Sometimes things don’t go the way you think they will. And today, was a prime example.
I was supposed to have a trifusion or (CVC) put in today and then go have my first photopheresis session to help treat my graft vs host disease (GVHD) of the muscles. But I wasn’t very lucky today.
gvhd diagnosis - svcs diagnosis
Klay and I arrived at Texas Oncology IR at 8:30 this morning and they immediately took me back to prep for surgery. I was all gowned up in my hospital threads and had an IV in ready for the procedure. Klay kissed me goodbye, told the nurse “take care of her,” and headed to the waiting room.
I was wheeled back into freezing cold surgical room and placed on a tiny slab of foam (or table, but it’s so little you arms hang off) while they prepped me.
They gave me some lidocaine to numb the area in my neck and made a small incision in my jugular vein and realized I had blockages on that side. So, they cleaned me all up, switched everything to the other side, Cut me on the left side, and it was blocked too.
“Well we can’t get a trifusion in today,” my doctor said. “I’m going to call over to your oncology doctor to see what they want to do.”
She called, I waited.
She came back to Klay and I and said I had SVCS (Superior Vena Cava Syndrome).
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.” —

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:
  • Hoarseness

  • 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?

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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?

Blood clot in tube
Then my oncologist came in. He saw me and said he thought most of this was caused by SVCS but he was hopeful blood thinners would work, however, he wanted to do a CT scan of my veins to see how blocked they are first and go from there.
He also stopped the photopheresis mid-treatment and said to hold off on the one I was supposed to have tomorrow.
So this is how I see it. I think most of this swelling, trouble breathing and swallowing, puffiness, coughing etc, is definitely more of the SVCS than the GVHD. I do think I have some GVHD. I have some hardening skin with a funky looking rash and muscle weakness and stiffness in my legs and upper body too. Prednisone is not helping because it can also cause muscle weakness and make me bloated (which is why I look preggers right now) and why I can’t poop and can’t stop eating either.

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

SVCS is more common for people who have lung cancernon-Hodgkin lymphoma, or cancers that spread to the chest. But cancer can cause SVCS in other ways:

  • 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,