Recovery

Sorry I’ve been so slow in telling this story, I’ve just been utterly exhausted and a bit all over the place so it’s been difficult to set my mind to writing. 

As I said in my last post I was discharged from hospital once my swelling started to plateau – I was about 94cm round and 70kg when I was discharged.  Here’s a picture of me the day before I was discharged from hospital.   It’s difficult to really do the discomfort I was in justice with a picture because it just doesn’t look as dramatic and painful as it feels when you’re experiencing it.  All I can say is that normally I’m a size 8 to 10 and have a nice slim tummy and this swelling had  come up in a matter of days with no time for my body to adjust.  I found it a little frustrating when people kept comparing it to be heavily pregnant even though I myself might have slipped into doing that occasionally.  Unfortunately I’ve never been heavily pregnant to compare the 2, hopefully someday I’ll be able to, but I’m pretty sure that in pregnancy though uncomfortable and sometimes painful you’re body does at least have time to gradually stretch rather than just being swollen over a couple of days which puts an immense amount of pressure on your internal organs.  It felt almost like when people compared it to being heavily pregnant they were belittling my pain a bit as if somehow if people manage being heavily pregnant what am I complaining about.  I felt like I had to try and get across to them just how painful, distressing and scary the swelling was.   Also it wasn’t just that my abdomen that was very distended at the front, my hips were also extremely swollen, my back was swollen and the day after I was discharged I woke up to even find my groin was swollen, I won’t go into the details of that but needless to say it wasn’t  a pleasant experience. 

Home from Hospital 

My Mum took me home from hospital about 4 pm and the plan was for her to stay with me for a couple of days.  I’d just got myself settled and resonably comfortable with lots of pillows and everything at hand that I needed when my Dad rang to tell us that my Grandma had had a massive stroke.  On hearing the news it took me a while to pull myself together, I felt like I was hyperventilating because I just couldn’t deep breath properly and I just couldn’t believe the timing of it all.  What was even more upsetting was that I’d been meant to go for a meal with my grandma the previous week for her birthday but I hadn’t been able to as that was when I started getting unwell so I was very upset that I had missed that opportunity.   My Grandma was 94 and living in a care home and previously documented her wishes not to be taken into hospital in the event of anything happening to her and the care home kept to her wishes and planned to nurse her therefore her final hours/days though we didn’t really know how long that might me.   

 

I was desperate to see my Grandma but knew I had to pull myself together and make sure that I looked after myself as well as the last thing my Grandma would have wanted was for me to make myself more unwell in the process of going to see her.  So I made sure I had something to eat, took my medications and organised myself properly before I went but unfortunately when I went to get dressed I realised that other than an old pair of jogging bottoms I had no trousers that fitted me and only one my tops fitted,  I couldn’t wear a bra because the swelling was really high up and it was too uncomfortable but luckily I had some tops with some inbuilt support that helped a lot.   I didn’t know what to do.  I put on some jeans but couldn’t even do the zip up let alone the button.  Luckily a friend of mine who has recently had a baby lives on the way to visit my Grandma so I phoned her on the way and she found me some maternity trousers and tops.  I turned up on her doorstep with trousers that wouldn’t do up and no shoes on because it was so painful to bend to put my shoes on I couldn’t bear to put them on only to have to take them off again!  Her husband got home from work just as I rang to doorbell and I can just remember saying “There is a reason I’m on your doorstep in my socks with clothes that don’t fit”  I was almost in hysterics at this point it kind of felt like if the situation wasn’t so awful it would be funny.   The maternity trousers were amazingly comfortable and it was such a relief to have something to wear.

I managed to go and visit my Grandma that evening and I was very glad that I did despite the massive effort that it cost me.  As this transpired she went on to live another 10 days so I had other opportunities to go and spend time with her but of course we didn’t know that at the time and I wouldn’t have been able to rest that night without seeing her.  Fortunately Matt was already in Cromer picking up our dog who’d been staying with his parents while I was in hospital, so my Mum took me over and Matt brought me back.  By the time I got home my mind just felt completely and utterly fried, like I couldn’t possibly take in any more information.

Gradual Recovery 

The next few days were spent gradually recovering. Luckily a very good friend was able to come and sit with me the next day and keep me company as I didn’t feel my Mum could now stay with everything going on with Grandma.  I was discharged on codeine and Paracetamol and I found that over the days the amount of pain I was in gradually improved so I could ease down first on the codeine and then the Paracetamol.  I was still incredibly uncomfortable but it was gradually more discomfort and less pain, I guess this was because my body was able to adjust to its new size a bit and accommodate the amount of fluid I was carrying.

I spent a few days at home but Matt also shipped me off to my parents for them to look after me for a few days as he needed to sand and varnish our floors and wanted me out of the way of the mess and the fumes. One note – I wouldn’t advise starting a big DIY project in the middle of a round of IVF, but of course at the time we didn’t realise I was going to get so ill.  

