It's only just over 2 weeks into the new year and boy has it already been emotional and heartbreaking. Having to accept that my PH is progressing quite quickly now and the thought of such an uncertain future is hard to deal with. My liver Surgeon is still very adamant on the portal vein reconstruction although it poses huge risks and no guarantees, plus the fact he wants to put me on the ECMO for at least 3 weeks before doing the surgery makes me much more reluctant. Then on the PH side my consultant is not as confident as my liver surgeon as my case is very unique and complicated which they haven't ever come across in this country and even worldwide. My history of complications post surgery be it major or minor is very extensive and i have yet to have any surgery that hasn't resulted in post-operative complications. Therefore it has left me with a big decision whether to take the risk of having surgery in the hope that my PH would be cured but if it goes wrong I could potentially be cutting my life short or spending months in hospital with even more problems.
My PH consultant also discussed what medication options are left for me and said that I am already the highest dose of the safest meds that they can give me without severely affecting my liver. The only other option is to have an IV port access to my heart and having a iv pump the medication through. However, with veins as bad as mine and my history with lines (cannula, picc & central), they never last very long as they either get blocked or infected very quickly and if that happens it could kill me instantly. Also the chances of having encephalopathy episodes are greater with that option and again that could also kill me. In the meantime am hoping that the increase in medication which I started last month will make a difference soon so that I can get out a bit more and it was suggested that I get a oxygen outlet installed at home and have a portable tank to carry with me when i'm out so that I am covered if I get too breathless.
As I sat in the doctors office and listening to all the very limited options I have, I felt numb, deflated angry and sad at the same time. Actually couldn't believe I was hearing such negative things as I felt like again I have lost control over my life and body. Fortunately, for me I have a great consultant who has a lot of empathy, explains things throughly until I understand and is just a very nice and warm person.
Then to top things off we found out that a good friend of my mums passed away recently and I also knew him as him and mum worked together for years and he would also visit me in hospital when I was ill and when I was young he use to tell me such bad jokes to make me laugh and put on silly voices when he rang to speak to mum. He was such a good man, so loving, funny and a dedicated family man. Yesterday was the viewing of his body and so I went with my mum as I wanted to pay my respect and say goodbye too. Looking at him so peaceful was so emotional as I just expect him to come out with his jokes and smile at me. He also died of a pulmonary disease which made it even harder and he knew exactly what I was going through. He was diagnosed a year before me and rapidly declined. At least now he is in God's hands and no longer in pain or suffering as he can breathe easy. Tomorrow is his funeral and cremation so will go with mum. It will be hard as the last time I was at the same crematorium I was saying goodbye to a very good liver friend of mine 4 years ago and am sure will bring all the memories again.
So as you can probably tell it's not been a great start to the year and I don't know what the rest of the year will bring but I still hold on to hope and my faith in God praying for strength, guidance, comfort and a miracle. Where there is life and God, there is hope.
Tuesday, 19 January 2016
My first hospice experience
Last week I had my first appointment at my local hospice (Marie Curie). When I got the call on Christmas Eve offering me an appointment I felt as if this is it, there is no more hope and that I have to prepare for the worst. During the holiday period I felt very anxious, depressed and defeated. I even contemplated on giving up all medical treatment including stopping all my oral medications as I thought that I had no more options.
After talking through everything with the hospice doctor I felt a little better as I felt like she understood where I was coming from, how I was feeling and took the time to listen. My appointment was only suppose to be an hour but I think we ended up talking for about 2 hours or even more that when we came out everyone said 'geez u was in there for ages'. She was so attentive, never did she look at the clock or check the time like some doctors do, she just listened to everything and together we came up with some goals and plans for the future. At first she was shocked to read about what I had already been through and she could see how frustrated, sad and fed up I was and one of our first goals is to get me some emotional help through counselling and then she suggested some complementary therapies which may help me feel better about about myself as well as some physio to help with my mobility and breathing. Also I explained how my living situation is not suitable to my needs anymore so hopefully a social worker will help me sort things out with the housing.
We then came to the unpleasant and difficult part of the conversation about my wishes and needs for when the time comes. I did explain that I had already done my own plan and wish list which I have kept just in case especially whenever I go for any surgery I make sure everything is written down. During my next appointment next month she told me to bring everything I have in so that they can put it in my file and make sure that everything is carried out how I want incase of any unfortunate event.
