So I always said I’d be 100% honest in my blog about the HSCT procedure and my recovery afterwards so I’m not going to hide this. Complications suck ass, but they happen, and I happen to be the unfortunate one to have this one happen to. First off before people get too freaked out by this blog post, I do just want to say that this is a rare side effect caused by having a neck line. This type of DVT (Deep Vein Thrombosis), aka blood clot, is rare, I only know of a couple other people who have had HSCT in Russia that have had this happen. And I did email Dr. F after getting this diagnosis to let him know about it, what meds they had me on, and that it would mess with some of my blood work numbers in the future. He also said this is a rare complication from the neck line. So it’s not something to be super freaked out about, but just something to watch for after your line is pulled and he was fine with their plan of action for it and wants me to update him on the situation in the future.
So you all are probably wondering how exactly I came to the conclusion that something was wrong in my neck. Well a couple of days prior to going to the doctor I had some pain in my neck around the area where my neck line was inserted, I attributed it to phantom pain, a common thing that happens to people who have lines pulled, it wasn’t bad just a little irritating and it always went away when I slept or wasn’t very active, it just showed up when I was moving around more during the day, so it didn’t seem super important. But it ended up getting significantly worse on Saturday morning after I woke up and radiated a ways up and down my neck, a bit into my face, and then I also had a headache over my ear that just seemed to be affiliated with it. So I pondered the fact that perhaps I may have a clot as I didn’t think it would be an infection as I just had blood work done on Thursday and everything was normal there, no infections. So I did some online research and seen that for people who have had clots in their jugular, those were the symptoms. So off we went to Urgent Care at the hospital. My hubby dropped me off and took the kids over to the in-laws to wait, since usually Urgent Care requires a lot of waiting around both in the waiting room and in the rooms themselves. Initially I wasn’t sure if Urgent Care could help me because I knew this would require an ultrasound, so was thinking they may send me to the ER, but the gal at the desk said they could see me there, so I stuck with that, as the co-pay for Urgent Care is $25, same as seeing my actual doctor.
So once I checked in at the desk I plopped down in a chair with my mask on, using large quantities of hand sanitizer while there. The sign on the counter said a 45 minute wait and it was pretty accurate. Luckily in the summer months there really aren’t any sick people there, usually its more people there that have somehow managed to injure themselves doing stupid shit or playing sports, so that is a plus. Once I got called back it was the usual getting weighed, temp taken, blood pressure, pulse, and heart rate. All normal for me and my weight is the same as it was before HSCT. Amazingly just as the nurse was finishing up asking me questions to input data in the computer the NP came in, which was just flat-out shocking I’m not going to lie. Usually you end up sitting in the room for at least 20-60 minutes waiting for the NP or doctor to show up. So we got right down to business, I explained my situation, explained my procedure, said my neck line was pulled 2 weeks ago, I had several plane flights, including one long international one, and that I suspected that I had a clot in my jugular.
So the NP did the usual heart and lung check with the stethoscope and that was all fine, which is a good thing. Then she had me stare straight ahead while she stared at both sides of my neck to see if the left side looked different then the right. Then she had me lay down on the bed and turn my head to the right and she felt all over my neck wanting to know where it hurt, then she had me turn to the left and did the same thing. And really when you have neck pain the last thing you want someone doing is pushing down on it where it hurts, repeatedly. She said that the left seemed a bit different then the right so she order an ultrasound on my left jugular vein. Now being this was on a Saturday, the ultrasound tech was not at the hospital, just on-call, so they had to call the lady at home and have her come in to do the ultrasound. So in took about an hour for her to come in and get everything set up for the ultrasound. I was then escorted all the way from Urgent Care across the hospital to the ultrasound room to get this done.
So considering the ultrasound tech was called in from home on a Saturday, she actually was pretty pleasant and in a good mood. I’m guessing she gets paid extra for this, so probably likes the extra money. But she had me strip off my shirt and bra and put on a hospital gown and had me put it on so it opened in the front and told me to leave my left arm out as well. Unlike in Russia, in the US we are more about modesty so we use hospital gowns here and the people leave the room while you get into the gown, have a curtain to pull across the door so nobody can see in, knock before entering the room and ask if you are ready before barging in. Although really I’m used to the lack of modesty so would have been perfectly fine with laying there completely topless.
