I'm wondering if there's anyone like me who has been advised to go on transplant list but feels it is too scary . At the moment i have deferred my decision for 2 months to try and get my head around it. I was diagnosed with pbc 14 years ago and suffer the itch, fatigue and other problems associated with pbc, but feel i can live with these, i'm so worried i have the transplant and end up more ill. I have become quite jaundiced in the past few months and this is whats causing the concern, i'm due to be listed on 2nd of july and am so scared and confused, any advice would be gratefully received.
thanks mandy
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Kate50
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Hi Mandy, I can totally understand how you feel, but I had a transplant 12 years ago and am totally fine, leading a full life. If you live in England and want to talk this through with me let me know and we can private message with contact details
hi, thanks for your kind offer, so good when you hear someone who has been through the transplant and doing well, i think its the lead up to it that plays with your head, sometimes i feel i have so many thoughts my brain cant cope, its all the kind of mental preparation i'm struggling with, i have 3 young kids, twins of 10 and 13 yr old, and don't really know how to prepare them for what is going to happen, great your doing well really good to hear
Mandy, I was diagnosed with PBC very late in time, and ended up failing rapidly after diagnosis. In fact 22 months from diagnosis to transplant. at diagnosis I went to Dr. as I was old (60) and had not seen a Dr. for many years, wanted a quick check over as I was feeling "a little bit Tired" over the next 22 months I went yellow, itched, put on 4 stone of fluid (belly and legs) became so tired I slept 18 of 24 hours, and for good measure became chronically hepatic encephalophic (mad).
You will be tested to check you are suitable for a transplant (go to these tests and get OKed) you will NOT be offered a transplant unless you desperatley need one (resources are far too thin) so I went on list thinking I do not need to be on list, I am doing quite well, but my journey saw my blood readings start to move rapidly, I became so fatigued, so unwell, then you will find fear evapourates, the escape route might not be one you would choose right now, but if push comes to shove, your journey will start, and most have happy endings! even if the journey gets bumpy (some have such a smooth journey they hardly notice it!)
Advice, raise up to the challenge, be brave, enjoy life, discuss openly with family and friends, do not dwell on fear, rise above it, beat it, you and your liver team will get you through your journey. I believe I am a better human being as a result of my journey, I trust you will be too!
hi charlie, thanks for taking the time to reply i have been for the transplant assessment and was advised it was time for me to go on the list, think my problem is that i dont feel ill, i'm just yellow, i think my bloods are indicating that my liver is not doing too good, but the only apparent sign to me is the jaundice i dont have any of the other signs, this is what causes me the confusion if i felt ill i think it would be easier for me , i'm finding it so hard to be positive about it and feel really ungrateful as i know some people would jump at the chance to go on the list, but it is good to hear from people that have had a transplant and are doing fine so thanks for your message
Great reply! I love your attitude. I'm 61 and have been on the transplant list since 2007. I've been stage 4 ("end stage") for at least that long, but am not "sick enough" yet. (my MELD is 16).
If I have a transplant, wonderful. I'd love to see my grandsons (4 & 2) grow up but if that doesn't happen, it's okay. I'm comfortable with death and believe in some sort of afterlife.
I have the usual plethora of symptoms and deal with those. My biggest problem is my encephalopathy. My brain doesn't work as it used to and I fall a lot. Gave myself a minor concussion last Thursday! I drive my husband crazy. haha He's a wonderful caregiver. (so what am I doing with a concussion you may ask?)
I would get on the transplant list now if I were you, better safe than sorry, at least if you are on the list and if the time comes that you need one at least you will be on the list.
Hi Mandy, I agree with the other replies. My first pbc diagnosis was in 1998. I've been on the transplant list through Mayo Clinic - AZ, since 2007, and am still "not sick enough" for a transplant. And here I am at 60! I am not jaundiced, but have most of the other symptoms, especially fatigue and encepalopathy.
My advice: 1.) get on the list; 2.) learn about your MELD score (lab numbers + other considerations such as quality of life); 3.) learn what your labs mean, e.g. last week I had a blood loss of about 1/2 pt. (bloody nose). I had labs done in the emergency room and my blood platelets were at 38 and should be between 150 - 450. Because of this, I get a lot of bloody noses and bruise a lot. 4.) Meditate, manifest your health as perfect, trust in God, rest, take your pills, stay happy.
One of the Drs. on my team told me I'll feel ok, feel ok, feel ok, then one day it will be like stepping off a cliff. That is scary, but what will be, will be. We have two grandsons, ages 4 & 2. I'd sure love to see them grow up.
hi cindi, thanks for the advice makes sense about getting to know results and stuff because now i worry that there has been more in my tests that im unaware of and get a wee bit scared at every little twinge, i go on the list on 2nd of july and then its just a waiting game,
Hi Mandy! I'm Katie! I'm also on the transplant list as a result of PBC and I just turned 17. I don't know what advice to give because I haven't been given my transplant yet. But I know exactly what your feeling. I'm so scared too! Only 20% of my liver is working so I need mine soon. But I am also scared of what life will be like after surgery. I just want to let you know that you are not alone and that I'm going through this too. I had jaundice and itchiness and nightsweats and other gross symptoms, but now I feel better because I have a bile stent in to drain the yucky stuff out. I just want to encourage you and I would love to talk because I know it is super scary and I feel alone like there is no one else out there going through this. But when I saw your post it made me feel a little better to know I'm not alone. (Not that I'm happy you are going though this, but it is encouraging to know there are others out there). It may be scary but I believe that we will feel so much better afterwards. I wish you all the best!
