Rebuilding my foot and coping with AVN

By mid 2018 I was going strong. My kidney was doing fine, I had beaten cancer and now my new hip replacement was working like a dream. Things were once again feeling better and I was starting to formulate the earliest ideas for this blog. I got the idea after doing an interview with Steve Belcher on Sunday morning kidney and coffee talk. I basically did a 1 hour interview quickly laying out my story. There’s a link to that interview on the home page. But all in all things were looking up until around August that year I started feeling a very familiar feeling. That stabbing pain of AVN, this time in my left foot. I went about my life for a few months hoping things would maybe get better. Maybe I was overthinking it.

It really became apparent something was wrong by November that year. I was limping in pain still and it was only getting worse. I went to Las Vegas that December, bringing a cane I figured I could still get around alright. I just couldn’t. Every night I’d have trouble sleeping with the pain. I was taking pain meds just to sleep and couldn’t even see everything I wanted to without being in constant pain. When I got back I decided enough was enough and as much as I wanted to avoid it, I knew I’d need to see an orthopedic surgeon again. Dr Akhtar couldn’t see me for this issue since he only did shoulders and hips and knees. I’d have to go to a different specialist. Luckily my dad had a good Dr that did shoulder surgery on him. His name was Dr John Smoot, another orthopedic surgeon this time at Texas Orthopedics.

It was 2019. I scheduled an appointment to see my Rheumatologist to get some Xrays and make sure I needed to see another surgeon. He told me it looked like AVN again. I was was perplexed and surprised. AVN again? I had just had a total hip replacement literally a year before. How could I have it again in a different spot that quickly? Then the thought hit me, how do I know every joint in my body doesn’t have this? I felt defeated. Like this was maybe it, this was how my body would slowly just deteriorate from having these medications affect me over 30 years. It was upsetting news to hear. Especially after going though all the stuff I had dealt with the last 4 years. It was decided that I needed to see the surgeon to get it taken care of.

April rolled around. I had no idea at the time how much of a test that month would be for me. I made my appointment to see the surgeon on the 12th and already had an appointment to see my Oncologist the 9th. I thought to myself hey, just get this week over with and I’d be good until the surgery. Well the Oncologist appointment didn’t go well. I had my routine CT scan that month and they saw a growth in my lymph nodes, especially the side I had the lymphoma on. My whole body just felt cold once I heard that news. They wanted to do a lymph node biopsy to be sure it wasn’t the cancer coming back. I was scheduled for that biopsy the 15th, just 1 month after my 30th birthday. Immediately again I felt defeated. I cried the whole way home that day asking God and wondering why? Why again? Had I not been through enough the last few years? I already had AVN in my foot to deal with and now this? When will it end? Will it end? I was feeling lost again. I had to mentally prepare myself for another battle with lymphoma. I prayed and prayed so hard that it wasn’t back. After a day of feeling bad, I picked myself up and with the help of my friends and family pushed through those feelings and was ready for whatever came next.

I went to Texas Orthopedics for my first appointment with Dr Smoot. Erica went with me to help me and get my spirits up after a rough week which I really needed. It was a very nice building and they had amazing staff that were very helpful. I learned it was my navicular bone that goes across the top of the foot that had the AVN. The biggest culprit was prednisone but all the anti rejection meds were a factor. He informed me that my navicular bone would have to be removed because it was so damaged. They would do what they called an anchor and replace my navicular bone with a piece of bone they took out of my heel and graft it in place and hold it all together with 2 screws. It was set to be a decently invasive surgery, but one that would do the job and fix the issue. The only big question still lingering was my lymph nodes and seeing if I could go forward with the surgery. We wouldn’t know till after the biopsy.

April 15th came just 3 days later. I was extremely nervous but stayed positive. I knew God was with me and whatever would happen would happen. Erica took me up to the hospital and stayed by my side, comforting me till they took me back. I had never in my life had a surgical procedure while awake. This was a first and I was both nervous as hell but also equally interested. I’m one of those people who ask a dozen questions in the operating room so I made the best of the situation. They poked me a few times in the neck with lidocaine, definitely not a fun experience. After that they took a device that was essentially a big gauge needle that they would click like a pen and with every click they’d take a sample. I remember the guy telling me well, we have a good amount of samples but I’d really feel good if we could get a few more lower to be safe. I told him despite having to get stuck some more to go for it, I was already there and braced for it, lets do it. In all they took a little over a dozen samples to be safe. It wasn’t the worst experience, but hopefully I don’t have to go through it again. Now it was just time to pray and pray that the results were good.

