I never really thought about being an organ donor until I became the person who needed an organ. The teacher in me is coming out and I feel the need to inform people of the importance this one decision can make.
Over 95,000 U.S. patients are currently waiting for an organ transplant; nearly 4,000 new patients are added to the waiting list each month.
Here are some facts from kidney.org:
• 37 million American adults have CKD (Chronic Kidney Disease) and millions of others are at increased risk.
• Early detection can help prevent the progression of kidney disease to kidney failure.
• Heart disease is the major cause of death for all people with CKD.
• Glomerular filtration rate (GFR) is the best estimate of kidney function.
• Hypertension causes CKD and CKD causes hypertension.
• Persistent proteinuria (protein in the urine) means CKD is present.
• High risk groups include those with diabetes, hypertension and family history of kidney failure.
• African Americans, Hispanics, Pacific Islanders, American Indians and Seniors are at increased risk.
• Two simple tests can detect CKD: blood pressure, urine albumin and serum creatinine.
The thing with kidney disease is that you never know if you will be affected. I was not diagnosed until I was a teenager, almost in my 20’s. The doctors are not sure what caused my kidney infection, however, from the information they were able to gather, they feel it was from Chronic UTI’s as a child. Why am I sharing this information in a public forum? I want to educate parents of young children. If I could give any advice I would say:
1. Keep ALL your child’s medical records. After a while it is hard to get your hands on that kind of information. (Especially when you need it and you’re 48 years old).
2. If your child suffers from Chronic UTI’s ask the doctor not only to prescribe an antibiotic but to also keep an eye on your child’s kidney function.
I saw Dr. Jan today and we talked about a plethora of topics… family, love, relationships, death… just to name a few. It amazes me when I think about the number of different thoughts that run through my head at any given time. And I guess that’s why I’m starting this blog because I need to get these thoughts out and maybe they will even help someone else.
Believe it or not today we spoke a lot about other illnesses and My heart goes out to anyone who is dealing with any sort of illness. Not only is it hard on the patient it is hard on the caregivers as well. I can’t imagine what my family goes through. I know they feel helpless.
So, as I sit on Dr. Jan’s couch crying in anger I realize I am annoyed at how much attention other illnesses get as opposed to Kidney Disease. When you walk into a room you can often tell if a person is battling cancer but the truth is, you wouldn’t be able to pick out the person suffering from kidney disease. People see me and tell me how fabulous I look and although I appreciate the compliment, I wish people could see my insides. I have three kidneys now and none of them work. I am dealing with a disease that ultimately could take my life. My left arm has permanent bumps due to the fistula and bruises that come and go depending on how dialysis goes. I wake up dry-heaving and vomiting in the middle of the night so bad that I pop blood vessels under my eyes. I need to make sure to watch my fluid intake, nausea has become a part of my daily existence. These are only the physical side-effects. I haven’t even touched on the mental effects.
I brought this up with Dr. Jan because I feel guilty about the anger I have towards the lack of attention CKD receives. Chronic Kidney Disease (CKD) effects an estimated 37 million people in the U.S. (15% of the adult population; more than 1 in 7 adults) and approximately 90% of those with CKD don’t even know they have it. 1 in 3 American adults (approximately 80 million people) is at risk for CKD.
Currently, there are over 93,000 people on the kidney transplant waiting list. The wait for a deceased donor could be 5 years, and in some states, it is closer to 10 years. Patients are prioritized by how long they’ve been on the waiting list, their blood type, immune system activity and other factors.
I know I still have a voice. I know there has to be a reason that I am enduring this hell. Maybe it is my “job” to blow up social media and talk to people about CKD.
I decided to start this blog because I needed an outlet for the hundreds of thoughts I have at any given moment. Why go public instead of keeping a personal journal? Because right now I am living a personal hell and thought that maybe, just maybe while getting my thoughts out I could also help someone who is going through difficult times. I am not 100% sure what is going to be written here but I can tell you it’s going to be from my heart. I cannot guarantee that you will agree with my thoughts but please understand the intensity behind my words.
I have Kidney disease. I have dealt with this for most of my life but I found out about 9 years ago that I needed a transplant. That was when Lee, my brother-in-law decided to get tested to see if he was a match. Fortunately he was a perfect match. After a year of dialysis (I could not be transplanted because I had C-Diff) I was finally cleared for my surgery and Lee gave me the gift of life. My body rejected the kidney 5 days after the transplant and I was back in the hospital so that doctors could basically blow up my immune system so that my body would not reject. I was lucky enough to get 6 years added to my life. Unfortunately, My body rejected the kidney and in 2018 I spent the summer living in a hotel across from Tampa General Hospital. I was receiving plasmapheresis every other day in hopes of saving the kidney. It did not work and in March of 2019 I started dialysis again.
After my first transplant failed I didn’t think I could go through asking someone to donate again. I am now listed at Tampa General Hospital and working on Cleveland Clinic. It could be anywhere from 4-6 years before I receive a kidney from the transplant list. Transplant is also more difficult the second time around for me because I have built up antibodies. After speaking with my doctors it was consensus that my best option is to look for a living donor again.
According to kidney.org, “Our immune system naturally forms antibodies as a protective response against bacteria and viruses. In the context of transplantation, antibodies are good when they are ready to attack foreign invaders that can lead to illness, but antibodies can also be ready to attack foreign tissue – such as a new kidney transplant.”
I have 99 out of 100 antibodies. This makes finding a match very difficult. How did I get antibodies? Anti-HLA antibodies are formed by the immune system when you are exposed to proteins that appear similar to tissue types. This most commonly occurs in the setting of previous transplantation, pregnancy, or blood transfusion. Occasionally the cause of anti-HLA antibody formation is not known. Unfortunately once you have anti-HLA antibodies, they do not go away on their own. Antibodies can be difficult to remove from the body, although different treatments have been tried. One of these treatments is plasmapheresis. I underwent six weeks of plasmapheresis last year. Unfortunately it did not work.
I was never one to really ask for help but recently I find myself doing it more and more. So here it is… I need help finding a donor. I know that this is a lot to ask. But I guess what I’m asking is that if you’re reading my story, please share my story. The more people that read my story the better my chances of receiving a kidney.
I am finding this entry very hard to write because I don’t want anybody to read it and think that I take this lightly. I know that what I am asking of somebody is huge and I know that there are many things to take into account. Miracles happen every day and I have to believe that my miracle is out there..
Here’s the cool thing about transplantation, Someone can choose to donate for me and if they are not a match for me then they will match us with another transplant patient and donor.
If you are interested in learning more you can contact the Cleveland Clinic or Tampa General Hospital and they will give you any information that you need. Everything is confidential. I do not find out if people call to get tested for me until they decide to tell me themselves.
I am excited for what the future holds for me. No matter what comes my way I will continue on this journey. I will continue to do dialysis three days a week for four hours a day and I will continue to blog and hope that someone else out there finds comfort in my words.
I am so appreciative for all of the support that I continue to receive.
Again, I am asking that you please share my story and please ask your friends to share my story. Social media is a powerful thing!
If you would like to be tested or know someone that may be interested you can contact the Cleveland Clinic at ccflorida. donorscreen. org or Tampa General Hospital at 813-844-5669 or firstname.lastname@example.org