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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.
Then February 9th came, and I got a phone call from Medstar Georgetown University Hospital. The lady at Georgetown said they have a kidney for me. She said that it was being flown in from Philadelphia. Once it arrives at the hospital the doctor had to do some tests on it. She told me to keep my phone on me because someone will call me back to let know if the doctor was going to do the transplant or not. I receive another phone call to tell me the kidney was not a good kidney. The kidney had farmer’s disease. The doctor said it would not be a good idea to transplant that kidney. I was excited for it to be good news, but it was disappointing to hear it was not a good organ. Then the night of February 11th around 10pm I received another phone call from Georgetown. The lady said we have a kidney for you. The doctor has tested it and it is good to go. When can you get here tomorrow? I said, I must cancel my dialysis session for Friday morning and drive to the hospital. She said don’t cancel your session just come to the hospital after dialysis. Morning on February 12th came. I went to dialysis for four hours. As soon as the nurse took the needles out of my arm, I was running for the door. I was so excited that I couldn’t wait to get on the road. I am so grateful that I received a kidney. I wish I could tell the family of the donor how grateful and blessed I was to get their loved one’s kidney. When I got to Georgetown. Checked into the emergency room. Waited to get register, had blood drawn, and waited for a covid test. Had to wait for the results to come back. The surgeon came out to introduce himself. Explained to me what he was going to do in the surgery. The surgeon said surgery will be about three and a half hours long. Then after surgery I will be recovering in my hospital room. I was released from the hospital on February 16th to go home. I waited for them to get all my discharge paperwork together and they had to get all my medications from the pharmacy. I had to go on short-term disability again, but it had gotten approved. Because I haven’t worked another 1200 some hours. I was approved because a major organ transplant is medical reason. I was out for another six months. I did receive money for my critical illness plan from work to take care of my bills, but that money did not last long. There was some much going on after transplant. Running back and forth to the hospital for my follow up visits, lab works, dealing with the pain, and keep a track the medicine changes. I forgot to fill with short-term disability, so I didn’t get any money this time either. My short-term came to an end. I went back to work for two weeks and two days. While was at work I had shortness of breath and major stomach pains. I left work. I went home. I called Georgetown left a voice message for the nurse and left a voice message at the transplant desk. The nurse called back. She said that it sounded like my system was compromised and that I needed to go the emergency room. I went to the ER near my home. I waited in the ER for a while before they got to me. The nurse finally came and took me to a room in the ER. She took my basic tests and said the ER doctor will be in. The doctor order bloodwork and chest scan. I told the doctor to call Georgetown and talk to someone on my transplant team. He called and Georgetown wanted other scans done but they must do those in the morning, so I had to spend the night. All the tests and scans they did at the ER. They said there was not things wrong, except my white blood count was low. But the good part was I had a zoom meeting with Georgetown the next morning.
On the zoom meeting with Dr. Thomas. I told him that they did not find anything wrong except my white blood count was low. I said why did I feel so bad. He pulled up my lab work. He said your white blood count is low is because you caught a viral infection called CMV. Dr. Thomas said that as long as your white blood count is low. You cannot go back working with the public because you could catch another virus and it will put you back in the hospital or worse. I did realize I was going to get all these unexpected medical bills and premiums not paid by Medicare. I have one more paycheck coming to me but it’s not going to cover all my bills. My mortgage in late, my bge bill, car payment, car insurance, credit card, medical bills, Medicare premiums, and Benefit premiums through Home Depot. Then a friend mine that has a pancreas transplant at Georgetown as well told me about Help Hope Live. He said he has heard all about the good things the charity has helped other transplant patients. I am hoping that Help Hope Live will be able to help me.
By starting a campaign with Help Hope Live, I am hoping to not loose my home or car and catch up on all my bills. I can go back to work. Now I can relate with other patients like me and their families. You really don’t know what’s going to happen until you’re in that moment and everything is crashing around you all at one time. So, please if you can donate to Help Hope Live and help those in need.
Family and friends of Christa Wong are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.
Christa has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
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 (ic2wong@hotmail.com).
Thank you for your support!
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Help Hope Live
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In honor of Christa A. Wong
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Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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