Handhold Please - Husband is in hospital with hypoxia

[ValAndEarl]

I'm so scared and don't have anyone to talk to.

My husband was sent to the hospital by the GP late this afternoon because his o2 levels were low. He was advised not to drive and had to get a taxi which I assume is a bad sign.
He's now on oxygen and waiting for x-rays and CT. His o2 is now wavering between 90 and 94. He's been told it might be a blood clot.

I know the odds are that it will be fine but it's so scary. I don't live near family and I'm alone with 3 children and terrified. I'm not in the best of health myself either and he's always been my support system throughout that.

I'm sure it'll look better in the morning, but the one person I'd usually be sharing this terror with isn't here.

Hey @ValAndEarl I’ve been where your husband is so wanted to post giving you a bit of insight into after care
I am on Xarelto which is a blood thinner like warfarin and most likely will be for the rest of my life (I’m late 40’s)
I would suspect they will change your hubby to something other than warfarin as a maintenance dose once he’s discharged, but at the moment he’s probably being monitored very closely and daily or bi daily scans to check the clots are going x
The worst part is over and he’s in the best place now x
They should explain things to look out for when he does come home like sudden onset of breathlessness etc but he should be under a consultant for some time to come xx
Feel free to ask me anything if you need to and wishing him a speedy recovery x

There are several alternative blood thinners to warfarin which he may switch to. Perfectly possible to take them long term. DH has taken them for years with no issues.

Hello OP. Sorry it’s all so tough at the moment.

I had serious clots with, and in the aftermath of, Covid. Like PP I am now on long-term Xarelto (rivaroxaban). Other than being prone to bruising I find it problem-free to take, although nearly 2.5 years on from the first PE I still suffer from breathlessness and pleuritic chest pain. My elderly DF is on Warfarin for life and hates it - it requires frequent blood tests for monitoring, which Xarelto does not. I am still under the care of the consultant haematologist, who checks in with me by phone every few months.

Wishing you and your DH well.

Not me personally but see this a lot through work.

Treatment for critical care patients is usually a heparin infusion or treatment dose dalteparin injections (a form of heparin). Your husband should be on dalteparin or enoxaparin injections (nearly all hospital patients get them). He might be on these for an extended period and need to self inject, depends.

I’ve not heard of warfarin being used in years, the only patients on it being ones who’ve started it in the 80s. Are you in the uk? With warfarin it requires close monitoring of INR which can now be done with at home devices (similar to glucometer). More commonly I see apixaban and rivaroxaban, warfarin is licenced for use just not something I’ve seen.

All patients on blood thinners need to be careful of falls and things, as higher risk of serious complications. Nose bleeds can last longer, cuts bleed for longer etc. However, the benefit of treating PEs far outweighs these risks.

I imagine he will need more regular scans - CTs to check clots haven’t formed again / grown going forward.

All the best in what I know is a stressful time, PEs and other clots whilst not common in general are a common occurrence for hospital admissions, and in many ways easily treated.

Also meant to say covid inadvertently taught us a lot about oxygen levels and hypoxia.

Peripheral spo2 probes are notoriously inaccurate - cold hands, poor perfusion, probe falling off can all record inaccurate readings.

In the critical care I work ‘normal’ sats are considered 92% and above. Often the target is 90-94%. Sometimes 88%-92%. We wouldn’t be concerned about hypoxia in a patient with spo2 of 90% unless having a high o2 req (60% +). Often patients sao2 and pao2 (blood oxygen) read higher than peripheral sats probes. I don’t know if that’s reassuring but I’d try not worry and fixate on numbers ( but I know that’s really difficult x)

Some people have clotting disorders and manage them with medication for years. Personally, I wouldn’t be in a hurry to get on a plane with DH, but that is because I am a nurse who used to be a flight attendant. Of course, depending on the reason for his clots he would have medical advice about this and how to manage it under these circumstances.

I am on warfarin permanently after a DVT led to a diagnosis of an autoimmune blood disorder. Riveroxiban is not licensed for the treatment of this particular condition.

Honestly, it's fine. I have regular blood tests. The frequency of this varies between a few days and a few weeks depending on how cooperative my blood is being.

Occasionally my blood goes a bit bonkers and I have to inject heparin (I keep a stock for this purpose).

There are dietary restrictions on warfarin. In the main these are around consistency. The ideal warfarin patient eats the same thing at the same time every day.

