Another blow

I never thought I would be writing something like this again and especially now as this year has been going so well for me so far and I was starting to feel happy and content, something I haven't felt in a long time. The things that have been happening to me this year I never imagined would happen to me at all or at least not for a while and not all in the space of such little time frame. Yes I still suffer with  chronic pain and other symptoms everyday of my life but the main thing is I have been well enough to stay out of hospital since November last year and that is a big achievement for me so I'm not going to complain and instead try to start to enjoy my life and make the most of every day. Also I have made some amazing new friends who have been so supportive and are always there for me no matter what and vice versa so life has actually been great. I'm not saying it's perfect cos I still get my down days and weeks of feeling low but never did I think I would feel this low again. It's like my life has been flipped 180 degrees in a space of a 20 minute appointment.

Thursday I had a follow up appointment with Prof. Heaton my surgeon as he previously discussed with me taking me off the rimfaxamin which I have been taking since November for my encephalopathy and since I have been taking them I haven't had an episode so he suggested that he wants to give me another 3 months and then review me to come off them completely. However within the last 3 months the enceph started to come back in small episodes with the shakes and slurry speech. So when he asked me how I was since my last appointment I told him that the enceph had been coming back in small episodes and then he gave me a list of symptoms asking me if I was experiencing them like shortness of breath, lack of energy, fatigue, pain etc.... and I said yes but I am seeing a respiratory specialist who thinks I may have asthma so I've had some lung function test and an echo.So he went into the system and searched for my test results and said no you don't have asthma but you have a condition called Pulmonary Hypertension (PHT) a rare complication caused from the blockage in my portal vein and the pressure around my heart and lungs are dangerously high causing all the symptoms that I am experiencing and that I am shunting too much blood. At this point I thought to myself great another diagnosis and probably more meds but if it helps my symptoms then I don't care. Then he went on to say that now is the time to think about some intervention as it is only going to get worst so the first port of call is to see the hepatologist Prof. O' Grady and then see a cardiologist who will be able to prescribe me the meds to help with my symptoms and he probably would want to send me to the Brompton as that is what they specialise in. In the meantime he will look over all my previous scans, tests and see if I need any more then to plan treatment which unfortunately will be more surgery. By this stage I felt like information overload and gutted as I didn't expect surgery. His facial expression and tone suddenly changed as he explained to me that he knows that he said earlier this year that he doesn't want to do any more surgery on me when I asked for wound closure because it's clear that every time they go in something goes wrong and I end up critical and he doesn't want to put me in that position again just when I am starting to get my life back. However, this can't go untreated as it will just keep getting worst eventually killing me. So he went on to tell me the two possible solutions. The first tackle the problem by attempting to unblock the portal vein which would be the best outcome. However he said with your insides being so messed up now he can't guarantee that will work without damaging anything else again and the second option is re-transplantation and when I heard that word I was in shock and tried to hold back the tears and carried on listening. He understands that my liver is doing good and it don't make sense on paper that I need another transplant but the only way to cure the PHT is through the liver which caused it in the first place. He has given me a time frame of 3-6 months that this will all happen.

I was just thinking to myself that this can't be happening to me again...I came to my appointment all positive and hoping just to talk things through about the rimfaxamin and to inform him that I have just been diagnosed with type 2 diabetes but that was it and I was in my gym clothes to go straight to the gym. After the appointment I came out the room and saw a friend that I haven't seen in a while talking to Sally the transplant co-ordinator and I went over to say hi and just broke down in tears in the middle of the waiting room. My friend Sydney then text asking where I was and she came up to meet me and usually we have a lot of banter and talk so much but I was just silent and I told her what happened and so she text her boss saying that she wasn't going back to work and we spent the rest of the day together. Mum was speaking to Jackie one of the other transplant co-ordinators and was crying to her. Mum then treated me and Syd to Nandos and then we went off to west end to try and cheer myself up even though I looked like a tramp from crying and wearing gym clothes. We was going to go bowling only to find that they had shut it down so we went to a bar but that was closed down too, the day was just getting worst and I was in pain so we ended up in Planet Hollywood and managed to salvage a bit of the day. I was just really grateful to have Syd there for me, don't what I would have done had she not been there.

