Yesterday was rough. Can’t lie about that. They save the hardest test for last, I think. If I never have to have that test repeated again I’ll be a happy camper.
In the end, I made out fine, but I did have a bump after they tried to sit me up the first time. It wasn’t very pretty so I’m not going to put it out in all it’s glory here, as I don’t feel it appropriate. I think the title of this post gives enough of a clue.
Still, I was relieved because the hot interventional radiologist I had who did the test was also going to be the one dictating the report so he gave me a general all clear as far as how things looked. Which is great, because I knew this would be the hardest test, but also the most worrisome. He was also super attentive which I appreciate. It took him all of 2 minutes to be in my room once I had the blip & he didn’t leave until I was clear. The other associate that was working with him, also stopped in before I went home to wish me well & to make sure I was feeling ok. I’ve had some hospital visits when I was living in NYC where I was left to languish or I saw the doctor during the procedure but then I never saw them again after, so I really appreciated that.
Cardiac Catheterizations (heart cath’s) are done to check for problems like Pulmonary Hypertension, & to check the pressures of the arteries & veins in the heart to make sure they are working well. Sometimes after time, people with end-stage lung disease do go on to develop problems with their heart because of the stress put on the heart when respiration is not what it should be. Keep in mind the respiratory system not only keeps a person breathing, it makes sure oxygen gets to the organs in adequate supply. It’s just as important as the circulatory system, & actually both work pretty close together. The heart has to work harder if the oxygen can’t be getting to the organs as easily as it needs to.
I wasn’t scared going in because I had 4 renal (kidney) embolizations between 2004-2010 because of problems related to tuberous sclerosis complex (TSC), and it’s essentially the same process except they’re looking at the heart instead of the kidney. They go in through the femoral artery (sometimes they go in through a wrist instead but mine were too small) & take a look around at both sides of the heart. This time they were just using that as an entry point to take a look at my heart (versus plugging up tumors like they did in my kidneys). I just was going to be happy when it was over with. It just seemed to drag on a bit longer than I’d hoped, even before my little “blip”.
I was awake (gave me sedation similar to an endoscopy) & I guess I was less afraid to be fairly awake after having at least 1 embolization previously where I had that type of sedation (or I’ve just gotten callous to all the medical procedures over time & could care less with stuff like this if I’m awake or asleep). The procedure itself went relatively quickly. I had some good looking docs performing the procedure, so that was a pleasant distraction. But it just felt like forever before I could feel like I could sit up again.
I have to say the staff in the cath lab were great. They took very good care of me & were very attentive. I had just gotten off the phone with them about 5 minutes after I was writing this post because they were checking in on me to see how I was.
(Important aside to women with my illness or others who might be a bit scared about what I wrote above. This may or may not happen to you during this procedure. I was honest about it because I find it much less lonely to know if someone else had a hard time with certain tests or procedures. It’s always better to know going in if there could be a complication what it’s a bit more likely to be & know that it’s still a relatively manageable one. They will just watch you more closely or put you up for the night rather than letting you suffer or go home before it’s safe.)
I was glad we decided to stay that night & the complication I had didn’t require me to be admitted to the hospital. Though we missed the main meal time, there was still plenty of food being kept warm by the Gift of Life Family House staff and the HomeCook Heroes that were still hanging out. Though I did finally get something to eat (I had fasted most of the day but then did get one small meal at the Hospital about an hour or so before I went home), it felt so good to be back there & fuel up again & then have a comfortable bed to crash in.
One of the women I went through a lot of the testing with was staying at the Penn Transplant House on the hospital campus with her sister. It was nice to hear about how things were run there so we could get some information on it, just in case we’d ever have to utilize it. It’s a much smaller house however; than Gift of Life, so while I’m so glad we have 2 houses to choose from in case one is full, I think the Gift of Life Family House accommodations worked out better for us. I told my new friend about our stay there, so just in case it would work out better for her in the future, she would be aware of it.
Now as I write this I am home from the whirlwind, & a bit tired (coming down from adrenaline & all the racing around I’m sure) but still really glad I did this. But now grateful to have it behind me.
I just have to wait until after Labor Day for my follow-up to see what’s next. I have a few other docs I have to try & see in the interim to get up-to-date on some stuff (like recommended vaccines & a few other minor scans), but will work on that tomorrow or the next day when I feel up to making a few calls.
I’m very lucky I had an awesome partner-in-crime to help me with all of this. Since we’re both only children, we’ve essentially adopted each other as sisters. I knew & appreciated that she was willing to step up for me to begin with, but I knew it wasn’t easy for her. Yet she was there, keeping my butt in line when I needed it, like any good family member would. I’m very fortunate to have such great support. I know not everyone has that, but having that made this whole process a lot easier to deal with.