De-Porting

Don’t worry, we are nearing the end of the story of my SVC syndrome from blood clots and the related hospital stay! If you will, come back to early fall when I was in the hospital trying desperately to get home to my girls again (you can see the previous posts here under Detour – SVC Syndrome).

We are now at the seventh day of my stay and I awoke anxious, ready to have my port taken out. During the morning, the doctors came around and I found out that if I had the procedure done that day, I could go home the next day (spoiler, doctors are not always right). If Interventional Radiology couldn’t get it done that day, I would be scheduled for the next day and go home the following. This had me concerned since we were headed into a weekend and it seems pretty obvious that much of the hospital would be operating on a limited type staffing through a weekend and, rightfully so, working on emergency patients first. With how quickly they had been able to get my care started when I arrived the week prior on a weekend, I don’t have a problem with that. Once the port was removed, they would need to get my Heparin (short term blood thinner I had through IV) numbers back to level, then switch me over to Lovenox (more long term blood thinner injected). My activity was to be limited once I was home. The original plan was to take it easy for 10 days with lots of rest and only going to doctor appointments. I was not to be left alone with my girls or drive anyone anywhere for the same time, until I was seen.

Obviously, being on blood thinners long term brought about a lot of questions. I had been on them through both of my pregnancies, but at a much lower dose. Unlike a more popular pill form I had been on previously, this did not require blood tests to monitor levels or a consistent diet. The blood tests, though, while annoying to have done and possibly have to continuously change my dose, provided some quantitative measurement and assurance that they were working. They do not run the same types of tests for the Lovenox. Now that I would be on the blood thinners permanently, it was no ladders forever. Not a biggie, I’m not a fan of heights and that one time I rolled myself off a ladder onto a roof was enough. Seriously. Slithered and rolled. In a professional setting. And then I had to get back down. For those of you who don’t know me in real life, trust me, I’m so much cooler than that story might lead you to believe. Anyway, no ladders. Since we were headed into That Little Girl’s first soccer season, and I was aching to get out there and play with her and get her excited about it, I was disappointed to find out that soccer, being a contact sport, isn’t really in my future.

Around lunch time on this seventh day, the nurse came in and let me know they were going to be sending me for the surgical procedure soon. That meant they were turning off my heparin drip. I called That Guy, and he started to head back to the hospital from work. Pretty shortly after, the nurse advocate for my hospital stay came in to speak to me. She was fairly certain that since Physical Therapy had not been in to see me, I would not be going home that weekend regardless of what the doctors had said earlier. I had not been out of bed much walking around and when I was, it was not easy. Don’t even ask about showering! She was very concerned about me going home too soon. In the midst of our conversation, she somehow brought up that she felt I had a guardian angel and asked what I thought of that. She went on to tell my mom and I a personal story about her family. I won’t share her story here as it is not mine to tell. She had come sort of out of nowhere and read our family’s recent difficult times from something she picked up on and just felt the need to share that she felt my grandparent was a protecting me, without knowing about my grandfather’s recent passing. Sounds a little wacko and I can’t really do it justice since I’m not going to share her story, but I do believe she was assigned to me for a reason in this case. In the midst of her visit, transport came in and off I went to have my port removed! That Guy was not there yet, but he knew where to meet us.

Once That Guy, my mom, and I were all down waiting for me to go in, it was a long wait, and I was super anxious. My experience having the port put in, plus not knowing how they could possibly keep the clots around the port from breaking free, and, well, just knowing it would be uncomfortable, I would be awake, and um, cut open was more than enough to make me feel that way. The nurses had all tried to comfort me before I went down. They had told me their favorite doctor would be doing the procedure. I couldn’t wait to see which of the IR doctors would be their favorite. I was super comfortable with one of them in particular who had been with me several times earlier in the week. So I was taken down the hall (finally because there legitimately were terrible emergencies and holy crap am I glad that I was lower than that on the priority list) and they let That Guy and my mom come down that hall with me. Then they let them come in. The other two people who were going to be in the room assisting, one with anesthesiology/sedation and the other with the procedure from what I could tell said they didn’t even need to put me on the table since they weren’t going to be using imaging. Hmmmm, that is the exact opposite of what we had been told so immediately the three of us had questions. How would they know if the clot was breaking apart for starters! And out comes the doctor.

Every ugly four letter word went through my mind. My mom said I went white and looked panicked. It was the same doctor who had put the port in. I had not seen him since. Perfect! Just to clarify, he had not done anything wrong that I know of. I had just had a ton of pain and different medical personnel had hypothesized different reasons I had so many problems from the beginning. The doctor let us know that despite what we had been told, he had no reason to or intention of using imaging. I asked a lot of questions. My mom and That Guy asked questions. For some reason, I kept looking at my mom for approval that I should keep going knowing he wouldn’t be using imaging. They left the room. Then the doctor decided they would put me up on the table, but they would not be using imaging. I think that he just wanted me somewhere he could strap down and control his crazy anxious patient who asked too many questions! Kidding! No really, they couldn’t get me sedated. They gave me the maximum dosage and apparently my adrenaline or something was in overdrive. I was bug-eyed like I had been mainlining Starbucks. They kept telling me to close my eyes and relax, but I kept thinking, just get through this and it’s one more step to get better/home.

While I was having the procedure done, my mom had run back up to talk to the nurse advocate about some of our questions and concerns since it was getting to be the end of the day and a weekend. We wanted to make sure we understood what needed to be done to get me home in case the doctors just said See ya bye as we have seen happen in other circumstances with little or no notice to have an appropriate set up in place. She helped us know what questions to ask. She also gave us a doll who’s hair falls out (bulbed head baby perhaps, toy industry?) to share with That Little Girl to help her deal and relate everything going on.

I got back up to the room and situated and back on the Heparin IV.One of the oncology fellows came back late that afternoon before heading home for the evening. He had me put together a list of questions that had not been answered from that week. Then he went through them with us and what he couldn’t answer, he went to find out. Seriously. So comforting.One of the best things he did when communicating was to repeat the questions back, to make sure he was answering what we were really asking. So many times when you communicate with people, you don’t really hear what they are saying. This happens all the time to all of us. This one little thing I observed him do made me so much more aware of it. One of those communication tips you read and think, oh that doesn’t apply to me! Well after a week in the hospital with tons of people in and out of my care team, I can tell you it applies to a lot more people than are probably aware. And having the questions written down really gave me a chance to be sure I asked the questions as I really meant them. Loved it!

Now that I was all settled, the regular blood work started back up to get my numbers in the right range. Lots of adjusting to get the numbers higher or lower as needed. It went on all night. By the next morning, it was crazy town all over the place. My numbers went from nearly in range to out by a million miles after a huge change in the rate of infusion. So more questions, more worries, more time in the hospital.