Report from St. Louis

I never thought I would say this, but I almost regret not being more of a baseball fan. To be in St. Louis during the World Series was crazy! Everyone wearing white and red, that silly looking cardinal everywhere, the red and white balloon arch at the airport, and the energy that was present on Friday morning after the Cardinals come from behind win on Thursday night was really fun! I am very happy for all of my new friends in St. Louis...congratulations on winning the World Series!!! :-)
Robyn and I arrived on Tuesday and settled into our hotel. The Parwkway Hotel is located right in the middle of the Wash U medical campus and it's where many of the out of town patients stay when being treated there. There is a walkway right from the hotel to the hospitals and clinics. You don't even have to go outside! The weather on Tuesday was gorgeous, however, and after one last time spent in the gym before my forced downtime, Robyn and I walked to a really great restaurant. The temps were in the upper 70's and we ate outside. Nice!! I stuffed myself since it was going to be a long time before I could eat again. For me, two hours is a long time!!
My angio was originally scheduled at 7 am, but they called to tell me I got bumped to 9:30. So of course, I went to the gym again! ;-) When we got to the hospital, I was told there was an emergency, so I would have to wait even longer. I was ready to eat the sheets!! ;-) I did go with Robyn to the cafeteria while we were waiting as I wanted to make sure she ate. It really wasn't too bad, luckily the smell in the cafeteria put me off, and truthfully, I was a bit nervous. Robyn did get a fabulous picture of me in my hospital garb with my pink Ironman hoodie. Stylin!!
The procedure took almost two hours. I had asked them to go light on the sedation because I HATE it and how those drugs make me feel. Apparently I may have been annoying them a little with all of my blabbing. I couldn't help it, one of the nurses was a triathlete and was selling her tri bike!!! Finally she said, "Shhh, I need to keep you quiet, we can talk after!" Then suddenly I got a migraine aura, so they snowed me....UGH!! :-(
When I woke up from my fuzziness, they were holding pressure on the artery, and I made sure to stay quiet to avoid a repeat of the last time when I was clamped to the table to stop the bleeding. Nothing like that this time, that guy was STRONG....OUCH!! One of the neurologists came in and and told me my results were, "interesting". There is a 13x7x5 mm AVM on my spinal cord at the C4 level. Many spinal cord avm's which are pretty rare, are in the dura or on the outside of the cord. Mine involves the cord itself, and they see this very rarely, even in HHT patients. So, what to do? As I suspected....nothing. It's to risky to try and embolize it, and certainly surgery is not an option. There are 3 ways this can cause me problems. Bleeding, pressure, and the avm messing with the circulation in that area and decreasing the blood supply to the cord. They tell me the risk of bleeding is 2-4%, but the risk of motor impairment with an embolization is 20%. Easy decision for me...leave it alone!! There are a few vague symptoms that may or may not have anything to do with it. I certainly have good motor function! The good news is that they only see one other small CAVM, about 6mm, near where the other one that ruptured was. This does not show up easily on an MRI, so they feel the pressure is low in that one and we do not need to treat it. YAY!!
After many hours flat on my back and battling nausea and back pain, I was finally allowed to leave at about 8 pm. At that point I just wanted to get up and walk. But they wouldn't let me and had to wait for the long wheelchair ride back to the hotel. I felt like utter crap, but we did go to the Applebees...also connected to the hotel, and got something to eat. I felt better after that!
The next morning Robyn had a bubble echo, chest CT, pulmonary function test, and an blood gas scheduled. Then we both saw Dr. Chakanala, the pulmonologist and one of the directors for the HHT center. Poor Robyn, she immediately got a migraine after sitting up after her bubble echo. :-( This also happened with me and my Mom after our bubble echo's. A bubble echo is a test they do to see if you have any shunting in your lungs. It's a little complicated, but they inject bubbles into your vein, ( a very small amount!), and at the same time they are doing an echocardiogram of your heart to see if the bubbles pass through it. It is not normal to have the bubbles pass through. When you have pulmonary avm's, you will see bubbles pass through after about 3-5 heartbeats. Robyn's was positive, but this was not surprising since this is the same result we got here in Madison. But when you sit up, the bubbles irritate the the blood vessels in your head and you can get a migraine.
The avm's in Robyn's lungs are so small that they do not show up on her chest CT. So again, nothing to be done but monitor. Thankfully her blood gasses and PFT's are normal!
After our appointments, Robyn went right to bed. I left the room so I wouldn't bother her, and just went walking. I still felt off and sore, but I just needed to move and get some fresh air and try to absorb all that was happening. I walked for hours and discovered some really cool stores and really interesting local neighborhoods. I knew I was supposed to lie low, but I just couldn't help it. I was getting pissed and the pity party members were knocking on the door. I wanted to keep moving.
Robyn felt better after sleeping a few hours and was able to eat a sandwich. We watched the food channel...again....and that sassy pants has created a food channel addict. This may be the final push for us to get a dish so we can finally get cable channels!
Yesterday morning, we had our final visit with the neurologist, Dr Zipfel. The vascular team had met that morning, and agreed that for me, there's really nothing to do unless other symptoms develop. Again, it's just not worth the risk. I never even asked about restrictions. Don't ask...don't tell. They know I'm a triathlete, I've been told in the past about the risks, especially while swimming. I feel no different about it today that I did yesterday, except to feel even more defiant and compelled to push it even harder! Like I said, I'm just feeling a little pissed, and I am growling like a mamma bear.
Here's the mamma bear part. Robyn has two AVM's in her head, one in particular that shows up very easily on the MRI. It is this one they are worried about, so they are suggesting the Gamma Knife procedure for her. Surgery, thankfully, is not an option. Gamma knife surgery is where they shoot a beam of radiation directly into the AVM in order to cauterize it. It's a day procedure, but they have to put her is that halo that's screwed into the skull to stabilize the head. She will also be receiving many fun drugs for that! It takes about 2-3 years for the AVM to die off, so she will be monitored yearly. We are planning to go back down, probably next June after she and I are done with school. We are just absorbing this news, and needless to say, Robyn is pretty worried about it. Other than the anger I feel at her having to go through this, I am happy that at least they are able to offer us SOMETHING that we can do! Because she is so young, and has many years ahead of her, they feel she is a good candidate for this procedure. Our hope too, is that it will help lessen the number and severity of her migraines.
So we return from our "HHT girls trip" with many mixed feelings, and LOTS of fatigue! But we can't say enough good things about how we were treated and the great care we received from EVERYONE! It was amazing, and became almost comical the number of times complete strangers would ask us if we needed any help. We apparently walk around constantly with that, "I'm lost" look on our faces! ;-) ALL...well, there were one or two...but MOSTLY all of the medical personnel were amazing and attentive. One of the nurses during my recovery brought over a recliner for Robyn and gave HER warm blankets too!! There were so many little things, too many to count, that made this less than fun experience so much better than it could have been. I can never thank them enough.
To my friends who were texting me and posting well-wishes on FB, I hope you understand how much that really does help. Thank you ALL! :-)
To my beautiful, wonderful, strong daughter...there will be more tears, but there will also be laughter. (I will always remember the speech from the flight attendant from last night, and that adorable little girl singing the Barney song, and that same flight attendant offering up her fries as the in flight snack!! ;-)) And we will always have each other. I love you so much!
Enjoy this day!