Help Talia Keep her Home and Pay Medical Expenses
Hi my name is Jennifer and I am fundraising for a dear friend from college to try and keep her home and pay her medical expenses while recovering from cancer treatment and fighting Wagner's Disease and kidney transplant rejection . Here is her story:
In 1986 Talia was an avid ski racer, swimmer and soccer goalie. She loved sports, to be active, travelling with her family and dreamed of becoming a competitive ski racer then a nurse or doctor.
Her life drastically changed in late 1986 when she was 12 years old. Talia went to the hospital for a severe sore throat, she was diagnosed with strep throat and sent home on antibiotics. A day later she became very ill and was taken back to the hospital. After many tests the doctors had devastating news. The strep throat had attacked her kidneys and within the weekend both kidneys failed. There was no cure, only treatment. In order to save her life, she required dialysis. Peritoneal Dialysis (a way to remove waste through a tube inserted in the peritoneum and saline), Talia was also put on the transplant list as live donation was not suggested at this time. Due to kidney failure Talia had to give up the opportunity to be in the 88 Winter Olympic Games opening ceremony, ski racing and soccer due to hospitalizations.
As Talia and her family anxiously waited for a transplant, she carried a pager everywhere hoping and praying for a healthy donor. On the evening of July 3rd, 1988 her pager went off. Unbelievably a donor had been found!! It was the moment her family had prayed for; there was also a sense of sadness for the donor family. An entire mix of emotions went through Talia’s mind, thankfulness, sadness, scared, happiness and high anxiety. Transplant was to happen the next day on July 4th,1988. The surgery was a success. With this gift of life Talia was able to resume her life. Successfully completing junior high and graduating high school.
Right after graduation, Talia began to feel unwell and feared kidney rejection. She was heart broken when her donor kidney had failed due to rejection 4 years to the day, she had received it – July 4th, 1992. Once the kidney had been removed, Talia was once again on peritoneal dialysis. She was 17 years old. This worked until a severe infection set in her stomach that required surgery and then Talia needed to be on hemodialysis. This would require Talia to remain on a strict diet and be hooked to a machine 3 times a week for 4-6 hours at the foothill’s hospital dialysis unit. Hemodialysis is a machine that exchanges your blood through a filter using 2 large needles, 3 X a week = 6 needles in her left arm weekly. It was absolute torture for Talia but this was the only life saving option. This lasted 2 years, Talia celebrated her 18th and 19th birthdays while on dialysis and waiting for another transplant.
Meanwhile, live donation was now recommended, Talia’s family members rolled up their sleeves and were all tested in order to donate a life saving gift – a kidney. Talia also remained on the transplant list in case a donor was to be found.
After many months, approximately 2 years of agonizing testing, Talia’s mother Maria was the best match and more than happy to donate one of her kidneys. The transplant was scheduled for June 29, 1994. Again, the same fears came back and now Talia’s Mom Maria would also be having surgery along side Talia. With many well wishes and prayers from family and friends, great Dr’s (Dr J Klassen) surgeons and nurses: both Mother and daughter hugged, kissed and were wheeled to surgery. Maria went first as Talia anxiously waited for her turn. After many hours, the transplant was a SUCCESS!!
With this second gift of life from her Mom, Talia was able to graduate from SAIT with a Business Administration Diploma majoring in Marketing (1999) and began working as soon as she was healthy enough.
In 2001, after many visits to the hospital with odd symptoms, swellings, blisters, and an overall unwell feeling, Talia’s family decided to travel to the Mayo Clinic in Rochester to find answers as no one in the Calgary medical system could. After 7 days of intense testing, Talia was diagnosed with angioedema and was provided with a prescription and sent home.
Things had drastically improved until 2005, Talia was diagnosed with embolism’s (5) in her lungs due to medications. Another set back that wasn’t expected but after that incident life carried on.
2007-2009
Another string of odd symptoms started appearing. Lung bleeds, nose bleeds, swellings, fatigue and just an over whelming unwell felling. Talia’s doctors did an abundance of tests and found an antibody ANCA that was attacking her own body. Which caused visits to several different Dr’s and many, many ER visits and protecting the transplanted kidney was a priority.
The Dr’s came up with a solution, plasmapheresis. This again would require Talia to be on a machine that would clear her plasma and give her back clean plasma. This would control the ANCA. This went of for sever years, if the ANCA was elevated Talia would go on plasmapheresis, a tube placed in her neck to exchange the blood.
Frustrated that no one could control the ANCA, a decision was made in April of 2011 to go back to the Mayo Clinic in Rochester to try and figure out why it couldn’t be controlled. Again, after a week of rigorous testing it was discovered that it was not strep that originally took Talia’s kidneys so many years ago. It was Granulomatosis with Polyangiitis (formerly called Wegener’s) is a rare disease of uncertain cause that can affect people of all ages. It is characterized by inflammation in various tissues, including blood vessels (vasculitis), but primarily parts of the respiratory tract, sinus and the kidneys. They had discovered a way to calm this disease, it was a medication called Rituximab. We were elated!! Finally, a treatment was found and could be administered in Calgary, under supervision for 8 hours though IV. Talia required 2 treatments and life was back to normal.
Then in 2017, tragedy hit the Duri family, Luigi Duri. Talia’s father, best friend and one of her biggest supporters had passed away on December 21,2017. The family was absolutely heart broken. 6 months later, Talia had a severe pneumonia which turned in meningitis and required hospitalization. All of these illness’ were a direct result of having a suppressed immune system, which Talia had in order to protect her Mom’s kidney from rejection. Later that same year in October of 2018, Talia suffered a heart attack which required a stent and again put her back in the hospital. In November she would require another stent in her heart. During this procedure the Dr accidentally cut her artery and she bleed in, requiring 4 bags of blood, surgery to repair the artery and another hospitalization. Once healed, she began Heart Rehab until September 2019.
