My ultrasound to check the status on my blood clots was yesterday and whoa, it ended up being such a nutso day! I will give a rundown on that in my weekend recap. The short of it is that my two original clots are still there, and they now see a third superficial one. The doctor said it’s a recent clot, but not brand new, and that people with Antiphospholipid Syndrome (APS) can still develop clots while on Warfarin so he also wants me to take a blood thinner shot (Lovenox) twice a day (with my Warfarin) until my blood results come back on Monday to see if the markers indicate if I have APS (which the pharmacist has been saying I have but he said he won’t know until multiple blood panels are compared, which makes sense).
Phew.
The new clot is named Thin Vein McClain (the first two are Veiny McClumperson and Clotty “Ain’t Gonna Ruin My Plans” McStupidPants). Thanks for the new (and old) names, snis.
So… the day was nuts. When I saw this doctor back in September and he told me to see him again in three months I followed the prompts in my healthcare app and scheduled the ultrasound. I got to his office yesterday, and they told me he wasn’t even there! I was so confused. It turns out I had just scheduled the ultrasound appointment in the attached hospital. I figured I would do that, and he would look at the results and contact me next week.
(Side note, this is the first time I used free valet at the hospital and it was great. There was no parking nearby and it was rain/sleeting. Also, when I made this appointment three months ago I was like “please don’t let it be snowing that day,” since it’s so far from home and… it was sleeting/snowing. Yay.)
The ultrasound was for both legs, which took about an hour. I was surprised the tech told me my right leg was in the clear because in my other two ultrasounds, they wouldn’t tell me anything! Right before she was done with my left leg another coworker came by and she asked him to look at my left leg results and I could tell my the words they were using that something was still there. So then I asked her and she told me yep, the clots are still there and maybe a new one. Greeeeeeeeeeeeeat.
Does anyone know how to read these? ha ha
At this point I was thinking that just meant I would stay on Warfarin longer. But she chatted the doctor, who was at another hospital three miles away and he asked me to go there immediately.
So we drove to another hospital (this was actually our third health location of the day because we’d also had to go somewhere first thing in the morning for Steven!) and waited for the doctor to get back from lunch to fit me in. I am really grateful he fit me in, but he was also implying that I should have already seen him for a follow-up (was that NOT the follow-up?) and that I should have scheduled this as an appointment. Dude, the last time I saw you and left your office I could not get back in to have anyone schedule an appointment because it was a Saturday and I was locked out so I just followed the prompts in the app and thought I was scheduling my follow-up. It is an ABSOLUTE PAIN to call anyone in his office so I assumed that appointment was all I needed. Now I know? (I scheduled the April follow-up before I left yesterday… but no scan so… do I still have to do that? Who knows.) Whatever.
He also told me the records of the first two ultrasounds I requested from another health network (because I am stupid and went to an ER in the wrong network) were never sent. So they don’t have anything to compare my current images to. Great to know, on the day of the images. I suppose I should have called his office to see if the records arrived but a) see above about calling his office, b) I just assumed the other health network would do what they said they were going to do?! (I bet they emailed the CD and it was never uploaded) He told me the best thing to do would be go in person and bring them to him, which is funny, because in September he told me to have them emailed. I was a bit frustrated. Anyway.
He was talking so fast during my appointment, probably because he double-booked me, but since I am living this, I could follow what he was talking about. He told me the write-up from my ER images (which I had access to and shared with him in September) only mentioned two deep-vein clots (it also said they were there but not there – it was such a bad write-up). So the third one was missed in the scan before, or is new since that scan. And since my bloodwork came back crazy high with markers for APS, he wants me to be conservative this weekend and take that shot twice a day until my bloodwork comes back in on Monday. On Monday I am supposed to call his office (yay!) and see if I am going to keep taking the shot (I hope not) or up my INR range from 2-3 to 2.5-3.5.
He also told me to lose weight. Ha. I do really need to.
After I left his office I was about to walk to the car and Steven reminded me I was supposed to go get blood work. I am so glad he was with me to help. Geesh! So we walked forever and found where to do that. That nurse was super nice, and so was the one in the doctor’s office (and everyone at the first location was too).
My scan was at 11:00 and we left the second hospital around 2:30. Ha.
I was NOT excited to be told I had to give myself a shot. I’m not afraid of shots, but I can’t look at them, and the thought of giving myself one makes me feel like I might throw up. So Steven said he would give them to me. I am so thankful he is doing that for me. We did the first one last night and it went fine. The pharmacist (where I picked it up at 6:30 after taking the cats to the vet for their check-in since we had a million appointments yesterday) gave me some tips that helped – to numb the area with an ice cube and leave the syringe in for 3 seconds before pulling it out. I am not sure if the ice cube is mental but it helped me! And he said the syringe has to go through three layers of skin and not pulling it out immediately makes it hurt less? Who knows. It all felt fine last night and just stung a bit after. I really hope this is just for a few days though! It was $10 for 8 of them, so that’s $2.50 a day on meds. My Warfarin costs $3 for a two+ month supply!
(Oh, that reminds me, the pharmacist who gave me the Lovenox last night was the one who helped me refill my Warfarin and when she saw the new script she said “are you my Warfarin Girl?” And I was like “Yes, and I have a new clot!” Ha. I was glad I could thank her for finally getting that filled and she told me when they increase my dosage to have the doctor tell them immediately so they can call insurance, so I am sure I will get to do that again soon!)
Wow – I am so sorry you are going through all this. It must be scary and frustrating. I totally get your apprehension about giving yourself a shot – I could not do that either! Thank goodness Steven is able to do it for you, and was there through that grueling day of appointments to help you take everything in. Wishing you the best possible outcome with your diagnosis – and sending hugs!
Thank you Amy! It is definitely both. I am grateful they are taking such caution and care for me but at the same time, yeah, frustrated π
I am so so grateful he is doing that for me!!!! We have done 4 so far! 4 left to go for now!
Thanks so much! <3
That sounds so frustrating and scary. I hope you are able to get the communication sorted out easily. And I hope you don’t have to take the shots for long. So sorry you are dealing with all of this. I do love the names of the clots though but hope you don’t have an opportunity to name anymore.
It is. Sigh. And I know I have to advocate for myself and that this is simple compared to what other people have to deal with, but, ugh. I left a message with them today and hope they tell me I don’t need to stay on the shots. Ha! Glad you like the names π Hope we don’t have to come up with any more either π
Wow, Kim, this is so much to deal with! I’m sorry that you had such a frustrating time with your doctors and didn’t get the answers you were hoping for. But it seems like you have a good team that is being overly cautious with you, and that’s what we want from our care teams! And hooray for Steven being able to administer your shots. That would be a hard thing for me to do, too!
Thanks. I knew you would get all this anxiety <3 They are a good team, when I can get a hold of them. Ha! I still haven't gotten in touch with them this week to see wtf drugs or amount of drugs to take.
I am so so so so grateful he did that for me!
I am catching up late (as always) but wanted to say that I am sorry for what you’re going through… it must be scary to know you have blood clots and then have to run around and deal with scheduling appointments and follow-ups without getting proper directions. I do hope this all resolves soon.
Thank you! It is and I hope it does as well so I don’t have to deal with this dr anymore. Next time I see him I plan to ask exactly how I get in touch with him.