A good clinic update finally!

Re-post- originlly posted on 04/04/14

I finally got to see Prof Heaton yesterday although I had to wait 4 hours. My appointment was at 9:40am and I got seen at 1pm due to there being 3 transplants going on which he had to set up first. 

During my appointment the first thing Prof noticed was the difference in my breathing and my overall appearance and was very pleased with the improvement as he said he was very worried that I was deteriorating very rapidly with the Pulmonary Hypertension and was afraid that it wasn't caught in time and that I may not have survived much longer. Obviously he didn't tell me at the time how concerned he really was as he didn't want to get me down even more but now that I am improving he was so pleased and told me how he really did feel.

I then asked him if I could go on holiday and he said that on the liver side it's all good and I can but to ask Hammersmith regarding my heart which I said I did and they said I can but would need to have an oxygen tank during the flight which the airline should provide for a small fee if it's a low cost airline but the major airlines usually provide it for free. I finally sent of my passport for renewal so once it arrives, here I come world!

I also mentioned that I got a job as HCA again and he said it should be fine as long as I take it slow at first and that it is sensible of me that I start off as part time.

So all in all a great clinic appointment which I was not expecting and everyone I bumped into said that I looked a lot more well and had noticed my breathing and walking. This time I have 3 months off as he don't want to see me until June. However, he still wants me to see the other Prof on the medical side as although I am improving with the PHT he still wants to come up with a long term surgical intervention plan once my heart is completely stable and can withstand GA as the medication is only going to help control my symptoms and not cure the condition which he ultimately wants to do. However it is no longer a matter of urgency now as my improvement has bought us more time.

Good Bye 2013

2013 you have brought me a lot of joy and it was all going well  in the beginning but then it all went a bit wrong towards the end. I will cherish the good times and blessings and hope to move on in a positive way from all the negative things.

I pray that 2014 will be a better year for myself and my family and friends. Also to my amazing Liver family who have been there for me throughout my journey, thank you so much and i pray that your loved ones have a healthy and happy year ahead. To all the the precious children/people who have gained their angel wings this year may you all rest in peace.

If you are reading this and are not an organ donor please take a minute to register, as many people are dying needlessly and people like me won't be alive today if it wasn't for that precious gift given by someone in their hour of great loss and tragedy. It's a new year and many people are waiting for a new life.

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

2014

End of year health update

Well I knew it was too good to be true that things where going so well for me this year as the past few months have been quite difficult for me especially the last two what with being diagnosed with type 2 diabetes and pulmonary hypertension, and if that wasn't enough to deal with the encephalopathy decided to make a return while I was in hospital having tests for my pulmonary hypertension which meant that I had to stay in hospital for longer and my treatment for the pht had to be put on hold until the enceph had cleared.

Initially I was very anxious about the thought of being admitted and treated at a different hospital that I was not at all familiar with and really didn't want to go, but fortunately for me my Hammersmith experience was great. The staff and the quality of service is outstanding. I can't fault them for anything and my PHT consultant is very nice, has a lot of empathy and incredibly supportive. After I had all the tests she came to tell me the results that my pulmonary hypertension is at quite a significant stage and immediate treatment is needed. However, she doesn't suggest that surgery will be such a good option for me but will leave that decision up to my Liver surgeon who knows me best and will be the one to do it if need be. Her suggestion is that she starts me on a new drug called sedenafil which will reduce the pressure around my lungs and heart and will eventually allow me to walk without becoming breathless and tired and hopefully can live my life again and go back to work.

Last week I had another clinic appointment with Prof Heaton again to discuss the results from Hamersmith and he said now that I am on the new drug treatment there isn't an urgency of surgery now and he wants me to be on them for minimum of six months before he makes a decision as to what surgery would be best for me. Although my PHT consultant said that she don't think that surgery would be wise in my case Prof thinks otherwise. He thinks long term surgery will be the best option for me but wants my symptoms to be stabilized first as if he was to do anything surgical now it would be far too risky on my heart.

Since November I have had two major episodes of encephalopathy which required admission. The first being whilst I was in Hammersmith. I woke up with severe jerking especially my head and was slightly confused and the second episode followed my collapse at home. I was not answering my phone so mum came to my flat to check on me only to find tat I had passed out on my kitchen floor. I can't recall how I got there and the doctors think I must of fainted and just fell. That night i was in a lot of pain so mum called the ambulance and when I got to A&E my condition deteriorated with the onset of encephalopathy until I became very confused and couldn't string a sentence together as my speech was very slurry. I was at stage 2 and could not determine what year it was, how to eat and couldn't hold anything. Again they tried to get me transferred to Kings but still no beds. Also during my admission my blood sugars went crazy so was given insulin and started on metformin. When I was discharged I was  told that next time I become enceplopathic to go straight to Kings as being such a complicated case they don't want to interfere with my treatment at Kings. However, i explained that the ambulance will only take me to my local hospital so I have no choice unless I risk taking a cab next time.

