Sunday, 25 May 2014

Becoming a Donor

It has been such an amazing experience communicating with Shane's Donor. I have asked him to share his experience, so that I can share it with you. You all know that Shane wouldn't be here without the generosity of his Donor, and I call upon all of you to sign up to the Australian Bone Marrow Donor Registry, if possible, so that you may be able to help others like Shane. 

It is a very simple process to sign up, and can be done at any Red Cross Blood Donor Centre. There are a few extra questions and blood test and you're done. 

The Donor registry needs in particular young males (under 45 years), who are of ethnic or mixed ethnicity background. But they will happily accept anyone who is willing to help! 

Did you know, that some countries have an "opt out" system when it comes to being an organ donor? Our system is an "opt in" system. The countries that apply the "opt out" are by far the biggest donors for the rest of the world! 

"It was only a matter of months after I registered on ABMDR that I received a call to say that I had been matched and asked if I would come in for further testing. I agreed and made an appointment. I gave a blood sample and filled out a questionnaire and was given a rundown of the procedure, as well as lots of printed material to take home. This was when I was made aware that, if I agreed to be the donor, once treatment had commenced, I could not change my mind as to do so would certainly cause the demise of the recipient. I asked "What can you tell me about the recipient?" and was told they could not disclose anything. I said " I don't want a name but can you tell me male or female, what disease they are fighting, anything?" They  relented and I was told the recipient is a 29 year old male from Qld with leukaemia. That bit of information gave me a reality slap. Here is a young man in the same position that my friend Jason had been in 6 months earlier. Same age, same disease.
 
I agreed to be the donor and headed home with my printed material to wait for the call to begin the process. Days turned to weeks and weeks turned to months and still no call. What had become of this young man? I had no idea. Finally I received a call from the registry to say that I had been on stand-by for 3 months and was now released from previous arrangements and returned to donor register. Again I tried for information on the recipient's wellbeing and again told they could not disclose anything. While I wanted to believe he was in remission, I knew there was a real chance that he had lost his fight. With these mixed feelings of not knowing, but knowing I had done all I could, I went back to my life.
 
Several months later, I was working at a minesite in Central Western Australia when I received an e-mail from ABMDR asking me to call. I rang and was asked if I was still available to be a donor. "Absolutely I am" I replied. I was then told my previous recipient had been in remission and now required a transplant. I arranged an appointment for when I returned home in a few days. Again the blood sample was taken and the obligatory questionnaire filled and again the procedure explained. This time, after reading my  printed material, I had some questions. I knew I had to have a series of injections for a week and the first would be given at the hospital. My question was would I have to return to Perth for the other injections or could I have them at Fremantle where I live? I was not ready for the answer. They told me that I would be giving them to myself and they would show me how when they do the first at the hospital. I felt this was an appropriate time to tell them that I could not possibly stick a needle into myself. No amount of coercion could convince me otherwise and they then asked if I had a friend who would be willing to help. Luckily I have a good friend who lives close by and I'm sure she would take great delight in poking me with sharp objects.
 
The date was set for the hospital appointment and I returned to work in the interim. The company I worked for were very accommodating in allowing me to fly home early and to have two weeks off, one for the series of injections and a week to recover. My friend, Reimi, and I arrived at the Red Cross Blood Bank (Home of the ABMDR) and were then taken to the hospital next door and through to a small ward. First up was a short video explaining the method of subcutaneous injection, proper hygiene, avoiding bruising and sharps disposal. It was then that Reimi was asked if she would be ok administering the injections. With a glint in her eye and an evil smile she replied "Yep." She then went on to say that when her father was battling cancer she would, at times, be responsible for giving him injections. I was then instructed to sit on the edge of the bed and lift my shirt. An alcohol swab wiped the area to receive the needle, and with a roll of skin pinched between fore finger and thumb, the needle was expelled of any air, then inserted to a depth of 20mm and the contents discharged slowly before the needle was removed and the area rubbed to spread the dosage and to avoid bruising. I didn't feel a thing. The needle was so fine. I probably could have done it myself. Nah who am I kidding? But that was it. With a small bag containing the remaining doses we headed home. Every day for the next 6 days, and at the same time each day, Reimi would come and give me my shot, usually while calling me a pussy or making clucking noises. A small price to pay. I was told to expect some pain in my bones toward the end of the week as my bone marrow was working overtime producing stem cells, and a few times I woke at night with pain in my chest and hips. A couple of panadol took care of this in no time and I fell back to sleep with ease.
 