It took a while for the warfarin dose I am on to stabilise. During that time I was self injecting heparin. Again, self injecting is fine. Worse in the anticipation than the deed. My only tip is to wear dark coloured clothes. Occasionally I have caught a capillary and ended up looking like I have been stabbed!

Best wishes to your DH and you.

I’ve not heard of warfarin being used in years, the only patients on it being ones who’ve started it in the 80s. Are you in the uk? With warfarin it requires close monitoring of INR which can now be done with at home devices (similar to glucometer).

This struck me too. I am surprised Warfarin has been started.

My dm used to be on warfarin. She was monitored closely by a nurse who’d take her bloods every two weeks. She had a book and they record this and adjust her medication accordingly. She is no longer on it after having a double heart bypass 4 years ago.

She started warfarin in around 2010 and was off it by 2018.

I hope your dh is ok now? 💐

I hope your DH is feeling better. I had multiple clots almost 20 years ago, just woke up one night struggling to breathe. I was in hospital for a week and had various clot busting drugs, then had 6 months on warfarin.

I didn't have any issues being on warfarin, just had to go for a blood test once a week and the dose was regularly adjusted. It was scary coming off it and I had a few years worrying it would happen again, as the cause was never found (likely the pill), but all good since.

Mentally it took a while to work through, it was all a huge shock.

Wishing you both well.

Rivaroxaban can't be taken for antiphospholipid syndrome. For this the treatment is warfarin if low dose aspirin isn't appropriate.

@ValAndEarl if your DH is on medication permanently do look at getting a prepaid prescription certificate. It will be a cost saving.

I've been taking a blood thinner (Rivaroxaban) for years although I started on Warfarin.

I don't have any problems except heavy periods, but that shouldn't bother your husband!

It's definitely a good thing that he went to hospital when he did. Hopefully he will be fine now.
Good luck!

My father in law was on Warfarin for years, blood test every 2 weeks. He then went in hospital and they put him on Apixaban, no blood tests needed. He asked why wasn’t he put on this years ago and told told because Warfarin is cheaper. Try and make sure they put him on blood thinners that don’t require blood tests every 2 weeks, as it certainly is a pain if you are working. He bruised easily and the bruises took a long time to go, but he never had any other side effects from the blood thinners.

I had 2 blood clots from Covid and antiphospholipid syndrome. After the initial horror of being unable to breathe and taking a month to diagnose it and then being put onto Apixaban, I feel great.
As a previous poster said, the pleuritic pain and breathlessness are still around 2.5 years later but absolutely liveable. Especially with codeine when needed.
Apixaban is great, I had a few side effects but even the bruising isn’t bad now.
I am most likely moving onto warfarin soon as my antiphospholipid is unstable apparently, but after speaking to a number of drs as I was so worried about it, they said really it’s ok, you just need to get used to it.

Very very best wishes for your DH!

I can only imagine how worried you are but I survived 'multiple, significant' blood clots in my lungs 6 weeks after breaking multiple ribs and my shoulder...
I was started on Warferin initially but couldn't stabalize so went on Apixaban.. I was in for a week and injected myself for the first few days.. I can't comment on the breathlessness caused by the clots as I was dealing with the rib fractures but I made an almost full recovery.. Good luck.. Try not to worry too much although I know it's hard..

Thanks for all the support.
He's been on a heparin infusion since Friday and now they've added the warfarin.
He's been told that he's on warfarin because he has a high BMI. I read that the other drugs were easier to live with so hopefully he can be on those long term instead if need be.
Regarding prescription costs, we're in Wales so they're all free, but thanks for the advice.

He's currently texting me about all the drama going on his ward, so I think he's feeling better at the moment.

Hi OP, no experience of blood clots, but my mum’s on warfarin and has been for years, and she’s fine. She has to have something called INR monitored, currently every 3 months as it’s stable, more often if the level varies.

You can get home kits to monitor blood oxygen levels, my DH (gadget man) got one during lockdown. Not sure how reliable they are, might be an idea to ask the hospital if it’s worth getting one.

Hope your DH is home soon

Glad to hear he is sounding brighter! Sitting up and taking notice is a good sign.

As I understand it the heparin is to break down the clots he has and the warfarin is to prevent them reoccurring.

Whether he stays on warfarin or moves onto other drug regimes and how long he stays on them will depend on a number of factors.

Warfarin does have the big advantage of having an antidote (vitamin k) which other drugs such as riveroxiban don't have.

