AT HOME AND LEARNING SO VERY MUCH

Welcome to another stage of my journey - this one much clearer in my memory - the days of being at home and learning to live again, learning to cope with appointments and all the things I have to do.

There were so many appointment to keep for check ups and procedures that the first two months at home went by in a whirl of those and then afternoon sleeps to recover.

There was a whole list of things to be done and slowly I worked my way through the list and has Pap smear, Mammogram, Bone Density Scan, Flu shots, Dental work and many others. There were regular appointments at the Liver Clinic at Flinders and I think the car started to know it's own way there.

There was a little "tweaking" with medication and dosage and a tablet was introduced to keep my blood pressure much lower - High blood pressure is a bi-product of some of the anti rejection medication.

The Biliary Stent had to be changed often and this was done on 

April 22nd. 2010

May 6th. 2010

August 12th. 2010

August 26th. 2010

September 24th. 2010

March 24th. 2011

and on that September 2010 procedure a metal stent was inserted which gave me six months without needing to return to Flinders for it to be changed.

My hair was starting to grown again but was in dreadful condition and each time I saw my Hairdresser she was a little happier with the condition of my hair.  My finger nails and toe nails were not a pretty sight and I wore band aids across my nails for many many weeks - apart from hiding the mess, it was a protection for me so that what little was left of the nails did not get ripped out.  I wore gloves to shower and wash my hair - it was largely a matter of learning how to handle what was happening to me and working around it

.

In the pre-transplant education literature there is mention that some medication can cause hair loss, but it is believed mine, and the loss of the nails is due to the trauma of Stevens Johnson Syndrome.  I have been in touch with others who have had the same experience.  I was lucky I didn't lose all my hair but it was very thin.  My finger nails have grown back somewhat stronger than ever before but my toe nails are still struggling.  Not a big price to pay for life.  They are not pretty but are a reminder of the battle I have won.

I was embarrassed about the hair loss and the loss of nails until I gave it much thought and realized that they too were marks of victory won in a great battle for my life.

A Doctor at Flinders recently referred to Stevens Johnson Syndrome as being like Anaphylactic Shock for the skin and being the only life threatening condition of the skin.

During the August 12th. procedure they could not remove the plastic stent as it had become quite embedded which meant that two weeks later I was back to have the procedure again and this time they were able to retrieve it.

September 24th. 2010 saw the insertion of the first metal stent and a time lapse of six months before anything had to be changed.

The current procedure was neither pretty nor pleasant - even with Xray they were unable to find the metal stent and I was advised that they felt I had passed it and that things were quite "gunky"  They were surprised that I wasn't feeling unwell.   I had had a incident of sickness which was attributed to a urinary tract infection and the "mobile" stent was probably the cause of that.

This time I vomited in Theatre and was quite nauseous post procedure, but with medication this was quickly brought under control.

The date for the next procedure and change of stent is September 22nd. 2011 another six months between changes and that pleases me.

There is much more I could tell about learning to cope with the huge changes in my life.   Shopping is different because I take anti bacterial wipes and wipe down the handles of the shopping cart to reduce to chance of infection.  I also wear disposable gloves to shop - I get strange looks and often asked questions. People are genuinely interested and when told that I have had a Liver Transplant they are full of questions.  It often provides the opportunity to talk about Organ Donation and encourage people to talk to their families.

I did have a lovely experience while shopping one Saturday morning when a young man was operating the cash register as I was checking out and the discussion got to Blood donation - he proudly told me he was a Blood Donor and then told me his blood group which was the same group as mine.   He beamed and said - "Hey you could have some of my blood inside you."

He was so proud and called out to his workmates saying "This lady might have some of my blood."  it was lovely and I was proud of him.

So that is my story - I shall add to this and keep the Blog updated with any changes, improvements and experiences and changes in medication - it has been a rough journey but looking back it could have been so much worse.  I could have waited very much longer on the waiting list and could have died waiting - many people do.

My own body could have rejected the donor liver which saw me through Stevens Johnson, and that gives me cause to be thankful.

I clearly acknowledge the wonderful young Doctor who recognized the symptoms of Stevens Johnson straight away and called in others to map out a course of treatment.

Libby, Kylie, Nicole and Adele - you hold special places in my heart and you still encourage me when I see you.  You are a wonderful team of wonderful and dedicated individuals.

I give thanks daily for Surgeons of great skill, Medical and nursing staff and the wonderful nursing teams who kept me on track and encouraged me every step of the way.  On good days and bad days they were there and none of them will ever be forgotten.

There is of course the debt of gratitude and love I owe to my Donor and his family.  My Donor for wanting to donate his Organs and his lovely family for honouring his request and being sure that it was carried out.  I live because of their generosity and I am thankful.

That's the story of "A Liver for Linda" and there was one for me and I live to tell the story.

Love and hugs.