Retroperitoneal Fibrosis....Tony's Story Update

This is an update on Tony's health, and our lives living with RF.  The original version of "Tony's Story" covers the first couple years of his illness.....the repeated misdiagnosis, the frustrations, and his treatments.  It can be found by clicking here.

In 2004 we found ourselves trying to rebuild our lives after loosing our home and all we owned to medical bankruptcy.  Everything we'd spent our whole lives working for....our whole future was now gone and uncertain because of one major illness.  It wasn't hard enough we had to deal with a disease few doctors had ever even heard of.  But we also found ourselves in constant battle with medical insurance companies who found every excuse to pay little or nothing on Tony's medical expenses.  That first year alone, with repeated misdiagnosis, wrong treatments, and two major surgeries, we found ourselves owing over $100,000 to doctors and hospitals.  By the way, that "maximum out-of-pocket" that insurance policies claim to have....well, that sounds all well and good, but when you need it the most they seem to find loopholes and limits to get around it.....especially when you have a disease no one has heard of.

Within a week of the bankruptcy, Tony was let go from his job.  Each day we were struggling and worried, not knowing what tomorrow may bring with his health or our finances.  We found ourselves paying an outrageous amount for Cobra insurance just to keep him covered.  We had to let bills go, and limit our grocery shopping, just to keep Tony in medical coverage and paying for his medications.  One medication not covered by insurance was costing us $140 a month.....a cancer medication at that.....why in the world would a medication for such a serious disease not be covered by insurance !?!....well, because medications used for experimental purposes are not covered.  That being the case, all meds for treating RF can be considered experimental, because there has been no research to prove which meds truly work, if any.  We were caught up in dealing with a rare life threatening disease, medical insurance, and expenses, and very little income.  Tony was hired by one company only to be laid off a couple months later.  He soon was hired at yet another job, where he worked for the next few years.  Then one day, during a meeting, and in front of an entire office, it was pointed out to him that it was illnesses such as his that caused insurance rates to become so high.  On his written evaluation he was given all high marks and was noted as being an excellent employee.  But in one corner of this evaluation it was also noted "medical issues".  Soon after he was let go from that job too.  It became clear to us that in order to keep a job, Tony would have to keep quiet about his illness.  Of course once he needs to see a doctor for testing or treatment they find out anyway....  Fortunately the company he has worked for since has been very supportive and understanding.  Now our only fear is how much longer he will be able to continue to work.  As anyone with RF can tell you, you may be feeling fine and like you have finally made it past the worst of it one day, but the next day find yourself in serious pain and/or in an emergency room facing surgery.

Tony was also diagnosed with another rare disease called Pancreas Divisum in recent years.  It is a congenital deformity of the pancreatic ducts.  We have read there is a surgery to correct it, but have been unable to find a doctor willing to do it.  They claim it is unknown if it the procedure truly works, so it is not done.  Hmmm... how do they know how well it works if the condition is rare, and the surgery seldom done !?!..... I'm thinking a patient in so much pain would be willng to risk the possibility of the procedure not working if it gave even the slightest possibility of hope.  Pain meds are the only answer for help.    This past year Tony underwent a Femoral to Femoral bypass.  He had been loosing feeling in his left leg, and had pain with walking.  It was determined by a vascular surgeon that the RF mass was causing four constrictions on his left femoral artery.  The bypass was supposed to improve the constricted blood flow, hence relieving his symptoms.  But what should have been a common procedure became a nightmare when complications arose, and the surgeon who did the procedure could never be tracked down.  The day following his dismissal I took Tony to the emergency room with recurring leg pain, and serious leaking from one incission which had opened back up.  He was sent home with a deep open wound and told to contact his surgeon whom they were unable to reach.  Upon calling his office we were repeatedly told he was not in and could not be reached.  We were made an appointment to see his collegue, but even he put us off saying that "Steve needs to take care of this."  Over the next few weeks we kept returning to the e.r. because of the pain and leaking which was getting increasingly worse.  By this time the leaking was so bad that Tony had begun using Kotex maxi-pads to absorb the fluid.  Each time his surgeon was not able to be reached so little was done for him.  We were told over and over that "his surgeon needs to see this...his surgeon needs to take care of this."  No one wanted in any way to touch his screw up.  Finally an e.r. physician who was frustrated with the inability to reach the surgeon, decided to admit Tony to the hospital.  He then spent a week of lying in a hospital bed with no answers as to what was going on, nor what they planned to do.....and still not a sign of his surgeon anywhere to be found.  At one point a collegue commented "knowing Steve, he's off playing golf."  I hope he wasn't trying to humor us because it obviously didn't work!  Then out of nowhere, Steve showed up early one morning and announced he was going to take Tony back into surgery.  The wound was re-cut and cleaned, and a drainage tube put in....which should have been done weeks before, had the doctor been doing his job to begin with.  It would have saved us a ton of medical expenses....e.r. rooms, added meds, and a week of hospital stay all because a surgeon chose to avoid his responsibility.

