If you need a limb chopped off, I know a guy.

I will be coming home from Boston this week just in time to celebrate my eldest son Ravis’ 12th birthday on the 12th of July! My surgery was only delayed five days due to covid and took place on May 27th. My unique circumstance proved to be a wee bit more of a challenge than expected, even for Dr Carty, and I ended up having a total of five surgeries and spending four weeks in hospital.

The plan with the above knee Ewing amputation that Dr Carty has devised is to take three sets of muscles from below the thigh and reattach them in the stump. This allows for a host of benefits over a typical amputation. All other amputations are essentially using the same technique they used in civil war days. I will get into the details in a later blog. Because of the damage 31 years with an open wound had done, when Dr Carty cut me open he discovered that my foot muscles were very obviously shot, so he did not attempt to move them up. He did move both other sets of muscles and reattach them, but it looks like only the uppermost pair actually made the move intact. This is by no means certain and the middle pair could at some point miraculously come to life as they are set up in place if that were to happen.

Because of my venous issues etc. Dr Carty was unable to close me up as normal and had to put me on a wound vac and do three debridement surgeries to combat skin die off and other complications. After that the wound was finally ready to finish the attachment of nerves to my muscles, and close the leg up with a skin graft taken from my right leg. Due to the unfinished nerve work, I got to experience the joys of phantom pain, something many amputees deal with regularly. It was the worst pain I have ever experienced. It felt like my foot was in a vice grip and it was always being tightened. I would instinctively grab for my foot to soothe it but it wasn’t there and I would grab at the bed in vain. The best government heroin could do nothing to assuage it because of course it didn’t exist, supposedly it was just in my imagination. Thankfully in the last surgery Dr Carty performed, he did something only three surgeons in the country are presently doing, and he attached the nerves to my muscle and the phantom pain has been gone ever since.

I spent one more week in hospital, attached to a wound vac and various other things as we hoped the skin graft would take for the first time in my life. Third time’s a charm in this case, and I was able to be wheeled out of hospital four weeks after walking in. My parents have been taking care of me in an apartment we rented in Boston for the last few weeks.

At first I was moving around on a walker and feeling very weak and wobbly after 4 weeks in bed, but I have been eating well and am now feeling confident on crutches, and have been taking longer walks, and doing a little upper body strength training. One of the most common issues post amputation, especially in the middle of the night, is momentarily forgetting you don’t have both legs, and falling, but so far my memory of the missing limb is pretty good! I don’t miss my leg as I had plenty of time to say goodbye before this happened, but it is still a mental and emotional adjustment to realize it really is gone, and I have to depend on man made parts to move around without hopping. I have been continuing my practice of finding things to be grateful for and letting the thankfulness sink in. Aside from my family and friends who have been amazing throughout this whole ordeal I am also incredibly grateful for Dr Carty.

Barbara, a PCA who worked most nights at the hospital and would take my vitals every few hours, told me one night that after Dr Carty came and saw me (which was most days) he would talk to the nurses, and even the PCAs, and ask their opinion on how I was doing. This struck her as a good sign of his character which is why I think she shared it with me. I couldn’t agree with her more. It shows a humility that many people at his level of expertise rarely exhibit. He still knew he didn’t know everything, and anybody, no matter how far down the hospital hierarchy, could have an insight that could help. These are the type of experts I want to surround myself with in every area of life.

All of these apparent roadblocks and hurdles have made it even more obvious to me how blessed I am to have been forced to search out and find Dr Carty. If I had just taken my hometown surgeons’ advice and let him cut my leg off, almost 2 years ago, it probably would have been an unmitigated disaster. It is likely he would not have had the skill to deal with such sensitive and problematic veins and tissue. It would have been a miracle if he had got me closed up at all, and I would be experiencing phantom pain, and not have the extra bulk of muscles for protection and possible future benefits in my stump. By finding one of the top reconstructive surgeons in the world to take care of me I am now looking forward to a quality of life I have not known since that copperhead snake bite 31 years ago!

The Insurance Warrior

At 10.39 on Wednesday February 19th Health Partners called me to tell me that based on the information contained in my appeal they had decided to APPROVE my amputation in Boston! My new surgery date is May 22nd. This is the result of a multilayered miracle that played out over the past three weeks.

It only took a couple days of phone calls and online searches for me to discover I could not change my health insurance. November is enrollment time and unless I got dropped by my insurance I couldn’t shop around for a better policy ie one that would cover me where I need to be treated. This meant that I needed to go through the appeals process.