While all this is happening, Talia began to notice a bump on her nose back in 2018. Immediately she saw a specialist in April of 2018. That Dr said there was nothing to be concerned about. Talia insisted on getting another option as the lump continued to grow and then she would have constant nose bleeds. The last and the 4th Dr Talia saw, diagnosed it as Wegner’s. Talia practically begged for a biopsy to confirm Wegner’s but no Dr would do it. “it was not necessary” and explained that Talia should go to a plastic surgeon to have it removed if it bother her so much. She booked an appointment with the plastic surgeon, with one look he knew it was not good and arranged a biopsy the next week, just before Talia’s 45th birthday. After the biopsy was completed, Talia and her family anxiously waited for the results. A few days later a meeting was scheduled with the doctor for the results. Talia and her family prayed for the best. But was given the worst diagnosis – Squamous Cell Carcinoma - CANCER!! How did this happen? She had been looking and begging for answers for 18 months. Why was it missed and not taken seriously? Talia and her mother broke down when the reality set in. This would be a terrible, painful and long fight for her life.
Surgery was immediately booked for October 15, 2019. This surgery would be like no other, it would be a long 9-hour surgery, no one would know how bad the cancer had grown and how much of her nose would have to be removed. They would also have to remove any other tissue that the cancer may have spread too. After the 9-hour surgery, Talia woke up in the ICU, bruised, tubes coming out everywhere and unable to speak due to the tube that was assisting her breathing. The surgery entailed removal of the lump, the septum and other tissue around that area that had cancer cells. For a precaution, the doctors removed many lymph notes around her neck, the incision was almost ear to ear. A skin graft from her right arm was used to replace the skin that was removed and a stent was placed in Talia`s left eye to protect her eye from the radiation. Talia looked like she had been in a severe car accident and went right through the windshield. The pain was unimaginable and she could not look in the mirror for quite some time. It was one of the most horrible things to endure. Talia was hospitalized for 10 days, recovery would be long and hard but the cancer was gone.
Once healed from this surgery, approximately 6 weeks later Talia began radiation to destroy any cancer cells that maybe floating around. This would begin in early December, over Christmas and into the new Year. Talia required 30 treatments daily, each treatment she would have to wear a mask that was locked in place to make sure the radiation would hit the required areas. It was like having a sun burn. During that time, Talia also required blood transfusions. It was very hard on her body.
Once healed from radiation, reconstruction could begin. The stent was removed from her eye which left her eye running all the time, she will need another surgery to fix this problem.
Another surgery was booked on June 30, 2020. This surgery would replace Talia’s septum with her rib and the skin flap on her face would be debrided. Once again, Talia was hospitalized for 5 days. We were absolutely thrilled with the results, Talia looked like Talia again and was hopeful for the future.
However, this was short lived, 2 weeks later an infection set in and all the reconstruction had to be surgically removed. The surgery would last 3 hours and Talia was sent home the next day basically with a hole in her face. Talia needed homecare daily and her Mom helped her at night for months. They all were absolutely devastated, mentally, physically and emotionally. It had almost been a year since she was diagnosed and now, she was worse that when she began. With Covid, it was even harder as the whole world had been put on pause. Then, Talia was diagnosed with Type II diabetes.
For 2 ½ months Talia did not leave the house due to the hole in her face along with the pain. But with the support of family, friends and medical staff, Talia persevered on. Another surgery had been booked on October 16, 2020. Again, it would be a similar to the first surgery almost a year ago to the day. She needed another skin graft to fill in the hole the infection had left. The skin graft would come from Talia`s right leg. Things have changed this time, due to Covid, Talia had to face this all alone. There were no visitors allowed or companions to wait with her until surgery time. Her Mom and Aunt Rosa could not be there to calm her nerves as they had been every surgery before. Talia spent 11 days in hospital, no visitors allowed and unable to walk with out a walker. This was one of the toughest hospitalizations yet. Talia left the hospital using a cane, it would take weeks for her to walk on her own again.
Once Talia was some what healed, she began physio therapy at Wellspring Calgary, a place that would help Talia not only physically but also mentally. It was a way for her to gain her strength back and to be able to walk with out a cane. This would take place twice a week at the Holy Cross Center as she waited for another surgery to replace the septum in her nose. On February 8, 2021, Talia was once again hospitalized for another reconstruction surgery. This time they would have to remove another rib, to try and recreate her nose. The surgery was a success and Talia was back to physio.
As time passes, Talia`s right side of her nose begins to collapse due to all the radiation treatments. Unbelievably, Talia would require an additional surgery as she is unable to breathe out of her nose. This causes her to wake in panic, unable to sleep and cosmetically not appealing. Cartilage will have to be removed from her ear to replace the cartilage that was originally removed. Surgery was scheduled for July 12, 2021, Talia was so very excited! She wants to get her life back. Unfortunately, the surgeon had to cancel this date and rebook for August 2021. We are all hopeful that this surgery will be a success and give Talia back the ability to breathe.
It will be 2 years in September since Talia was diagnosed and not able to work due to this horrible disease. She has had to endure 5 different faces, many surgeries over the last 2 years. We are reaching out to all of you for your help with medication costs, living expenses and to have a stress-free recovery. This has been the hardest road Talia has endured. Thankfully on June 29, 2021 Talia and her mother celebrated the 27th anniversary of their kidney transplant.
We love Talia and admire her strength, perseverance and never giving up attitude. She has truly been a warrior over the course of her life and in the last 2 years. She has always tried to live the best and most normal life she can. Can you imagine all of this is in one lifetime? Please help Talia keep her home and pay her medical expenses while recovering from cancer treatment and fighting Wagner's Disease and kidney transplant rejection.