What it means:
“The superior vena cava is a major vein in a person’s body. It carries blood from the head, neck, upper chest, and arms to the heart. Superior vena cava syndrome (SVCS) occurs when a person’s superior vena cava is partially blocked or compressed. Cancer is usually the main cause of SVCS.
SVCS is a group of symptoms that usually develop slowly. Because SVCS can cause serious breathing problems, it is an emergency. Although SVCS and its symptoms are serious, treatment works well for most people.
Sometimes, people with SVCS may not need treatment until SVCS is diagnosed. Or they may not need treatment right away. This depends on whether the symptoms are mild, the trachea is not blocked, and blood is flowing well through other veins in the chest.” — Cancer.net
Superior Vena Cava Symptoms include:
Difficulty breathing or shortness of breath————-> Check!
Coughing ————> Check!
Swelling of the face, neck, upper body, and arms —————-> DUH, check!
Rare symptoms of SVCS include:
Chest pain ————-> Check!
Difficulty swallowing ———> Check!
Coughing up blood from the lungs and throat ———–> Coughing up yucky stuff but no blood, so maybe?
Swelling of the veins in the chest and neck —————> Check!
Fluid buildup in the arms ———–> Obvi, check!
Faster breathing —————–> Definitely. Check.
Bluish skin from a lack of oxygen ————–> According to the doc today, this would be true, so check.
Vocal cord paralysis
Horner’s syndrome, which includes a constricted pupil, sagging eyelid, and lack of sweat on one side of the face———————> Remember my funky eyelid the other day on my first Facebook Live video? I’m thinking maybe this was it. But I could just have a lazy eye. So maybe?
SVCS may develop quickly and completely block the airway. When this occurs, a person may need a ventilator to help with breathing until the blockage is treated. More commonly, if the blockage develops slowly, other veins may enlarge to carry extra blood. In these situations, the symptoms may be milder.” —Cancer.Net
Our options on moving forward were the following:
Go to Medical City and try to do photopheresis through a peripheral vein (like in the arm) and see if they can get quick blood return. If so, they could try to do the photopheresis that way until my vein stopped working or didn’t want to work anymore.
I could have the trifusion put in my groin. Um no thanks. If I do that, I have to stay in the hospital and cannot leave with the trifusion in whereas if it were in my chest, I could leave the hospital after my treatments. I was supposed to have treatments done twice a week (on days back to back) for 4 weeks and then go every other week until we felt it was working. I can’t be in the hospital that long. Brody has his first ever t-ball game Monday and then they go on until the first week of June. I can’t miss that. And I’m not going to.
Surgery to open up my SVC to clear out blockages. (If my CT comes back looking bad, they may do this)
Blood thinners (I had a shot of a blood thinner in my stomach today, but I would need to do them every day).
So I arrived at Medical City and started photopheresis because they were able to get good return on my blood for the machine. However, it did clot three times in the process so they had to stop and flush the tubing to get it to work again. This is what it looked like clogged up (well after they disconnected me. Crazy huh?
So I do think I have a mixture of all three of these things going on. I’m just so anxious to get the CT scan done and find out what’s next. I need to keep this train moving forward. I hate waiting around. Sigh.
Here Are A Few Causes of superior vena cava syndrome
- A tumor in the chest may press on the superior vena cava.
- A tumor may grow into the superior vena cava, causing a blockage.
- If cancer spreads to the lymph nodes surrounding the superior vena cava, the lymph nodes may enlarge and press on or block the vein.
- A blood clot may appear in the vein. This is caused by a pacemaker wire or an intravenous catheter, which is a flexible tube placed in a vein to take out or put in fluids (I THINK THIS IS MY CAUSE OF THIS SYNDROME. REMEMBER THAT BLOOD CLOT I HAD LAST YEAR THAT MADE ME LOOK LIKE THIS)?
Um, yeah, like whoa. Let’s hope I don’t look that bad tomorrow.But we never knew if the blood clot went away or not. I was on Eliquis for at least 6 months or so after the blood clot catastrophe. Maybe this stems from that?
Who the EFF knows?
So now it’s midnight and officially St. Patty’s Day–hence the post title. And I’m pretty sure I don’t have anything green to wear tomorrow so if someone pinches me, I will throw the hospital phone at you. But make sure to get kind of close cause it’s hooked into the wall… and don’t be surprised if you see Klay with a black eye tomorrow. Haha I kid, I kid.
I do know one thing, though, poor Klay isn’t getting lucky any time soon… poor guy. I just hope I can make it up for him one day when I’m not swollen, looking like I’m 7 months pregnant, and having a face that has 30 chins underneath it. I do have some pretty big jugs though because of all the swelling and prednisone. .I guess I could put some clovers on my nips and let him hold them or something? Haha. But for real these things are heavy.
So here I am–trying to find the gold at the end of the rainbow. AKA anxiously waiting on the CT scan and learning more. Oh and wishing you a luckier and greener St. Patty’s Day than mine,