Well, it has been about six weeks since my trip to the Mayo Clinic for answers. In my previous posts, I let you in on what the Mayo Clinic had come up with. That being said, I needed to get off most of the medications I was put on orginially and add a “miracle medication” that should help the pain.
I use quotations to highlight the fact that there is no miracle medication. In fact, it has not even touched my pain.
And I’ve grown more sick.
About two weeks ago I developed tachycardia. My resting heart rate was anywhere from 100-125. And at times reaching the 145 mark. This has resulted in multiple ER visits, more specialist appointments, and overall frustration for this patient.
Because of the tachycardia, I had to stop taking the ‘miracle medication” from the Mayo Clinic. In fact, the doctors suggest I get back on a medication that I spent 6 weeks weaning off of.
The irony in the situation is I am right back where I was 2 months ago– pre Mayo. I’m in pain. I have debilitating symptoms: orthostatic hypotension, tachycardia, and shortness of breath.
My wonderful cardiologist agreed to see me the day after I called him at his home number. Luckily, I know him well from my church. He agreed to help me and see me through to the end. I should have called him 5 months ago when this whole ordeal began. He believes the tachycardia is an autonomic dysfunction. He isn’t sure of the cause, but believes it has something to do with my autoimmune thyroid disease. I need to see an endocrinologist. The first available appointment is June 8. sigh. It is funny, after being sick for 5 months, there are STILL specialities I have not seen.
And so I wait. Take medicine. And attempt to manage my symptoms.
Though this is not the end of my health struggles, it is the end of my journey at Mayo Clinic. I can’t believe I spent two full weeks there! I saw more doctors and had more tests done in the two weeks than I had in three months at home. Mayo Clinic’s model of healthcare is amazing in concept, and perfect in execution. Their employees (including docs) are happy, thorough, and efficient. They do not stop until the last stone is uncovered.
I felt safe in the care of my internist at Mayo Clinic–if that makes any sense?
Remarkably, they did not even ask for a copay. Money is never mentioned which leaves the patient feeling comfortable that their health is what is important.
Even though my experience at Mayo was great, I did not receive all the answers I was looking for–which left me devastated to say the least. I’m trying to hold it together now and look at the good side. They did find a few things wrong which I never would have known otherwise. Vit D deficiency and an auto immune thyroid disease. They also discovered that a few of the medications I’m on are causing many of my symptoms. I’m on a weaning program now–which will take a couple of months. Basically, I’m undoing what the doctors did for me here. Then I will add a different medication which *fingers crossed* will help the pain. After ruling out some big things, the doctors can only tell me that the pain is either idiopathic or post viral. This unfortunately was my worst fear. That I would go there and not get an answer. Though I am very upset, I need to remember that everything happens for a reason. Hopefully their pain management plan will work.
I cannot thank everyone enough for their support during this time. I’ve received so much love over the past few months, and I’m grateful to each of you.
To my readers- Your comments, tweets, emails, and facebook posts encourage me to hang on. I cherish each and every one.
To my coworkers- You guys are amazing. Getting together and collecting Sick Hours for me is so difficult to do. Thank you for sacrificing your hours for me (they collected enough hours to cover a month of work)! I needed it desperately. You all are truly an answer to prayer.
To my Mayo traveling friends- Words can describe how much you mean to me. I couldn’t have done it without you. Thank you for your sacrifice for me.
WIth that I end my chronicling of my journey to Mayo. Thanks for joining me.
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.
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?
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.
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.