Been a journey the last 2 weeks. Chest infection and collapsed lung.
Drained ascites and looked like pure blood.. 8ltrs drained.
Kidneys playing havoc , very high potassium level.
Was aiming to get home New Year’s Day.
Who knows? These doctors are amazing in Edinburgh .
Keep the faith .Trust the edinburgh team. Its better to be safe. My hubby was in hospital on hogmanay last year but is here to celebrate with us this yearxxx
It isnt important when he gets home, they are an amazing team, and will let him home when he’s fit enough. X
I hope that you will feel much better soon. i was in the ERI as im from edinburgh myself. the surgeons and doctors were amazing. I had a huge 5 hour operation there. it was a success too. keep in touch and let us know how you are. God Bless you. love grace xoxo
Hi Agnes , how are you, I can’t believe it’s 2 weeks already, here’s hoping you get him home soon, but they will only let him go when he is absolutely ready so that is a good thing, take care 🌸🌸
Thanks Kate, his home time will come soon x
I had a couple of false hometimes which was upsetting, one time I had actually been discharged had all the paperwork my meds everything when one of the consultants came in about 4 o’clock and told me I couldn’t go home, I was so upset and went in a big huff like a 2 year old 😂😂😂 I refused to speak to anyone but in the end I knew they were right, so I just accepted then that I would get home when it was right and I did 3 days later 😁😁
Hi Agnes. Sorry to hear that. I hope that hubby gets all his problems sorted soon and is on his way home before too long. Look after yourself too! Alf
Thanks Alf,
His new liver is working fine, it's a case of getting the rest of his body to do the same. These doctors are amazing, and I have every confidence in them.
Agnes
The hospital stay seemed to last forever for me(3 1/2 weeks) & my wife who was always at my side. Recovery really took off when we got home.
Keep strong..you will both get there.
Took a while to get going post op. But it does happen!!
Oh Agnes that’s so tough for you both ☹️. Truly hope things improve soon.
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So sorry to hear about his ongoing problems but he is in the best hands. It must be horrible for you watching him struggle but he'll be home before too long and you'll be able to enjoy life together. Deb
Thanks Deb, it is hard to see him so helpless, but reading a lot of posts on here reassure me that all the things going wrong just now happen to a lot of people post op.
Agnes
Hi, it is such a disappointment when discharge from hospital is delayed, but trust me it is where he is best. When my husband came home the reality hit me that he had been cared for by so many professionals and the day he came home, it was all down to me to provide the care. Make sure I got all those tablets right, check his blood sugars god knows how often etc etc, I am not medically trained but I really felt a huge pressure as I was on my own to care for him and only the day before he had professional nursing 24/7. I was terrified I would miss something important.... but in short they only let him come home when he was ready for it and I was able to care for him. Every day he is there he is getting stronger and this will make being at home easier. Good luck and best wishes for a wonderful 2019, it will be worth the wait, I promise.
Thank you for your reply, I know my role in all this hasn't really begun yet, it can't be any more difficult than how very poorly he had become pre tx. (I hope)
No you are right, the 2 years pre tx were the hardest ever to bare. Once they are home you are on the right road and it is with a big glowing light at the end that you know you will reach rather than the never ending road pre tx. My husband is 1 year in on 26th Jan 19 and I swear you would never know he had ever been unwell. Gained all his weight back now, active and more importantly happy !!! The recovery seems to whizz by week by week - you will both get there together.
Hi Agnes, sorry to hear about the post transplant problems, but as yourself and others have said you’re in good hands and will get through this stage. It is disappointing and worrying when you encounter problems after all the excitement of the life saving transplant, even though we are prepared for this during assessment. We hope we will be lucky enough to be discharged from hospital within days like some remarkable people are. Unfortunately my husband had problems and was in Edinburgh for over a month and as we live far away from the hospital I stayed with him the whole time (between hotels and initially rooms in the hospital). This was the hardest and loneliest time for me and I honestly doubted whether we would ever leave together! As you know he got there after serious rejection, several biopsies requiring high dose steroids and developing type 1 diabetes etc. He wasn’t responding to meds as expected but the docs were great, nothing too challenging and kept reassuring us we would get there. Then all of a sudden he responded well and the recovery began . As someone else mentioned the real recovery happens at home and this was the making of my husband he came on so well. He’s only on a small dose of anti rejection meds twice a day now, all others drugs discontinued including insulin for the steroid induced diabetes he developed which resolved very quickly. So hang on in there, chin up and keep strong, you’ll both get there and everyone on this site is with you in thought . Pam xxx
Thanks Pam, it's certainly a journey never to forget, as is the family who lost a loved one to make this all happen. I lost my son last year tragically in a house fire, he was only 32, and when we travelled in the ambulance to the hospital a couple of weeks ago, my heart sunk to that very same place as it was last year.
I knew they were feeling the same pain I had encountered. It is an amazing gift they have given us both.
Agnes
I read your reply earlier on while I was at work and must say it brought tears to my eyes hearing about your beloved son. Absolutely heartbreaking. It also brings home with clarity what an amazing and precious gift a transplant is. All the best for 2019 x
I’m always so very humbled to read posts of what some of you are have and are going through. Although told I was seriously ill when diagnosed in September 2017 the time leading up to my transplant I felt fine. Post transplant, 5 months ago, I, touch wood, have had no major issues and count myself extremely lucky. You guys are warriors in the true sense of the word and I cannot wish you more good luck for the future. Remember what they would do in days gone by when preparing for a battle, don your physical and mental suit of armour and fight the bastard that has decided to satrack you. I wish you all good health and fortune for 2019.
Sorry to hear it has been a hard 2 weeks but they will keep him until he is fit enough to go home, & like you said there is no rush, but remember as stressful as it is you need to look after you too.
At least they caught his high potassium levels early, my hubby was discharged then readmitted due to high potassium which resulted in a change of anti rejection medication. As they say it's a balancing act & everyone's response time is different.
With normal major surgery it takes the body a lengthy time to heal, stitches on the outside are no indication of what is happening inside. A transplant is major x 100, so so healing willl be slow and sometimes other part of the body are affected. You are both in the very best place and with such excellent care staying positive is the only way forward. This time next year you will look back in awe - Stay strong and God bless Hazel
Hi Agnes, I'm sorry to hear of the problems your husband's having and hope things will improve soon. There's no better place to be than hospital when we have health complications so hang on there. I hope you are both home soon and wish you health and happiness in 2019.
Coralsun
Hi Agnes, sorry to hear you and hubby having a hard time. Try and keep positive and he will soon be home. Sending a hug and hope he is feeling a bit better x
Liver kidney TX
3 weeks post
Constant drains every 3 weeks 
1-2 weeks. 