Through all this time no one made any effort to explain his leg pain...just kept saying the bypass was successful so he shouldn't be having the pain.  Frustrated and angry, I was finally able to find another vascular surgeon willing to re-evaluate Tony.  One simple scan and the source of the pain was found....an epidural given during the surgery had caused a spinal hematoma (blood clot) which by now had hardened to scar tissue.  If found right away it could have been treated, but Tony now lives with even more pain for the rest of his life.  All because no one took the time to do a follow up after the epidural, or the few extra minutes to look into his leg pain complaint after a major surgery.  All were so set on not getting involved in another doctors mess, that they ignored the problems.  All this added trama and medical expenses because a "professional" couldn not find time for his own patient after surgery.  To add insult to injury, we were also told by the new vascular surgeon, that after reviewing all the previous testing done by the original surgeon, it is his opinion that the bypass surgery was not necessary!!! The nightmare continues.....Tony's work changed insurance providers.  The new insurance refuses to cover Tony's RF doctor as "in network" because he is not a local physician.  We have repeatedly called and argued with them....our family physician even wrote them explaining how important it is for Tony to see this doctor.  Still they refuse to cover him.  So Tony has had to settle for a doctor who knows little, if anything, about Retroperitoneal Fibrosis.  We then find out that the hospital and clinic where the new doctor practices are no longer accepting our insurance.  Apparently they were having a lot of difficulty getting payments from United Health Care, and claims were constantly being fought and turned down.  On the up side......I emailed our State's Attorney about the insurance situation explaining how it has left Tony without medical care for his RF.  They forwarded the email to their Consumer Protection Division.  Only days later I recieved a phone message from the insurance company referring to a complaint filed on them by the state.  They claim to be anxious to resolve the problem......we'll see!  I'll be sure and post more here if it ever gets resolved so be sure and check back if you're curious.  Great News!!!!  A new Granddaughter!!!    On September 17, 2007 Tony and I became grandparents to our second Granddaughter.  Healthy, Happy, and Beautiful....  Avri Rayne, 6 lbs. 7 ozs. Update on the insurance situation.....Our returned call to Kelly at UHC left us more frustrated and angry than ever.  She in no way tried to help us resolve the issue as she had claimed in her phone message.  Instead, she claimed to be unaware of the situation with UNMC dropping their coverage, so there was nothing she could do to help us there.  Explaining once again that UNMC and Mayo Clinic were Tony's only options for RF treatment......Kelly said "we never said we wouldn't cover Mayo Clinic".....Tony said "but you refuse to cover it as in network".....her response was "ya, but we never said you couldn't go!"  She basically used a lot of arogant, cold hearted double talk just so she could say she did her job in talking to us.  I again wrote the States Attorney and the consumer division explaining the phone conversation...that was quite some time ago, and this time we have not heard back from them.  So.....Tony is still without a doctor to handle his RF medical testing and treatments.  A decission was finally made by UNMC to continue accepting UHC insurance.  After months of worry they are said to have "worked things out" with United Healthcare Insurance.  I'm guessing they realized they'd be loosing way too many patients by turning it down !!!!! It has become very clear that money is way more important than medical care in this day and time.