Tumara’s fight. ♥
Donation protected
Im saddened that it has even come to me needing to write this, but it was going to be the very last resort for me. I've been scared of putting my story out there but I feel like there’s no time like the present.
I’m Tumara. A 29-year young female who was diagnosed at birth with cystic fibrosis. i fought my whole childhood and teenage life just like most CF kids. In and out of hospital for admission every 3 months that were always 2-3 weeks at a time to keep my lungs fighting this horrible disease but by 19 my little lungs just couldn’t hold on any longer and I was placed on the double lung transplant waiting list. I gratefully was blessed with a set of donor's lungs 3 months later. Post-transplant surgery, i developed steroid-induced diabetes and other complications that required more months in the hospital and more invasive surgeries but eventually, I was able to begin my recovery and start my ‘new’ life.
Getting used to over 30 different tablets per day to help stop my lungs from rejecting and prevent other symptoms. There were always a few admissions if I ended up with a virus or something worse due to my highly compromised immune system.
I carried on living my life as best as someone my age and in my situation, making the most of the new life I had been gifted, trying to socialise, work, attend doctor appointments and… trying not to burn myself out!
I quickly learned that this life wasn’t meant to be perfect when at 23, i discovered a right breast lump that was biopsied as lobular carcinoma, a form of breast cancer that needed urgent attention. At 28 history repeated itself when I found 3 more lumps biopsied as lobular carcinoma again and removed on the same breast.
I experienced my fair share of acute rejection and antibody-mediated rejection. I was also diagnosed with CLAD/BOS2/chronic rejection when I was 25 - my lung function never stopped declining and daily tasks would start to be an uphill battle.
At around the age of 26, I found myself in pain most days, but this time it was a different sort of pain from what I was used to. This was a sharp left-sided pain in my kidney region. It became frequent and I was begging my doctors to refer me to a renal specialist. Months passed by but my request to see a renal doctor fell on deaf ears and I was told and I quote “Drink more water, Tumara.”
Despite the 3 litres of fluids per day, nothing changed. About 12 months later I woke up one morning and was urinating fresh blood. I was taken straight to St Vincent’s emergency department in Sydney. I was admitted for 3 agonisingly long months while they watched my kidney function numbers and ran test after test to come to some conclusion. During the time of this admission, I became extremely anxious, depressed and stressed. I had sores from picking at my face and had lost so much weight that I couldn’t even recognise my body in the mirror. I was then asked to do a biopsy of my kidney. The results showed that i had over 75% irreversible damage due to all of the toxicity in my blood from my anti-rejection medications and those numbers have worsened as i have an 8% kidney function today.
I was officially diagnosed with Chronic renal failure in May of 2021 and commenced dialysis 3 times per week for 4 hours a day but was given hope when I was told that a kidney transplant was very likely and about 8 months after my diagnosis i began my complete work up tests for a kidney transplant. After going through 12 months of agonising doctors appointments and tests, biopsies, blood tests etc, I was told that unfortunately, I was not eligible for a kidney transplant because the risks for my team, outweigh the benefits if they were to perform the transplant. I was brutally told that my renal team didn’t see my surviving 5 years post-op. Doctors don't even see me live through the waiting period for a new organ. Because of my lung capacity (currently 38%. A normal person would have 100%), I wouldn’t be strong enough. My lung transplant team has also refused to give me a second double lung transplant as they see it as too risky for someone with such a complex medical history and no healthy kidneys.
A triple organ transplant has never been performed in Australia and has never been successful enough anywhere else in the world for surgeons to want to even try it here.
In the midst of all this, I have also been getting consistent laser surgery to the cervix and surrounding areas to prevent the growth of severely abnormal cells potentially turning into a form of cervical cancer. Since getting this news in March 2023, my world has never been the same. I’ve barely experienced the things I want to do and I know that now I won't be able to do even a quarter of what was on my bucket list.
Being only 29, that's a hard fact to face. I won't get married, have kids, or even be able to buy my dream car. I’ve started working with clinical psychiatry medicine and palliative care services to plan the future and help me through this difficult period.
