Mayo Clinic Day ? : Almost Done
I have received so much love and kind words since I began writing about my journey to the Mayo Clinic. I’m moved by the outpouring.
I realize that once I start the story, everyone wants to hear the ending. You don’t run the 26 miles only to stop on the last .2 mile.
Forgive me, I’m not feeling well enough to put it all into words. But hang with me, I will finish! Give me some time to sleep and feel better.
More later.
Mayo Clinic Day 5: We Beat Mabel
Today was oddly funny.
We didn’t see any doctors. We sat in the waiting room from 7am to 11am. Then 12pm-3pm. Talk about a vacuum of time. Maybe this is why:
We left the room at 7am. After a week of little sleep, we were dragging. As we sluggishly approached the elevator, we see a little old lady getting in ahead of us. She sees us walking faster to catch it. She holds the door for us. As Kim maneuvers the wheelchair in the door, another nice old couple moves to the side to make room for us young-ins. Kim says, “15 please”. It seems we were all headed to the same floor.
Once we hit the 15th floor we were off. Kim allowed all the older people off the elevator before she pushed me off. The old couple and the old lady were walking toward the same desk where we were headed.
As I mentioned yesterday, we were taking advantage of a Mayo practice called “checking”–which means you get put on a list in first come first serve order, and see a doctor if someone cancels last minute or is a no-show. This means we HAVE to be first in line. Especially for immunology. With only a few doctors seeing patients, the likelihood of getting in is very low. If you aren’t first, you wait in vain.
Seeing the old couple and the little old lady heading to the immunology desk, Kim and I looked at each other and knew what we had to do. Kim begins speed walking (Note: Kim recently finished a half marathon in 2hours and 30 minutes by speed walking). I’m saying “Hurry, take the quick right and beat them around the corner.” We edge them out and get first in line. While laughing, I said to Kim, “I don’t even feel bad.” As the little old lady walks up behind us, Kim laughs, “I do”.
We are first on the list. Mabel checks in behind us. Is it karma we didn’t get called today?
Mayo Clinic Day 4: Waiting
This morning I had an appointment with the Rheumatology department. I saw a resident who seemed to think quite highly of himself as he introduced himself: “I’m a SENIOR resident…” The way he asked leading questions proved my theory. At the end of his questioning period, he said there was no correlation with my positive ANA and any connective tissue disease. I breathed a sigh of relief. I don’t have lupus. The attending came in and followed up. He decided to test me for a couple of other disorders based on two small red spots on the inside of my hand. Blood work pending. He also said that my ANA could be positive due to the auto immune thyroid disease they found earlier this week. The attending asked me if I would be interested in participating in a study regarding patients with positive ANAs who go on to develop connective tissue diseases later in life. I agreed. They just draw a little blood and test my DNA for clues to my future health. I appreciated this attending. He was friendly, thorough, and humble (as opposed to the resident I’d seen earlier).
After Rheum, I went to get my blood drawn: The two diagnostics the Rheum physician ordered, as well as the blood for the two research studies I agreed to.
Immunology is the last specialist I need to see. My appointment is not until Monday. We went to wait to see if we could get in early. This process is known around the Clinic as “checking”. If someone cancels last minute or is a no show to their appointment they pick people that are waiting in the order you “checked” in. We waited until 2pm today until they sent us away.
Came back to the room and crashed. (Crashed right after a mini breakdown). Still frustrated the nerve block didn’t work. Still frustrated I don’t have answers to my back pain that has been plaguing me since November.
Need to look on the bright side: As mentioned before, they discovered an auto immune thyroid disease that will be of benefit for me to know earlier rather than later–before my thyroid function decreases to dangerous levels. They have discovered a severe Vitamin D deficiency which will need to not only be replaced, but also investigated further to find the reason for the problem. Immuno will undoubtedly check for more immune deficiency problems further than the one I’ve already been diagnosed with. This will surely be helpful.
I hope to get back in to Dr. Hurt (the best internist I’ve ever seen) this week. Need to get the results to my thyroid ultrasound. Also need to address the back pain. If the nerve block didn’t work and the EMG was normal, we need to look for other reasons for the severe pain.
I am still in pain from yesterday’s needle fest here at Mayo. I hope tomorrow brings more hope than today.
Mayo Clinic Day 3: Pain
I had a rough day today. Excuse the short post.
EMG in the morning–where they basically stick needles in your muscles. They must have hit the spot as I have been in awful pain and spasms ever since. The doctor said everything looked normal. No nerve damage.
Next, I had an appointment with an anesthesiologist to help with the pain. She did a nerve block to the nerve roots in the area where my pain is–more needles in the back. More pain despite the local anesthetic. The block should have worked within 30-45 minutes. I was really thinking it was going to work. So that being said, I am not only in severe pain tonight, but also my spirits are down.
The nerve block was as much a diagnostic tool, as it was a pain relief procedure. That meaning, it is possible the reason for my pain is not what we have been thinking. And so we go on…
Tomorrow begins at 0800am with Rheumatology. We will sit and wait to get into Immunology early after that.
Frustrated. In pain. Tired.
