After PSC – New Beginnings

PSCSo, I am now at home and what could be better? Well, let me rephrase that. What could be better after a Liver Transplant and no more PSC?

After the settling in period, contemplating life becomes second nature. I am still here, I am no longer itchy but, where was the safety net of the hospital?

I am now going solo and kept telling myself that I can do this, I’ve got this and, as the days went by, I had it.

In the beginning the District Nurses came to change my dressings as I was still leaking and, over the time I remember 3-4 different Nurses visiting and for each one, I had to explain that I had a Liver Transplant because of PSC. At this point I will make it clear that I am not an alien from Mars with green horns. I am just little old me that used to have an autoimmune disease called PSC. Of course they were none the wiser so being typically British, I diverted back to the weather.

Because of the transplant, it is not easy to move around for quite a while and, I personally found it a struggle to get on and off of the settee, as well as in and out of bed; you also don’t consider how low furniture can be. Well, I did have my mum to help push me from behind but, I had visions of her catapulting me across the room.

If I needed anything in the night, I could call her for help so we left the bedroom doors open.

Picture this… I am calling out for help in the night but, my mum was fast asleep and could not hear me. I then decided to send a message to her phone. Ping, ping, ping but, still nothing. The last resort was to call her mobile phone! She came to help which, we laughed about afterwards. It wasn’t an emergency, I hasten to add but, so much for call me if you need me.

Eventually, we were lucky enough to be loaned a pillow lifter for use in the bed which fast became a lifesaver. I could now get in and out of the bed easier and on my own. If you feel a pillow lifter may help you, you can view the one I used by clicking here.

Furthermore, as we know, before transplant and while having PSC or any long term illness we have a cocktail of pills to take and, this does not change after the transplant. However, they do get less and less as the blood levels go back to normal.

That reminds me. The first time I went back to clinic after the transplant and saw how well my liver was doing, it felt like a miracle.  At this point I wanted to hug and kiss my consultant. Not appropriate I know but, never the less, the news left me feeling extremely grateful and very happy.

Trips back to the hospital were weekly and got my head spinning. The typical discussions consisted of… If I won the lottery I would love to move to Hampstead and, whether we should get a coffee from Costa now or later.

Consultations are not only great for the patient but, the Doctors / Consultants as well. They see us pre and post transplant and, in effect they see the bad and then the good side of us. What a rewarding job that must be. Respect to each and everyone of them.

Can I, at this point, fill the rest of the post with the word THANK YOU because, we all have a lot to thank our own Doctors, Nurses, Consultants and eventually our amazing Donors and Surgeons for.

Click to continue reading my journey

Stay strong, stay positive and thanks for reading.

Peace Love & Light

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Comments
  1. I agree, we are so lucky to have the NHS, they’re a fantastic team! I tried to say “thanks” to my surgeon and got emotional, he said “it’s team work” and wasn’t taking any of the credit!

    Awaiting the next chapter…………….

  2. Hi Matt,
    we have been in the same boat, though my transplant was 1 year earlier 🙂
    Stories like yours are great to read, for pre- and post transplants.
    I’m not familiar with the knowledge that is transferred to you in the hospital but experience shows that picking up some kind of non-contact sport will support your recovery. Even more than that: sporting will get you more healthy than non sporting transplanted people.
    In the UK you have British Transplant Sport. Take a look what they do.

    [ my story: got triple transplant in july’16. Liver because of PSC. Last june I climbed the Mont Ventoux twice by road bike and also in june I did 3 road races at the World Transplant Games in Málaga. Sport was out of reach for over 20 years prior to Tx.
    In Málaga the British Team was the biggest, won the most medals and impressed me and many many others ]

    • Hi Frank,

      Thank you for your email.

      Before I got PSC, I was very sporty and, tried to keep fit while having PSC with walking, weekly Yoga classes and press ups. I think I will get back into it once my hernia is fixed but, have a way to go to catch you up. 🙂

      Hearing your brief story is very inspirational. Thank you for sharing.

      I wish you all the best,

      Matt

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