Help Kristy and Lukas Fight Kidney Disease

Dear family, friends and to all of those who may or may not know me...

My name is Kristy Martinez. I was diagnosed with polycystic kidney disease at the age of 27. I had no idea it was an inherited condition that ran in my family or that it came from my mother's side. After I was diagnosed I found out my grandfather and two uncles had it. Later on in life I found out that my other two aunts have it as well but they are okay. You have a 50% chance of inheriting this disease . At the time I was " fine" so I thought I was one of those people that would be okay . I ended up having two pregnancies and after my second pregnancy my health went down the tubes .PKD is a condition in which clusters of cysts grow in the body, mainly on the kidneys. I used to have hundreds of them on my kidneys and I currently have hundreds on my liver. Eventually it impairs your kidney function and you can have potential kidney failure. When you have kidney failure, you either do dialysis or get a transplant in order to survive. In June of 2021 I had my kidney transplant from a living donor which was from my amazing brave sister Susie. I was very sick from 2019 until I received the new kidney. I asked my nephrologist Dr. David Schlieben from Edwards hospital to help me and get me on the transplant list. He said that wasn't possible because I wasn't "sick" enough and my numbers weren't there. It is always important to advocate for yourself. So I decided to go to Northwestern and see what they had to say. They told me what I needed and I qualified! Dr. David Schlieben was wrong and if I had listened to him I would have ended up going into kidney failure and being on dialysis. My mother was on dialysis for 4 years and died because it was too much for her body and she didn't get her transplant in time. She died in February 2019. I felt like I was going to die without the new kidney. Vomiting, and bed ridden and in terrible pain with no doctors prescribing me anything for my symptoms accept zofran which did nothing for me. I have always struggled with fatigue all of my life and other ailments but I had no idea it was from the disease. It never showed up on scans as a teen when I would go to the hospital. Here we are four years later after transplant and I'm already at stage 3b of kidney disease. The anti rejection med mycophenolate that I was on was poisoning my body and I had no idea. You can look up the extreme side effects of taking mycophenolate, tacrolimus, Prednisone 2× daily. Those drugs have already caused other health problems for me that I'm dealing with. Dr. Lorenzo Gallon from northwestern said that these drugs are equivalent to taking chemotherapy. Except when you have cancer you don't do chemo every day. You get breaks and treatments range from 3-6 months. You aren't taking something everyday anymore that makes you sick. I have been chronically fatigued for almost 20 years because of the PKD. I have been sick for 7 years. With the transplant my quality of life was good for 3 months. Then the side effects of the drugs started kicking in. I was so sick I lost 30 lbs. I was always up and down with the drug. I went to the doctor to see what my options were so that I could maybe feel better. Dr. Bing Ho from Northwestern ( who I should have written him the worst review) was a d***. Long story short he did not want to take the time with me to go over the pros and cons of changing my medication or making sure I understood what these other options were. I felt rushed. I felt sad and confused. He said verbatim and rudely " I don't have time to answer your questions". Since he wasn't giving me anything to work with and I had no idea what to do since he wasn't giving me any guidance I picked an I. V drug. I took it for awhile and ended up going back to the Mycophenolate. It was too much for me to go to an IV clinic to get my meds so that's why I switched back. Last year after 9-day visit at St. Joe's Hospital they told me that the mycophenolate has been poisoning my body. Over the course of the last 10 years I have had numerous hospital stays. I am unable to work because of my condition and I am unable to receive disability because I haven't received a paycheck in the last ten years. The reason why I am doing this fund is for all of the medical bills that has accumulated. Soon I will need a bone marrow biopsy. My daughter had two surgeries on her femur that she broke. The therapies for her, my jaw accident I had, and since I suffer from mental illness, the only therapy that I can take is one that is very expensive. Everything else makes me severely sick so I don't have any options to take for my mental illness except for the therapies that I cannot afford. The one thing that I have to share right now is probably the hardest thing I ever had to do. My sweet son Lukas was diagnosed with the disease back in January. He was complaining of stomach aches and so I took him to the gastroenterologist and found out then. It was the worst day of my life. I cried so hard when the doctor told me over the phone that my daughter said she thought someone had died because of how distraught I was .Having the disease I know what my son is going to have to go through and I would like to save a cushion for him for his future expenses. This summer I'm going to have to test my daughter to see if she has it as well. My kids do not know anything about this because I don't want to worry them. I don't want my son to know that he has this disease because he's just going to look at me and see the life that I live and I don't want him to think that that is going to be his life as well. All I told him was that he has tiny bubbles on his kidneys because the doctor was saying stuff in front of him even though I took the doctor out of the room and told him not to say certain things in front of my son. Fortunately, Lukas did not understand the man's thick accent. By the way, Luke's nephrologist is a good doctor from what I've seen so far. Lukas results are good but he is frequently sick with fatigue, stomach issues and now pain in his legs where he can't even participate in a sport and the doctor said he can no longer do any contact sports. No football, no hockey, no wrestling. My son will never have a normal life. But I'm grateful because I know it could be a lot worse. If we raise any money it would be used to pay for medicals bills that we are drowning in, money to help me get the mental illness treatment that I need, transportation ( Ubers)to help me get to all of these different doctors because half the time I'm too sick to drive but that's what I've been doing because our support system that we have live so far away to help us in the ways that I need help. If I'm too sick it would be nice to have someone be able to pick up my son from school or either take him to school or to make me a meal but unfortunately we don't have that. I want to thank everybody who has been a part of this journey for me. I want to thank my sister Susie for donating her kidney to me so that I can spend more time with my kids and see them grow up. And I want to thank the family and friends who have been there by my side giving me the encouragement that I need to want to continue to even want to be alive. I don't have a normal life. I don't really go anywhere because I'm sick quite frequently. I have other health issues as well that I am dealing with. I don't drink, smoke or do drugs. I haven't had a real vacation in years with my family. My kids see their mom crying and suffering everyday and it makes me feel terrible because all I wanted in this life was to be a mom and now I can't be the mom that I always wanted to be. We don't get to do a lot of fun stuff because I'm sick and because we can't afford it and it makes me feel terrible. It makes me feel like a terrible mom. It would be nice to be able to afford to get Lauren some clarinet lessons. Especially because she is a straight A student and I can't provide her with the things that she deserves. Thank you for taking the time to read my story. Any amount will help. I would like to thank all of my doctors who have been there for me.

