By Jennifer, United States, January 29, 2014
Jennifer Polycystic Kidney Story…
My name is Jennifer Pickard. I am a 35 year old wife, mother, and daughter. I am going to tell you my story from the beginning, and tell you where I am now. My father was a Marine. My mother was Polland. My father retired in North Carolina.
Thirteen years ago, While I was working and I had been working for 2 years but I was in battle of dailey pain. During that short time frame of my working career my life jounery quick changed. My Mother became ill. Her diagnosis was Polycystic Kidney Disease. After telling my doctors about my Mother’s illness, they decided to test me. Tested to see if I had PKD for Polycystic Kidney Disase it is a Genetic Disease. I have been on blood pressure medicine since I was 17 years old. Having the disease would explain many question of reasons why. Why was I having to take medication at such a young age. I got tested. Of course, it came back as being positive; I had Polycystic Kidney Disease. I was devastated.
At this point in my life, I was still a young mother and raising my kids with my husband. Trying to enjoy my life. Which to this day, he has not left my side. We watched this disease end my Mother's life. We watched PKD slowly taken her life and fade away out ours. It was painful for me but my children seen this. It was hard for me to understand but, them. After I found out the results about myself, we had all 3 of my children tested. We wanted to know if they had this disease as well. Both of my boys tested they are positive and have progressive PKD. My daughter test came back was negative.
Now not only do I have this knowing I passed this ugly disease to my boys. This was very hard for my husband and me to handle. But I keep being positive that we will get through this.
I first started by trying to apply for disability. Of course you hear you go through it and will get denied a time here and there. I got to the point where I applied so many times and was denied. I didn't understand and I couldn't understand. I did what I was told applying. I follow applying rules. So I took the next step in trying to do it a different way. I went Health Care Offices and at first, I couldn't do it. I was nervous. I learned to use my voice. I collected 13 years of Doctor’s notes of my medical records. I created booklets, they have my whole life story of medical history in them. I have been in the doctor’s office more than once. I have stayed my fair share of nights in the hospital.
I wanted to come face to face with meeting the Disability Board. Who would chose my faith of my health and my life. Finally the truth, I was told I will keep getting denied due to I do not having enough work credit. Credit hours base on the State of North Carolina Work Guidelines to be able to recieve Social Security. Please don't confuss SSI (Supplement Social Income) base on your house income and Medicaid. I explained to them they were not understanding, I stated, "Doctors took me out of work." I had the proof of Doctors Notes. It explain that I could not work. Basically they couldn’t help with that part they had to follow the North Carolina Disablitiy Laws.
I kept being denied by just trying to get help for medical issues, "So I could get the medicines to work".
Other resources I would reach out to in need for proper health care and medications, I have to drive hours to a free clinic. Depend on services that day. If I was admitte or to the Emergency Room. I would get bills in the mail. Then, I would have to go set down at the Social Service Department for hours. Meet with someone to understand what was going on to get help for past bills to be paid. I applied numberous times for NC Medicaid base on my health needs. I kept getting told my husband made to much money and they couldn’t help. Then he lost his job. I was in the hospital few hours away from home. Family and friends tried not to leave me alone. He had to step in a take care the kids. It is hard job to do your Spouse in Critical Care, take care the children knowing the boys have PKD and work. How can someone and not have to stop. It is overwhelming. He holds our lives together keeping the kids busy with sports not to be focus on what is really happening. Yes, I do try to attend my children's sport events when I can. It keeps me going. Gives me hope.
Next, we tried this brutal round of trying to apply for disability, again. This time, I got a lawyer who could help represent me. We went through that time period of awaiting. Finally, I got the date to go to my hearing. I explained my situation. All my illnesses fell into the North Carolina Disability Act. An Act that Supports, I should be getting should help by receiving Medical Aid.
I was in stage 4 renal failure. I have degenerated disk in my back for Specialist say," I three slipped disked and a herniated disk. That the doctors cannot correct my back." I basically got tol; "I had to suffer with this pain the rest of my life." They tried to use kind words.
I have suffered Pancreatitis 6 times in 2 months. I have almost passed away from it the last time. I lost 60 pounds while I was sick. Syptoms I suffer from: Migraines, High Blood Pressure Waves, Depression, Anxiety, Chronic Pain (Dailey), Sleep Apnea, and not forget the rest of the list of other things medically wrong being that I am at the age of 35.
I finally got my letter in the mail from the Judge saying, "I was denied by the state of North Carolina by saying, "I have a 13% chance that I can work." Someone on my hearing not know what Polycystic Kidney Disease is or what dailey life is like chose my faith. Nothing new, so I was denied again. After almost passing away my husband had to leave work to take care of me. Now that he had No job I am able to receive medical help. The Disability Board Office told me, "Onces my kidneys failed. I could and would get all the help I needed. We have to struggle with my husband not to work just to get help now.
I will be honest, My father helps us have a roof over our heads. Family and friends are by our side with Life Aid when we need something, when they can help out. Having someone there you can count on to watch, "My Children", when I don't have a choice. We are just following the North Carolina State Disability Board Rules for me to get help. Next step North Carolina Disability Laws have caused I guess the truth is if they have a choice they have helped us with extra worries. We could lose our home and fall apart as a family, if it wasn't for, "Faith."
What is happening with my boys? One is excited of looking toward graduation and going to college with a basketball schoralship. He has 5 cyst’s on his kidneys but he continues to live his life the best he can. For my youngest son, He keeps himself bussy playing Scoccer. He is tuff and strong. He hides things very well being he has eight cysts on his kidneys.
Jennifer is now on Diaylsis. She is on the waiting list for a Donor Kidney. She has had a long Jounrey even with Diaylsis Treatments. She has give us a few scares but,she knows how much she is loved and needed, so she keeps fight eventho the body is tired. Mind over matter. She is trying to keep her faith. She is an awesome woman. If you looked her situation then you would not know until you knew her story. It is why some many people with Diseases and Health Problems are getting, "Mistreatment." Misdiagnosis is because the Doctor can't figure out what is wrong? Mistreatment is when a Doctor know what is wrong with a patient, "Either Their Hands Are Tied Because of State Laws or The Patient has No Health Insurance"; then you also have the Doctor's that just DON'T CARE!
Doctor's "Assuming", Instead not caring for the Patient Complaint. The patient are the ones that knows their body. I tell Jennifer Story all I can; Because it was truely unfair how she was treated by not recieving proper, "Health Care that could had slowed the process the PKD down and Dialysis" . Instead the North Carolina State would rather pay for Diaylsis and make a person go through heart-attach and pain, along with their family and love ones, then prevention. She also is a good friend of mine. - Ann
Jacksonville, North Carolina
Read more about Jennifer Jounery at: Looking 4 A Kidney 4 Jennifer. I am on the Kidney Transplant List. Please click below continue reading.