18th March 2019. 2 years, 6 months and 2 days after my DVT. 2 years and 2 days after I came off warfarin. I’m back on blood thinners for life as I have been diagnosed with multiple large bilaterial pulmonary embolisms. My health just keeps getting better! Still, it appropriately happened in Blood Clot Awareness month.
It all started a couple of weeks before. I started to get aches in my right calf that felt very much like the aches I’d had in my left one with my DVT. I popped to the walk in centre on 13th March as it was getting worse and I thought better safe than sorry. After 4 hours there I came away with a positive D-Dimer test, a clexane shot in my stomach for safety and an appointment for a doppler ultra sound the next day. The ultra sound was not done very thoroughly at all; my previous one had been all the way up and down my leg and took probably half an hour. This one took me maybe 5 minutes and the sonographer checked 2 spots on my leg only. He declared me clot free. I resolved to pay attention to the pain and go back if it was getting worse.
Fast forward to Monday 18th March and I woke up in a lot of pain. It wasn’t as bad as my previous DVT had gotten but it was enough that I dug out my crutches for walking around the flat. Luckily Niall had a couple of days off work so I dragged him to A&E with me. Now I will admit I was planning not to sit there for hours so I told him I was going to mention I’ve been coughing and wheezing a bit the last few weeks as well just to make it sound more dramatic and get seen quicker; DVTs are life threatening but not as much as PEs (clots on the lung) so I hoped it might cut down on waiting time. I did have these symptoms but as Niall had a cold recently I honestly thought they were more to do with me just fighting that off. Oh how wrong I was.
Within 30 minutes the nurse had me in for checks and did a quick heart check. My heart rate was up very high which I hadn’t realised; later in the day I found out it was 140! That’s the kind of rate it used to go up to when I was doing clubbercise so for having been sat in a waiting room for 30 minutes that is quite alarming. It has increased since the Cushing’s but it still shouldn’t be anywhere near that. I was sent through into their waiting rooms for a trolley and to be scheduled for a CT scan of my chest.
The staff were all really lovely but it took a while to hang around for the scan. They were so short on everything, there were no trolleys or wheelchairs to be found and the poor nurses were rushing around all over the place. A doctor came to see me and had to insert a cannula ready for my CT scan. She was also lovely but oh dear lord she couldn’t insert that cannula to save her life. I used to be really bad with needles and always go faint after injections but after all the tests in recent years I’ve improved. I got faint at my last Cushing’s test but that’s because I stupidly looked down to see the blood coming out. This time I resolved not to but I ended up feeling faint anyway because she did such an awful job. She first tried on the inside of my left wrist. I’ve never known anyone try there, particularly not as a first try! It hurt and didn’t work and she kept moving it back and forth trying to make it work. When she pulled it out she didn’t put anything over the hole so I ended up with blood all down my hand and on my knee. She then tried in my left elbow, a more normal place and one I normally have no issues with but she couldn’t even get it to bleed. Finally she kind of succeeded on the back of my right hand but it was very sore and she had done it quite low to the wrist, so much so that she said she wouldn’t push it all the way in because it didn’t seem to want to go. She then just left me covered in my own blood to wait.
I got into the CT scan after around 2 hours of waiting. The guy in there was lovely and noticed my cannula was done badly. He did say it could be redone but I didn’t want it messing with and said it was fine. He warned me it would probably hurt when they put the contrast in and boy he wasn’t wrong! I’ve never had a CT done before so I don’t know if it does normally hurt; I can imagine it may as they use iodine and that stings when put on a cut anyway but I doubt it hurts quite as much as mine did thanks to that awful placement. It was a short lived pain however and the scan itself didn’t take very long. Back to waiting in A&E for the results but this time they had found me a bed and I was given some paracetamol through my cannula to help with my leg pain.
About an hour later the doctor (a different one thankfully!) popped in with my results. I had a pulmonary embolism, or clot on the lung. I probably also have a DVT again as generally PEs are a part of a DVT that has broken off and travelled, however due to the symptoms they didn’t even bother to look at my leg. Treatment is the same regardless so they just look at the more serious part and of course anything blocking your lungs is not good. Oxygen was mentioned and admission overnight along with an echocardiogram due to the high heart rate to ensure my heart wasn’t damaged and no clots had moved there. Clot busting drugs were also mentioned as a possibility but only if I was really struggling with breathing because they can carry a small risk of stroke. Due to my previous clot plus my Factor V Leiden I was told I’d be on blood thinners for life now. I actually never ended up on any oxygen either; I assume my O2 levels were fine every time they checked (blood pressure, heart rate and O2 was checked every 4 hours the whole time I was in hospital).
Although we were expecting clots I don’t think either Niall or myself expected a PE and even when you are it’s not a nice thing to hear as it is very serious. So we had a little cry and hug whilst waiting for me to be taken to a ward. One of the nurses brought us a sandwich which got wolfed down and finally at 1am I was taken off to a ward. Niall came along to see where I was then went home for some sleep.
