15. My life- Saved.

Before I get started with this entry, I’m very happy to say that I can freely share this piece of information. I am employed by, and have received all my care for myself and my children through Cincinnati Children’s Hospital Medical Center. We are patients of the HHT Center of Excellence, and I have now been a patient in Same Day Surgery, OR, PACU, and now even an overnight stay. We have been through Cardiology, MRI, and outpatient lab departments. As a patient, and a mother of patients…I could not be more pleased. As a nurse, I could not be more proud to be part of such a place.

I looked back at earlier posts and saw that I had alluded to CCHMC as part of my sister’s experiences as a patient years ago, and that’s definitely the beginning of my time there. Today, though, times are different, especially in regard to social media. Every business has its own regulations, and CCHMC is no different. So, in telling this story, I wanted to be sure that I wasn’t violating any of the rules on that. I felt confident that I wasn’t/wouldn’t be, but needed to run it past people who could put kind of an “approval” on it for me. That approval came just a few days ago by email. What I felt has been confirmed. I’m just telling my story. I’m not speaking on behalf of CCHMC, so it’s fine. I’m happy to have the support.

The procedure to embolize the large AVM (arteriovenous malformation) in my lower left lung was originally scheduled for late August. However, due to a scheduling conflict, was then moved to November 21. Dr Patel assured me that there was no concern about the delay, and I trusted him so I was ok with that. Actually, the timing was a little more convenient as far as our family life.

Between August and November, life went on as usual. School started back up, and we had three kids in middle school now, all in fall sports. Lots of practices and running around and the time passed quickly. Personally, during all the workup for my procedure, I knew that my weight and my blood pressure were up…which was new. Blood pressure had never been an issue for me and that made me nervous. I was also feeling more easily short of breath, but was crediting that to the extra weight. None of the usual diet and exercise changes that had always been effective were working like they used to…but I had just turned 46, and was enjoying some of the fun of being a mid-40’s woman, too.

Derek and I arrived to Same Day that morning and I was ready to go. I was extremely confident in my team and the plan. One of the HUGE perks of being treated where you work is getting to request your team. We have so many awesome staff members…but when you get to ask for people you’ve known for years, and you consider them not only excellent care providers, but also friends…it’s really a gift. One of my best friends was my nurse who admitted me and placed my IV. My anesthesia team was made up of an Attending and CRNA, both of whom I have worked with for 15 years. I’ve already talked about how I came into the care of Drs Patel and Ristagno. My OR nurse was Christin, who I didn’t know well at the time but took such great care of me. In PACU (Recovery) I woke up to Beth. I’ve known her for 15 years too. It was SO GOOD to be cared for and LOVED.

Obviously, I can’t speak to much of the procedure itself. I was asleep. I know that it was scheduled for 2-4 hours and they finished in closer to 2, and reported that all went very smoothly. I remember waking up relieved and happy, (maybe just a little bit anesthesia drunk) but again, feeling surrounded by love and support. Dr Patel came by while I was in PACU with images to show me exactly what they did…a before and after. Amazing.

During a procedure like that, you’re given large doses of Heparin to “thin the blood” and prevent clots which could result in all kinds of bad things happening, including death. Because of that, I had to lay flat for a few hours afterward for observation. Everything went just fine. I had really no pain, no signs of bleeding. I was able to go home and rest by late afternoon. My instructions were to take it easy for a few days. I had some restrictions on lifting (nothing over 10 lbs for maybe a week?) and that was it.

I came back to work the following week, and was just overcome with emotion. The feelings began before I returned, but I now had such a new appreciation for what we do, and especially for our surgeons and proceduralists. At CCHMC, we say “Changing the Outcome”…but until YOUR outcome has literally been changed, and you really feel it…it means something else entirely. I need to go back real quick to the fact that I didn’t have any idea that I had this thing. Nor is it likely that I ever would have known. All the symptoms I was having were easily explained and attributed to other things. None of them would ever have pointed me toward HHT.

I would start speaking of Drs Patel and Ristagno, (and then think of all the docs we know and work with) and would just really become overwhelmed. Think of it. This is their job. They get up in the morning, go to work, and do things to and for people that SAVE THEIR LIVES. I admit, working there, I have gotten to a place of taking it a bit for granted. We see so much really, really awesome stuff happening. I mean…we see plenty of sadness and tragedy, too. But the awesomeness is real. I made sure to let them both know that I’m very aware that they saved my life. Neither of them are comfortable with that kind of talk…they’re both pretty humble guys. But I asked Dr Patel, “This thing in my lung, could it have killed me?” And he said, “Absolutely.” So I said, “OK. Did you fix it? It’s gone now?” Patel…”Yes, it’s gone. We fixed it.”

Me- “OK then. You saved my life. That’s all.”

That was a phone conversation while I was still at home. I made it worse when I got back to work, and I made him let me hug him. I’m a hugger…he’s not. But if saving my life doesn’t at least deserve a hug then I don’t know what does. Luckily he’s a great sport and extremely tolerant. I do think (and he has said as much) that he’s genuinely happy for me, too. When I eventually saw Dr Ristagno I gave him an enthusiastic hug too, and introduced him to my coworkers who gave him and Dr Patel a round of applause. God bless him-Dr Patel is used to us-I don’t think Dr Ristagno knew what to make of it, but he was very sweet and gracious. I know he knew I was genuinely happy to see him.

I’ve gotten off track a bit, but coming back to work, I felt GREAT. It was only in hindsight that I began to realize how bad I was feeling. I noticed little things, like taking stairs and ramps to and from the garage before and after work were much easier. A walk that left me winded two weeks prior was now easy to do. Sleep was more restful. I didn’t need a nap after work! I always assumed it was because the day started so early and I just couldn’t handle a 0430 wakeup…but I do it now and get through the day with no problem.

My migraines are almost gone! Last spring, I didn’t make it more than 48 hours without a headache. Since my procedure, I didn’t have one at all until March! Since then only a couple, and even those are different. The ones I have had recently are muscle tension, not the visual aura ones I used to get. I’ve had none of those. I have suffered with them for 30 years. As for the muscles…I’m suspecting we need a new mattress more than anything! We are due for one. Oh yeah, my blood pressure is getting back to normal too, as my tolerance for exercise has gone WAY up. All good news!

I follow up later this year with imaging to see whether everything is stable. But, since November, I have felt really great, and so thankful. Love my team. Next up is the care of my kids…more on that in the next post.