Okay I think I've written way too much now so if your still awake at this point I'm sorry for rambling on.

Some good news :)

As mentioned in my last entry I had an upcoming interview to return to work as an HCA but as an agency worker to start off with. I was reluctant to attend as I thought that I would not have a chance of getting through the interview process and passing on the health clearance stage. However, I am not one to pass up opportunities in life as you never know what could have been and I hate living thinking 'what if?'.

With the help of a really good friend who has done the interview process twice I managed to complete the online assessment and she helped prep me for the interview I attended the recruitment day 3 weeks ago and I am pleased to share that I passed the test, the face to face interview and the documentation stages as well as the initial occupational health stage, all I now have to do is to submit my immunisation report from my previous job at Kings and when I have met all the requirements they said that I could start booking shifts for work as I don't have to attend training first as I have done them in the past as part of my previous employment and plus the fact that I have previously worked for them. However I will have to do the refresher training courses as my ongoing training and development which have been booked for August and September.

Other good news to share is that its 9 months since my last admission. Every day/week it always crosses my mind that it could be today my luck ends and I'm gonna have to go back in. I've had a few recent scares in the past month with the encephalopathy coming back. However, fortunately for me it wasn't severe and I was able to recognise the symptoms early and treat myself at home with phosphate enemas and lactulose before it got worst and I would have had to go back in.

12 years on

Today marked 12 years to the day since my first liver transplant and my post liver transplant liver journey began thanks to the kindness and unselfish act of my donor family at their time of grief. Rachel and Christopher I will always be eternally grateful for your gift as it gave me a new lease of life and five amazing years which I wouldn't of otherwise had. I pray and think of you everyday and hope that someday in the future we can meet and I can say thank you to you both in person.

Although I no longer have that liver I could not forget what it did for me at the time and I managed to have a great post transplant life for a few years before I got sick again and eventually needed another liver.

update...

So it's officially half way through the year and I am pleased to say that still no hospital admissions. However, I still go to Kings often, almost every week for one thing or another but it beats being an inpatient. 

Things are starting to go well again after my little blip in February and March as I am starting to feel a bit more energetic and happy again thanks to my lovely boyfriend who has brought light into my life again. He has been amazingly supportive and very loving that I can't ask for much more. 

Also I have a job interview this month to go back to work as an agency HCA to start of with so hopefully will get that as I really am missing work and its another part of my life getting back to normality.

2013 so far...

We are already into the third month of the year and already it's been a roller coaster but thankfully not in terms of hospital visits as I haven't been an in-patient so far but have had some close calls. The roller coaster is in terms of emotions. I've been keeping up with my therapy which has had a positive effect as my panic attacks have greatly reduced but I'm still battling with certain demons.

The year started off great. I was in a positive mindset, motivated and energetic. I thought I was on a roll and my self-esteem was slowly increasing. However, that slowly started to unwind and am finding myself back in the middle of a downwards spiral yet again. I've figured out to get back on track I need to make some harsh decisions about certain people in my life as removing negativity may help me be more stronger and positive. I'm not used to being harsh but I realise I need to start thinking of myself for a change.

Some positives of the year so far is that I finally got motivated enough to knuckle down and get my first assignment done and passed, now to tackle the next two. Also I've made another great liver friend who in my eyes is amazing, strong willed and gorgeous. She has been through a lot in the past year and is still battling with problems that come with liver disease but she still manages to smile and be there for others. Sydney, love you girl! I love all my liver peeps, they are always there for me and never judge me. Although I have a lot of other friends they don't seem to get me and my life the way my liver peeps do so I feel so lucky to have them. I always said that the greatest thing to come out of having liver disease is the amazing people I get to meet along my journey. They are gifts from God.