hi katie, thanks for taking the time to reach out to me , i have never heard of anyone so young with pbc, i'm 47 and struggle to cope sometimes, feel like a big baby, yet you are so young but sound so mature, my thoughts go out to you, sending love and hugs across the pond to you (i'm in scotland) xx
We're all scared, no matter our age. Keep reading these posts. So many of us are doing great post-transplant. Read and learn what the numbers, meds, and lab words mean and you will be much more empowered. Eat well and enjoy life!
hi, i don't really take anything for the itch but i have a treatment called plasmapheresis every 2 weeks, this is a process that removes plasma from my blood and replace it with fresh plasma, they dont really know how it helps the itch and i dont think it is widely used for pbc patients but it has been great for me after trying every single drug with no success, the only other thing i do is using cooling gels like aloe vera gel and emollients to make sure my skin is well moisturised , i hope you are well , Mandy
We can talk you through any concerns you have in a way that is specific to you.
The UK works differently to the US in many ways re transplant. We use what is called the UKELD score. For you to be on the list, then your score will be high enought to make you qualify.
In terms of survival after transplant: in the UK, the PBC survival rates are amongst the best for any condition after liver transplantation. There are a number of factors: one of which is that, *usually* there is a long window of opportunity which means the chances of getting the best liver match for you are greatly enhanced. Also, being a lady, sometimes the medics will split livers giving the small node to a child and the bigger node to a lady, again making best use of limited resources.
Lastly, we can put you in touch with many of our members who have already been transplanted and can share with you their positive experiences.
Like you I was diagnosed with PBC 14 years ago and I am 69. I am able to send this reply because I had a transplant at the end of last year and without it I would not be here. I too was very scared about the operation but after being on the transplant list for 13 months and was called to the hospital on 3 occasions only to be sent home each time because the livers for me were unsuitable. On the forth ambulance ride to hospital my fear and worry had gone because I was desperate and wanted the transplant.
Life is better now. I am back working in my allotment, sea fishing and have resumed pilates classes. The advice from other sufferers is good. The advice from me is get on that list and keep as fit as can to help with the operation and the your recovery.
Did you do it? You know you have nothing to lose and everything to gain. I've been on the transplant list since 2007. It's not like a push as I'm still not high on the list. I'm in the US and my MELD is 16. I'm stage 4 ("end stage") but have been at this stage for years. I'm 61 now.
Really, work on your emotions. Live life like it will last forever. I learn new things online. I'm considering getting my Masters Degree if I can do it online. I'm retired and on disability so it's just for myself (too fatigued for a job). I have 4 year old and 2 year old grandsons. I want to see them grow up, graduate, get married, and be a great-grandma. I hope I can, but for the time being, I just enjoy the heck out of them! I'm (normally) happy and positive and worry about my parents, who of course worry about me! haha My husband is a great caregiver and very stressed about my health as I am about his type 2 diabetes. It is what it is.
hi cindi, just a wee update yes I did do it , was listed on the 2nd of july, although think I'm still in denial, still a bit terrified but just put it to the back of my mind and will deal with it if and when the time comes, I have been told it could be anytime from now to 2 years so no point dwelling on it, arranged all the practical things ie childcare etc , I have 3 young children and they are my main concern got plenty of support when needed so all good , I hope you keep well and keep posting on how your doing, bye for now
Good for you. Enjoy your babies! I read so many wonderful and positive stories from post transplant people. I'd rather not have to go through this either, but hope I do so I will feel better!
Hi , just thought I'd drop you a wee line to let you know I have had my transplant and doing well, still can't believe it's done and it was no where near as bad as I thought it would be and apart from acting like a big baby from time to time , alls well, how are you keeping well I hope , 😀
Congratulations mops67.. So happy to hear you've had your transplant and doing well... You sound marvellous! Would you consider writing a longer post about your experience when you have time ? I know I, and I'm sure many others, would love to read about your journey.
Yeh, that's something I would consider would probably be good for me also as I spent the best part of three years or more fighting against transplant and refusing to believe how Ill I was , on another note of weird coincidence you created a post for advice for your son for travelling about England and my daughter who is 22 is about to embark on her adventure for travelling to Australia her flight is booked for 1st of September, 😀
I am not anywhere near transplant stage, but I think of this often. I am glad to see your went well. I worry in the US, with their being so many more of us, that I will never get a liver when I need one. I know there are many people that die without getting one. I am hoping that because PBC let's us know its coming, that I have a better chance. I try not to think about transplant and hope I have a long time before I have to worry about that. I have just gotten a promotion at work and hope to do some good things before I am too ill to work any longer. I need to get out of debt so I can have the option of retiring. I pray to stay well until then.
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