Thursday, 22 March 2012

Part 3: Out of the danger zone and the start of my recovery

A Ray of Hope

After having the IVC filter in I'm finally out of the danger zone and into the unknown recovery zone. I spent the next week and a half being moved every other day to another ward; I wasn't on the DVT ward because it was under infection quarantine. One of the problems that I had though was that the medical teams on these other wards didn't really know how to look after a DVT patient. Don't get me wrong though as they were perfectly competent at their jobs, gave me medication and the care I needed but they couldn't answer any of my questions so I had to wait until one of my doctors came round and put it to them. The respiratory wards I found were better as they had some dealing with pulmonary embolisms before and knew how much oxygen and type of care I needed for my lungs.

One of the things that makes staying in hospital bearable is the people you meet and make connections with. I met some lovely ladies who made my life easier and brightened up my day; there was one lady who would come and hold my hand whenever I had to have blood taken or a new cannula fitted, it was like having my mum or dad there telling me it would all be over soon and she would make everything Ok. 

A Couple of Tips

About a week later I was settling into a lung cancer surgical ward and a nurse comes over to me and says she just spoken to my doctor and has some news for me: my catheter can come out and I can start moving around! Best. News. Ever!! So I've got some tips on catheters while they're in and for when they come out:
  • It's going to hurt when they put it in so ideally make sure that you're not desperate for the toilet otherwise it makes it worse.
  • Ideally have it put at bedtime, that way you can sleep off the biggest discomfort.
  • If you are allowed to move I would recommend taping the tube to your thigh, this way you don't have to worry about getting caught or dealing with gravity and the tugging sensation you'll get when you stand up.
  • Don't wait until the measuring part is full (sometimes difficult at night), it will get uncomfortable and will feel really weird when they empty it.
  • When it's time to take it out continue to drink as normal as this reduces the chance of a water infection.
  • Have the nurse take it out at night time, this will let your bladder fill over night and also get over the discomfort. 
  • Be aware you may leak slightly and that's nothing to be embarrassed about, it will take your bladder a good few hours to return to its normal functioning pattern. If you are worried about leakage then just ask for an incontinence pad then you can sleep without worrying.
  • The first time you empty your bladder might be a little awkward and uncomfortable; I was desperate for the toilet and yet it took a long time for my bladder to release that it had to open and it stung too (the kind of sting you get with cystitis) but after a couple of toilet stops you should be back to normal.
  • Of course if you have any concerns speak to your nurse or doctor who will be the best person to advise you.
Another little problem you might suffer from being bed bound is constipation. The best combination I found was a little tablet called Senna which helps to regulate the bowels and also a powder (mixed with water) called Movicol that helps to soften the stool. Trust me, you'll need the softener if you haven't been for a week or so as passing a hard stool is really quite painful and distressing.


By now I was getting pretty desperate to go home as I had moved wards yet again and was getting frustrated at having to repeat myself and somewhat educate the nurses on my condition. I was given some crutches so that I could get to toilet and shower by myself but I was told that I couldn't go home until I could walk up a flight of stairs with them (living in a first floor flat this made sense).

So one afternoon one of the patients had received some physio and I caught one of physios walking out the door and made the passing remark of "can I be next?". Of course I was expecting them to say no as the doctor told me there was a waiting list but the lady came over and asked what was wrong and what I needed to do. She listened and said that she had a spare hour so she'd go over my notes and come back in a little while; 15 mins later two of them came back with a wheelchair.

The stairs of doom loomed in front of me: I had to get up and down 15 stairs to go home. Since I had only been walking for 12 hours I knew that I had no strength left in my left leg and that my breathing was still weak but I was determined to go home; facing that flight of stairs was like facing one of your worst nightmares, I was scared of falling and terrified of failure. The physio showed me the best way to get up the stairs (good leg first) and down (bad leg first) and off we went. It was hard work getting up there but with the encouragement and determination I made it up and down in one fell swoop and the collapsed into the wheel chair from exhaustion. 

Home Time?

Back in bed I slept for about 4 hours but yet again was woken up by my rheumatologist who had a great big grin on his face. Apparently the nurses had told him what I had just accomplished and he was super pleased, so much so that he wanted to send me home the next day! He explained that I was now stable enough and fit enough to continue my treatment at home and we could continue the investigations with me as an outpatient. Hooray!!! I made all my phone calls to say I was being discharged and everyone was thrilled.

The next morning my nurse came round with three huge bags full of medicine for me; painkillers, clexane injections (to keep my platelet levels down), antihistamines (morphine makes me itchy) and something for my bowels -they had also arrange a taxi for the afternoon. I spent the morning packing, saying goodbye to my new ward friends and then had a nap before lunch.

The taxi came at 3pm, got me loaded into the cab and then off we went. Being outside was a little strange at first, mostly just really bright though. I was home by 4pm and was relaxing on the sofa with my partner feeling great that I was home again where I could focus on my recovery in a nice quiet environment.

Yay for being home!

I'll be making regular posts on my recovery and getting back into my fitness regime. 

Here are the previous posts for part 1, part 2a, part 2b, and part 2c.

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