Since my diagnosis my overall quality of life and emotional state has yet again gone downhill and I haven’t been able to enjoy all the good things that I had achieved earlier in the year when things were going great. I haven’t been able to start my job, my relationship with my boyfriend has suffered and although I’ve moved into my new flat I haven’t had the opportunity to become independent again as most of the time I have someone staying with me, usually my mum, Sydney or Emily in case I have another fainting episode.

To top it all off I feel so upset as my support system is no longer going to be there due to people moving on in their careers and I only trust and talk to certain people so when they leave I will feel lost again and I really don't know how I am going to cope emotionally. 

Well I think that's most of it. I will try to update more often next year, but hopefully with more good news. 

CONFIRMED - I have Pulmonary Hypertension :(

Since my last post things have just gone down hill again and the past few months have been a great struggle both emotionally and physically. As I mentioned last time I was due to be admitted to Hammersmith Hospital to undergo some further tests in order to confirm Prof Heaton's hunch that I may have Pulmonary Hypertension and to see if how significant it is which he also thinks it has already reached a significant stage as my symptoms would suggest.Also I have noticed that every week I am finding it more and more difficult to breathe and it takes a lot out of me just to do the normal everyday activities such as making my bed, doing household chores and even just getting up to go to the toilet or dress myself. I have to do most things sitting down and I can't lie flat as I can hardly breathe when lying down, so I have to sleep propped up with loads of pillows or sitting down which makes sleeping very difficult and uncomfortable and its not like I don't have trouble sleeping anyway due to my insomnia. Actually I can't remember when was the last time I actually had a good quality sleep and when I am in hospital the nurses always ask me if I ever sleep.

During my elective admission at Hammersmith Hospital (Imperial) I underwent numerous procedures and tests including a cardiac catheter, walking, breathing and bicycle tests over three days  and was due to be discharged as soon as the results came back and my consultant had decided as to what the best treatment plan is for me and discussed my options. However, in classic Maribel style on the day of my discharge I woke up very confused, intense jerking and my speech was very slurred so when my consultant came on her ward rounds and intended to discuss my results and her plans for my treatment she was shocked to find me in the state I was so she immediately rang the Liver team at Kings to try and get me transferred as they do have a Liver unit within the hospital and due to my complicated medical history she said she didn't want to interfere with my Liver. However, as usual Kings never have free beds so was put on the waiting list which was quite long therefore, I explained how thy usually treat me whenever my encephalopathy comes on so they just loaded me with lactulose and phosphate enemas over the next few days until I was completely back to normal and by that time a bed still had not become available at Kings so instead I was discharged the following Monday. My initial four day planned admission turned into eight days.

Due to my encehalopathy episode unfortunately my PHT consultant suggested it was best not to start the new drug treatment until I was completely cleared of the enceph as it could mask any reactions and side effects of the new drug. as soon as I was no longer confused and could talk properly she sat down with me and discussed my tests results and the treatment available and what she suggests was the best option for me would be.

RESULT based on the following tests:

1. Metabolic exercise test
2. Lung function
3. Right heart catheterisation
4. V/Q scan & CPTA
5. Autoimmune serology
6. Viral serology
7. Thyroid function test
8. Echo-cardiogram

Diagnosis consistent with porto-pulmonary hypertension. Treatment with vasodilators was discussed and decided with my consultant.

On December 11th I was admitted for a day case to begin treatment on the vasodilators a medication used to improve and control the symptoms of Pulmonary Hypertension as it lowers the pressure around the heart allowing me to breathe easier. It is not a cure but will hopefully improve my quality of life. Although the treatment is non-invasive as it is only taking a pill three times a day it was still important that it was done as a day case in order to monitor me for a few hours after taking the firs dose as one of the side effects is that it can lower blood pressure significantly and if that is the case then they would have to find an alternative. Also due to my history of drug allergies and reactions to new drugs was more reason for me to be monitored. So they started me on the normal dose of 20mg and after an hour my BP dropped significantly  and after another hour it dropped again and so by this point I was getting worried as the nurse said that if the next one has gone down more then they would have to inform my consultant and that I would possibly need to be admitted overnight which I was praying would not happen. Fortunately for me the next reading had not changed much. It didn't increase but  did not go down too much so I just about got away with it and was allowed to go home. They gave me one month supply and said that it will take maximum of 6-8 weeks for it to start taking affect  and if by that time I don't feel any different then they will increase my dose as the medication I am on for my encephalopathy reduces the affect of the sedenafil (vasodilator).

