Grateful and Blessed
Hi, my name is Christa Wong. I was 26 years old when I was diagnosed with Polycystic Kidney Disease. I got a second opinion from a doctor at John Hopkins. The doctor confirmed PKD, and I was told it was hereditary. That meant my son would have the disease as well. Then in 2008 what I thought was a bad case of the flu turned out to be Type 2 Diabetes. My sugar level was 894. That put me in the hospital for a week for them to get my sugar level under control. I had to learn how to live with diabetes in my everyday life. What I can and cannot eat or drink. The hospital had a diabetes educator come to show me how I need to take care of myself in my everyday life having this disease. How to test my sugar before and after I eat. How to draw insulin from the vial and then how and where to inject the needle into my body. In 2015, I have been seeing my Nephrologist for little over two years. She helped me keep the Polycystic Kidney Disease at stage 4 for two years longer than I was told. Then in 2017, I went to see my Nephrologist and she said that she had not so good news. That my PKD was in the beginning of Stage 5. She suggested that my next day off. I should go to the emergency room to let them know that I was there to start my dialysis treatment.
I have to say that I am so grateful that there was dialysis to help filter the impurities in my blood. Because the other alternative is to not be here to see my son graduate with his Bachelor of Science degree or his master’s degree in architecture. My son is the big reason I kept fighting because I was not ready to leave him motherless. I have been working for The Home Depot full-time since my mom passed away. I have been with the company for 29 years and the longest time I have ever taken off was a week here and a there for vacation. Then covid came long and my Nephrologist said I need to take short-term disability through work because I was in the high-risk category of catching covid. I could only leave my house to go to dialysis. Even though I was out on short-term disability. The company that handled my short-term disability through work did not feel that it was a good enough reason to get paid for being out. I was out on leave and not getting paid for it. Then the six months came, and I went back to work for about six weeks.
Updates (1)
March 4, 2023
Just wanted to update my story. I have been on a non-paid leave of absence because my company said that I could not collect on short term disability because I haven't worked my 1250 hours for the year. I have been out of work with CMV virus since October 20, 2021. It has been a year and five months and the doctors from Transplant and Infectious Disease still are working to make this disease go away. I spent two and a half weeks in the hospital in October 2022. I was home for about a week and the infusion was not working and I was told to come back to the hospital so Infectious Disease can try another infusion. The second hospital stay was a month stay. I said to the doctors I wanted to have Thanksgiving with my son because I already missed his birthday been here in the hospital. Two days before Thanksgiving I started to feel bad again so I left messages for the Infectious disease doctor and my doctors at Transplant. I didn't hear back from Transplant on Friday and I was told by the doctor that I need to come back into the hospital. I went back to the hospital for the third time that Saturday after Thanksgiving. I spent three weeks this time in the hospital. Doctors had to change my some of my medications.
I still have no income coming in because I only had my full time job with the Home Depot. I can't work because the virus has affected my immune system. I paid all my Medicare Premiums for 2021. I kept waiting for the next Medicare bill to come it never did. I called Social Security and the lady told me my part B was dropped. Never got a notice whatsoever. I am working on getting my part B reinstated. I filed back on June 2022 and still haven't heard anything. Everytime I call to check they keep telling it's still being reviewed. My insurance through work was cancelled because not working to get a paycheck I couldn't pay the premiums. I was informed by the pot transplant financial coordinator that I can apply for Medicaid through MD Health Connection. I applied and was denied. I called to ask why and the lady and the supervisor would not tell me the reason I was denied and they both just hung up on me. I called Social Service and the lady said to qualify through them you have to be 65, blind, or disabled. I said to her that you don't consider a non-insistent immune system to be a disability. She didn't answer and just hung up. The post transplant social worker called me to see how everything was. I told still struggling to apply for Medicaid. I explained what has been going on. She said I know you're not suppose to be around a lot of people but unfortunately you'll have to go to Social Service . But you will have to go early before it starts to get crowded. I explained to the lady that MD Health Connection has denied me and will not tell me why. She gave me all the paperwork to fill out and said to bring them back first thing in the morning to talk to a counselor. I spoke to the counselor that next day. She said I can apply through there because non-existent immune system is consider a disability. She also put in for cash assistance and SNAP for me. Then I got on Monday, February 27, 2023 and it said they need more paperwork filled out by my transplant or infectious disease doctors but it was due on February 26, 2023. I don't understand why the paperwork is due on a weekend date because Social Service is not open on the weekends. That to me is really shady. I also was got a notice that I was denied Medicaid through them and the reason is Community Spenddown. I went back to Social Service and I spoke to the lady that gave me the paperwork and she not sure but probably because you don't meet the qualifications. I spoke to the counselor and she said I could do Medicaid through here as a disability. The lady goes you'll just have to reapply and gave my a whole new set of paperwork. When I signed in. I picked to talk to a counselor and
they don't even let you talk to someone to find out the reason for the denial. The won't assign you to a permanent counselor because their counselors are going between Glen Burnie and Annapolis. I am still no getting any where with Medicaid. But I am still working on it. I have to because I still can't go back to work.
As of my last follow up with my transplant doctor on February 24, 2023. I was informed by my doctor that the kidney I received back on February 12, 2021 will only going to last for another year because the CMV virus did a serious number to the kidney. The kidney is functioning at about 40% and my kidney transplant doctor said they are going to do everything they can to keep the kidney numbers as stable as they can before I have to start dialysis again and put back on the transplant list. Unless I can find a live donor that is willing to donate one of their kidney.
If someone is reading my story and you are interested in donating a kidney. Please call the Kidney Transplant at Georgetown or you can email me and I can get you the information ([email protected]).
Thank you for your support!