Then we started the ultrasound. Here they also have the ultrasound gel in a warming holder so it’s nice and warm when they put it on, so a plus for that as well, as opposed to in Russia where it was cold. I guess the US does have some perks and I was offered a warm blanket to cover up with as well, didn’t really need that as was still warm from a hot flash, the perks of hot flashes, ha. So she started out by taking images of my left jugular vein right where my neck line was inserted at, then she moved up towards my ear, then down towards my chest. She took quite a few images in that area, and she kept going back to focus on one particular spot, slightly lower than where my line was inserted at. She then said she wanted to do the veins in my left arm as well to ensure there were no clots there and to see how the blood flow was there, just as a precaution. So she looked at all my arm veins. Then after she finished there she went back to that same spot in my neck and took a few more images. I figured that something had to be up in that spot since she kept going back there, and I will say, when you have pain in that area, having someone constantly pressing down in that area is really quite annoying. She printed off quite a few images and then left the room so I could get dressed. She left the ultrasound screen open when she left the room and I got to see the last few images that she took which were of my jugular in the spot she kept going back to, I seen where there was obviously something not right in the vein, so assumed I was later going to be told there was a partial clot there. But I did realize when in the room that in a little over a month I have had ultraounds on both legs in Russia and then the left arm here, so soon all the veins in my body will be well mapped out… Here is a pic of the ultrasound machine.
After that, the ultrasound tech walked me back across the hospital to Urgent Care, where I was then put in a different room to wait for the results as my former room was being used by another patient. So in order to get the results from the tech, an actual doctor had to sit down with her and look at everything and come up with the results, so of course she had to wait until he was done with whatever patient he was with, so that took a while, as there was only one actual doctor working there that day, the rest were all NPs. Then I had to wait for my NP to finish up with whatever patient she was with to come back in and tell me the results. So I was waiting around an hour to get these results. But when she came back in the room she told me that I did have a partial DVT in my left jugular, but I did still have blood flow there. The course of action for this was to do a shot of blood thinner in my stomach and then to start me on oral blood thinner medication that I’d take 2 times a day for 21 days, then a different dose 1 time a day for another 21 days. Then in certain intervals to be determined by my actual family doctor, to get neck ultrasounds done to see how the clot is coming along and then when it is completely gone, I’ll take blood thinners for a couple of weeks after that and then should be able to stop them as this DVT was caused by the neck line itself and I don’t have a history of blood clots, so no need to stay on the medication.
So my technical diagnosis as per my paperwork: Acute appearing nonocclusive thrombus in the left internal jugular vein. It also said that the vein is partially compressed because of this, but there is still blood flow. So in normal person talk, I have a partial DVT (Deep Vein Thrombosis), aka a Blood Clot, in my left jugular vein that is causing all my issues, but there is still blood flow so that is good. I mean it’s not a great diagnosis, but at least it’s nice to have an answer as to what was causing my issues.
So the treatment for this was a shot of blood thinner at Urgent Care to start off with. I was given a syringe of 100mg of Lovenox. There is quite a procedure at the hospital now when they give meds like this. It requires 2 nurses to look at the medication, I had to verify all my information, they had to tell me what it was to ensure that is what I was supposed to have, show it to me to verify that is what it was, they both had to sign paperwork saying they witnessed what type of drug I would be given, then we actually got down to getting the shot. They have this elaborate protocol now because a nurse last fall ended up killing a young child by giving them someone else’s meds while in the ER, so now there is quite the protocol. But back to the shot. So this is a shot that is given in the stomach in the fat under the skin. The nurse warned me that it may hurt and that it may get some bruising around it afterwards, I assured her that I had given myself numerous shots in my stomach that were excruciatingly painful, so I’m sure I could handle this shot. It didn’t hurt at all… The shot has an air bubble at the end to seal off the injection site so nothing seeps out. I did end up with some bruising right around the needle site but that was all, nothing too crazy. Some pics from the following morning, and yes my pajama shorts are amazing and the smiley faces do glow in the dark for those that are wondering.
