Eric and I went up to Chicago this past Monday to meet with Dr Rich. It was the first time we had both left Ashleigh. That was a little nerve racking and sad! I knew she was in good hands though because she was staying with my parents. After checking into the hotel we went down to the Navy Pier which was about a 15 minute walk from the hotel. It was a cool place but would be better to visit when it's warmer - not when it is 32 degrees and windy! We had dinner at Harry Carey's which was very good then went back and hung out at the hotel.
Tuesday morning we got up super early to start our day at the University of Chicago Hospital. The first test I was having done was an MRI - boy was that a disaster! They brought me back around 8:15 (my appointment was scheduled at 9:00) and told Eric I would be gone for a couple hours. They said the prep would take a little while and the scan about an hour. I was not looking forward to lying in a tube for an hour! Anyway they brought me back and started an IV. That was the extent of the "prep" then I waited around until 9:30 when they finally brought me into the MRI. I felt like I was in that thing forever and come to find out I was - 2 hours!! I don't know what the deal was but I was not pleased. A few times I was ready to tell them to shove it and get me the hell out of that machine! I was starving because they said I couldn't eat before the test and I hadn't had any coffee so between the lack of caffiene and the super loud machine my head was pounding. Of course Eric was freaking out in the waiting room because I had been gone for three hours and no one was telling him what was going on. I was glad when that was over!
After that ordeal I went and had my echo which went smoothly. I finally got to eat some lunch and get some caffiene once that was done :) My appointment with the doctor was next on the list. We really liked him - he was very nice and down to earth. He said he hates PH and will keep fighting to find more treatments and a cure. He was the person who discovered that calcium channel blockers work for PH - 30 years ago! He said that he wants to do another cath and a calcium channel blocker challenge during that - he said he likes to use adenosine instead of nitric oxide. Based on that he would decide whether or not I should start CCB's. He asked if we could extend our stay and do it Thursday but we didn't think that would be possible so we decided we are going to go back. Now looking at how much it's going to cost to go back we should have stayed! He said that it's not an emergent thing. He said I look good - my physical exam is essentially normal. My echo hasn't changed since the previous one which is good and bad because that means my heart is still enlarged but at least it's not worse. He didn't tell me what my pressures were because he said they are too unreliable on the echo so he never looks at them! He encouraged me to do the pulmonary stress test because he said it gives them a lot of good information. I was very scared to do it because it is on a treadmill and I really didn't want to pass out! I agreed to do it in the end because I knew I could stop at any point. He said twenty minutes is the most they make you do. I stopped at 11 minutes. My heart rate was almost 160, I was sweaty and getting short of breath. My oxygen level never dropped below 98%. I probably could have gone a little longer but I was too nervous. The inclines kill me! I didn't get to see him again after that so I'm not sure what he makes of the results. They said I could call or email any questions and they will get back to me so I guess at some point I can do that!
After that very long day at the hospital we went to the Hard Rock Cafe for dinner and then walked around Michigan Ave. I didn't last too long because it was freezing and I just wanted to go back to the hotel and warm up! Wednesday morning we were up bright and early again and got everything ready to head home. The weather in Chicago was clear but it was stormy in Orlando. That flight was probably the scariest one I have ever been on! Turbulence usually doesn't bother me but it was really bad. At one point there was a really loud bang and the plane shook and there was burst of white light - the plane was hit by lightening!! It was crazy!! Once we finally landed I was never so happy to have my feet on the ground!
Ash did great with Grandma, Pa and Boomer! She wasn't as excited to see us as I thought she would be - I guess she was just too spoiled while we were gone!
I was supposed to have a follow up at the Mayo on Monday but I am postponing that until I get the cath done in Chicago. There is no point since I don't know what to do about the medications. We will just have to wait and see. I just hope we are doing the right thing - I don't want to burn any bridges! If only Dr Rich would move to Florida :)
Thanks again to everyone for all your positive thoughts and prayers!! They are really appreciated so please keep them coming!