t has been 2 weeks since I started the new drug and I haven't felt any different which I know is normal as they did specifically say 6-8 weeks. I really hope this treatment works as my quality of life is getting worst by the day and on top of my insomnia as to why I can't sleep , now I can't lie down flat as I cant breathe so I
have to either sleep sitting up right or my head propped up on loads of pillows. Also just doing the little everyday things is so difficult, for exaple washing just one dish or cooking something takes up so much energy and I feel exhausted as well as getting up during the night to go to the toilet which id like right next to my bedroom gets me so breathless by the time I get back into bed. You would think I've just ran up 10 flights of stairs by the way I am puffing and gasping for breath. I'm so fortunate that I got this ground floor flat because I can no longer  go up and down stairs so when I go to mum's or visit family and friends it takes me about 15-20 mins to get up 2 flights of stairs and have to stop on every level to sit down and catch my breath before I can go up the next set. Being such an independent and outgoing person I am getting so frustrated not being able to do things for myself and going out is not as much fun any more cos of all the aches and pains and having to stop all the time. It is really getting to me now and getting me more depressed. When is it all going to end? I often ask myself!

Bitter sweet

I'm calling this post 'Bitter, Sweet' because that is basically how I'm feeling at the moment with everything as things are finally coming together with my flat which is now completed and I should be getting  the keys either today or tomorrow which is exciting as I can't wait to start decorating, shopping and moving in. Also my job process is almost complete so am hoping to start booking shifts within the next few weeks.

Then on the flipside, I've got impending admission at Hammersmith hospital for further PHT tests to determine the severity is so that Prof Heaton and my PHT consultant can decide what the best treatment plan is for me. Also this Thursday I finally have a dental appointment which I have been waiting for since April and hopefully my dentist has a treatment plan for me as I'm getting really depressed with my teeth and I also need to get it sorted before any further surgery.

Since my diagnosis I must admit that I haven't been coping well and have sort of hibernated from most people and have just been feeling so de-motivated which meant that I missed my deadline for my course so have had to extend it for a further month which I am hoping to do now. I've just been spending my time either on my own or with Syd who gets my situation unlike my other friends.

Friendships

One of the greatest gifts I have been blessed with and that has come out of living with Liver disease is the amazing people I meet throughout my journey and life. As a child I was never really seriously ill despite my liver condition, therefore I managed to live a pretty normal childhood and most of my teenage life where I had made some really great friends throughout my school and work life some of whom I am still good friends with. However, the past few years when my health began to deteriorate and especially the past 7 years where my life has been up and down with my health and on numerous times have come close to death I have come to realise who my TRUE friends are and more recently I have learn't that it's not how long you have known a person that makes a good friend but who is there for you in your times of need as well as the good times and I have been fortunate to have met an amazing young woman who also has a liver condition and has had a transplant. When I followed her story on a Facebook liver forum I saw that she was suffering with some of the same issues I had post transplant and so one day after my outpatients appointment I popped onto Todd Ward and decided to pay her a visit and that was the beginning of  what would be an amazing friendship. I never expected it to grow into such a close relationship as I try not to surround myself too much with liver people now as in the past I have got close to a few people and they have passed away which has had such an impact on me and my mental health. The first few months following our first meeting we bumped into each other numerous time at clinic but it was just hi, how are you? and bye until we eventually swapped numbers and started meeting up at clinic without our mums and going for lunch at Nandos then eventually meeting up outside the hospital environment for dinners and days out which led to us getting closer every as we found out we were very similar personality wise, sometimes too similar which freaks us out. If ever there is a twin of me anywhere in the world I think she would be my personality twin, now I just need to find my look a like twin.

I've just realised that I've been talking about this amazing , strong, funny, crazy young lady and haven't even mentioned her name. I think I have mentioned her in previous posts but for those who don't know she is my biatch Sydney! :) Although there is an 11 year age gap between us it doesn't make any difference and like all relationships age is nothing but a number and I can honestly say that she is one or if not my best friend and even though we have only known each other for 9 months she has been more of a friend to me than some of my other friends who I have known for 15 years or my whole life therefore I felt she deserves the acknowledgement. I love you to bits Sydney and you will always be my biatch. We WILL beat this liver disease and live happy lives as good nurses oneday. I will ALWAYS be here for you babe.

Also to all my other friends that have been there for me or have had fun times with I love all you guys and thanks for being part of my crazy life.

Finally to my liver friends that have gone...I love and miss you all...Sweet dreams...
Aneisha Patel
Zara Bakri
Nicola Oldacre
Faith Ong
Daniel Beamish

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.