Save Our Suzi

Love and compassion are necessities, not luxuries, and without them we cannot survive. Now I need all you people with hearts full of love and compassion for my beautiful twin sister to help us get her to a new life. After almost a decade of hospitals and doctors and illness, Suzi has finally got the chance at leading the amazing life she deserves. In August her long-awaited, much hoped for and fervently-anticipated kidney transplant will take place. Although we are all excited and so happy for a hopefully great outcome, the surgery is also a major stress. Minimising stress is absolutely critical to maximise health especially in an immuno-suppressed patient, and gives her the best shot at a successful recovery and new life.

From the day she was diagnosed, through her steady descent towards organ failure, her life has been immutably and irreparably changed. There have been many sacrifices, many difficult and painful choices. To think, that in a month’s time that life could be different for her is an overwhelming and exciting prospect; a dream come true.

But dreams don’t come easy.

Being so sick has meant that she is dependant on familial support and unable to work. She would be embarrassed to ask, but I am not; we need help!

For a little background, my twin sister Suzannah has been battling an incredibly rare and debilitating kidney disorder for the last fifteen years. In essence her condition causes her to lose electrolytes (such as magnesium, iron, calcium) at a critical rate, causing many side effects including heart issues, tetany, extreme fatigue, loss of bone density, muscle depletion and chronic pain amongst others. In particular low potassium has severe and serious implications on the heart and left untreated can cause heart failure and death. Her case is unique in its severity and expression and many doctors worldwide have been involved in trying to figure it out. In the last few years Suzi's condition has deteriorated to the point where she spends every third day and night in hospital getting treatment through an IV line into her portacath. After three years of testing, investigations, and discussions with specialists all around the world she is finally getting a kidney transplant this August through a live donor family member.

Because of the complicated nature of the surgery (Suzi's operation will be a NZ and possibly world first) it has to take place in Auckland with our best transplant surgical team so will involve at least 6 weeks away from her home in Tauranga, first in hospital and then in motel accommodation with daily clinics at the hospital. Suzi also has to have a support person with her for that whole stretch of time which is an unpaid role. Suzi’s support person will be a fundamental and indispensable part of ensuring her road to recovery is smooth and as easy as can be. While we have family members taking turns to fill that position there are big expenses involved in travel costs to and from Auckland as none of us can afford to take the whole period off from work/away from children. There are also the travel, parking and accommodation costs in Auckland. When she does get to return home there will be further costs involved in traveling to weekly clinics in Hamilton for six months following the transplant and then fortnightly clinics for the six months after that. The first year following transplant is a crucial and vulnerable time for the recipient and we would love to take some of the pressure off Suzi by easing the financial burden of this compulsory travel.

Suzi is so thoughtful, and kind. She is so generous with her love, that you would think it would run out, but it never does. Now I’m hoping so much that you can all be generous with your love :)

If you can’t donate financially, please share your love with Suzi however you can; whether its letters, messages, care packages, a meal cooked for her freezer for when she is too tired or an offer of help with life’s daily tasks, especially when she returns home to Tauranga post-transplant.

If you want to read Suzi’s own words about her life with kidney failure and the journey to transplant you can check out her blog; she is clever, optimistic, resilient and honest and you will understand how much this transplant means to her: https://lightlylightlyblog.wordpress.com