Today I end my self imposed blog writing hiatus to let you know I wrote a letter.
I wrote a letter to my family because enough is enough. I’m not sure if I’ve been open enough with them about the struggle that is my daily life, so I dropped my façade of “everything’s great” and wrote to them. So far it’s gone out by email. Tonight it will go on my facebook page and tomorrow out by snail mail. And right now it’s here for the web to read.
Enjoy.
A quick note, the "attachments" mentioned in the letter are a faq and assorted information from the following websites. Please follow the links to also read the information shared with the letter’s recipients.
http://donatelife.net/understanding-donation/living-donation/
http://www.kidney.org/transplantation/livingdonors/index.cfm
A letter to Erica McGregor’s Family:
“More than 113,000 people are on the transplant wait list. Every 12 minutes someone new is added. Every day, 18 people DIE while waiting”.
I don’t want to be one of the 18 who die today.
I have written this in my head so many times, but never had it in me to write it out for you to read. You all know me; I speak up at times, but rarely on my own behalf. I have kept quiet about the one thing that I should not, and that is my health situation. I think all of you know that I have Lupus. I think all of you know that I also have End Stage Renal Disease (ESRD) because of Lupus. Some of you may or may not know that I am on Dialysis because of ESRD, and none of you know that all of this is causing serious Heart issues. What you all need to know now is, my life is at stake, and I will die if I do not receive a Kidney Transplant.
I’m sure this sounds dramatic to you. Because really, the last time you saw me you probably though I looked great. In fact the last time I saw some of you, you told me I looked great! I’ve lost about 50lbs and yes I do not look sick at all. Plus, I’m on dialysis, so that helps right? I’m sure you have told yourself that I am ok, because at the base of things, this appears to be true. But the reality is I’m extremely sick and dialysis is not a cure for ESRD. It’s meant to be temporary, and while I could stay on it indefinitely, it’s eventually going to stop working and has already started to cause other parts of my body to not work properly, namely my heart. Also, the costs, monetary, physical and emotional are huge.
Dialysis costs my family and I over 100K a year. Some of that cost is covered by insurance. Some is covered by Medicare. I only get coverage for 36 months. After 36 months, with no kidney transplant, the costs need to be 100% covered by Asher and me. I’ve been on dialysis now since November 2011. That’s 15 months so far, 23 left to go. My dialysis prescription requires me to have dialysis five days a week. Because I work full time, my day goes like this; I wake up at 7:00am and start work at 8:30am. I work until 4:30/5:00 pm, go home make dinner for my family, set up the dialysis machine, start dialysis between 5:30 and 6:00 pm, treatment takes about 3 hours (3.5 hours including setup), I end treatment between 8:30/9:00pm, I eat dinner (if I feel up to it), talk to Asher (if I feel up to it) and then go to bed, so that I can be up the next morning at 7am, and start all over again. Two days a week Juliana spends the evening with a sitter so that I can start treatment at a reasonable hour. The other days during the week, on nights when we don’t have a sitter, I don’t get on the machine until Juliana’s bed time, which means I’m typically up until close to midnight doing treatment. I rarely have time to actually eat the dinner I make; I spend minimal time with Juliana, and very rarely get to spend time with Asher, all because every night I have to do dialysis. And I have to do this 5 times a week. That is close to 20 hours of dialysis. So not only am I working a 40 hour week, being a mom and a wife, I spend 20 hours, the equivalent of a part time job, on a dialysis machine.
A dialysis machine is also known an Artificial Kidney; it does the work that your kidneys typically do. And because it is a machine, it’s extremely effective. It not only cleans the waste from your body, it strips your body of necessary vitamins and minerals. It also strips your body of white and red blood cells, the things that fight infection and keep you healthy. Every treatment I have to inject myself with a medication called Epogen because my body cannot make the amount of red blood cells it needs. My hemoglobin count is so low, that without the Epogen I’d be hospitalized for a blood transfusion every week.
On a good night, dialysis is tolerable. On a bad night, my blood pressure drops to dangerous levels and I become nauseated. Sometimes I vomit, sometimes I pass out, and sometimes so much fluid is removed from my body that my feet and hands cramp and I can’t move my fingers or toes. But I endure it because life is hard, and for now this is the only way that I can make it to the next day. Without the dialysis machine, the toxins typically cleaned out of the body would build up. I would start with feeling exhausted, then I’d have a fever, feel queasy, and slowly the rest of my organs would stop working. I live for dialysis, and need dialysis to live; it’s a never ending cycle.
As one of my family members, the odds that our blood types are compatible are high. As one of my family members, the chances of me living with your kidney are even higher. Family is always the best match. And kidneys from living donors have the longest transplant life, meaning a kidney from you is most likely the only one I’d ever need.
This is why I’m writing to you. I need your help. I need your help because you are my best chance for a kidney transplant. I like to think that maybe the reason why you haven’t been tested yet is because you just don’t know how bad things are. That you saw me and I looked good and you just did not know. Or maybe the reason you haven’t been tested is because you’re scared, or because you simply don’t know the process and don’t know how to get started. Maybe you worry about the cost and time needed. Today, in this letter, I am sharing with you everything. And if you have questions, and want to know the process, just ask me. Talk to me about the process, talk to me about what I’m going through. I understand that what I am asking is a lot. But if the roles were reversed and I could do it for you I would. I would not hesitate to save your life because you have daughters, sons, wives, husbands, nephews and nieces who want you to be with them as long as humanly possible. And I want to be with you, my family as long as possible. I believe in God and that with Him all things are possible, but I also believe in action, and right now I need you to act on my behalf.
Step one in the process is to contact the Hartford Hospital Transplant Program. They can be found on the web at http://www.harthosp.org/transplant/KidneyTransplantation/default.aspx and contacted via phone at (860) 972-4219. Tell them that you are interested in being a Living Donor for Erica McGregor. They have a living donor coordinator who can help you through the process. I won’t lie to you, it’s a long process that involves blood tests, medical exams and will require time off from work and just time in general. I know how precious time is, trust me, but this is very worth it.
Attached to this email are two documents that will help you make your decision. They cover the costs, all steps of the process and answer any basic questions you might have. I am always available to answer any questions you have as well.
Thank you for taking the time to read my words, I love you all.
Erica
Erica Needs A Kidney 