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In September of 2020 I was diagnosed with chondrosarcoma, a rare bone cancer. It was found in my left pelvis and hip area. When it was found it was so severe that the doctors said we had to act right away. The only solution was surgery. So, later that month I underwent hemipelvectomy surgery and lost my left pelvis, hip, and leg. You can read about my journey at kriskristensen.com/blog. I’ve included some of the highlights below.
Since that day, my whole life has changed. I lost my job, my ability to get around, and my ability to do many things I once loved, including many of the things that a father and husband should do. Then there are the mounting bills… It can be overwhelming sometimes.
But I’m still me… and I’m still here! I’m learning a lot and will hopefully become a better person than I was before all this happened. Woe is NOT me! I am determined not to give up or give in. I just need some help. I’m looking for ways to buy some mobility devices and pay some bills.
I am working with Help Hope Live, a charitable organization that helps raise funds for people like me. By donating to them on my behalf, not only do you help me out, but you get a tax deduction. Help Hope Live manages the monies and ensures fiscal accountability (that the money is only going toward my legitimate medical expenses). If you feel like giving, please, make your tax-deductible donation by clicking on the Give button, just below my profile picture.
For more information, please contact Help Hope Live by calling: 800.642.8399.
Thank you for your support!
Here’s My Story
Recently, I was interviewed by a friend of mine for his podcast, Parrish the Thought. Here are two links to those interviews. You can get an audio version of the story below.
Shortly after my surgery:
https://podcasts.apple.com/us/podcast/kris-kristensen-i-complained-and-it-saved-my-life/id1348128086?i=1000508939372
Nine Months into the experience:
https://podcasts.apple.com/us/podcast/kris-kristensen-9-months-with-my-new-leg-and-an-mba-in-life/id1348128086?i=1000542529688
https://podcasts.apple.com/us/podcast/kris-kristensen-9-months-with-my-new-leg-and-an-mba-in-life/id1348128086?i=1000542529688
In September 2020, what I thought was sciatica produced by herniated spine discs turned out to be something worse. Much worse. I was diagnosed with chondrosarcoma, a rare bone cancer. A gigantic tumor had developed inside my left pelvis and had wrapped around the sciatic nerve (thus the sciatica). By the time the doctors found it, the tumor was 10 cm X 12 cm X 8 cm and had broken through the bone wall and was protruding to the exterior of the pelvis. The tumor was Stage 3 when they found it, just about to go metastatic.
My doctor sent me to one of the most highly trained and specialized osteo-oncologists in the country. She happened to have an office just about an hour away. She gave me the bad news: Chondrosarcoma does NOT respond to chemotherapy or radiotherapy; the only solution is surgery. Once she saw the pictures and knew what kind of cancer it was, she gave me two choices: either 1) conduct hemipelvectomy surgery (the removal of my left-side pelvis, hip, and leg), or 2) don’t do the surgery and wait for the cancer to start spreading (we’d be talking “end-of-life sort of things).
We had to act quickly. She said the tumor could start spreading in 3 days, 3 weeks, or 3 months, but it is about to go. Once it goes, the cancer will head directly to my lungs, which will ultimately be fatal.
The only real choice was surgery. All those bones, the whole left pelvis and leg would have to go. So, just three weeks later I was in the hospital having the operation.
I went into the hospital one morning, changed my clothes, said good-bye to my leg, and headed in for the surgery. When I woke up, 13 hours later, I became aware that the leg wasn’t there. But heck! What did I care? I was on some pretty powerful stuff and didn’t seem to mind. However, by the time I was sent upstairs to my patient room, I became acutely aware of the loss. Now I was aware. And I was sad.
I was in the hospital for two months recovering from the surgery.
A Turn For The Worse
Fortunately for me, I was sent home just in time for Thanksgiving. I was able to be there to watch (and help) as my family prepared one of the meals I love to cook. I’ll blame it on the painkillers, but I was able to ensure the turkey was completely undercooked!
Just when I had gotten used to the idea that I didn’t have a leg, that’s when things really turned bad. Shortly after Thanksgiving I went into sceptic shock. It was bad. Really bad. I was unconscious, so I don’t remember anything, but my wife and kids know… and they remember.
I was rushed by ambulance to the hospital. At first, the ER doctors were convinced I was having a stroke, but my wife knew better. She stood her ground and told them it was not; it was something else. They pushed her hard. She pushed back. It wasn’t until my wife had my orthopedic surgeon on a tele-conference with these doctors that they relented. My surgeon pointed out that the imaging showed the damage was to my large intestine. Apparently, it was dying quickly, leaking infection all throughout my body. If they didn’t do something soon, I was going to die.
I was rushed by ambulance to the hospital where I had my previous surgery. I was in the ICU for a couple of days where they tried to pull me out of shock. Nothing worked. Ultimately, these doctors said that the infection was so bad that if they didn’t get the colon out in the next 45 minutes, I would die within the next few hours. Result: Total colectomy. Irony: What a bummer!