This is a picture of me a few days after discharge from hospital when I was staying with my parents.  This wasn't the swelling quite at its worse but perhaps deomonstrates just how swollen it was a bit better than the other picture.  you can see I was even carrying a lot of fluid round my back as it had nowhere else to go!

I came to dread the night times, I absolutely couldn’t lay on my sides because that was really painful, I think because all the fluid moves and pulls everything to the side. I couldn’t lay flat because the fluid would press on my diaphragm and make my breathing even worse. So I slept proped up on a folded up duvet and lots of pillows but even so, laying down meant the fluid shifted and every time I stood up I got this horrible feeling in my abdomen as all the fluid redistributed itself.   I had to keep getting up to go to the toilet and every time I did it was an enormous effort.   Getting going in the morning took me a good hour of psyching myself up to get up, gradually going through the effort of moving, having a shower, getting dressed and attempting to find something I fancied for breakfast.

Monitoring 

 

I went back to the hospital for blood tests a few times after my discharge, I wasn't safe to drive myself so kindly a friend from church came with me for the first lot and my Mum took me for the second.  The first lot of bloods showed that my liver function was deteriorating slightly though my other parameters – kidney function, blood clotting etc. were ok.  I wasn’t overly concerned about this as I felt that this would soon improve as my symptoms improved.  So they sent me off again and I went back after another 3 days for more blood tests (though this time I was sensible enough to get them to give me the form in advance so that I could get one of the phlebotomists to take the blood, go for a cup of tea and they had the results by the time I got there).  By this time my swelling was beginning to decrease and the bloods showed that my liver function was beginning to improve.  This time however my blood clotting was a bit off and my platelets – involved in clotting – were raised.  This was a bit of a concern as you have a increased risk of blood clots with OHSS, I’d been discharged on blood thinning injections but these were coming to an end and the Drs feeling was that despite the platelets going up I could stop these injections.  I wasn’t entirely happy with this and pushed her to ask her senior again whether I should be on aspirin or something, on the second time of asking she came back and said her senior has said ‘why not’ to aspirin. I didn’t find ‘why not’ particularly reassuring but didn’t feel I could push them any more.  They didn’t want to see me any more at the hospital but said I could come back if I had any concerns.  This lack of further monitoring combined with the issue about the blood clotting worried me so as soon as I got back I made an appointment with my GP.

'Oh you're that person' 

 

You know you’ve got something unusual when you go into you GP and say ‘I don’t know if you’ve had a chance to read my discharge letter but I’ve recently been in hospital with Ovarian Hyperstimulation…’ and the GP says ‘OH, you’re that person!’   My GP was a little bit put out that the hospital had handed things back to her and I could see her point as they’re the experts in managing this condition.  She was excellent though and advised continuing the blood thinning injections, repeating my bloods and reviewing again in a week and she was going to speak to the consultant at the hospital to discuss further management.   I was reassured by this and it was a good job I continued on the blood thinners as the next day my bloods showed my platelets had gone up even further.   

Gradually Improving 

So to sum up the last couple of weeks since my discharge from hospital;  My swelling is gradually decreasing, I can actually just fit in one baggy pair of my own jeans now though I still have a hard painful lump on the left side of my abdomen in addition to intermittent pains of the right. I’m not sure why my left side is worse because my right was the initially more problematic side and was the one that had bled slightly.  My pain in much better and I can now manage with only an occasional dose of Paracetamol, for a while I was still getting the intermittent really debilitating pains which I think were to do with my bowels but those gradually got fewer and further between.  I’m still sleeping terribly though for the last couple of nights I can now lay on my side which does help. I was a little concerned for a while that I might develop a chest infection as I got a cough and was beginning to bring up, with difficulty, a bit of sputum, I think this was the result of being unable to deep breath properly for about 2 weeks – I spend a good part of every day telling my patients how important it is to deep breath and now I’ve experienced if first hand.   I’m still on blood thinning injections – just when I thought I was free of injections after the IVF and wearing my compression stockings to help prevent deep vein thrombosis at night.  My energy levels are gradually improving though I still find basic tasks exhausting.

My main ongoing issues are the blood clotting, this painful lumpy area on the left hand side of my lower abdomen, energy levels, sleep (oh for a good nights sleep).  I’m hoping that I may be well enough to get back to work before too long but need to discuss that with the GP tomorrow as I don’t want to risk doing any damage with heavy activity if my ovaries are still enlarged – there’s just a small chance of rupturing one!  The other concern of course is whether the IVF has worked which of course I’m being deliberately vague about because with everything I’ve had going on it’s really too early to know exactly what’s going on in there so we’ll have to wait and see and hope and pray.