That message a couple of posts up is from me, btw. Name change fail!

😀I spotted it was you!

It the same with blood clots but my DP suffers horribly with chronic asthma. He's been hospitalised a few times and in ICU where he nearly got put in a induced coma to help with his stats. Luckily didn't come to that but his oxygen was always so low.

He got put on numerous different medications and was on steroids for about 6 years in the end!

A great support team at the hospital managed to wean him off steroids safely in the space of 1.5 year and put him on all sorts of different medications. Thankfully he is on the mend (touch wood) had a wobble early July but all sorted now.

I would suggest if you don't have one to get an oximeter it's good to be able to keep an eye on readings etc.

It isn't the same* that should've said!

I have been through the same 2 years ago and am now on Apixiban for life. Physically I recovered quickly but mentally it has been tough and created much anxiety. Please be prepared for that with both yourself and your DH.
I got no support following discharge from hospital or GP.
This charity is an excellent source of info thrombosisuk.org/ and also runs a closed Facebook group which is really supportive.
Hope he makes a full recovery.

My ex DH had exactly the same thing a couple of years ago, had to call an ambulance as he felt so bad. He had blood clots on his lungs and pelvis and is now on blood thinners. I think they started him on something called Apixaban (something like that) but it didn't agree with him so now he is on warfarin. He just has to have his blood checked regularly to make sure the dosage is right, but once you are on top of it it's absolutely fine.

He just needs be careful when he comes home about knocks and cuts as obviously he will bleed more and bruise more easily internally but apart from that he should be fine. My ex worries a lot more about his health now, every time he gets twinge he frets it's another clot and often says he is going to die young, but he is a drama king although I do understand it must be a worry.

Hope he comes home soon and makes a good recovery.

I had 2 massive clots (massive bring a medical term - there's massive, submassive (which your DH's clots sound like - but worth asking the medics), and low risk) which almost saw me off back in 2018 after leg surgery.

Mine affected my heart significantly as I had a saddle PE which meant it was sitting in and down both sides of the junction where the 2 pulmonary arteries branch off, so almost no blood was getting through and was backing up in my heart, causing it to swell up a lot.

I was immediately treated with unfragmented heparin every few hours whilst I was in hospital and they basically hovered over me with a clot busting drug in ICU in case I crashed (they wanted to give it to me in resus by my orthopaedic surgeon said he'd have to amputate my leg if I did as it would bleed uncontrollably and kill me - talk about a rock and a hard place!).

I was eventually discharged after 2 weeks with Rivaroxaban to take daily. Which is similar to Apixaban insofar as there is no INR to monitor as with Warfarin. I did become very anaemic on it but that was a combination of being female (i.e. having periods) and being on a blood thinner, so, due to them knowing it was a provoked PE they were happy for me to come off it 3 months later. If your DHs was unprovoked I would imagine he will be on thinners for life (as many people are for various reasons).

I was so so lucky and the doctors were surprised that I survived it considering the size and location of it - I became a bit of a minor celebrity during my stay and had to speak to endless students when I was well enough!

I think the main thing for your DH is for them to find out why he developed these clots - were they "provoked" (i.e. caused by an event, in my case surgery) or "unprovoked", as this will influence the ongoing treatment. I would imagine they'd test him for things like Factor 5 Leiden (blood clotting condition) and other conditions that increase the chance of clots.

The side effects for me were initially pain in my chest whilst my body continued to break the clots down, immense fatigue and some serious PTSD which I ended up seeing a clinical psychologist for, who treated me with EMDR, which worked well. I will never have the lung capacity I once had due to residual scarring and have been left with some small changes in my ECGs (which I've written down on the health app on my phone to tell any medics in the future so they know it's my 'new normal'), but have been signed off by all the medics after having follow up scans and echocardiograms to check for longer term damage.

There is one complication called chronic thromboembolic pulmonary hypertension or CTEPH for short, which can occur when the body doesn't completely break the clot down, which is serious, but can be treated with surgery (unlike the normal form of pulmonary hypertension).

I'm sending you both loads of hugs and luck - they are nasty little blighters which do leave physical and mental scars, but life post-PE is pretty normal for me (and my god, normality was my dream immediately after the PE), and other than a slightly increased risk of developing another (I now take aspirin before flights or any other situation I may be sitting in one position for a while) have been left with minimal/manageable damage.