Yesterday, I went back for my first physio session and again the physio was so nice and we managed to get through an hour of assessment at the gym and come up with a exercise plan for me to follow which means I have to come to their gym at least twice a week for about an hour in order to hopefully build up my strength and improve my breathing during exertion. We found that I am quite weak so hopefully regular exercise will slowly build up strength and I will be able to do more things and may also help with my self esteem too. She also gave me a relaxation and breathing CD to listen too when i'm at home and want to just relax and to help with my insomnia.
I am now not so scared of thought of going to a hospice as it's not all doom and gloom and a place where people go when they're dying, it's more of a place to go for support and respite when faced with a terminal illness. I've already met a few patients who have been going for so many years and they love coming in even when they don't have an appointment as it's such a friendly and warm environment which offers a lot of other complementary therapies. I already feel so at home there that I actually am looking forward to going again on Friday as they have a relaxation session and hopefully will meet more people.
After talking through everything with the hospice doctor I felt a little better as I felt like she understood where I was coming from, how I was feeling and took the time to listen. My appointment was only suppose to be an hour but I think we ended up talking for about 2 hours or even more that when we came out everyone said 'geez u was in there for ages'. She was so attentive, never did she look at the clock or check the time like some doctors do, she just listened to everything and together we came up with some goals and plans for the future. At first she was shocked to read about what I had already been through and she could see how frustrated, sad and fed up I was and one of our first goals is to get me some emotional help through counselling and then she suggested some complementary therapies which may help me feel better about about myself as well as some physio to help with my mobility and breathing. Also I explained how my living situation is not suitable to my needs anymore so hopefully a social worker will help me sort things out with the housing.
We then came to the unpleasant and difficult part of the conversation about my wishes and needs for when the time comes. I did explain that I had already done my own plan and wish list which I have kept just in case especially whenever I go for any surgery I make sure everything is written down. During my next appointment next month she told me to bring everything I have in so that they can put it in my file and make sure that everything is carried out how I want incase of any unfortunate event.
Yesterday, I went back for my first physio session and again the physio was so nice and we managed to get through an hour of assessment at the gym and come up with a exercise plan for me to follow which means I have to come to their gym at least twice a week for about an hour in order to hopefully build up my strength and improve my breathing during exertion. We found that I am quite weak so hopefully regular exercise will slowly build up strength and I will be able to do more things and may also help with my self esteem too. She also gave me a relaxation and breathing CD to listen too when i'm at home and want to just relax and to help with my insomnia.
I am now not so scared of thought of going to a hospice as it's not all doom and gloom and a place where people go when they're dying, it's more of a place to go for support and respite when faced with a terminal illness. I've already met a few patients who have been going for so many years and they love coming in even when they don't have an appointment as it's such a friendly and warm environment which offers a lot of other complementary therapies. I already feel so at home there that I actually am looking forward to going again on Friday as they have a relaxation session and hopefully will meet more people.
Friday, 15 January 2016
Viva Italia
With everything going on and taking it's toll I have been feeling really low lately and although I spent the summer in Philippines I feel like it wasn't really a holiday or a break due to the circumstances so I thought I'd take some time out and go away for even just a weekend. Fortunately my good friend Ate Glenda was keen on travelling too so I had company. We managed to find a good deal on flights and hotel in Italy for 3 days so I went ahead and booked it for the first weekend in December. As the flight is less than two hours I did not need to arrange for oxygen this time which made things a lot easier.
Despite not feeling 100% well in myself I did manage to have a good time and it was nice to just get away for a few days, stay in a lovely hotel and do some sightseeing. However, due to my limited mobility and breathlessness I had to take things at a slow pace which meant we couldn't see as much as we could have had I had the energy. Anyway I guess it's a reason to go back in the future and hopefully see more. Now that I know I can manage little trips I want to make the most of my time and hopefully go on more short breaks even if it is just in Europe as there is a lot to see and I love travelling. This year I hope to do a lot more travelling and enjoy myself while I still can.
Despite not feeling 100% well in myself I did manage to have a good time and it was nice to just get away for a few days, stay in a lovely hotel and do some sightseeing. However, due to my limited mobility and breathlessness I had to take things at a slow pace which meant we couldn't see as much as we could have had I had the energy. Anyway I guess it's a reason to go back in the future and hopefully see more. Now that I know I can manage little trips I want to make the most of my time and hopefully go on more short breaks even if it is just in Europe as there is a lot to see and I love travelling. This year I hope to do a lot more travelling and enjoy myself while I still can.
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