Help Naomi receive life saving kidney surgery

My name is Ian and I am Naomi’s partner:

There are few people I’ve encountered that I could say have the courage to have endured what my partner has endured. So I hope you take a minute to read. I’ve seen strong men crumple and cry at the level of pain and illness I see her endure everyday, that she has survived at all is in no small part a testament to her will to fight at any cost. We are both extremely private people, not even our closest family know the toll this long illness has taken on us and the life we live, but now we face the most significant challenge thus far. We have sacrificed everything to this illness and have nothing left.

Today we got the news that in 3 weeks time (Aug 15) Naomi will be having an operation to remove her right kidney and ureter. It is urgent surgery and can only be provided through the private system.

The surgery itself is quite complex and therefore requires two Urology Surgeons instead of the usual one. It will be partially endoscopic (kidney removal) and partially open surgery (ureter removal and bladder repair)

We have received the initial surgeon fee which is $1775.90 to be paid before August 13th. On top of this We will also receive the anaesthesia fee of around $600 and the assisting surgeon fee (cost not yet known) Naomi has considered delaying the surgery in the hope that we can get the money together somehow but her surgeon wants this surgery done as a matter of urgency before her next kidney infection takes hold. Naomi is unlikely to survive septic shock a third time.

Naomi’s specialists have always said kidney removal would be the last resort. We are now in the position that the last resort has become the only option. If this kidney and ureter is not removed it will kill her, this is a fact. So I will let her tell you the rest. This is the only time I have ever asked for help, perhaps that’s my failing…pride, but I ask it now as I have no more left to give.

My medical history in the words of Naomi Victor

In 2007 I had a large kidney stone that should have been surgically removed but wasn’t, resulting in a stricture growing in my right ureter, causing blockages and infections to get trapped in my right kidney. Over the following 8 years I had regular stents inserted into my ureter to keep it open but this only provided temporary relief before the stricture regrew.

In 2014 I underwent a bladder re-sectioning to widen the bladder connection to the ureter and hopefully prevent the stricture returning. This failed terrible and actually caused the ureter to grow more scar tissue and stronger, tighter strictures. This is when the infections started growing inside my kidney and with nowhere to go imbedded themselves into my kidney wall. The pyelonephritis really took off at this point requiring me to use indwelling catheters,have weekly hospital visits for iv antibiotics, check ups and catheter changes. This particular infection grew so severe that no antibiotics could remove it and I began to get very sick. This led to the events of 2015 -

In 2015 I had my first Septic Shock episode caused by full blockage of my kidney and ureter. (Full body systemic infection that started shutting down vital organs and placing me on life support) I was given less than a 20% chance of survival.

I received emergency surgery and had 2L of infected pus drained out of my kidney and against the odds I survived but with permanent bladder damage, cognitive, memory, and auto immune damage from the infection reaching the brain.

Once I was strong enough I underwent major open surgery - A refluxive ureteric re-implantation - The damaged part of my ureter was cut out and the remaining part re-implanted into another area of my bladder. This surgery has prevented any more strictures from occurring but with the side effect of urine refluxing back into my kidney when urinating or when my bladder fills up. My urethra has also been damaged to the point that requires me to self catheterise.

Since then I have had an average of 12 pylonephritic infections every year, each infection is systemic, travelling through my blood stream, weakening my body and damaging my kidney and other organs more. Each infection leaves me bedridden for longer periods of time, where once I would bounce right back I now need a week or longer to recover, giving me only a few days respite before the infection takes hold again.

Last year I had my 2nd septic shock episode resulting in another stay in ICU and high dependency, again with a low chance of survival. The medications to stabilise my heart rate and blood pressure caused partial collapse of both my lungs and damaged my heart. The infection added to the previous damage to brain, nervous system and bladder.

I am now only able to take one type of oral antibiotic as I have either developed allergies to the others or the infection has built up resistance to them. As I take this antibiotic every day of my life, when I have to take it at infection strength I am on a very high dose that is extremely harsh on my body or I have to have IV antibiotics in hospital. If my pyelonephritis becomes resistant to this last antibiotic I am in serious trouble.

I will not likely survive another septic shock. Even a slightly milder urosepsis or resistant pylonephrosis could take my life.

I have the most amazing partner who has taken care of me as my health declines, runs the household, takes care of all the children and has never taken a moment to himself. He takes on the role of 2 parents as well as full time carer for me without complaint. He is the strength that I need to keep going when I am at my sickest. I have two children and two step children who have had to see more health scares than young children should and have had to miss out on a lot of the young years with me as I have just been too sick. I can’t get those years back but I want to be around to watch them grow up and be there for them through their teens. Another Septic Shock and I will not have that opportunity

I want to marry and grow old with Ian. I want to watch our children grow into adulthood. I want to regain a quality of life enough to enjoy our older years but first of all I need to defeat this illness.

The surgery will not guarantee removal of the infection that now lives in my body so it is very possible that I will still have a lifetime of UTIs. What it does mean is that it will no longer travel to my damaged kidney and spread throughout my body as a systemic infection. It will stay in my bladder where it can be easily treated.

This has been a long and expensive road for myself and my family and we are so close to seeing the finish line now. Any help, no matter how small will be appreciated beyond words.

Thank you so much for reading my story

any funds raised will first pay for the surgeons fees, if we raise any more after that the next item to be paid will be the anaesthetist, followed by the assisting surgeon. If there are any donations past that it will go towards a support cushion or similar to help laying/sitting during my recovery and any other medical or rehabilitation aids that may be required.

My Medical teams

Long term GP

Urologists x 3

Uro/gynaecologist

Infectious Disease

Pelvic Pain Clinic

Continence Nurse

allergist/immunologist

Bladder physiotherapist

Pain Specialist

Pain Psychologist

Oncology/haematology

Pelvic Pain group sessions