fighting the rare fight

Try fighting something other people don’t see. This fight that you and your body just go at everyday, every hour, every minute, every second. That made your mom’s body too tired to fight and took her from you at a young age. That roughly 1 in 36,000 people are affected by, so theres no easy to find *single* specialist to help fight this. I honestly cannot tell you the amount of different specialists, nurses, support staff and so forth I see in a calender year just to cope with the constant battle. These people –who do the damn thing, let me tell you– that constantly fight with me and are learning alongside of me as we piece new results together like a puzzle. And theres these professors that tell students in medical school that they should know what Von Hippel Lindau is but chances are, they won’t see any cases so not to lose to much time on it (I was furious when I was told this by a third year resident). So why would a student want to specialize in or research it specifically after being told this?

There are three clinical care centers (four if you want off of the coast) in the coastal southeastern region of the US. (But a new international care center in Israel recently got recognized, whoop whoop!!) Most of which that are not in teaching hospitals, which is important to me in the instance of that third year resident being able to learn and educate others on VHL. Add the stress of moving to the stress of finding a new team of doctors in a new state while you’ve been at the same hospital since being diagnosed and it amplifies the whole situation. And oh boy, if you have to go through the referral and record gathering, I pray you have more patience than I do. Thankfully, in this instance, for technology to be able to connect with the rare few also coping with Von Hippel Lindau. The VHL alliance has created groups and resources to connect warriors fighting this same fight and I am eternally grateful. Grey’s Anatomy also mentions Von Hippel Lindau and thank you, Shonda Rhimes for making me feel that bit of fame. If you haven’t watched, you’ll love Denny, its brought up in season 7 episode 10 and season 8 episode 10.

     With that being said, what about this pain that wasn’t there yesterday, a new numbness and is this headache actually a brain tumor? Or am I just behind on how much caffiene I’ve usually had by now? When do I know if I need to alert my doctor? Or which doctor do I tell about this symptom? Back to the referrals, which doctor do I contact and do I contact each and every specialist? There’s no easy solution. The next surgery may leave more than just one side of my body numb and lead to more physical therapy. How do you decide on which treatment path to take? Bless the doctors with the patience to reteach someone how to walk. Bless all the doctors with the amounts of patience most seem to have.

     Though the lovely tumors, surgeries and constant MRI’s are not the most fun, it is hardest to not let a diagnosis like VHL define my way to live. I will speak on it in hopes of getting word out about this rare condition. In even more hopes to prevent others from losing their loved ones from the scary rare things. Thank a specialist next time you see one, they’re the ones that hold most Von Hippel Lindau patients lives in their files and smart, thoughtful hands.– linking this for myself, there’s an episode of house I have yet to see 😉 — after finding this link, the episode of House is well worth the watch too.


2 thoughts on “fighting the rare fight”

  1. I just lost my darling husband, Johnny, November 20th. He was 68 and had had his 7th brain surgery June 1, 2017. He started out after the surgery appearing as though he would get better like he did after all six others, but he was in ICU 49 days waiting for a rehab bed. Of course he picked up every infection one can get in the ICU, along with delirium. After he was moved to the Rehab facility, he became dehydrated (even though I told them he had a kidney transplant in 1999 and dehydrates easily) and his blood pressure plummeted sending him to the ICU in that facility. There he received 3 or 4 bags of fluid. He became septic and developed a DVT. I can’t emotionally go over everything that happened to him but let me say he was in hospitals and select speciality services for 8 months. Not home for 8 months! I finally brought him home January 25th against the recommendations from the doctors. They wanted him in a skilled nursing facility. I have to share that the doctors told me to go home. Go home and let us care for him. I’d seen the “care” he got and it did not meet the standards of care he deserved. I had to hold him up in one of those big cardio chairs for 1/2 hour while the nurses shared info to the next shift. And they knew it because I asked for help but was told to wait. I loved my husband so much. It was an absolute privilege for me to care for him. He had a trach, a feeding tube, was blind in his left eye (since 15 years of age) and because the right side of his facial nerves were affected by the surgery, his right eye was partially sewn shut. He could not sit up or stand alone. He couldn’t even turn over in bed alone. He was incontinent and couldn’t swallow or speak. Was on 24/7 oxygen and required lots of suctioning to remove saliva from his mouth and throat. He was my hero, extremely positive, lived life between surgeries (20 or so) as normal as someone without this absolutely horrible disease. He always made me feel loved, kissed my hand when he held it. We were together 49 years and while that sounds like a lot of time, it was not enough. He was a wonderful husband and father. Our daughter has VHL too.

    Liked by 1 person

    1. I am so so sorry for your loss! VHL is not an easy fight. thank you for sharing your story! You and your husband both are in my thoughts. How strong you are to share such a difficult time.


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