Hello all. Hope you are well. I'm a 34 yr old female who fell ill with vomiting, loss of appetite and anxiety type symptoms in mid January. went to the doctors and they gave me antidepressants. They thoughf I had gastritis even though my LFT came high twice aged blood tests. She sent me for a scan but nothing was foumd.
In March I noticed I was going yellow so I went to the doctors eventually who found I was jaundiced. They sent me to local hospital where I stayed for 6 days. All the tests came negative for hepatitis. They discharged me but every other day I went to give bloods. A month later I had an appt with the same hepatologist who apologised to me as the blood tests showed LFT was very high.
I was hospitalized again and put on steroids. I'm not sure why he didn't call me in earlier as during thaf month I was still vomiting and losing weight and couldn't eat. This hepatologist messed up.
After a week they kept liaising with the liver department in Queen Elizabeth Birmingham. They had me transferred there immediately. The first night I collapsed and had a vagal nerve episode where I collapsed and nearly slipped into a coma as they keep saying. I was taken to ITU whee the specialists saw me and said I either need a transplant or they'll try some medicines again.
I had all the tests like biopsy etc. By the end of April my condition was so bad I was losing my memory, coming in and out of drowsiness, vomiting even more. They came to tell me that I will be put on the super urgent list and on May day I had my transplant. Just as well as my inr had reached over 8! I was bleeding from everywhere and just before the transplant I was so ill in ITU that I thought I was dying. A few hours later they told me liver had arrived and they were testing it.
Anyway may day bank holiday I had my transplant and I'm going through a very slow recovery.
I'm scared of infections and being around people. How easily do we catch infections and do we always get hospitalised or is that in the beginning months? Will I always have to be so careful or does our immune system improve? I'm scared prograf will give me kidney issues of something?
Also after 1.5 months is it still normal to have pain on the operation site? And how long does it take to heal internally?
Thank you all
P.s. I have two small children 7 and 23 months.
Written by
Jahida
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Hi and glad to hear after your health scare you are now on the road to recovery. Have your transplant team/nurses not discussed after care with you at all? Did you ask them any of these questions before you were discharged from hospital.
Yes they have and they have been great but I still have this huge fear. I'm usually a people person and have a large family but now I'm scared to be around anyone and keep reminding them not to visit me if they are unwell. I thought it would be nice to hear from experienced people
Hopefully some of the members here who have had transplants will be along to share their experiences. It is only a very short time since your transplant, give yourself lots of TLC and lots of time to recover both mentally and physically. You have been through a massive near death, life changing experience as well as major major traumatic surgery. I think you are being a little harsh on yourself expecting things to return to normality after only 1 half months.
A while ago I read a blog by a liver transplant patient who put his story online here: davidkallin.wordpress.com/a.... I think it goes backwards if you want to read it, ie the first posts are down at the bottom and the most recent near the top. I remember him having a bit of trouble with his surgical incision, and it taking a very long time to heal. All your internal organs in your abdomen will have been pushed around and pummelled and will be feeling sore and bruised. Surgery is not a delicate butterfly soft event, its brutal, so dont be surprised if you take a long time to get back to normal. I only had a minor liver resection and it took me 6 months to get back to work properly and has taken me about 2 years to get back to feeling relatively fit and well.
I too am on immunosuppressants and work in social care where people have coughs, colds, tummy bugs, flu etc. I've not caught any. However some people do notice that they may get more infections than normal or take a while longer to shift them. You will have to find that out for yourself. Gradually you will feel braver about going out into the world of germs, lol! What has just happended to me is that my medication has caused a virus that was already in my body (either CMV or EBV) to re-activate, but only after I have been on the meds for about 3 years, so dont panic.
I can understand your anxieties, you have gone from a healthy mum to a transplant patient. Will this happen,, will that happen - who knows. Maybe Prograf will cause side effects, but its a risk/benefit situation - what are the risks to your life if you dont take it as opposed to the possible risk to your kidneys if you do. The docs will be monitoring you closely and there are other drugs to switch to if needed.
If you were pretty healthy before and the organ you have been given was from a healthy donor, then chances are you are good for maybe around 20 years. By then medicine will have moved on again and nobody knows yet what your options will be by then.
Hello I had my transplant in March 2014 and have taken Prograf ever since, although it has had a small affect on my kidneys they have now stabilised and everything is OK - I was never hospitalised, the liver consultants keep a close eye on everything.
I still have pain at the operation site and the liver consultant says that is completely normal. Regarding catching infections, if someone is infected they don't come round and I was due to visit my friend recently but she was unwell so I didn't go. I go out and do what I want, cinema, restaurants, shopping but I always wash my hands when I come back home and use alcohol gel to reduce the chance of catching anything, a lot of germ transference is through your hands - I haven't caught anything yet!
