Welcome to my blog! I am excited to share what I hope will be inspiration, hope and kindness. There may even be a few tips and tricks on what I learned on a variety of topics.
Over the last 2 years I have been on an incredible medical journey. My blog is not intended to provide medical opinions or statistics; rather, it is to share my journey of how I have survived and maintained a positive outlook. The goal is to inspire YOU and maybe, just maybe, we can together inspire others, provide hope and spread a lot of kindness. Kindness always wins in my book.
My medical journey began 2 years ago today: 2 years, 19 surgeries, 16 blood transfusions, 2 PICC lines, 2 wound vacs, 1 bone growth stimulator and 20 hyperbaric oxygen chamber sessions. All from a broken leg. Well, sort of.
To share my story I need to go back to the beginning – 32 years ago. When I was a teenager, I was diagnosed with Ewing’s Sarcoma, a rare form of bone cancer. I was treated with chemo and radiation therapy. What I now realize is that I had “radical” radiation which caused a great deal of damage to my leg. I am not a doctor or nurse, although sometimes I do feel like I could play one on TV. I certainly know and understand much more of what has transpired since my days of treatment that first began 32 years ago.
On March 22, 2014, I was walking down stairs and heard a “pop” or “snap” and my leg went limp. It was such a bizarre feeling! My leg felt as though it wasn’t attached to my body, yet I felt this incredible pain in my femur and hip. After waiting 9 hours at my local hospital, my worst fear came true. I had fractured my femur, and it wasn’t pretty.
I first met with my local trauma surgeon, who wanted to operate immediately. But after I explained my history, he decided it was best that I go to Boston. As luck would have it, he knew my orthopedic surgeon there and preferred to send more complicated cases his way. So off I went on a 90-mile trip to Boston by ambulance.
Being in the ambulance and then seeing my surgeon again brought back so many memories. I was terrified! Boston always holds memories of my sickness, and here I was again. I was in pain, wondering what happened and how would we fix it?
My doctor explained that is was most likely one of two things, radiation induced sarcoma which comes on 30 years after having radiation (“OH MY I AM IN MY 30th YEAR” is what I was hearing inside my head), or it is simply a break from wear and tear on a fragile leg. “OK. Well, let’s find out!” I said. A biopsy revealed that it was a break from wear and tear and not cancer. PHEW!
I was relieved, grateful, and ready to move forward with the plan of putting in rods and screws into my leg, hoping it would heal. After a week I was able to go home. My daughter, who lives over 400 miles away, had flown in for the surgery and she was busting me out of the hospital! Life was good!
Shortly after returning home I developed pressure point infections on my foot and spent days in my local hospital on IV antibiotics. My foot went from red to black and when I was discharged, I went to my local podiatrist. He believed I had a blockage, and sent me to a local vascular surgeon. That doctor determined that I did indeed have a blockage; the blood was not adequately flowing to the foot. I needed surgery ASAP.
He indicated I needed an arterial bypass surgery, and then said he wasn’t even sure if I would survive the operation given the damage to my leg. Next thing I know, he was discussing amputation. WHAT?! I thought I had an infection and now this? This surgeon had no bedside manner, and even asked me why I hadn’t taken care of this? Gee, I guess because I clearly had no idea!
When I told him that I was going to get a second opinion, he replied by saying I didn’t have time for a second opinion. I immediately left his office, sat in the back seat of my car and had a meltdown. It was so confusing and overwhelming! Thankfully I have the most amazing daughter. She can always help me see the entire picture, and she can make me laugh in the most difficult situations. Julie is married to a neurosurgery resident. It helps that Ryan can discuss my medical issues in layman’s terms. More on them in future posts.
Thankfully I did get a second opinion, and from the most amazing vascular surgeon in Boston! Dr. Guzman was able to clear the blockage and get the blood flowing. Since meeting him, I have had several angioplasties and have two stents in my leg. We now know that I have peripheral vascular disease, and so I take blood thinners and aspirin daily.
Dr. Guzman is humble, kind, and truly cares about his patients. During my hospital stays, he is usually the first person I see in the morning (even before rounds begin), and is often the last person I see at the end of the day. He calls me when I am at home to check on me, always offering support and guidance. (I highly recommend Dr. Guzman if you need a vascular surgeon.)
The damage to my foot resulted in the Achilles’ tendon being exposed for 9 months, along with the bone. That led to osteomyelitis – an infection in the bone, resulting in my first PICC line – a Peripherally Inserted Center Catheter – which can be used to deliver antibiotics for a long period of time. Shortly after meeting with the infectious disease doctors who explained the PICC line, the nurse arrived to insert it. I was grateful that I didn’t have a lot of time to think about it as it seemed so scary, but fortunately it wasn’t that bad. Six weeks turned into 11 weeks of treatment, but we were able to clear the infection.
As luck would have it, the break failed to heal. On April 22, 2015, the femur collapsed and my hip fractured. Talk about discomfort! While I am in a constant state of discomfort, it has become my new normal and I don’t dwell on it. Eventually I will need a hip/joint replacement and a mega prosthesis of the femur but my foot needs to completely heal first before we can move forward.
My orthopedic surgeon introduced me to this amazing plastic surgeon. Dr. Iorio has had the daunting task of healing this foot, which is not an easy assignment! My doctors and I are doing everything we can to save my foot and leg. We have done a “flap,” a grafting procedure, and I’ve had hyperbaric oxygen chamber therapy.
The flap surgery was far more than I anticipated. After the initial 8 hour surgery, I needed emergency surgery later that evening. I had developed a hematoma. It is never a good sign when the resident requests that the chief resident come in late at night, while informing me that the attending physician is on his way back also.
My son-in-law was with me for the initial surgery, but I sent him back to my house to get some sleep. Shortly after that, things started going wrong and I remember calling Ryan to let him know I was going back into the OR. He said he would be there when I woke up, and I found myself wondering if I would see him again!
My plastic surgeon is a very relaxed, calm, and focused person, and I even asked him if we would see each other again. I was calm but scared! He said – in a very no big deal kind of way – “Of course! I’ll see you after surgery.” I am grateful to have him as my surgeon and appreciate the confidence he exudes and the compassion he demonstrates.
I had 12 blood transfusions during that hospital stay and it took every ounce of energy out of me. The PACU nurse–LeeAnn–was so kind, and my son-in-law was a huge comfort. I am forever grateful to them.
I needed emergency surgery on my foot on July 22, 2015, and additional surgeries after that. Through a combination of surgeries, wound vac, another PICC line, and hyperbaric oxygen therapy, the foot is almost healed! Hopefully I will be able to have the big surgery in a few months. Since March 2014, I haven’t walked on my leg (I get around on crutches) and I will need a great deal of physical therapy to learn how to walk again, but I look forward to the day when I can do so!
My life has been turned upside down since this started. I am now disabled and can’t work, which was very difficult to adjust to. More on this in a later blog. Through this entire experience I have learned valuable life lessons. People are kind. I am loved. Sometimes you have to ask for help even though it isn’t easy. No matter what the situation is, you can never give up.
What I found to be helpful is to think: “I can get through this, this surgery is only 3 hours out of my life, I can do it!” Or, “this hospital stay is only 10 days out of my life, I can do it!” And believe it or not, it works!
I hope you will follow me as I continue on this journey as I share with you what I have learned.
Inspiration. Hope. Kindness. That’s what this blog is all about.
How do you stay positive during difficult situations? Please share!
Until next time, be well and go out and do a random act of kindness.