Back after a transplant

[busylady]

Hi everybody,

I am so sorry for being quiet on the forum for a while, I have been rather busy. As some of you will know from my previous posts and blog, I was on the transplant list last year. The good news is, I was lucky enough to get a transplant on the 11th December 2012 thanks to the generosity of my donor and his family. I am truly grateful and it has transformed my life completely. So I have been taking the time to recover and regain my strength, hence my absence from this site.

But now I am back. My Husband and I have been writing some blogs, so if any of you are interested in hearing about my experiences do have a read. I have three, so you may need a large cup of coffee and a few biscuits if you do decide to sit down and read them all.

The first blog some of you may have come across before, that was about living with PBC. The second blog narrates experiences for the first 3 months after transplant. The one we are writing currently is the 3 month plus period.

I work in healthcare my self, so don't want to sounds condescending when I say please bear in mind that these are MY experiences, and everyone is different ( as you know). The blogs, especially the post transplant blog were done initially to keep our family and friends informed of my progress without the need for my Hubby to ring everyone all the time, as well as undertake the 110 mile round trip to see me each day in Hospital.

So a warning, they are all written with a dose of humour ( some Hospital humour I am afraid too ), but they are also written with a hefty dose of honesty............

So here are the links :

The pre transplant blog about living with PBC:

PBC Blog: angiewithpbc.blogspot.co.uk

The link to the blog for the first 3 months post transplant experience:

Chronicles Part 1: goo.gl/3S4RL

The link to the blog for the 3 months plus experience to current times:

Link to Chronicles Part 2: goo.gl/l5fdB

Please do feel free to comment on the blogs themselves. I would be grateful to receive any feedback. Once you have clicked on the links it will take you directly to the blogs.

You will see the LATEST post first, so if you want to read from the start, then you need to scroll down to the bottom tab on left hand side of screen ( for the 2nd and 3rd blogs). You will also see a little speech bubble on the RT hand side of the screen, if you click on there you can leave your name and a message.

Kind regards and warm wishes for good health to us all

Angie

[Kaywal]

Angie, thanks so much for sharing your experiences - you look so young. At what age were you diagnosed, how long on urso before the transplant? Did urso work for you to start with?

I will read your blogs when I have a quite moment alone. Thanks again and very best wishes for your lovely new future

[busylady]

Thanks, I think the camera is a good liar hee hee.

I was diagnosed at 48, and am 51 now. I was diagnosed at quite a late stage I think, and had significant liver damage at the point of diagnosis. I started on Urso straight away, I think it did help a little, but to be honest I think I must have had PBC a long time before I was diagnosed, so I felt little relief from taking it.

take care

[Kaywal]

Well you look great in your pic (guess why I haven't uploaded one!) I know I certainly had PBC for a long time before diagnosis - who could have known there was such a disease out there. Its so good to hear you're getting life back to normal.You're an inspiration!

[Keren]

Angie, I stumbled on your first blog (pre-transplant) a week or so ago - you guys are so inspiring and I love your attitude to the whole situation. And David is a complete sweetheart!

[busylady]

Thanks Keren

I am very lucky to have a supportive Husband, especially having read some of the post on here. It really helps with everything if you have physical and emotional support. David has a healthcare background like myself so he comes with empathy in bucket loads.

Hope you keep well Keren

[Silvers]

Angie and David

Thanks so much for blogging, I had times of laughter and tears reading your story.

Angie, sending you hugs and healing and also to your hubbie who has been your rock. Also to your donor and his family...............

Hugs

Sx

[busylady in reply to Silvers]

Thanks so much S, I think we have both had tears at time writing it too, but like you I also find my self sniggering as I type. I guess we all know we have to laugh at this horrid disease, PBC. It already tries to rob us of everything we hold dear, I refuse to let it have my sense of humour too!

Much appreciation for your support and feedback

x

[Hidden]

Hi Angie & David,

Great blog, absolutely love your humour and your hubby is adorable.

I was diagnosed with pbc when I was 30 which was 12 well nearly 13 years ago. Had my first transplant on 19th December 2005, spent Christmas and New Years in hospital, not fun at all. Unfortunately pbc came back and I had my second transplant on 5 May 2008. All was going along swimmingly until Tacrolimus sent my kidneys into dire straits so then they lowered my anti rejection drugs and wham, I go into rejection and yes, PBC came back #$#$)@#!!!!.

So now 12 years later I'm once again on the waiting list and have been since September last, waiting for my 3rd and FINAL transplant due to pbc. What a bugger of a disease this is. I wish that i had kept a blog as well, reading yours brought back so much of how I feel/felt.

I wish you and your hubby well in your future health.

Hugs, Jo x

[mumofthree in reply to Hidden]

Hi Jo/rockchique,

Sorry to hear you have had such a rough time. Keep positive, as they say......'3rd time lucky'.....and if you feel up to it you too could keep a blog!!

Good luck and best wishes for the future. Keep in touch and let us know how you are getting on.

Cheryl X

[Hidden in reply to mumofthree]

Thank you Cheryl, yes I am thinking of starting a blog for the third transplant, I think I probably should keep a record of sorts, my memory not being what it could be Watch this space!!