The following morning the doctors were doing their rounds and told me I’d need to see the haematologist to ensure the thinners they were putting me on would be ok with my Factor V. They’ve put me on apixaban (better known by the brand name Eliquis), a newer drug that doesn’t require monitoring like warfarin does and also has less dietary restrictions, the only real one being don’t binge drink which I don’t do anyway. However apparently some blood thinners aren’t as effective with certain clotting disorders. I was also told it wasn’t just one PE but multiple.
The ward I’d been put on was just a ‘holding’ ward and so I got moved again at midday to a proper ward. I was put in a private room though which was great! I was totally exhausted from the pain and the emotion of it all and by now Niall was back in for visiting hours so I ended up sleeping most of the afternoon whilst he sat at my side reading. He’s a great guy, I’m so lucky to have him to look after me. I got to stay in my private room until 1.15am when someone infectious came in! So I got moved out into the main ward.
I stayed on this ward all day with nothing further being done. Niall was back at work so he couldn’t visit until the evening but I had a couple of friends pop over for an hour each so I wasn’t too bored. Thankfully one of the nurses here also noticed my cannula and commented I hadn’t had it used in over 24 hours. I said it was sore every time I moved my hand plus it was itching from all the dried blood under the plasters and she said she’d take it out for me. When she removed all the plasters around it she commented it had never been in correctly and was in fact half hanging out. No wonder it was sore! Having that out made things so much more comfortable; my vein is still enlarged a week later though from being irritated by it for so long and it still hurts to touch though it hasn’t bruised (unlike my botched wrist one which is all sorts of lovely colours).
The doctor here who was doing rounds was an endocrinologist however and therefore was quite interested when I mentioned I have Cushing’s. So much so that his colleague asked if she could come back in the afternoon with her 4 medical students to do some exams and questions. I’m always happy to help out so I said of course. When they came back she asked one of the students to carry out a physical thyroid check on me, something I’ve never had done so that was quite interesting. It was also quite amusing as I’d been asked not to say anything until after the exam as to why I was there so when I finally revealed the Cushing’s the students all went “Oooh” with shocked but interested faces and the one who had done the exam got really embarassed as she tried to say she’d thought my face looked fat but couldn’t find a way to say this without sounding rude. Hopefully there are 4 future doctors who will be happier to look into rare cases when patients come in with them and not just dismiss them outright.
I was warned around teatime that I’d be moving wards yet again at some point and of course this never happens at a normal time. Just after midnight I got woken up and moved down onto the surgical ward. This was simply due to them needing the bed space in the other ward for someone relevant to whatever they treat there. It really confused my doctor the next day when he asked why I was on the surgical ward if I hadn’t had surgery!
This was the worst ward. There was one woman on there who would make Jeremy Kyle guests look like the backbone of Britain. She was crying and screaming and moaning about everything. She was so rude to the nurses and acting like a 5 year old would. In fact I’d expect a 5 year old to behave better than that. I won’t go into details now as I plan a post on the state of the wards and patients anyway.
I finally got my echocardiogram done early this morning. It was now Thursday and I’d been waiting on this since Monday evening. The scan was very thorough, far more so than the one I’d had done at the start of February as part of my Cushing’s tests so that was reassuring. It all came back fine as well so just after lunch I was told I could be discharged once they’d sorted my medication and paperwork. I was also told I wouldn’t need to see the haematologist after all, the apixiban would be fine for me.
I finally got my medications and discharge papers just before 6pm. Upon reading my papers I got my final update which was that it wasn’t just multiple PEs but in fact multiple large bilateral PEs – in other words I have large clots on both lungs. Niall appeared from work just minutes after I’d gotten the all clear so we grabbed all my stuff and got out of there as quickly as we could.
So there you go. I’m now a lifer on blood thinners. I seem to have recovered faster from my leg pain as I only needed my crutches for the 2 days this time and am walking fine now. Paracetamol is keeping any pain at bay when it does flare up but I’m not really needing it. It is weird however knowing as much as I already knew about blood clots in general but not knowing the specifics on PEs as I didn’t (that I know of) have them before. Tiny things wear me out and I do find myself getting wheezy or having coughing fits. I had a neurology appointment on Tuesday and despite having a lift there and back and only having to walk from the hospital entrance to the appointment and back I’m still exhausted today, Friday. I’m very aware that if I start struggling to breath or cough anything up I have to ring 999. In an odd way though I’m looking on the bright side; I’ve let my endocrinologist know so hopefully this might push my Cushing’s testing on a little faster if possible.
I’m still finding my blood clot support group incredibly helpful; I had stayed active within the community anyway and am now using it to find out more regarding PEs and recovery. As I said previously if you have clots or any serious illness it is worth finding a support group of likeminded/affected people, it is so reassuring and very helpful to see how experiences compare.