Tonight, I’m trying to remember the hope I experienced yesterday.
Mayo Clinic Day 2: Ridiculous Radiculopathy
Day 2 of my week(s?) as a patient at Mayo Clinic is over.
It has been a long day to say the least. I’ll elaborate:
1. Physical Medicine- 07:00am. Pretty long, and unsuccessful visit early in the morning. I say unsuccessful because they pretty much ruled out anything physical causing my symptoms. For instance, there are no bones or muscles that are encroaching on a nerve. Nice doctors (we saw a resident and a MD), but they signed off my case and sent me on to my further appointments.
2. Sleep Medicine- 0900am. This appointment provided our comedic relief for the morning: the doctor asks “How many pillows do you use at night?” The night we arrived at the Marriott, we started hoarding pillows. Right now, as I type, i’m using 7. My friends also laughed at the fact that I took 2 to 3 hour naps every afternoon in high school and college. What can I say, I’m a sleeper! Either way, the doctor said they can’t test me for any underlying sleep disorders because of all of the medications I am taking. Nice doctor, but she signed off my case and sent me on to my next appointment.
3. Neurology- 1100am. Quick and easy. You may have an idiopathic radiculopathy. Those are gibberish words to those of you not in the medical field. Let me break it down: “You have pain from an unknown cause.” Excuse my sarcasm, thank you, THATS WHY I CAME HERE.
A little frustrated with the last appointment, we took a break to have lunch.
4. Internal Medicine- 12:45am. Back to the best doctor I’ve ever seen, Dr. Hurt. Went through consult by consult and described exactly what they came up with. He went through each lab, normal and abnormal. Finding further complications in my lab work, he ordered an ultrasound, more lab work, and a consultation with Rheumatology. He spent an hour with us. Listening. Answering every question that me and my entourage could come up with. After shaking our hands, he says, “If you have any more questions, you all know where I hang out”. Finally, a deep breath. I feel safe in his care. I know he will not leave any stone unturned.
5. Ultrasound- 1430pm. Despite the fact that my gown was missing a front tie and I had to awkwardly wrap it around my body, this test was a piece of cake. Waiting for the results is a different story. But all in all, there was a friendly technician, warm gel, and a pillow under my knees for comfort. Two thumbs up on the process.
6. Venipuncture- 1515pm. More blood work!
My patient experience today was overall very good. Excellent staff. The system is like a well oiled machine–and it works beautifully.
The excellent physicians believe they may have uncovered the reason for a lot of my symptoms. They may even be able to get rid of some or most of my symptoms.
More importantly, I lay my head on the pillow tonight with hope that they will give me answers before I leave.
Mayo Clinic Day 1: Initial Consultations
I had to check in at 7am. The system ran beautifully. After the nurse ran my vitals and took my weight, we were given a beeper. When that goes off, they would bring me back to see the doctor. Because I was an add on for the day, we had to wait until a doctor had a cancellation. Less than an hour later, the beeper sounded.
I must say I was nervous walking back to the consultation room.
My initial consultation was with an internist: Dr. Hurt, ironically. I couldn’t help but wonder if he will be the one to fix MY hurts. He went through my symptoms systematically and diligently. No stone was left unturned. I finally was in front of a physician who did not rush. He took me seriously. He told me he would look for the Zebra that is causing my sickness. A breath of fresh air.
Music to my ears during the consultation: “I will own your case”. Not once in 3 months have I heard those words.
After the physical exam, Dr. Hurt sat down with me and my friends and explained what tests he was going to run and what specialists he wanted me to see.
In the afternoon, I saw an infectious disease specialist. He did not seem to think that my illness is connected to anything infectious. The big thing he said was that he did not think it was postherpatic neuralgia–which was the best guess of all my physicians at home.
To be honest, I was pretty upset after this consultation. I wish he had done more testing. But my friends reminded me that I need to trust his experience and intuition that what I am experiencing is not related to an infectious process. I do feel the need to bring up my concerns about the consultation when I see Dr. Hurt again on Monday.
Monday will be busy:
Physical Medicine. Sleep Medicine. Internist (Dr. Hurt). Neurology. Possibly Immunology–if I can be an add on.
Right now I’m in my hotel room. I’m very tired even though I’ve only been up a couple of hours. I’ll drift off to sleep to the sight of Jeremy Lin playing incredible basketball.
My Trip to the Mayo Clinic: Travel Experiences
Before I left for the Mayo Clinic I made sure I was hydrated:
IV fluids are the best! A little NS and LR and I was on my way!
My flight schedule was nothing less than intimidating:
Norfolk –> Detroit –> Minneapolis –> Rochester
It may not look terrible to most, but to me it felt like running a marathon without training. Here I am at the airport:
My travel buddy and I had a few hurdles to overcome on the way. Despite the broken shoe, late wheelchair, and a shirt that perpetually set off the metal detector, we made it the full 26.2 and arrived at the Mayo Clinic late afternoon today.
Tomorrow my day starts early. Check in at 7am.
Tomorrow will be a long day full of blood work, tests, and doctors; I sure hope it holds answers.
