Here are the scans my doctor took during the surgery. The first is my liver and the portal vein connecting with the left renal vein before they inserted the stent, and the second is my liver/veins after they inserted the stent.
Look at the “mass” on the left side of the scan. That’s my liver. Those tiny metal-looking objects are apparently clips used to shut off veins during my liver transplant. (The liver is a hugely vascular organ with so many blood vessels coming in and out of it. During a transplant, surgeons must cut and re-attach the blood vessels in both organs, and some are just “clipped” off.) The line in the middle is the vein. The big “glob” on the right of the first photo is the back flow of blood waiting to get to my liver, but it couldn’t because of the constriction. Then notice it’s gone in the second photo, and everything is very evenly flowing, as opposed to picture one. SO cool, right? 🙂
And just an update – my labs this week were great. My hematologist/oncologist told me he was “very excited” about them. The splenectomy has my WBC and platelets where they should be, and his suggestion of taking daily iron pills has pulled my hemoglobin/hematocrit up. My labs are finally not looking half-bad! Hemoglobin/hematocrit values measure, essentially, your red blood cells, and after being on iron for only a month, my hemoglobin went from 8.4 to 10.8 (normal is 11.5-15.5) and my hematocrit went from 26.5 to 38.4 (normal is 36-46%). So I’m still anemic, but much less anemic. This should eventually help my energy levels which still aren’t up to where I think they should be. My doctor hopes another month or so on iron pills will produce even higher H&H values. We’ll see!
Then in other news, the mono I caught last December is active in my body once again, but it comes and goes a lot so I don’t think it’s a big deal. It could explain my lack of energy but there’s about 100 things right now we think may contribute to my fatigue. My labs, lastly, show I may have a slight drug allergy right now, but if you only knew how long my medication list was, you’d know that it’s not worth messing with. It’d be nearly impossible to narrow down which drug it is, and it’s minor enough we can ignore it for now.
As for pain, I’m having excruciating “referred pain” in my left arm/shoulder that we think is related to my diaphragm being distressed during my splenectomy. It’s such bad pain and not much takes it away, so I pray it passes soon and it’s not a permanent thing.
Then a good news/bad news thing happened… I got to see my pediatric gastroenterologist on Monday, and I’ve missed her so much since I have to see “adult” doctors now. It was so great to see her, but the problem is that I’m choking a lot. I used to do it before my transplant and choke so hard I’d vomit and not be able to eat for a couple days, but then it stopped post-transplant. Since the splenectomy, it’s back, so my transplant team told me to go back to Dr. Hupertz since she’s familiar with my case. I trust her with my life, no questions asked, so I know I’m in good hands. In two weeks she will run an endoscopy on me to see what’s going on, and if I still have varices in my esophagus, she will band them as well. (More on that later, if there are varices.)
I also saw my transplant psychiatrist this week, and I’ve been dealing with a lot of anxiety and panic attacks lately. I have nightmares and many other symptoms, and she told me again that I have post-traumatic stress disorder, or PTSD. My nerves are apparently worn out from this yet short lifetime of mine. I have learned, though, that moving on sure does take awhile, and sometimes I’m not sure if it’s ever entirely possible, or even what’s best for you. But I’m trying so hard to get to “that place,” wherever that may be… One day at a time.
So that’s it for now… I just wanted to share my super cool pictures and give you an update.
Love you all,