#Katrina needs a Kidney
Donation protected
Katrina is seriously my very best friend. We did everything together and had tons of plans for the future. She was energetic, outgoing and sooo funny....but in 2014 when she was 17 she began coughing up blood. We rushed her to the E.R. where we found out her blood was so low she needed a transfusion. She was admitted and then tranfetrans to a bigger hospital.. 3 days later she was transferred again to Tampa General.
After about 10 days they were pretty certain she had an Autoimmune disease called Wegeners https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088
This illness had attacked her Kidneys and then Lungs. At this time the good news was that very little permanent damage had been done. So the next step was we got her in to see one of the top pediatric
rheumatologists in the country located at U.F. Shands. Here the diagnosis was confirmed.. actually a very rare illness but extremely rare in teenagers. The treatment is basically high dose steroids, chemotherapy drugs and a biological immune suppressant. This treatment was to go on for a year at least, during which she was extremely immune compromised. While receiving these treatments it was discovered she had contracted a virus called CMV. This is a very dangerous virus with her being immune suppressed and was most likely contracted from the blood transfusion. my father had to administer an iv infusion nightly for about 8 weeks. The virus was killed but a side effect of this medication coupled with the chemo drugs destroyed her kidneys. 
During this year of treatment the treatments themselves had adevestating effects on Katrina. The high dose steroids made her bones brittle and she gained over 100lbs of "water weight" in less than 3 weeks. She had long blonde hair but lost 90% of it. Her kidneys failed and she now required hemodialysis https://www.mayoclinic.org/tests-procedures/hemodialysis/about/pac-20384824 . Another side effect was her immune system was permanently damaged by IgG deficiency.https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=134&ContentID=109 requiring the infusion of doner iGg every 2 weeks.
This is when her health really took a bad turn... Doctor's created a fistula in her right bicep for the 3x per week dialysis treatment.https://www.uwmedicine.org/health-library/pages/arteriovenous-fistulas-for-dialysis-access.aspx
The dialysis was not clearing an adequate amount of the toxins from her blood. In addition she was taking 15 sidferdif medications per day to treat both conditions and while they provide benefits there are also harmful side effects. Her PTH horemone was high her blood phosphorus was high and despite more and stronger medication it was getting worse...
So it was decided to abandon the hemodialysis for peritoneal dialysis https://www.niddk.nih.gov/health-information/kidney-disease/kidney-failure/peritoneal-dialysis .This required a port to be surgically implanted in her abdomen.
After six weeks she began the new treatments with slightly better
results..keep in mind.. Katrina worked full time thru most of this at this point except for the appox 3 months she had spent in hospitals......
Over the next 6 months the dialysis was still insuficciant and the effects of that is basically a slow steady poisoning.. and the Fistula the doctors created continued to grow until the point of potential rupture..
2 months later Doctors removed the Fistula..
Katrina s health has declined at this point to where she no longer worked or drove. She xocou only walk 15 to 20 ft without resting and she has started to have pain in her muscles and joints. She has lost weight to the point of being anorexic The constant higher than tolerable levels of phosphorus which pulls calcium from your bones basically triggered her PTH gland to work 100x to hard.. this created a condition called hypercalcemiahttps://www.sciencedirect.com/science/article/abs/pii/S1521690X18300873 This is a devastating condition.. in the next 8 months while the doctors tried different approaches excess calcium accumulated in her tissues....viens, arteries, muscles, and brain. It also attaches to tendons and creates new bone where bone is not supposed to be.. all of this has now resulted in excruciating pain through out her body..my father has to pick her up and put her into a wheelchair anytime she wants to move and he has become her full time caregiver.
In September 2018 doctors removed her parathyroid glands..while this will stop the hypercalcemia it presents new problems which we are just learning about.