I awoke after two weeks, having no idea where I was or what I was doing there. I don’t know how long it took for me to come around, but I finally did. At first, I was mentally slow, but I came around. I could answer the questions from the nurses and finally figured out what was going on: I had a bag attached to my stomach, and my heart fell into my feet, uh, foot.
A couple more weeks in the hospital and I was ready to come home again, just in time for Christmas.
Total time in hospital since the original surgery: About three months.
I was in the hospital so long, had to take so much time off from work that I missed some key milestones for the company I worked for that they had to let me go. That’s right, I lost my job! Just when things went from bad to worse, they got worser. Then worser still: I had to go on COBRA insurance, which of course, costs more than it should.
What The Heck?
Things improved once I got home. But then infection would return and bubble-up to the surface of my skin where I was sutured together. I had to back into the hospital a couple more times to get the wounds surgically flushed out.
Infection. Bloody infection! I went sceptic again and had to go back into the hospital. A couple more weeks recovering and then back home.
Once things settled down, I started working with a prosthetist. He built a fancy artificial leg for me. He had me start using it in his office to start getting used to it. Once the doctors cleared me, I was able to start going to physical therapy where they would really teach me how to walk again.
Physical therapy is hard. But, when I started, I committed to do better than anyone who had ever gone before me. I gave it my all and it quickly started to show. Soon, I was able to walk using my leg and a pair of crutches outside, in the grass, and across and up and down hills.
Just when things were going well, infection would take over again and I would have to go back into the hospital and then wait for my wounds to heal before getting back onto my new leg. It totally slowed down my progress. In fact, I am just coming back from having a wound cleaned out. It has been seven weeks already since they did the surgery. Seven long weeks of no therapy. Seven weeks of not using my new leg. I see the doctor soon and she’ll tell me how much longer before I’m cleared for therapy.
Total time in the hospital now since the original surgery: About four and a half months… and I’m still unemployed (unemployable?) and on COBRA, and I have deductibles and a mortgage. Ouch.
A New Normal
I expect to be back on my leg in a few weeks, perhaps two or three. I’m itching. I can’t wait to get back into the groove of learning to walk. I was on the precipice of not using crutches to walk before my last surgery, but now I have been significantly set back. It is time for me to get back to normal, my new normal.
With Your Help
To get more of my mobility back I need to get a motorized scooter. Then I’ll be able to go places and do things that I currently can’t. Every small donation will go a long way toward helping me afford buying one that I otherwise could never afford.
Thanks for taking the time to read my story. Thanks for your generosity!
I need to raise some money before the year ends. In fact, I need to raise about $26,000... and I'll tell you why:
I have been working really hard with my prosthetist and physical therapists, learning how to improve my walking. Things have been going well, so they say, though it is still very hard, and I tire easily.
A strange twist of events. About 2 years ago, I purchased a special set of forearm crutches, SideStix. They have been a godsend. They are custom built using carbon fiber and milled aluminum and are very light. They even have shock absorbers and rotating feet, which are saving my shoulders.
Anyway, the company publishes an online blog containing stories of some of their clients. Recently, one of their client stories was about a guy who has used the same type of crutches for years and how he absolutely loved them. But the fascinating part of the story was that this chap is a "prosthetic consultant." And it hit me like a bolt of lightning: my prosthetist and I are looking for a consultant who can help us come up with the best configuration for my prosthetic leg... especially as he and I have been spit balling the setup for a couple of years; neither of us has any experience about dealing with hemipelvectomy patients.
Long story short, I asked to be connected with this guy, which the crutch company was kind enough to do. I talked with him for a good long while, sent him pictures of my leg setup, and what kind of goals I have for using it. In the end, what he said was that I need to connect with one of his friends, a gentleman who had the prosthetic contract at Walter Reed hospital, to which wounded soldiers go. This gentleman has had the opportunity to work with over 200 cases of people with hemipelvectomies, just like mine! 200 cases!!!
I took the drive to see him. He took a look at my leg setup and said, "this is all wrong!" In short, I need to get a new setup, starting with a new socket, adding the latest generation knee and ankle, and some other nifty parts. But then came the hammer: the price tag is over $100,000.00! Problem is, this guy's practice is out of network for my insurance company, and they don't really want to pay for it, as they think my current leg is perfectly workable and I shouldn't need anything that fancy... darn insurance companies!
In the end, the new prosthetist is willing to work with me. He is willing to use all the current parts I have, but we need to make a new, special custom socket. But the socket will cost about $26,000. The insurance company may pay a portion of this cost, but I have to bear the lion's share. The prosthetist said that with this socket, I wouldn't need to have all the extraneous straps I currently have just to keep my leg attached to my body. He said that everything begins with the socket, and that it is the most vital part of the setup; if we get the socket right, the leg will work better, regardless of the rest of the parts... which we can always add later.
