Blood Clot & Hospital Stay

Wednesday, June 22

Hanging out with the greatest husband in the world ❤️ We're at the hospital, I went in for chest pain and pressure and found out I've got a blood clot (DVT - deep vein thrombosis) in one of the vessels in my chest. They are treating with blood thinners and keeping me until at least tomorrow. They say I'll probably have to be on blood thinners for a year to prevent more clots. Not sure how blood thinners play into the brain biopsy plans. Consultations with specialists tomorrow, so we'll see.

Thursday, June 23rd

Update: Still in the hospital, they aren't letting me out today 😩 They said my blood clot is occlusive (meaning it's blocking my entire subclavian vein) so that's why I'm feeling so much pressure and pain. Blah. The pressure is now in my neck too (it wasn't yesterday) so it's pretty uncomfortable. It sort of feels like I'm being strangled on the right side!!
I saw three of my docs today, still waiting for input from my neurologists on how this will affect my brain biopsy plans and what they think about everything. Sounds like the minimum length of time they want me to be on blood thinners is three months. So unless the neurologists feel this treatment could compromise my lesion, or have some other plan, the biopsy will wait at least that long. For now, they have me on max doses of heparin and warfarin (blood thinners) trying to get my blood into a safe range. We are also trying to decide if we need to remove my central line (which would mean canceling my final plasmapheresis treatments and risking the possibility of having to place another line later on.) They are also debating which blood thinners to send me home on when the time comes. Lots to figure out still. Thanks everyone for your thoughts prayers, it really means so much and helps me to stay brave! (trust me, in some moments I feel like being a total baby!! And in some moments I am 😂) Love you all! Xoxo

Friday, June 24th

I'm too tired to summarize the updates, so for those who are interested, here are the full updates from my texts to family today:

MORNING UPDATES

Looks like I'm not going home today 😞 They stopped the coumadin last night unexpectedly. The hospital doc says that was for three reasons:

1. They are most likely removing my central line today and don't want the extra risk of bleeding with coumadin. Waiting on input from neurologists to make this decision final. Once they decide, they'll do it.

2. They are switching me from coumadin to pradaxa (another blood thinner). Seems like the better choice for several reasons.

3. There are some special lab tests dr. Dhillon wants to run that would be affected by coumadin.
They won't give me my first dose of pradaxa until after they remove the central line. So deciding on that and getting that done will come first. Then they want to watch me for a day after they give me the first dose of pradaxa to make sure all goes well. Then they will send me home on pradaxa for three months.

I'm still on the constant heparin drip and they will continue that until pradaxa starts. They said they will stop the heparin drip while they take out the central line. Doc says I should be getting out of here "in a day or two" 😞

EVENING UPDATES

1. Dr. Dhillon stopped by. He talked to Dr. Dardis (neuro oncology). Dardis does want a PET scan ASAP, but it will have to be outpatient because they don't do PET scans here. Dardis says biopsy is not off the table, he still wants to look into how urgent this is. Dr Dhillon said there is a way to get me off the blood thinners for a few days, get my levels to normal, do a platelet infusion and do the biopsy safely. So in an emergency (which this is not yet) we can still do the biopsy. He says ideally we will still wait three months to do this, but if Dardis feels it's urgent we can do it sooner. Dardis signed off on the blood thinners in general, he doesn't believe it will cause any problems for my lesion.

2. Dr. Dhillon says I have to go home on LOVENOX shots!!! 😩 He says the textbook situation is to be on heparin or lovenox for five days before starting pradaxa (they are different kinds of blood thinners). He said for some people he might flex that protocol, but he laughed and said with me he's not going to risk anything and we're doing everything by the books since I'm complicated and sensitive to everything. So it will be lovenox three days at home and then Pradaxa. He says he's comfortable with me starting pradaxa at home. If there were any new symptoms that first day I would just go to the ER. But he thinks it will be fine.

3. I told Dr. Dhillon about how the pressure and pain suddenly moved into my neck yesterday and has stayed there since. He was shocked and said its the first he's heard of this change. I was telling the nurses ALL day yesterday to ask the docs about it, and make sure they weren't concerned about it. I also told him how my chest and shoulder and neck have felt hot all day (in addition to pressure and pain). He says these newer symptoms could mean the clot is growing or moving or something. He is ordering another ultrasound of my neck ASAP just to be safe. Hopefully tonight. Might just be progression of symptoms from the clot we already know about but he said it is definitely suspicious. He also felt my neck and agreed it was hot to the touch on only the right side. As of this evening my neck is also noticeably swelling 😕 blah.

4. Still trying to decide if we should remove my central line. We've been trying to reach Dr. Sivakumar (the doc who originally ordered the plasmapheresis) without any luck so I told Dr. Dhillon we should just decide. I only have two plasmapheresis treatments left, so it doesn't feel like a big deal to just skip them, especially since my brain lesions are unchanged from the treatments. We agreed that he would schedule my central line to be removed tonight or tomorrow.

5. AFTER my talk with Dr. Dhillon I finally got a call from Dr. Sivakumar (he was apparently calling me from out of the country) who said absolutely do not remove the central line!! 😐
He wants to do an extra month of plasmapheresis. He says he always wanted to do three months from the beginning but my insurance only approved two. He's going to push my insurance to approve another month. He says we really need to give it three months before we can say it didn't work. He says he's comfortable doing the treatment even with the clot there. He says he'd actually be worried about taking the line out with the clot there, because it could jar the clot and send it somewhere else. Ughhhh. I don't know what to think!! Who is right?? Is it dangerous to leave it in or dangerous to take it out?? I'm going to make the docs talk it out and come to a conclusion.

6. Dr. Dhillon says I should get out tomorrow unless there's something new on the ultrasound.

Saturday, June 25th

We are leaving the central line in, and my neurologist is going to push my insurance for another month of plasmapheresis.

The new ultrasound showed "slow flow" in my jugular vein, which means there could also be a smaller clot there, but that doesn't change anything, because we're already doing the treatment for that, and it should only get better from here. The ultrasound also showed that the subclavian clot is getting smaller with treatment, so that's great news!! 

Follow up will be:

1. PET scan and decisions about biopsy with Dr Dardis (neuro oncologist).
2. Appointment with Dr. Dhillon (hematologist) in two weeks to check on blood thinners and talk about follow up ultrasound of my clots.
3. Dr. Sivakumar will push for an extra month of plasmapheresis from my insurance.
4. I'm going home on two days of lovenox shots 😳 then transitioning to pradaxa. I will be on pradaxa for as long as I have my central line, and then for three additional months after that.
5. They found an abnormal result on my platelet aggregation test (one of the tests Dr. Dhillon ran last week.) Dr. Dhillon says he reviewed the results with a pathologist and neither of them have ever seen results like this (I'm starting to think I have some mystery disease from another world!) He says we will repeat that test after the blood thinners are done.
6. My symptoms should start improving sooner than they thought (they predicted 2 or more weeks) since the clot is already shrinking. Yay!! It's already feeling a little better.

And....I'M GOING HOME TODAY!!!! Can't wait to sleep in my own bed! Thanks to my amazing family for taking such great care of me this week, and always!!! And thanks to everyone for your love, prayers, and support, it means so much