I had already written an appeal last year when upon discovering that my wound was now hosting a form of skin cancer (squamous cell carcinoma) my local Doctor said he needed to amputate me above knee (AK). This prompted our finding Dr Carty in Boston. He is one of the top reconstructive surgeons in the world and he had designed a treatment plan that would save my knee by giving me a modified below knee (BK). My insurance refused to pay for it and I appealed. Their letter explained the reason for denial was I could get the same treatment in network! Obviously that was the opposite of true, and I would have taken the appeal to the state except that by this time the cancer had progressed to the point that even Dr Carty was unable to save the knee. I was then accepted into the Ewing amputation Clinical Trial for an AK, which is what my insurance most recently refused to pay for.

Just when I thought I would have to face the insurance company and their twisted logic alone again my Mum forwarded me a link to a lady who called herself the insurance warrior. The link had been sent to her by my brother Joel who had shared my story with a guy named Pat who he was working with the day my surgery was cancelled. Pat said his wife Barbara had fought her insurance and won years ago. She had been helped by a book she read written by a lady named Laurie Todd. I clicked on the link and watched Laurie tell the story of how she became the insurance warrior. After being denied coverage for her own life saving cancer treatment, she appealed and won her case, and has been winning cases (218) with other patients for the last 15 years. Of the 9 billion people on the planet I knew this was the one person who could help me. I sent her an email before I even finished watching her talk.

The next morning she had emailed back. She had found me on facebook, made sure I was a real person, gave me some homework and said we would talk the next day. I did my homework and continued to do so and a couple days and many phone calls later she agreed to take my case. We spent the next week constructing an appeal that not only told my story, but explained legally and medically why they had to cover my surgery. We showed they had already damaged my health by denying the BK operation last year and that the Ewing is not the same as a conventional amputation, that my long term health will benefit from it and it is obviously not available in network. Laurie also discovered in my own member benefits book that their own language forced them to cover clinical trials if they were backed by the Department of Defense, which my trial is. Laurie has a masters in psychology and french literature, two genres of expertise that coalesce beautifully to make her the perfect person to craft a story and an appeal that gets immediate and right action from those to whom it was written. As she said during a phone call last week “we never know what we are in training for”!

One of my homework assignments was to track down the other patients who have already experienced the Ewing amputation. We needed to show precedent, that this is a surgery other insurers are paying for, and the results are as good as the literature suggests. This was another unexpected blessing of working on the appeal. Many of the cohort reached out to me and talked with me on the phone including Jim Ewing the 1st to have the surgery and it’s namesake. All the folks who reached out to me and shared their information were helpful, positive and very excited for me to join their exclusive and life changing club. Showing precedent was easy to do.

The insurance warrior doesn’t mess around, She doesn’t just know how to write an appeal she knows how to put it out there so it will make the most impact. I won’t give away too many of her secrets (although she gives them away in her book) but we sent the appeal to all the top brass at Health Partners and the top folks in oversight at the government in DC and here in MN. Laurie tracks down as many personal numbers and emails for all these folks and the day after the appeal went out I hit the phones. I called and followed her script as I created an extra sense of urgency in the offices of these people who don’t normally ever see appeals because they have a system already set up to turn them down. As Laurie says if you want to beat the insurance company do the opposite of what they tell you to do.

That’s just what we did. When the president of Health Partners’ receptionist told me someone else is handling it so we don’t need to call this office anymore I said thank you and called them back at the end of the day just to check any way. It didn’t take long though. The appeals went out Sunday evening and we had our yes by Wednesday morning. Turns out the peace I experienced after the “bad” news in Boston three weeks ago was completely justified. I had an adventure with a divinely appointed angel. I got to take care of some practical life stuff that I wouldn’t have been able to deal with had the surgery happened when it was planned. I got to enjoy a little vacation in Boston with my parents who are two of the best people anywhere to hang out with and when I go back in May for the real deal I will be better prepared, in better health and with even more to be grateful for.

The Plot Thickens

I thought at this time today I would be 8 hours into a 12 hour surgery and not sitting in a coffee shop typing this. Yesterday at 4 pm my Boston doctor’s office received notice from my health insurance company that they would not cover any of my amputation costs. Two months ago my insurance had told them I didn’t need prior authorization for out of network care but had failed to mention that was because they wouldn’t pay for any of it. My Health Partners insurance is through the state of MN and usually state plans are less generous out of network but the Boston team said this is the first time they have encountered one with zero out of network coverage.