My goal now is to
I’m Tumara. A 29-year young female who was diagnosed at birth with cystic fibrosis. i fought my whole childhood and teenage life just like most CF kids. In and out of hospital for admission every 3 months that were always 2-3 weeks at a time to keep my lungs fighting this horrible disease but by 19 my little lungs just couldn’t hold on any longer and I was placed on the double lung transplant waiting list. I gratefully was blessed with a set of donor's lungs 3 months later. Post-transplant surgery, i developed steroid-induced diabetes and other complications that required more months in the hospital and more invasive surgeries but eventually, I was able to begin my recovery and start my ‘new’ life.
Getting used to over 30 different tablets per day to help stop my lungs from rejecting and prevent other symptoms. There were always a few admissions if I ended up with a virus or something worse due to my highly compromised immune system.
I carried on living my life as best as someone my age and in my situation, making the most of the new life I had been gifted, trying to socialise, work, attend doctor appointments and… trying not to burn myself out!
I quickly learned that this life wasn’t meant to be perfect when at 23, i discovered a right breast lump that was biopsied as lobular carcinoma, a form of breast cancer that needed urgent attention. At 28 history repeated itself when I found 3 more lumps biopsied as lobular carcinoma again and removed on the same breast.
I experienced my fair share of acute rejection and antibody-mediated rejection. I was also diagnosed with CLAD/BOS2/chronic rejection when I was 25 - my lung function never stopped declining and daily tasks would start to be an uphill battle.
At around the age of 26, I found myself in pain most days, but this time it was a different sort of pain from what I was used to. This was a sharp left-sided pain in my kidney region. It became frequent and I was begging my doctors to refer me to a renal specialist. Months passed by but my request to see a renal doctor fell on deaf ears and I was told and I quote “Drink more water, Tumara.”
Despite the 3 litres of fluids per day, nothing changed. About 12 months later I woke up one morning and was urinating fresh blood. I was taken straight to St Vincent’s emergency department in Sydney. I was admitted for 3 agonisingly long months while they watched my kidney function numbers and ran test after test to come to some conclusion. During the time of this admission, I became extremely anxious, depressed and stressed. I had sores from picking at my face and had lost so much weight that I couldn’t even recognise my body in the mirror. I was then asked to do a biopsy of my kidney. The results showed that i had over 75% irreversible damage due to all of the toxicity in my blood from my anti-rejection medications and those numbers have worsened as i have an 8% kidney function today.
I was officially diagnosed with Chronic renal failure in May of 2021 and commenced dialysis 3 times per week for 4 hours a day but was given hope when I was told that a kidney transplant was very likely and about 8 months after my diagnosis i began my complete work up tests for a kidney transplant. After going through 12 months of agonising doctors appointments and tests, biopsies, blood tests etc, I was told that unfortunately, I was not eligible for a kidney transplant because the risks for my team, outweigh the benefits if they were to perform the transplant. I was brutally told that my renal team didn’t see my surviving 5 years post-op. Doctors don't even see me live through the waiting period for a new organ. Because of my lung capacity (currently 38%. A normal person would have 100%), I wouldn’t be strong enough. My lung transplant team has also refused to give me a second double lung transplant as they see it as too risky for someone with such a complex medical history and no healthy kidneys.
A triple organ transplant has never been performed in Australia and has never been successful enough anywhere else in the world for surgeons to want to even try it here.
In the midst of all this, I have also been getting consistent laser surgery to the cervix and surrounding areas to prevent the growth of severely abnormal cells potentially turning into a form of cervical cancer. Since getting this news in March 2023, my world has never been the same. I’ve barely experienced the things I want to do and I know that now I won't be able to do even a quarter of what was on my bucket list.
Being only 29, that's a hard fact to face. I won't get married, have kids, or even be able to buy my dream car. I’ve started working with clinical psychiatry medicine and palliative care services to plan the future and help me through this difficult period.
My goal now is to
- get enough support/money raised to be able to get more professional opinions and hopefully get a yes to a kidney transplant that i so desperately need.
- To erase some of the medical financial burden.
- To make some lasting memories with my loved ones.
Organizer
Tumara Richards
Organizer
Mount Pritchard, NSW