What FM Looks Like

Pretty, huh?

Fibrosing Mediastinitis article in Radiographics

Fibrosing Mediastinitis1 — RadioGraphics

Interesting article with pictures.

Facebook Forum

I'm finding more and more people with FM, especially on the Facebook forums:

http://www.facebook.com/topic.php?topic=11618&uid=35055997964#/group.php?gid=35055997964

Happy Happy Happy

By the time we got to the hospital my nervousness had faded to just wanting to get the whole ball rolling and get it over with.
Do you think this is enough armbands??


Finally they called me in for the prep. The nurse was great. She popped an 18 gauge into my hand without any problem. It hurt a bit, but only needing one stick was very nice. Then I went for my perfusion scan. I've been very happy with the care I've gotten from the staff at Sunrise Hospital.
Then back to the pre-op to await the cath lab. The anesthesiologist visited me and told him how I have ALWAYS gotten sick and vomited the next 12 hours with anesthesia. He was a great guy and said he'd do his best to keep me from getting sick. I had my doubts, but also my hopes. How great would it be to not be vomiting as soon as I woke up!

Dr.Rothman came in and gave us all a big hug. He's such a fantastic guy and he genuinely seemed happy to see us. He had been discussing my case at a conference the night before. He feels like the data he collected from this angiogram with me will establish a sort of guideline for interventions with people with fibrosing mediastinitis. He said the technique he uses is not new, but the application for my disease is new. "There's not many of you," he told me. Twenty physicians at this conference had never heard of my disease or interventions for it. There is very little data and everything is sort of an experiment. He said that my willingness will help other FM patients who would not otherwise be helped. How could I refuse? He has given me 10 productive years with his skills AND I would be helping others with this disease. He's so modest. He said that he is used to doing right heart caths to get to the pulmonary artery because he has done so many procedures on babies while most adult interventionalists are used to doing left heart caths for coronary artery disease. I never really understood why most cardiologists did not want to take on my case. Even getting the artery open a little more keeps the right heart from overworking, which was the main cause of my fatigue, he believes. It also helps me to not develop pulmonary hypertension. I have great pressure readings and clean coronary arteries, which is a huge plus. All in all, I'm going to be around for a loooooooooong time.

I woke up from the anesthesia and immediately noticed that I wasn't vomiting or even nauseated. I was, however, pretty cold! I remembered I had to keep my right leg straight. Someone had put me on a lovely fracture pan and I wondered how they knew I had to go to the bathroom. Later, Monica told me I had asked for it, but did not have any recollection. I kept asking Monica the same questions over and over for a while until I finally got my bearings.


Before the angioplasty the opening of my artery was 8mm, but a far cry from my last angioplasty which started out as 2.5mm. Today Dr. Rothman expanded my stents to 11.5mm with a 12mm balloon. He said the danger of rupturing an artery from the balloon is very slight because my artery has scar tissue built up around it where as a 'virgin' artery might rupture more readily. The material he squeezes away basically dies, but is not free floating so it won't cause a thrombus. One thing he did say was that if my chest pain continues I should consider that my lung itself may have scar tissue and will probably have to have a pulmonary function test. The good news is that I won't have to have an angiogram for probably another five years.

I counted every minute of the 6 hours I had to lie in bed. My nurse, Imelda, was excellent. Couldn't get anything past her. She took wonderful care of me. Finally at 8:15p she let me get up, ever so carefully then laughed at me. "Why are you walking like a duck?"
"A duck?" I said. "Because you have bulky dressing around my groin and the tape is stuck to my pubes." That got a chuckle out of the rest of the staff.

We got back to the hotel at 9:30pm where I am trying very hard to be a compliant patient and keep my leg straight. Monica went back to Bahama Breeze and got me some baby back ribs and they were delicious. I never thought I 'd be back at the hotel, eating ribs tonight.

Thanks for all the kind notes and phone calls! I'll see you soon!

9czknre4qu

Click the video and give it a few seconds to come on. There's a delay for some reason.

Gina is on a couple of the forums I'm involved with online.

First Angioplasty

Me and my new little companion, Abraham, named after Dr. Rothman

I'm finally upright again. I ended up being the later case yesterday as Dr. R had to do an angiogram on a baby. Apparently, babies can't fast as long as adults for procedures. They took me to the cath lab around 11:30 and let Monica follow me into the lab up until they started to intubate me. I asked them if they were going to make me curl up on one of the little pediatric tables and thanked them for sending me the pre-op packet that said I could bring my favorite bottle and stuffed toy.

I told them my favorite bottle came with salt and lime. The anesthesiologist injected something into my IV. Monica told me later what I said. Of course, I have no recollection. I only remember taking off my glasses and handing them to the nurse because I was feeling woozy. She said I asked her, "Is it normal to have yellow spots all over your face?" Then I said, "Wooah, what did they give me? I think it was LSD." I don't remember Monica kissing me or anything. I did wake up and felt them taking the ET tube out and coughing a lot. They said, "Everything went great." I thought that meant they didn't find anything. When I got to recovery Monica and my mom were there and they told me that both my stents were almost completely closed down, but Dr. R. managed to balloon them open again. In fact, they are now more open than they were when he initially put my stents in. In 2000 he opened my artery up to 8mm. At this angio it was closed to 2.8mm and now they are 9.2mm open. My mom and Monica got to see the film where he ballooned open the artery and saw all the blood rush into my lung where it hadn't gone before. I was only getting a little blood into the upper lobe and now I'm filling the lower lobe as well. I can't wait to see the film. Dr. R is going to send me my own copy. Hopefully, I can get it online to show you.

I have an interesting new haircut...ahem and my groin feels like it's been pummeled a bit with a sledge hammer. I took off the pressure dressing this afternoon. I had to spend the night in the hospital because I kept puking after the procedure. That is the worst part of all this. I hate to throw up. At 10:30 they called Dr. R who ordered some Phenergan IV and I was out for the night. I think my mom and Monica were relieved because they'd worry about my groin bleeding in the middle of the night and they'd have no way to get me back to the hospital except to call an ambulance.

I woke up at 6am and felt much better. I even managed to eat breakfast. Dr. R came in and released me this morning and I was out by 9am. He said I should be feeling much better, have less shortness of breath and be able to do much more. I am actually glad they found something to fix and I realize my lack of stamina and fatigue are not my imagination. The only bad thing is that I have to go have an angiogram every 2 years now because the tissue I grew in my stents is not typical and could be caused by my disease process. As Dr. R put it, I'm a "tissue grower." I think everyone was surprised the stents had closed down so much.

Thanks so much for all your kind words and support!

On Monday night before the procedure we went to see Cirque du Soleil's "LOVE." It was fantastic. If you get a chance, especially if you're a Beatles fan, go and see it.