Since a lot of the posts today were more than a little thought provoking, I thought I would add my 2 cents.
What have I learned since I was diagnosed with FSGS in 1992 and had a life saving transplant in 1999?
- First of all LIFE is not always fair. I had strep throat when I was 9, followed by nephritis and high BP a couple months later. It was 1959. I couldn't believe that 30 some years later, I would be in kidney failure. I am not diabetic and never had any other health problems.
- You need to be your own advocate. Speak up for yourself. If you have questions or don't understand something about your disease - ASK. If your doctor is not willing to answer you - it's time to find a NEW doctor. You need to find a medical professional that believes what you tell him/her and one you can trust!
- You know your body better than anyone. So, if you are having a problem tell your doctor!
- Learn everything you can about your kidney disease. Knowledge is everything! Makes you more credible to the medical community and makes this whole kidney journey a whole lot less scary!
- Get your BP under control, even if it means taking several meds to get it done. I have scarring on my heart that was caused early on when my BP was too HIGH!
- This Kidney JOURNEY we are on is NOT easy but it is so important to try to stay positive and have the right ATTITUDE as much as possible. I always remember when I was called for my transplant and arrived at the Hospital, a nurse told me that she was sure I would do fine. She told me that I had the right attitude.
- The first year after a transplant can be challenging. Because of the steroids and the immunosuppressants you heal slowly after your major surgery of a transplant. It also takes your body awhile to adjust to your new meds. But you will adjust to them.
- After a transplant report all side effects, illness's, anything out of the ordinary for you to your transplant team. If you don't tell them, they can't help you. They adjusted my meds several times over the first year so my side effects improved. I was hiking in Glacier National Park in MT 8-9 months post transplant because my team listened to me and helped me.
- Don't skip any dose of your meds. And have all of your labs done when they are ordered. Early rejection of your new kidney can be stopped if caught early.
I am living well 20 years post transplant. My deceased donor was a 16 year old boy who was a 4/6 match. I was told in 1999, that a deceased donor kidney usually has a life of 12-15 years, and then I would need another transplant. Here I am living strong 20 years later!
God bless you all and I hope 2020 will reward you with good health and may all of your dreams come true!
Anne
The whole finding a living donor process is a JOKE!!!
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