Dr. Malcolm Franklin my primary doctor

Dr. Ronald Potkul- gynecologic oncologist

Dr. Jennifer Bond my nephrologist

Dr. Sandeep Sawjney my urologist

Dr. Shadi Hamden my medical oncologist

Dr. Manpreet Singh my psychiatrist

I would like to thank the doctors who are helping my son.

Dr. Nancy Thomas

Dr. Rajeev Nagpal

Dr. Yi Cai

This summer is filled with doctor appts for all of us and I'm praying that I get through it. Thank you. I was hoping to wait to get them tested when the disease usually arrives in your mid 20,30,40, 50's..Because now since Lucas has been diagnosed, he will not be able to get life insurance for his future family and trying to get insurance after he graduates from college is either going to be really expensive where he couldn't afford it, he would have to get Medicaid, or not be able to have insurance at all.

UPDATE - Thank you to all who have donated so far. It makes my heart happy. Please continue to share my post if you can as often as you can. It really means a lot to me and my family. Actually it means the world. God bless us all who are suffering in any kind of way.

UPDATE #2- A special thank you to my sister Susie, my father, Aunt Lil, Rick, Letty, Lyn and family, Aunt Cathy, Uncle Buck, Aunt Jackie and Uncle Darryl, Ashley, Adam, and Scott. Without you guys life would be a lot harder. ❤️

Update #3 Thank you to everyone who donated and continue to support me. I will be closing down this campaign shortly.

Update #4 I can pay my northwestern bill! I posted the bill up top. Thank you guys so much for all the support.