We never know what life has in store for us or what God’s plans for us are. Throughout, my life I have had many challenges and obstacles that I have overcome. I have devoted my life to advocating for children and families to overcome barriers to success. However, I myself am faced with a bigger challenge; I have been living with a deteriorating kidney condition that I was born with, called polycystic kidney disease. I have struggled with this over the last few years, as my condition has roller-cloistered with surgeries, many doctor appointments, tests etc. As a result of my condition I have about 17% of my kidney function left. I am blessed that I am not on dialysis at this time; however transplant is now imminent to my survival and continued quality of life.
Currently, I am on the transplant list at Emory Medical Center in Atlanta, Ga. Because of the extraordinary expense of transplantation, funding this life-saving operation is a monumental task. Despite having insurance, many of my medical needs will not be covered and must be paid out-of-pocket. I anticipate substantial uninsured costs upwards of $5000.00 such as the lifelong immunosuppressant medications; travel to and from the center and much more. This presents a challenge that I cannot meet alone.
January 8, 2016
We have just surpassed the 9 month mark that I have been acquainted with my new friend Bob Bean. Bob and I have had our ups and downs. My Kidney function continues to fluctuate yet stays within my range.
I am still having GI issues but the doctors have scheduled testing to work to figure out what the issue is. My personal struggle is remembering to take my medication each 12 hour cycle, getting enough water intake, and increase of workouts, well dang it just getting to the gym. These are my new years goal. I have set alarms on my phone but often when that timer goes off I am traveling or sleeping and I forget, so I am going to change my medication times. Words cannot express how grateful I am for my kidney, I am committed to finding a schedule that works for me so that I do not miss doses and jeopardize my kidney.
Celebratory news I have learned who my donor was, and have heard through her family all about her. My next journey is calling them, then getting to meet them. I am excited.
I will share that although I have insurance as I work full time, my insurance does not cover all my treatment and labs. My once a month infusion is $11K. I have been blessed to be able to cover some of the clinic bills that have incurred since transplant, however I still have over $1,000 in unpaid medical expenses from last calendar year related to transplant. Any donation towards decreasing this debt is greatly appreciated.
September 1, 2015
Wanted to provide all my supporters with an update on BOB. Well its been almost six months (it will be six months at the end of September) with my new kidney and we have definitely had our ups and downs. Overall I am blessed and the kidney is working great, the doctors are pleased with my numbers. My quality of life has improved and we are tapering some of my meds so the number of medications and the dosages are lower than when we started this journey.
The challenges are that I have had either a reoccurring internal infection or one that is antibiotic resistant for the last three months. They still cannot figure out what the cause of it is. So it looks like more doctors, ughh but at least they are working on figuring it out as I have completed my third round of anti-antibiotics.
This week I will return to the doctor for my monthly IV medication that I receive and kidney doctor visit and labs.
I have a little bit on anxiety about this visit due to the fact that I no longer have my dialysis access that they were using to give me my IV medication and draw my blood. It stopped working about a month ago, since I don’t need it anymore (which is a good thing) the vascular doctor was like I am not putting you back under the knife, your very susceptible to infections and its not worth it.
So my hope is they are able to find a vien to do my IV without having to stick me 10 times or more. If that happens the doctor will have to look at additional long term options.
But honestly the stumbling blocks are just that stumbling blocks they do not overshadow the blessing of my kidney that works and gives me energy to live life.
All the mountains and valleys that I have had in my life this is just a small part of it, it builds character. I have to be honest there are good days, days filled with tears, days filled with laughter, days filled with worry. But no more than anyone else, my reasons just may be a little different than others.
I encourage you to if you haven’t ever considered it, consider being an organ donor, consider donating to support someone undergoing transplant or saving to have one. I am one of the lucky ones, I got a kidney. There are so many people out there that are unable to list due to other medical or health related issues or financial issues. I have insurance and its still expensive. So those that don’t have sufficient insurance have to raise money in order to be able to have life saving organs, read up about it, read up on how kidney disease affects the African american community, educate yourself. Be well, Live Well, Give Well
July 20, 2015
Happy to hear that you're doing so well with your transplant! Celebrate L.I.F.E. & L.O.V.E.!!
June 8, 2015
#MyDreamTeam Thank you to each and everyone of you for your never ending support.