Von Hippel-Lindau Disease
VHL sucks!
I first found out I had VHL in 2007. I have always been healthy never broke a bone or been in the hospital never felt sick. I developed a tumor in my right kidney in late 2005. Doctors sugested removing the whole kidney and the cancer would be gone. SO with that being said I opted to do that. I became pregnant with twins in 2006. durring that time I was diagnosed with a aortic anursim of 7.5.. the twins came early due to the risk. They were 5 weeks old I went to the doctor told her I was not feeling well. She decided to do a scan.. The following day after the scan she called and wanted me to come in on her lunch hour. She sat me down and told me I had Pancrease and Kidney cancer! What a blow it was. I was a single mom with 4 children one grown and 3 littles at home ages 3 and 5 week old twins. I went to the University of Michigan hospital cancer center.. They agreed that this was not normal.. they did a test and told me I had VHL... Then the surgeries started! Getting my affairs in order because I was sure I was going to DIE!
SO the fun started in 2007 I had Open heart first because that was pressing I could not wait no longer.. Then I had a partial on my left kidney. I sufferered 3 Pulmanry emboli .. I had a whipple... That sucked! I had 3 lazer surgeries on my eyes for tumors.
Then came the testing of my 4 children and 3 grandchildren. And the awful waiting game! First was my oldest Daughter she tested positive. Next was my second daughter she tested Neg. then my twins one Pos. and one Neg. Then the 3 grandsons all tested Pos. The worst feelings in the world knowing you gave your kids VHL.
My oldest was diagnosed with stage 4 pancreas cancer in 2009 after the birst of her son.. She is still with us today! It is lots of scans and doctors appt. I have had several more surgeries since all this.. All of the kids have been clean so far. Praying everyday they stay this way. Looking back on all of this. There were signs my father passed from pancreas cancer when I was 7. my half brother was not in my life.. But when I located him he to had passed and his widow said he had VHL and passed. 1 of his 3 children had it and has passed.
Life gets busy and for that I am thankful! I try not to dwell on it and I am greatful for every morning I wake up. I try and remain Pos. I stop and smell the roses and I try and laugh often.. and Love whole heartedly... Forgive because tomorrow is not promised..
I hope my story brings hope to someone who was once in my dark place.. there is light keep fighting.. that first year after the birth of the twins was hell. But I am here today to enjoy my kids.
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