The day after the Biopsy I had to drive back up to Texas orthopedics to get my MRI for my foot. That was no problem. By that Friday I was back at Dr Smoot’s office scheduling the surgery pending my biopsy results. If I was cancer free, I’d be having my foot fusion on April 29th. I’d know within 5 days how that biopsy went. April 23rd I went up to my Oncologist office to find out what the results were. As I pulled into the parking lot I sat for a moment to myself. I prayed that these results would be good. To let me have a moment to take care of my foot and not have 2 major things to deal with at once. I saw my Dr and she simply looked at me and said, you can breathe. Your lymph nodes have shrunk slightly between the CT scan and the biopsy. They were going to monitor me but it was looking like things were going to be okay. I had never felt so relieved. To be thinking for weeks about mentally prepping myself for that journey again was exhausting. Now with this amazing news I was able to get my foot fusion done and get started on my writing. I was blessed and able to continue on my journey without taking steps back. I said to myself, I can handle this, just please let me handle them one at a time without going backwards. Always forward.

On April 29th 2019 I had my foot fusion surgery. I’d by lying if I said I wasn’t nervous. Some would think after going through this many procedures you’d get used to it, and you do in some ways but the nervousness feelings don’t change much. I went in, got hooked up to the IV and went to sleep and let the Drs do their thing. When I woke up I didn’t feel any pain or anything because I had a nerve block put in. I was told everything went smoothly and they put me in a boot and sent me home. It was an adjustment unlike any other surgery I had in my life. I couldn’t walk and had to use a wheelchair to get around. I tried to use crutches but my balance was so bad and off I fell down and quit trying to use them. I had to build up my strength to transfer myself from the wheelchair to the bed or the toilet or shower. My dad built me a ramp to go outside if I wanted to so I had some accommodations to make it easier but I had a lot to adjust to at first. Just like with my hip replacement showering was hard to get up and out of and again just like with my hip I fell. Luckily I didn’t hurt myself too bad but emotionally I was having a rough time. It’s hard going through any of this stuff at any age, but having to cope with feeling weak and constantly defeated at 30 was very hard for me. I slowly did all I could to get in shape and beat this. I told myself every morning that I’d do all I could to get back to “normal” even if it was the hardest thing I had to do up to that point in life.

Things really got hard when I had to come off of my pain medication. I was put on Percocet which I never had been on till then. While it managed my pain well it would put me through an emotional roller coaster and when I had to ween myself off of it I had withdrawal symptoms. I felt so sick, I was throwing up, running fever and felt so weak. It was just another thing that made recovery tough but after a few days I was over it. Slowly but surely I started recovering. More and more each day till I went with my Dad to some Drag Races. I had my wheelchair but couldn’t really use it without having to use my foot to get around a little. At first I wasn’t sure because I hadn’t used my foot any. But it was July and I needed to start therapy later that week anyway so I figured why not. It was a strange sensation at first, like a million ants crawling through my foot and leg with each step. But slowly, carefully I was walking again. I was blown away. By the end of the weekend I was walking around with my boot on. My friends and family were amazed at my progress. They’d even say damn man, you’re already getting around that was fast! I’d always tell them, when you have as many things knocking you down as me, you’ll do all you can to get back to normal quick.

Months kept going by and I got stronger and better. By September I had recovered fully and had my follow up. Things looked great I just have to be sure not to put too much strain on that foot. As the year winded down I looked back and reflected on the last 5 years. So many medical procedures, emotions, thoughts ran through my head. I was blessed but I was stressed. I kept having anxiety attacks and feelings of dread all the time. I loved life and was positive overall. Thankful to have survived and gotten through all these trials. Yet I’d have insomnia, nightmares, feeling nervous for no reason. I didn’t know what was up, was it just more depression or anxiety than usual? Everything was fine so why couldn’t I relax? I decided I needed to see a Psychiatrist to figure this all out. December 16th I found myself a good one. And from that date forward, a better, stronger, more complete version of myself emerged. But it wouldn’t happen without having to revisit the darkest, most painful and scary moments of my life. The final page in my story, next time.