Hugs, Jo x

[busylady in reply to Hidden]

Hi Rockchique,

Blimey you have been through the mill, and a clearly, you are a very strong lady. I can only begin to imagine your frustration at your situation, I have heard quite a few tales about kidney problems with Tacrolemus and it is quite a worry isn't it?

Do you mind me asking you a few questions?

How did they diagnose your PBC relapse? did you present with symptoms or are they monitoring you through blood tests ( I have not actually asked that specific question I have sort of assumed they do?)

When it came back did they put you on URSO again, and see if it helped, or did they just put you back on the list.

Do you work? I am now in the throws of making the decision whether to return to work or not? what was your experience? I was refused ill health retirement on the basis of being on the transplant list ( I applied pre transplant) and they refused as they seemed to think that following the transplant I would be cured and should be able to return to work? Rather naïve in my humble opinion, however I can reapply, but not sure how sympathetically it will be dealt with.

I want to send you all my best wishes, and wish you the BEST of luck for a safe and speedy transplant.

[Hidden in reply to busylady]

hi busylady,

Yes it is all a balancing act with all the meds they put you on after transplant. Getting the doses right can be quite hard.

After both transplants PBC was rediagnosed by biopsy. I have had about 10 biopsies in the last 8 years so i have lots of little nicks all over my trunk lol. Luckily they don't scar too bad It all comes down to the loss of bile ducts. At first when you start going downhill they look at the bloodwork and mostly they suspect rejection to be the cause but biopsy was the only definitive way to rediagnose.

I have been on Urso since my first diagnosis in 2000 but it seems I am a non responder however they still like me to take it as they are scared that by not taking it my pbc will progress even faster, if that could even happen

No I have not worked for the last 2 years. I have been extremely lucky to have a wonderful employer who understood that I was not taking them for a ride and so they allowed me to go on leave without pay when I was away having transplants and then I could go back to work when I was recovered enough. I did apply for temporary disability after both my transplants and was approved only for the first one so that gave me 2 years pay which was wonderful. I was also covered for the last 2 years as part of my income protection insurance in my superannuation policy. It was extremely hard to fight for as you know their first answer is always NO! but luckily I have an extremely persistent husband who did not give up and we were successful in our claims.

Thank you for your kind words, I really enjoyed reading your blog, it has inspired me to think about doing on of my own

Warm regards

[busylady in reply to Hidden]

thanks for the reply, you are right the first answer always seems to be NO. I guess maybe they hope people give up and don't persevere after that.

good luck, keep well and I wish you a speedy transplant and successful recovery

[mumofthree]

Hi Angie & David

Thank you so much for letting us in on your lives. Sharing with us your experiences as a sufferer and carer. Being so open and truthful about your feelings and emotions at such a difficult time in your lives is such an unselfish and brave act for which you should be commended.

Angie you are so fortunate to have such a wonderful, loving and caring support network around you its worth more than all the riches in the world.

Good luck and best wishes for continued good health and to a long an happy future.

Cheryl x

[busylady]

Thank you Cheryl, I am normally a very private person who did not use social media or facebook etc. so I surprised myself and my Husband when I suggested we did it. The post transplant blog was initially a way to disseminate info about my progress and saved my Husband multiple phone calls,. However we got so much positive feedback we thought we could continue it...................... will see how we go in the future

thanks for the feedback we appreciate it

[Jill68]

Hi, it was good to read your blog, I am 45yrs old, diagnosed 7yrs ago but had the symptoms for years before that. I have been battling the itch for 6yrs, tried every medication possible, they help for a short time. I now have an appointment at the transplant unit in Edinburgh for possible plasmapheresis, I have a feeling they will put me on the transplant list too. Obviously I'm feeling very anxious about it, did you have plasmapheresis? How long were you on the list for? X

[busylady in reply to Jill68]

Hi Jill

apologies for the delay in reply, lap top decided to meltdown, eeekkk!

best of luck with your appointment in Edinburgh, I know how anxious you must be feeling.

The first time I went for transplant assessment they decided I was not quite "ill enough to be put on the list". what was interesting was that they said we think we could get another year out of you ( made me sound like an old car ha ha).

Anyway the Docs clearly knew their stuff because approx one year I started to go downhill further and was asked back for reassessment, but this time I WAS put on the list.

From that point I was told I could be waiting 6 up to 18 months and may get many false calls in for a transplant. I was lucky after 6 months I got the call, and had no false alarms.

wishing you the best of luck, stay strong and keep as healthy as you can

kind regards

Angie x

[Jill68]

Thanks for replying, I don't feel that I'm ill at all, just knackered and covered in scabs and bruises from scratching - you just reach a point where you can't go on any longer with the itch! I'm a single parent with three boys and trying to hold down a full-time job, I am really hoping that they put me on the list and maybe plasmapheresis in the mean time.

It's shocking that they can say you are not ill enough - only you know just how bad you feel. Did you have a transplant because PBC had progressed so much? Did you have the itch?

Jillian x