So then starting Sunday, for 21 days, I have to take Xarelto in 15mg doses 2 times a day to try to break down the clot. After those 21 days I will switch to taking 20mg doses 1 time a day for 21 days. Then after that we will evaluate if I still need to be on the meds anymore or not. In that timeframe I also will do several other neck ultrasounds to monitor the clot. And then I have to do several visits with my actual doctor to monitor my blood to ensure that numbers are staying in proper range, I’m guessing platelet count. Luckily for me, these appointments correspond with my blood work needed for my HSCT and I believe it’s the same blood work, so I shouldn’t need any extra appointments. But if any other blood work is needed for this, they can just draw extra vials of it when doing the draw. I’ll find out tomorrow when I have my actual doctors appointment with my family doctor.
But this medication at least has no food restrictions, although you are not really supposed to drink much alcohol while on, which is fine with me as I’m avoiding alcohol for several months in general until my gut can heal a bit from all the chemo. Some people have issues with caffeine while on it as well, but I have learned that for me in recovering from HSCT that caffeine is not my friend and actually aggravates my lungs and causes some chest pain, so I am avoiding soda now. I also am avoiding coffee or just drinking small amounts for the first few months to let my body recover more. Although really I rarely drink soda, so avoiding it is not really an issue. The medication does have some other minor side effects that people often experience when they start it, but they are similar to my lingering MS symptoms, so I really wouldn’t know if I have them or not. Then because it is a blood thinner of course you have to be careful to not cut yourself, which is already something I’m trying to avoid just because to limit any chances of infection. And then you can bruise very easily, so you are supposed to try not to bruise yourself.
But this is something I will keep updating on in my weekly posts, or in between the posts if I have a neck ultrasound scheduled in between sometime. But I felt it was important to post about this just because when you do get home from the HSCT procedure you do need to be on top of your health and if anything seems suspicious at all you need to go to the doctor and get it checked out. And while I have not had a fever, if you do spike a fever you need to immediately get that checked out for infections, and if you have a high fever just go straight to the ER and tell them about your procedure and that you suspect an infection so they can start you on IV antibiotics right away, then they can determine it’s a mild infection and just give you oral antibiotics, but infection is not something to mess around with and the earlier you get treated the better.
And I just want to say that these blood thinner medications are fucking expensive even with insurance, they are considered a specialty medication, at least the first 21 days are, so most insurances only pay 20% of the cost. The first 21 days which you need to take to break up the clot, they charge astronomical costs for because they can, hooray for the US medical system and big pharma running it! After insurance, for the first 21 days, would run close to $600!!!! I got a couple of days worth from the pharmacy to start with and they recommended contacting the company that makes the meds for co-pay assistance, which I went online and filled out some forms and got a card that I take with me to the pharmacy and after the pharmacy bills insurance, then they will run this card, and the drug company will pay everything up to $3400 of the costs of the medication. So within a year period of time they will cover the co-pays until you hit the $3400, then you are stuck paying for the rest yourself. But after the intial 21 days of the 2 doses a day of the 15mg, after you switch to the 20mg once a day for 21 days, then the price goes down drastically, and after insurance it only costs $65 for 21 days of the meds. So theoretically when I go back to the pharmacy tomorrow to get the rest of my first batch of meds I should be paying nothing out of pocket, if Walmart actually has more of the meds in stock, they could only give me a few days worth of meds to begin with because that was all they had. You know because it was recently the 1st of the month which means everyone on medicare and medicaid could refill their meds for the month and the pharmacy ran out, they were supposed to get a shipment of meds Tuesday morning, so we will see. Otherwise they informed me that they would have to call my prescription over to the neighboring town’s Walmart to fill or if need be to another pharmacy in general. But my insurance only allows certain pharmacies, so my options are limited.
So that’s been my excitement. But other than that, I’ve been feeling pretty good. I’m kinda thinking when I had my bad days, the blood clot may have been the issue, hard to say. We will see how things go in the future. I’ll keep you updated.