Celebrating 31 years of my life :)

As a child you get excited and look forward to your birthday but as you get older the excitement dies and you actually dread getting older, well it's true in my case. However much i dread getting older I also see it as a blessing because every year that passes is a precious gift from God. Over the past 31 years i have defied many odds through my health and when i was first diagnosed with Biliary Atresia prospects and survival rates were not great in the 80's and many children didn't make it past 2 years old therefore my chances were not great. However it seems like God has other plans for me because I made it into my teens without any major health issues post Kasai at 6 weeks old and it wasn't until i was 14 when i began to show signs of my liver deteriorating and I was placed on the national transplant list at age 18 and had my transplant a year later. My  full story can be found in earlier posts.

Last year i spent my 30th birthday in hospital due to complications post hernia surgery. I was on TPN so was not allowed to eat. It wasn't exactly how I planned to celebrate my 30th but that's what life is living with liver disease. My family, friends and the hospital staff all tried to make it as special as possible and loads of people came  bringing cakes and food. Although I wasn't allowed to eat any of it it, it was nice to be able to share it with the staff and other patients, also was lovely to have so many visitors which lifted my spirits.

I thank God for helping me get through the past year as it has been tough and there have been times when i wanted to give up but through his guidance and comfort I've managed to see it through and am finally beginning to feel a lot better. I have been home now for 3 months which has been my longest in a year and i'm happy to say that although i'm not 100% better yet I am positive that things can and will only get better from now on and i hope to start re-building my life again.

Lord thank you for 31 years of life and for blessing me with an amazing family especially my one in a million Mum and great friends. Also thanks to the wonderful Liver team @ Kings College Hospital for saving my life numerous times, without them I wouldn't be here today.

Goodbye 2012...Welcome 2013!!!

Another year has ended and started but I'm glad to see the end of 2012 as it was definitely one of the worst years of my life. I want to forget all that happened in the last year and start a fresh, hoping and praying that 2013 will be a good one as I have a lot of goals that i want to achieve this year. I am no good at keeping to resolutions so instead I make goals. However the most important thing for me is to stay healthy and stay out of hospital as  I think i broke my previous record in the number of admissions I've had in a year. here's to a happy and healthy year to all my family and friends.

Thank you to everyone who has supported me through the tough times. I am blessed to have such amazing people in my life.

To my donors thank you for the precious gift...R.I.P! To my donor's families may you be comforted by the love of  Almighty God.

H.A.P.P.Y ~ N.E.W ~ Y.E.A.R

2013!!!

Complications

As mentioned in my previous posts and in classic Maribel style I had numerous post op complications. As usual I developed numerous infections and my wound developed MRSA and e-coli like it did when I had my transplant, therefore they had to re-open my wound and leave it open. I then developed sepsis and kidney failure and required invasive intervention within LITU. Things then got worst and I got duodenal ulcer and perforation which required surgery and several months of TPN and being nil by mouth. Finally to top it off I got portal vein thrombosis so am now on daily clexane injections. Also, with all the numerous antibiotics for infections I suffered a few allergic reactions.

Since my discharge in April and apart from the encephalopathy that  i have talked about I have also had  trouble with my breathing. I can't mobilise without becoming breathless. I have a Lung function appointment in the new year as I think it could be asthma as i often find myself wheezing a lot. Also i was tested for diabetes again and am on the cusp of becoming a diabetic which I really don't think I could cope with again. Since my allergic reactions my skin has become very bad so have been referred to a dermatologist specialist to have some patch tests done.

Finally, after such a traumatic year I have become very depressed again and been suffering from severe panic attacks which happens at least 3 times a week and I don't know how to control them. It's so depressing and as well as my insomnia it makes sleeping at night very difficult. The transplant co-coordinators and social worker have been good support and have set up psych sessions for me in the new year as they think i may need my anti-depressants to be reviewed and increased.

So as you can tell it's been quite a rough year to say the least!