It has taken me a long time to feel better in myself. I had expectations that I would be back at work in 3 months which didn't happen. Once I stopped putting expectations on myself I felt better.
A liver transplant is a major operation and it will take your body a while to recover. Try not to worry, it does get better x
Hello. Congratulations on receiving your new life. I am now two and a half years post transplant and, thankfully, have not had to be readmitted with an infection. I am always careful and make sure that I am eating healthily and avoiding situations where I might be exposed to infection. That is not easy as my work entails visiting people in their homes, but so far I have been blessed with good health.
I think that because you got sick so quickly you probably missed out on all the education that is required whilst waiting on the list. It maybe worth your while contacting your transplant coordinator and asking to be sent all the information if you haven't gone through it. At Kings they give you a usb stick and a couple of work books to go through so you familiarise yourself with how things may turn out post transplant.
As for pain. I still get uncomfortably 'tight' sometimes around the scar, but that eases off after a couple of hours.
I also made sure I gave myself plenty of time to recover from the op. I did not even consider going back to work until a year after. I do still get tired easily, but it's a hell of a lot better than the alternative!
Hi congrats on your new life. I too had transplant end October 2014, no symptoms collapsed taken hospital n transferred QE ( in coma, last thing I remember is going out to ambulance on the mon) on weds liver team told my partner & kids I had 48 hrs & was put on super urgent, I was luck on the fri am partner got the call to say had liver there was no time on way to theatre. My organs were failing, on dialysis etc. I was woken up five days later to hear the words the transplant went well !! ?? What transplant.
Like you terrified of the tabs, complications, infections, going back in etc.
Although have had on going issues & complications have not had to back in, have been managed in clinic.
If can offer one bit of advice as Moria (coordinator) gave me & found in valuable. What ever help is offered take it, it does help, do not try deal with it on your own. I have just started councilling ( their suggestion for ptsd n anxiety) & it is helping. The worries don't go away, but with time you are able to put into perspective. When something happens suddenly it takes longer to get your head round (consultants words) as you were not able to prepare yourself or your family for what a change to your life it is.
On the pain side I did & still do (on occasions) have pain in the same area.
I hope you have the support of a wonderful family, as I have, but outside support is invaluable, you don't upset them as you can your only loved ones. Good luck. If can help am more than happy to do so xx
Im under qe too. Had acute liver failure, super urgent list transplant october 2010. Am carefull to stay away from people when they are ill if possible. But have had stsys in hospital with people all around with allsorts and didnt catch anything. Had hospial admissions with cmv infection and acute kidney injury (failure) when i had infections and have chronic kidney failure. Doesnt happen to most people though i believe just unlucky. The counselling probably a good idea was never suggested to me and my gp thinks i cope fantastically (little does he know).
Thank you all. Sorry I am replying late. I came down to my parents and have been trying to settle and guests were visiting. We will be here long term. Feeling sad but I need help with my children. I do understand that recovery stage is slow and I'm not pushing myself. I take plenty of rest and eat well now as opposed to not eating at the hospital. I'm just sad that my children want to sit on my lap or my under two year old wants me to carry him.
Can I have a private message from the ones under QE. It would be lovely to talk to you.
You've all been so helpful. I kept passing the gel to all the visitors but then it got tiring. I decided I'll just wash my hand and use the gel every hour whilst they are here. The trick has been working. Thank you for the advice.
Just wondering if any women got pregnant after a liver transplant? We've always wanted 3 and this plan isn't any time soon. Maybe in 3 yrs. But not if it the risks are too great!
Yes it has been scary. The week before I fell ill I was celebrating my 10th anniversary in London with my husband. It's sad that the memory was clouded by endless vomiting. my uncle had passed away before I was hospitalised. Then after my surgery another uncle passed away! It has been too Much to take on.
Thank you all and thank you for suggestions!
P.s. how Much water do we have to drink? My coordinator said 3 litres a day? *gulp*
Congrats on your transplant. My partner had liver transplant 2 years ago. He had car accident 5 years and they removed spleen . No immune system to speak off now. transplant was result of damage in crash. He has had his prograf reduced again which is good. The drug does have an affect on kidneys but hospital and local gp monitors that with a blood test every 3-6 months . I work in a doctors surgery and apart from the usual couple of colds my partner has been fine. his GP ( where I work ) just checks him over to make sure it's nothing serious . Apart drom that he leads a perfectly normal life , works , ran half marathon last year and does anything he wants. The area of the op does twinge sometimes but that's mainly scar tissue. You have only had your op recently so not surprising you still feel discomfort. If you are worried talk to your consultant. My partner is under the QE hospital.
I just replied to your comment on my post, and I just read your story. It is actually very similar to that of my wife's. She probably became ill a bit quicker - maybe over 2 months - starting getting ill October 2014 and then transplanted just before Christmas after 10 days in ITU. Hope everything works out for you!
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