Retroperitoneal Fibrosis

Welcome to our site.  If you are here it is most likely because you, a friend, or loved one, have been diagnosed with Retroperitoneal Fibrosis.  I hope that our site is of some help to you in your search for answers.  A little about us.............

We are Tony and Deborah Bailey of Iowa.  We began this site in 2002 when Tony had finally been diagnosed...after nearly a year of repeated mis-diagnosis.  The frustrations of medical professionals with little or no knowledge was only the beginning.  Tony was later diagnosed with yet a second rare disorder...Pancreas Divisum.  It is a condition he was born with, but for some unknow reason he had no symptoms until a couple years into his RPF diagnosis. 

Tony nearly lost his life twice during one surgery.  What was supposed to be a simple biopsy, turned into a nightmare.  Tony's mass is wrapped around his aorta.  In an attempt to cut away a piece of it for biopsy, his aorta was knicked twice!  Both times became a rush to save him from bleeding out.

The nightmare continued...Along with the uncertainty and medical frustrations of the illnesses, we have found ourselves doing battle with our medical insurance company just to pay their part of the billing.  After the biopsy, and a year of medical testing and misdiagnosis, we found ourselves $100,000.00 in medical debt.  Our insurance was battling us on every bill.  Even his medications were being questioned.  You see...insurance companies tend to have in their policies, a refusal to cover any medication or medical treatment that is considered experimental.  With Retroperitoneal Fibrosis being so rare, nearly every aspect of dianosis and treatment is considered experimental.   So with insurance companies such as ours who prefer to challenge every medical request, it is the perfect excuse for them to not pay out.  I guess to some, their bottom line is way more important than the actual health of the people who buy their policies.

We drained what little savings and retirement we had built up, and sold our personal belongings in an attempt to pay down the expenses.  Yet, it was not enough and we ended up loosing everything in a medical bankruptcy.  It was a rough and humiliating time for us, but we have worked hard to pick up the pieces and move on as best we can.  Tony struggled to keep jobs.  He had been let go from a long employment soon after his biopsy surgery.  His boss commented in a meeting that it was illnesses such as Tony's that caused their insurance rates to go up.  Tony was given all high marks on his annual review, but in the corner of the written copy it was noted "has medical issues."  He'd had a few jobs after that, that seemed to last just long enough for him to file an insurance claim.  Then they'd find reason to let him go.  Just one more frustration to deal with.  He finally found work for a company that has been very supportive and understanding of his health problems. 

Just when we thought things were beinning to look up, Tony underwent a femoral to femoral bypass.  The mass began constricting blood flow to his left leg.  He developed minor complications afterwards but is now doing well. 

As the years have passed, Tony's RPF symptoms have subsided except for an occasional pain flare up.  He chose to go off all meds two years ago, and so far so good.  The mass has not grown, his pain is controllable with over the counter meds, and he no longer lives with the added misery of medication side effects.  Annual ct scans of the mass to watch it's growth, and annual checks on his bypass, are now all we are hoping the future holds.  But as anyone with RPF can tell you, it is a very unpredictable disease. 

There isn't much we haven't been thru these past several years.  It is our hope that by building knowledge of this rare disease,  we can ease the frustations and lighten the struggles of others.    Best wishes to you all