On the day of the harvest, I returned to the hospital, to the same ward where I had the first injection. I was told to hop up on the gurney and get comfortable as I would be there for a few hours. I was then "plumbed" to a machine that took the blood from one arm, separated the stem cells, and returned the remainder to the other arm. This procedure is not painful at all and would be compared to a regular blood donation. Despite popular belief, they DO NOT drill holes in your bones and suck out bone marrow. (However this method is used for donations to babies and rarely as a last resort when stem cell transplants have failed.)
After the stem cells had been collected, they were handed to a specialist courier, that had arrived from Brisbane the previous day, and began their journey back to Brisbane and into my recipient. I was disconnected from the machine, given a big bag of delicious Fremantle Chocolate Factory chocolates and sent home. There were no after effects or recovery at all." 

Thank you so much for sharing this experience:) Hopefully, this helps anyone thinking about signing up to the registry, to make the move!

Peace

xx


Sunday, 11 May 2014

News

It was early on a Sunday morning. We were getting ready to make our way down the coast to meet with our Cribb Island Board Riders. I walked out of our kitchen and into the living room to see Shane sitting completely stunned and as white as a ghost. 

"What is it?" I ask. 

"You're going to have read it to believe it" he says. 

It was an email. 

A very special email. 

One we had been hoping for, but not sure if we were going to get it. 

I read this email with equal parts amazement, gratitude and bewilderment! 

It was from Shane's Donor. 

The man responsible for Shane's new immune system - Leaping Leroy Loggins! 

Unfortunately, his name was not Leroy (a topic discussed earlier) and for his privacy, we will call him Mr Donor for future reference. 

Mr Donor is from Western Australia and has children the same age as us. He signed up to the Bone Marrow Registry as a dying wish from his friend who passed away at the age of 29 years, due to a lack of a matching donor. That is pretty a good incentive to sign up, but a heart-braking one. We are sorry to hear about his loss. 

The email was so eloquent and it answered almost all of our questions. This part was the most touching: 

"You were very much in my thoughts the day my stem cells were harvested. I could only imagine how you must have been feeling after massive doses of radiation and chemo to destroy your bone marrow. I knew we were at the point of no return and I hoped and prayed that everything would go to plan. I was somewhat relieved, after the harvest, when one of the nurses picked up the bag of pink jelly like stuff and said "Wow! Look at this, perfect colour, excellent quantity and so quick!" They were very impressed."

"I was totally surprised to learn that, it was not up to you to accept my cells, but for my cells to accept you and that regardless of what blood group you were, you will now have my blood group. So, its only right to share something else with you, and i want you to feel free to use it, and its a saying I have, "Blood group and attitude - B positive". 

What a great saying and one that we firmly live by! 

Mr Donor is a motor bike enthusiast and since reading this email, I have been bombarded by "I want to get a motor-bike, its in my blood". All I hear is "blah blah blah, motorbike, blah blah blah"! Of course you can get a bike baby, but it will be over my dead body! I haven't fought so hard to keep you alive all these years, only to have you throw it away on the roads! 

As for us, Im sure you can all guess by the lack of blog posts, that life is returning to normal. Ahh, normality, so refreshing! Shane returned to work last month and is really enjoying it. His vision in his right eye is still a problem, but it is slowly improving. His is still on his immunosuppresants but even these are being reduced gradually. He is looking good overall, but still a shadow of his former self. We are enjoying our puppy. She has been such a welcome addition to our lives! 

We were able to go camping over easter, and finally had the opportunity to use some of the camping gear we bought when we were planning to go down to Sydney just as Shane relapsed and spent our holiday back in hospital. We went to Murwilimbar to climb Mt Warning. It was such a great trip to get back into the swing of it! Hopefully there will be plenty more camping adventures to come!  

One final note, Mr Donor, we are so thankful for your contact and for your cells. We want you to know that your cells are treated well with a good and healthy life, and not being taken for granted. Words will never express how grateful we both are for this second chance in life. I would have given anything and everything to save my husband's life, and I am so glad that you were able to do what I couldn't. 

Thank you.

Peace

xx   

 This is us paddling the Tweed River with Dizzee Do over easter.