkward to heal. That's not the norm though. I think it was because I'd been ill for so long. I think most are healed up within 3 weeks. Other than that no support was needed at home. Really glad it's all going so well. He will be home for Christmas I'm sure. Alf
Alf,
I had 11 weeks of dressings, at the local GP surgery. All healed but I seem to have two belly buttons? Call me Scaramanger🙄,
Mark
I only have one belly button but I have a good crease where the 4 staples came out early.We have to be proud of our op wounds. Don't think I'll be wearing skimpy shorts on the beach though! lol.
Keep the budgie smugglers in the suitcase 🧳
Too right!!!
Haha
You are such a cheerful bunch of loveliness !
So pleased it's over with for you. I really hope you are home for Christmas. I love and hugs Lynne xxxx
Pleased the hard part is behind you. Hubby is progressing well if he’s already made the move to HDU. I can’t comment on care at home as my transplants were a long time ago. But wishing you both a merry but relaxing Christmas and a wonderful 2019. Look forward now and embrace your new life together xx
Hi Yuiop,
Great to hear your husband is doing well, wishing him a recovery without issues. Don't forget to take care of yourself, sometimes when good things are happening to our loved ones we forget to take care of the anxieties and stress we have.
Best wishes for you both,
Mary
So pleased everything went well. I was SO thirsty after.
Make sure he takes it steady, no over doing it. As for when he gets home I suspect we are all different. I went home with two drains still in and my good lady was my only help other than the weekly trips in to Leeds. But a note of caution. I’m a stubborn old git and did too much too soon, I know have a double incisional hernia to deal with. Slow and steady wins the race. X
I'm so pleased for hubby, and glad it went well. My partner had a bit of an extended hospital stay because his op didn't exactly go to plan (ended up losing 38 pints of blood and the op spanned 3 surgeries with the same liver). He was discharged with a raised toilet seat and a walking stick after just less than a month.
He needed some minor help when he got home (he couldn't walk far initially, and needed help to get himself in and out the bath - things like that) but bounced back very very quickly. If you have any concerns at all the coordinators at Edinburgh are angels, and so is the social worker.
Hi
I agree with every one I was up and answering the door as I got home, you have to take it easy, and its amazing how much better you feel, our only problem was the weekly visit which are a 120 mile round trip, Taxis aren't cheap! But some special friends helped with lifts.
I hope you will be home for a special Christmas
David
Thanks David. Hope you are doing well
I am doing really well, considering I would have not been here now without the transplant its amazing, I am still gaining strength to do more, but I have painted the downstairs of the house and all the fences.
The main thing for me is the HE haze has gone, people actually say when I speak on the phone they can tell I am back!
Just take it easy at first the getting better day by day is the way and that still true 6 months in.
I am so please for you, well done!
David
Hi Agnes it’s lovely to see the excitement and happy notes in your voice. It must be weird to all of a sudden realise you can dream of the future again. Hope it just gets better every day. Julie
I am so happy for you both. I am hoping you may be home for Christmas although after such a spectacular Christmas gift. Any presents yet to open, will seem mediocre. Rest well my friend, give our love and good wishes to hubby.
Jaycee
Thanks Jaycee, hope you have a wonderful Xmas. X
Good to hear
Hubby was discharged after 2 weeks, but readmitted 3 days later due to potassium being too high which lead to a change of his anti rejection drugs
After that it was weekly appointments, then based on healing and bloods your appointments become less frequent unless they see something in the blood work & might increase frequency of appointments
Didnt have any home support except for the stubborn hubby not to do too much, no lifting, walk but rest when needed
We have just hit the 7 month milestone
I was the tired one afterwards
Glad your hubby is ok. I’m exhausted with all the care beforehand, and I know there’s more to come, but I’m sure we will wag our way through it all x
I know that feeling
Took me about 6 weeks to stop feeling tired as I also work full time
Thank god for the summer holidays as hubby's transplant was slap bang in the middle of marking exams to be sent off to the exam board
Even 7 months on I still worry if he has a sleepless night, he has an off day, he gets a phone call to tell him to increase or reduce his anti rejection... The recovery is all a huge balancing act..not being too overprotective of them should they over do it & get a cold & making sure they do just enough to become independent again... Just take each day as it comes xx
Hi
I’m so happy for you. It took me 5 weeks to leave in hospital, they keep you in for4 on average in France. Make sure he eats regularly, healthy meals. Don’t remind him all the time about his meds - my hubby drove me mad. I knew my life depends on them so wouldn’t forget! Help him to get up and around but avoid crowded places at first as he doesn’t need a cold just now. Just enjoy the new life together you have!
Still in high dependency , chest infection, collapsed lung, put in ascitic drain last night and it’s litres of blood draining. Nil by mouth last night, I stayed last night again, so will soon be in to see him and find out if anything happened last night. Renal still not good.not eating much.
But he’s doing good despite these setbacks.
Hopefully today will be another step foreword.
Everyone’s recovery differs.
Agnes
Morning Agnes, you must be so worried but here’s hoping he has had a better night, take care 💕
Thanks Kate, 8 litres of blood drained. They decided it is blood leaked from the op. It slowed down today, thank god! Lung is nearly inflated, he had X-ray, he's now to try and cough up the rest of the gunk.still not much pee, still not eating very much, so the tube feed is back in. Although all this is going on, I see improvement every day. I came home tonight, be nice to have my own bed.
Agnes
Hi Agnes , I hope you have a good sleep in your own bed tonight, I always think it’s so hard on loved ones, at times I felt they were suffering more than me, I had fluid In my left lung which was a bit of a pain and a tip I was given by the physiotherapist for clearing itwas to imagine I was forcibly steaming up a mirror with my breath(does this make sense) this was much easier than coughing which was quite painful, take care 🌸💕🌼
Still thinking of you Agnes hope you had a good nights sleep and feel rested today. Love to you both Jaycee
Thanks Jaycee, up early. 2 million thing to do before Xmas, will be 5 hrs return travel for hospital now, I won't drive in Edinburgh, I would end up getting lost! Would do it in the summer, but not in the dark! Hubby sounded good on the phone last night, everyday has been an improvement. Might not make it home for Christmas, but maybe new year.. Who knows.
Thanks for your messages, and for everyone's messages, means a lot, as I'm quite isolated with all this.
Agnes
Transplant update 
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