I received the call from my doc’s assistant Lori while waiting for my parents to arrive at the airport. I told her that I would still go ahead with the surgery and would just have to figure things out after the fact. When my parents arrived they agreed that there would always be a way and didn’t seem phased by the new development. We went back to the apartment we had rented for the month. Mum and Dad went out to eat and I went to bed. I wasn’t really getting good sleep and thankfully I forgot to put my phone on airplane mode (which I usually do when sleeping) so when my doctor called me from his cell I answered it. Dr Carty had just heard the news because he had been in the OR all day and he informed me regretfully that we would have to postpone the surgery. He said that ethically they couldn’t burden me with what would be a bill upwards of $100,000, in a best case scenario! From a purely business perspective it amounted to the hospital giving me a very large loan I doubt they wanted to do on 14 hour notice.

We met with his staff at the clinic today. They had submitted one appeal to Health Partners that was denied, but have found a different way to approach the issue and have submitted a second appeal already. If that appeal fails we can take it to the State, but this process can be slow as I discovered last year when I went through it trying to save my knee……. but that’s a whole other blog post.

I am going to look into getting a private insurance policy that will cover a high percentage of out of network costs so if anyone reading this has experience or works in the belly of the health insurance beast I would love some advice or recommendations. There are also some other options Dr Cartys’ staff are aware of to get funding support and together we will pursue each one until the right doors open.

On a personal level I am obviously in a state of shock and in a bit of a haze. I was pretty exhausted and ready for a couple weeks of enforced rest and government heroin after all the work it took to arrange life for this to happen. I’m going to enjoy a few more days in Boston with my parents before I head back to real life in Minnesota again. Next time we come back here, hopefully within a couple months, we will be even better at it, thanks to our dress rehearsal. I am also overwhelmed by all the love and positivity I have been receiving from so many friends and family at this time. Thank you all.

My Story Part 1, Ireland.

     I was born with an extensive birthmark most of it concentrated on my left leg. I now understand this to be Klippel-Trenaunay Syndrome, which causes vein malformations and usually results in abnormal development of blood vessels, soft tissues, bones and the lymphatic system. My parents said that as a baby my left leg was abnormally large but they prayed and it miraculously evened out and the puffyness and inflamation went away. 

      My first ten years were not affected by my birthmark in any way other than the usual remarks and weird looks kids will give to something abnormal and some funny stories. One day on my way home from a sweetie shop (candy store) three kids knocked me off my bike, and were beating me up until one of them saw my birthmark and started freaking out thinking he had caused it and they all ran away!

     When I was 11 in my last year at primary school during a football (soccer) practice I was tackled hard and my opponents cleats cut my left ankle. I didn’t pay much attention to the cut and just assumed it would heal but weeks went by and it became infected. It wasn’t until it had become so painful that I was limping during a game that my field hockey coach noticed and took a look and we realized I needed to bring it to my doctors attention. So began the next 31 years of living with a wound that refused to heal.

     This was 1988, a time before the widespread prevalence of Diabetes and Aids so wound care was not something the medical profession had put much research into. My rare disorder was not well understood nor did they think to give me an ultrasound to find out how much my vein malformation was affecting my healing (I now know that the main vein in my left leg stops at my knee, and I have next to zero blood flow in my lower leg). I had a skin graft operation that didn’t take. Because I was missing my main vein my other veins were doing a lot more work and so appeared to be varicose veins and I underwent a varicose vein stripping. This didn’t help and so I was told to stay off the leg and keep it elevated for blood flow purposes. The irony here was that because of not using my ankle my achilles tendon atrophied and I lost the pump mechanism in my ankle further hampering blood flow. 

       Although I had to give up sports which was something I was good enough at to be serious about pursuing , I discovered guitar, writing songs and reading. I am so grateful now to have had the time and impetus to pursue tools and gifts that would serve me well in the future. I must have written 300 bad songs before I wrote a good one and if I had not been off the soccer field that most likely would never have happened. I am also a fairly extroverted person but being forced to spend so much time alone and away from my peers helped me develop an appreciation for the alone time that is needed to recharge my batteries. There are too many blessings and benefits to count because of this strange and painful burden I have carried, and they will most likely be a main focus of this blog going forward.