I left the meeting ecstatic. I've been dreaming about a new socket ever since (and the rest of a new leg too, should I ever be able to afford it)! Now, I am on the cusp. I need to raise several thousand dollars and I'll be able to improve my mobility a lot!
I've saved a few thousand dollars, but I am far short of what I need to bring to the table. This is where I need your help. If you are in the giving mood, please donate whatever you can. If enough people donate, I'll be able to get the new socket this year. If even more people donate, perhaps I can afford some of the other components of a modern leg too.
In the end, I thank you for your consideration of my situation. I am eternally grateful for the kindness of people like you. Without you I have no idea how I'd be able to get by; your donations make all the difference!
Croquet. This ain't your typical backyard croquet setup. This, my friends, is a championship-grade pitch, with real mallets, balls, and wickets. We were taught by some friends who have access to the place. I never thought I'd ever be doing anything like this! Together with my improving golf game, perhaps I can someday soon return to sport...
Next: Skiing!
Physical therapy is HARD! No two ways about it. If it weren't for the support of some excellent therapists, I would not be able to get around as well as I can, though I've got a long way to go.
I tried my hand at the driving range. I used to play golf, lo many years ago. When I lost my leg, I thought I'd never do that again. However, at the encouragement of my wife and my prosthetist, I went. If you look closely, you can see that I hit my 7-iron straight, about 150 yards. This is almost better than before I lost my leg :). Had I known how good I might have been, perhaps... Well, you'd never wish that on anyone!
This summer I headed for the beach. The first time in two years! Man, what a relief, to be out in the sun and in the sand. Of course, it was a lot harder than I thought, but it was well worth it. Thanks be to my SideStix crutches and their "sand baskets." Those things kept me from sinking into the sand, falling over, and creating a spectacle of myself. Thankfully, I survived. I've been back to the beach several times since. Huzzah!
Back in December I had to go in for yet another surgery to clean out a wound that had erupted along my original surgery suture line. It left a hole about the size of a golf ball. To close it all up, the surgeon put a wound vacuum on it, which puts negative pressure inside the wound, sucking all the bad stuff out and promoting the filling with good, new tissue. The vacuum stayed on about three months until it healed enough for me to return to therapy. Quite a setback in my healing process and therapy work. I came back with poor form and less stamina.
Then, out of the blue, another wound recently broke open, in almost the exact same spot. This time, the hole was about the size of a chickpea. Rather than opting for more surgery, we decided all we would need to do is pack it with gauze and tape it down really well. Over time, said the surgeon, this new wound would also fill in and heal over. But this time, I didn't have to stay away from my therapy. Now it has almost completely healed. Yay.
Here are some recent videos of me walking now that I am back to my therapy.
An important update! I was just contacted by a philanthropist organization. They want to sponsor a challenge grant: if we can raise $2,000 they are willing to match your contributions and bring us that much closer to my goal!
This is extremely exciting news. I am so grateful for their challenge and for contribution, no matter big or small you are able to contribute... every little bit help.
Thank you so much for your support.
Recently, I was interviewed as part of a podcast so they could hear my story. You can get it at Apple Podcasts:
https://podcasts.apple.com/us/podcast/kris-kristensen-9-months-with-my-new-leg-and-an-mba-in-life/id1348128086?i=1000542529688
So, I used to play golf, a lot of golf. When I was in college, I wasted a lot of time and money playing the game. In fact, I was late to a chemistry final exam because I hadn't finished the back 9!
This past summer (2021), I was invited by my prosthetist to attend a golf clinic for amputees. After a couple of instructions, I got to hit balls again. This was something I thought I'd never be able to do again for the remainder of my days. I was so thrilled that I could do this that I cried! Perhaps this coming summer I'll be able to do more. I actually look forward to exploring the possibility of trying my hand at skiing next winter. We'll see.
After a while, once you get the hang of how the leg works, it is time to start trying to master the stairs. This video was taken about 3 months into physical therapy. I continue to improve every day.
After you get the basics of walking on a prosthesis, you must learn how to navigate real life... including obstacles. Here I am trying to navigate the slalom course. How appropriate given that the Winter Olympics are going on right now.
Learning how to sit again. Believe it or not, it is not so easy to sit with a prosthesis. Here I am learning how to thrust, bend, and sit.
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Thinking of you and your family, Kris-I hope you get everything you need to live your best life
Jikk Myers
My mom didn’t want anything for Christmas & her bday she said to donate to you.
Kimberly Kee
We love you, Kris!
Valerie Corelli
Prayers and luck!
Frank Gabriele
The Faith Journey Sunday School Class of First Presbyterian Church, St. Petersburg, FL is grateful for this opportunity to help Kris. In some way, it is an answer to our prayers for how to help a friend of one of our members.
Anonymous
As a friend of Fran, who is a dear friend of Kris; I just wanted to help.
Beth Houghton
For the Phoenix to rise again.
Keith & Ellen Irwin
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Kristoffer Kristensen
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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