While she has insurance currently the out of pocket expenses are huge.. one month of IGg infusion is $19k.. alone.. Katrina needs high intensity physical therapy in hopes of walking again.. in addition we are hoping she will get a Kidney transplant next year and that requires living near the transplant hospital for at least 3 months..
Katrina needs your help. Please.
After about 10 days they were pretty certain she had an Autoimmune disease called Wegeners https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088
This illness had attacked her Kidneys and then Lungs. At this time the good news was that very little permanent damage had been done. So the next step was we got her in to see one of the top pediatric
rheumatologists in the country located at U.F. Shands. Here the diagnosis was confirmed.. actually a very rare illness but extremely rare in teenagers. The treatment is basically high dose steroids, chemotherapy drugs and a biological immune suppressant. This treatment was to go on for a year at least, during which she was extremely immune compromised. While receiving these treatments it was discovered she had contracted a virus called CMV. This is a very dangerous virus with her being immune suppressed and was most likely contracted from the blood transfusion. my father had to administer an iv infusion nightly for about 8 weeks. The virus was killed but a side effect of this medication coupled with the chemo drugs destroyed her kidneys. During this year of treatment the treatments themselves had adevestating effects on Katrina. The high dose steroids made her bones brittle and she gained over 100lbs of "water weight" in less than 3 weeks. She had long blonde hair but lost 90% of it. Her kidneys failed and she now required hemodialysis https://www.mayoclinic.org/tests-procedures/hemodialysis/about/pac-20384824 . Another side effect was her immune system was permanently damaged by IgG deficiency.https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=134&ContentID=109 requiring the infusion of doner iGg every 2 weeks.
This is when her health really took a bad turn... Doctor's created a fistula in her right bicep for the 3x per week dialysis treatment.https://www.uwmedicine.org/health-library/pages/arteriovenous-fistulas-for-dialysis-access.aspx
The dialysis was not clearing an adequate amount of the toxins from her blood. In addition she was taking 15 sidferdif medications per day to treat both conditions and while they provide benefits there are also harmful side effects. Her PTH horemone was high her blood phosphorus was high and despite more and stronger medication it was getting worse...
So it was decided to abandon the hemodialysis for peritoneal dialysis https://www.niddk.nih.gov/health-information/kidney-disease/kidney-failure/peritoneal-dialysis .This required a port to be surgically implanted in her abdomen.
After six weeks she began the new treatments with slightly better
results..keep in mind.. Katrina worked full time thru most of this at this point except for the appox 3 months she had spent in hospitals......Over the next 6 months the dialysis was still insuficciant and the effects of that is basically a slow steady poisoning.. and the Fistula the doctors created continued to grow until the point of potential rupture..
2 months later Doctors removed the Fistula..
Katrina s health has declined at this point to where she no longer worked or drove. She xocou only walk 15 to 20 ft without resting and she has started to have pain in her muscles and joints. She has lost weight to the point of being anorexic The constant higher than tolerable levels of phosphorus which pulls calcium from your bones basically triggered her PTH gland to work 100x to hard.. this created a condition called hypercalcemiahttps://www.sciencedirect.com/science/article/abs/pii/S1521690X18300873 This is a devastating condition.. in the next 8 months while the doctors tried different approaches excess calcium accumulated in her tissues....viens, arteries, muscles, and brain. It also attaches to tendons and creates new bone where bone is not supposed to be.. all of this has now resulted in excruciating pain through out her body..my father has to pick her up and put her into a wheelchair anytime she wants to move and he has become her full time caregiver.
In September 2018 doctors removed her parathyroid glands..while this will stop the hypercalcemia it presents new problems which we are just learning about.
While she has insurance currently the out of pocket expenses are huge.. one month of IGg infusion is $19k.. alone.. Katrina needs high intensity physical therapy in hopes of walking again.. in addition we are hoping she will get a Kidney transplant next year and that requires living near the transplant hospital for at least 3 months..
Katrina needs your help. Please.
Organizer
Kelsea Griffin
Organizer
Inverness, FL