I have an extremely rare kidney and vascular condition – “Nutcracker Syndrome or Renal Vein Entrapment” that was made exponentially worse April 26th, 2016 after a misdiagnosis and an incorrect procedure left me in a debilitating state from constant pain. This is such a rare condition that so few doctors treat it I have had to travel extensively for nearly 2 years. However, after an exhausting and emotional battle last week with BCBS, I have finally been approved and my new life starts April 3rd 2018 at the University of Colorado Hospital in Denver with Dr. Nydam and Dr. Pshak.
Easter and MY new beginning couldn't come any sooner this year as my weight continues to fall near 90lbs, my emotions are plummeting and my finances quickly following, I know those close to me are right when they are saying "You can't keep going on like this..."
So, I have to put my pride aside and reach out again to say that I need help. We have immediate needs like plane tickets to purchase so I can get from Raleigh to Denver, we will need a place to stay for several weeks when I am out of the hospital that is close to the hospital and nursing staff, and frankly, Billy is also going to have to take at least a month off of work as well to be with and care for me as I will not be able to walk and/or care for myself. We have accumulated over $100,000 in medical expenses alone from deductibles and uncovered procedures in the last 2 years. Although we try and at one time had savings, it has become nearly impossible to keep up with the expenses associated with a rare illness where assistance organizations do not exist. As a matter of fact, I own and run the only nonprofit awareness foundation for my illness so there is nobody to go ask for help or assistance to apply for. I have been assigned a social worker at BCBS and at the hospital and sadly there are no organizations either social work or myself can find that offers any type of assistance to those with my illness. So, now that I know I am going to be down and unable to help for so long and my husband will have to be out of work at least temporarily to care for me I have no choice but to ask for help.
This Go Fund Me campaign is designed to raise money for travel and expenses to and from Denver Colorado and Raleigh NC as well as co-pays and other costs associated with treating a rare condition where no other foundation resources available
This kidney auto-transplant is much different than an organ donation kidney transplant in that they are actually transplanting my OWN kidney and ureter (carries stuff out of kidney) from the left side to my lower right pelvic region and rework my vascular system to route the blood back to my heart correctly. The other major way if differs is sadly it is not able to be done fully laparoscopically so I will be having full open abdominal surgery to allow the doctors to also remove tons of collateral veins wrapped around my insides strangling things and causing pain described as passing kidney stones, being in labor, having a bulged disk in your spine including sciatic nerve pain and the feeling of constant nausea ALL at the same time and nearly constant. This, unfortunately, is the pain I am in all day, EVERY day that has left me with no choice but to have this extremely major surgery and be sidelined from life for yet another year!
In addition to the transplant of my kidney and ureter, they will be removing the metal coils that were inappropriately placed in my ovarian veins. What that basically means is they will have to meticulously remove 1000s of tiny metal pieces that are lodged in veins in my abdominal area and a muscle in my mid back near my spine, one at a time, while my kidney is placed on a machine to be kept alive.
The surgery will take 8-12 hours depending on what complications arise and there are always some that arise. I will be in the hospital hopefully no more than 2 weeks but it is not uncommon to be there longer and/or back in shortly after discharged with complications because of the major disruption internally. The recovery to do much more than get out of bed is about 3 months. 6 months before housework and lifting more than 5lbs. On average it is taking about 1 year for intestinal stuff to be working correctly and about 12-18 months before “extended physical” activity without exhaustion. It is said to be one of the hardest surgeries anyone can go through and honestly I don’t know if I am mentally prepared but I have faith God will look out for me and my family as I fight to get through this huge health battle back to a healthy me.
So please feel free to share this anywhere and everywhere! Thank all of you in advance for your prayers, healing thoughts and help for me and my family as I prepare for this major surgery.
I am asking anyone that can find it in their heart, to donate anything possible to help us stay on our feet. If you'd rather not help, or you are not able to, I will completely understand. Like I said, I am putting my pride aside and actually asking for help, which is something I rarely do. But, if you are willing to help, my family and I will greatly appreciate it! We love you all, and thank you! ❤️❤️
My bags are packed for the hospital!
I HATE those "I am in the hospital and I am sick" photos so here is what I do when I am bored and waiting for the doctors to come in!
The hardest part of traveling for my surgery is leaving my muchkins at home. Especially the little spunky one because she is too young to be in the transplant unit but the college one still needs me to :(
And when I am better I am going to marry my husband all over again except this time I will be able to walk down an aisle to him AND be pain-free. Something I didn't get the chance to do the first time! We have not yet gotten to take a honeymoon and our first anniversary will be spent either IN the hospital or close by unable to yet care for myself. Yes - he is a saint (most days) and I can't wait for a day he doesn't have to see me this way. <3
- Beth Denzin
- James Hutson
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