Sue's Transplant Blog

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June 10th

It’s been a tough week. Have felt increasingly unwell seen at home by a doctor from the local surgery with talk of admitting me to hospital or organising respite care of some form.

My own GP was obviously concerned and got in touch with my consultant at the hospital. I was subsequently called to see him and where he informed me I would be moving up the transplant list to super urgent. I decided not to ask what the recent ultra scan showed, it clearly wasn’t anything too good!

There are a number of ulcers on my legs that won’t heal, I’m looking quite yellow, I’m tired and I’m staying to think I might be beaten. I think I really am ill. I can’t tell my husband, or anyone else for that matter, but I’m scared that the children might come home and find me cold. I don’t want them to remember me like that, I think it’s time I was admitted.

Stood in the vets, two of my children are in different towns with friends attending sports clubs, husband is working in south Wales and the cat decides to pull a sickie!

As I wait, my mobile rings, it’s London hospital they have a bed for me and want to start plasmapheris treatment for the itch, can I get there tonight for a weeks treatment?

I phone my brother tell him it’s a call, not The Call but a call. I’m very tearful, have know idea how I’m going to get to London. Of course he offers.

It takes three and half hours to travel there. We joke about how funny it would be to arrive and then get The Call and have to drive all the way back again.

I hate cities, having said that the room I’ve been given is private, it has an almost pretty view as the sun sets it’s not too bad. I’ve bought  my fleece blanket, I can’t bear anything else touching my skin, I can’t sleep, I’m tired but feel too itchy and restless for sleep. My mind is busy…I don’t think I’m going to get through this.

I watch the sun rise, it’s quite stunning really, there’s a church in the distance, the roads have traffic on them all night, I can see the ambulances as they come in.

take an early morning shower and sit playing with my hair, feel more comfortable now I’m in a hospital.

Mobile rings and the voice on the other end says “hello, this is the transplant coordinator from the hospital, we have a donor for you”

When I tell them I’m in London they say they are going to blue light me back to my transplant hospital. Oh my goodness!!

I can’t get hold of my husband, his phone had run out of battery, I can’t remember the name of the hotel he is staying in. I call my brother, tell him I think he had had a wasted journey, he thinks the treatment has been cancelled, is shocked when I tell him it’s The Call!!

A fast and furious effort to sort child care,  tell the children, parents, close friends. The children are distraught, still can’t get hold of husband. I try his work place, it’s a bit early but he is there. He is a little shocked but tells me he is leaving now. I’m calm, calmer than all those around me.

I can see the ambulance with lights flashing come up the road through the building traffic. Before I can turn around I’m sat in the back and we are on our way.  It’s happening.

Husband beat me to the hospital, I dread to think how!!

We meet with a transplant coordinator, amazingly she lives close to me and even has a relative from the same village.

Things suddenly become more serious. After a few painful attempts they manage to hook up to a vein. I’m bombarded with information. The donor is a young woman of 20, she hasn’t passed away yet but is in a “irreversible state”  her mom is with her while brain activity levels are being tested.

There are a number of possibilities. Should she be deemed as brain stem dead, this will be the best state for the organ and transplant, then the liver is likely to be split between me and a child, this will mean a lengthier stay in hospital, possibly up to 3 months.

If another patient is brought in in a more desperate state, the organ will go to them. If the tests show some activity and the machines are turned off, the donor will be classed as cardiac death, the organ will more likely just be suitable for me, unless she didn’t pass within the hour, in that case the organ will no longer be viable for transplant. Nill by mouth until further notice.

A couple of hours pass and the coordinator tells me there is still brain stem activity a second test has to take place before a final decision is made to turn the machine off.

I am heartbroken,  I’m willing her to open her eyes for her mom, I don’t want this girl to die. This is the worse feeling.

It’s decided there is still brain stem activity, the machines will be turned off.
Again I’m heartbroken, now a child will miss out on the organ, the donors mom must be distraught.

I embarked on a trial for organs to be transplanted using  an organ normothermic liver perfusion device, basically the liver is transported in a warm box not ice, this means the liver can be kept for longer.

The surgeon decides that if the girl passes within the hour time zone once the machine is turned off he will wait until morning before surgery, so the surgical team can be well rested, the light will be good and a full nursing and after care team will be available.

The girl passed away with her mom at her side.

I’m to be ready at 5 am for surgery.

Husband persuaded me to go for a meal in the city. Have I mentioned how much I hate cities, I feel too distressed, too fragile to go. He persuaded me that this would be a good thing to do, he wants to be with me out of the hospital. Lots of phone calls to and from family and friends to update them on the plan.

After our meal we return to the hospital. I breakdown. I don’t want this girl to have died. We sit in the eerily quiet hospital reception area until the early hours, I speak with two close friends through the night. I’m so sorry, so very sorry this girl has died. I feel utterly responsible. I have never felt so low.

We return to the ward, I’m in a bay of 3 others, one lady tells me she is recovering from her second transplant in just a few days, the first, from her son as a living donor, rejected. She seems to still be confused, repeating herself and retelling her experience over and over again.

We decide it’s time to say goodnight, husband leaves me on the ward and he makes his way to the relatives quarters..

I have no view to look out of, my bed is against a pale blue wall with a window onto the corridor.

I’ve said my goodbyes to my loved ones, I’ve thanked my parents for all they have given and done for me. There’s nothing else i can do. I feel very loved but very alone. I think of the donors mom. I want her to know I’m so very sorry. I wonder if she too is alone.

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