Tuesday, May 10, 2011

Mayo Clinic

After two months of no answers, I received a diagnosis. I have had an urgent care visit, an ER visit, and hospital appointments with two different cardio-vascular surgeons. I have had an x-ray, ultrasounds, a CT scan, and lastly, a lymphoscintography test. Its been quite the ride. And it all comes down to this: I have Lymphedema.

I have had swelling in my left foot since March 11th with no relief in sight. I rushed off to the Urgent Care 5 days after my symptoms began. Being quite confident in what she believed it to be, my doctor immediately sent me over to the hospital to receive an ultrasound. At that point, it was believed to be a bloodclot. Being sent to the hospital was the longest ride I have ever had; it was the most anxious I have ever felt. My grandfather died of a bloodclot lodging in his lung in his 40's- I couldn't take my mind off of it. I finally got in to see the technician. She checked one area of my leg. "Good." She checked another. "Good." She check another. Silence. Fear then began to sweep through my mind. I am going to die. It sounds so dramatic reflecting back on that moment, but it was the scariest moment I have ever experienced. The technician finally finished. "Alright, everything looks clear." Breathe. After uttering repeated prayers, joy again returned. Thankfully my best friend was there that night to encourage me and stand by my side, Thanks Lindsay.

I then began a series of appointments and testing with no answers. I finally saw a cardiovascular surgeon at Park Nicollet Methodist. He sent me in for one last ultrasound that was once again clear. In parting, he mentioned that I might have lymphedema. He said not to worry, that it would just be a nuisance especially for a 23 year-old and I may have problems with swelling when I become pregnant and that was it. This was the first I had heard of it, and didn't think much of it. He ordered a prescription for compression socks, said to make an appointment in two weeks if my condition didn't improve, and sent me off. Three weeks later I found myself at the ER at Mayo Clinic.

Before my appointment, I decided to research lymphedema. I had no idea what it was. Have you ever heard of elephantitis? How about the elephant man? He had a severe, untreated case of lymphedema. Terrifying. I had no idea this could actually happen. No Cure. The pictures were even scarier. But my symptoms aren't this bad...

My mom is a medical secretary for a few doctors that work in the Mayo Clinic ER. There was one specific doctor that was following my case. He agreed to see me. He ordered some blood work, he was convinced I had DVT in the lower part of leg (bloodclots). These would be less serious and would just need to be monitered. My bloodwork came back negative. Still not convinced, he referred me to a cardiovascular specialist at Mayo. In two weeks I would be able to get in.

It had now been 8 weeks of slippers, uncertainty, and swelling. I prayed the doctor would be able to look at my leg and just know what was wrong. He did and he was confident- finally someone was. He was still going to order a test to confirm, but he just knew. Answered prayer. We talked as though it was already confirmed. "Are you worried about self-image with the swelling?" I was having trouble blinking back my tears. "A little..."

I spent that night beside myself. There was so much uncertainty, so many questions. They ran through my head a million miles a minute. Finally morning came.

I walked into my testing not knowing what to expect. I laid on the paper covered table and glanced at the counter with the cup of syringes. He explained what he was going to do: inject radio-active tracer between my big toe and the next toe over. On both feet. I laughed out loud. I passionately hate needles. The other technician said "This will hurt a lot, the tracer burns when being injected." Great. Thanks for the words of encouragement. She then went on to hold down my leg. They did my right leg first. Pin prick, burn, okay not so bad. They then did the left leg, my swollen side. That was a terrible moment. Thanks to that, I felt real pain.

I then sat still for an hour and half while a machine took pictures of the tracer moving up my lymph system. I laid there stiff. Thoughts were running through my head. Yesterday the doctor had said "Its not like we are saying you can never be pregnant..." What will my leg look like then? What if its both? Will I be able to ever be pregnant? If I do, will this be passed on to my children? Will the swelling ever go away? Can I ever wear normal shoes? Will I ever feel or look normal again... After finishing the first portion of my test, I was so distracted I forgot to push the button on the elevator. I had to come back twice that day for return scans only lasting 15 minutes each.

Immediately following my last scan, I went in to see a lymphedema therapist. Thankfully, she was one of the sweetest, most encouraging ladies I have ever met. She saw and she knew. At this point, I was wondering why I didn't go to Mayo in the first place. She showed me a massage technique to reverse my changing skin texture (like wrinkles) and fit me for a wrapping boot. She showed me how to wrap. She got me an even better compression sock. "Wrap day and night for two weeks and the swelling should go down, yours will be easily controlled." Best news yet. "I have lymphedema and I have been able to control it and have no need to wear support garments" Also great news. I then finished my day with a follow up appointment with my doctor.

"It's confirmed, you have stage 1 lymphedema". Okay now what... Between listening to my therapist and the Doctor, I have a new view, Everything's going to be okay. One of my favorite lines from that appointment was "So if you are out mountain biking and you get a scratch on your leg..." Whoa. Wait. Mountain Biking? MOUNTAIN BIKING? I am going to be normal.

Lymphedema is a chronic condition that may always stick around or it may go down and never show up again. There is no rhyme, no reason. There is no reason why mine decided to show. I had no indicators for it beside my symptoms. Normally, it is hereditary or from injury or following surgery. I take from it that my "channels" in my lymph system weren't fully developed at birth. The lymph fluid has a difficult time mkaing it through my leg and gets "stuck", hence the swelling. I'm just thankful there is treatment. But since it is sticking around forever, I have to be careful. No cuts to that leg due to risk of infection, I constantly have to moisturize, and will be stuck wearing a compression garment the rest of my life. Oh yea, and there will be swelling.

I am thankful for my situation. Sure, at times I will be self-conscious, but I am thankful its nothing worse. I am so thankful for everyone that supported me and prayed for me. This process would have been a lot more difficult without you.

1 Thessalonians 5:16-18.Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
Thank you for always being faithful and never leaving my side. 


1 comment:

  1. I'm sorry you have to deal with that. It can't be easy. I had my baby at Mayo, I love that place :)