Thursday, January 31, 2013

Hospital stay

So on the 5th January I moved house and felt like utter rubbish. That weekend I was extremely unhelpful in the unpacking of boxes, as it was a case of unpack half a box, occasionally a full box and then go sit on the sofa for 2hours and sleep. I was throwing up pretty much everything I consumed within half an hour of consuming it due to coughing so much. I knew I had got run down and needed IVs but had held off because of moving house. I knew I needed complete rest, so on Monday the 7th I rang the hospital up and asked for a bed on the ward for 2weeks to have my IVs in hospital instead of at home to ensure a complete rest. It wasn't an ideal situation with just moving house but I knew at the same time it was what I needed. I got told there was 1 other patient on the waiting list for a bed but they may be able to get me onto a ward the next day. As it turned out the bed didn't become available until mid wednesday afternoon, but I have known alot longer waits especially at this time of year so it was ok. The tuesday night, D took me shopping in morrisons, which required being pushed round in a wheelchair as I didn't have the energy or ability to get round morrisons without causing a massive coughing fit and throwing up again. We picked up a few snacks for me to take into hospital with me, and a few easy meal options for him whilst I was in hospital because he would be busy juggling work, A, unpacking and sorting the new home and visiting me in hospital an hour and a half away.

Wednesday we arrived at the hospital just after half 5 where I was shown to my room and David went and fetched all my bags in (I wasn't 100% sure the room would be ready and I knew the space I would be shown to sit in if it wasn't is really small and there wouldn't of been room for my bags!). So after the filling in of the various standard hospital admission forms my obs (observations- temperature, blood pressure, oxygen saturations, the amount of oxygen being pumped around your body, heart rate and respiration rate, the amount of times you take a breath in a minute) and they were pretty bad. My heart rate was sitting at about 120 and I had been sat down for over half an hour at this point, so could be classed as resting, my resp rate was in the 40s I believe, blood pressure was ok and my sats were at 94%. Now this last bit was the one that worried me as normally no matter how poorly I feel they sit at a very healthy 98-99% even on exercise, anything below 92% is classed as concerning. So they suggested I do a ventolin neb, see if that helped improve things at all if not they might like to put me on oxygen for abit. So I duely did a ventolin neb and another half an hour later they rechecked my obs, they hadn't improved, so they made the decision to put me on 2litres of o2 for awhile. It was at this point I started to think, ok maybe a tiny bit poorlier than anticipated but a quick blast of oxygen and I will be good. D also had to go home at that point, as it was getting late and he still had an hour and a half drive home, I told him I would text him and keep him updated.

My port got needled by a nurse who came onto the night shift at about 9pm, which turned out to be a very good thing as they then put me on IV fluids to try and help reduce the heartrate and everything. They also got my IV antibiotics started that evening, which was a bonus as I wasnt expecting to start them until thursday am when my actual team were at work. It turns out I was in for a very long night wednesday and managed to cause such great concern among the nursing staff that the critical care team were alerted of my status incase I needed to be moved to their ward (I remained on their radar until friday when I started to stable satisfactorily enough for them to leave me alone). I was on hourly obs, but I still managed to sleep pretty well through having a blood pressure cuff being put on and removed so often. I was spiking a temp and my sats dipped down to 89% despite being on the oxygen and IV fluids, so the oxygen was bumped upto 4litres. The other things I was aware of that night was an on call doctor coming in saying they needed to do a blood gas if that was ok (I was extremely sleepy and not really with it at this point so just agreed, vaguely somewhere in the back of my mind going NOOOOO they are meant to be really painful), however I didnt find the initial pain any worse than a normal blood test (A blood gas is taken from the artery rather than a vein and from on the inside of your wrist), but noticed the pain lingered for a little bit longer than normal after the needle was removed. Then sometime after that a portable xray machine appeared in my room and they wanted to take a chest xray whilst I was sat in bed. Ok fine, so they did that and then I was pretty much left alone again.

Thursday morning turns up and I was awake ridiculously early because of all the noise and kerfuffle that occurs on a ward. My consultant turned up at about 9.30am and asked how I was doing, I said I was alright (says the girl on 4l of oxygen and needing IVs) and they replied it seems like you caused some problems in the night. I said it didnt bother me I was just trying to sleep!! They also prescribed 24hrs of IV fluids as I was clearly in a state of severe sepsis and needed all the help I could need to get rehydrated and stop my body poisoning itsself. At about half past 10 my lovely physio turned up and boy do people know how to make you feel even worse. Everyone who saw me on thursday delighted in telling me just how rough I looked! We started trying to work out what was the best physio techniques for me to currently do based on my propensity of throwing up. I got to use an ultrasonic neb and then have a go on a machine called the 'bird' which connects to oxygen on the wall and uses positive pressure and kind of takes over your breathing and forces your lungs open wider than you could manage. Then the doctor appeared! Who told me that my xray in the night showed a pneumothorax in my right lung and it may need a drain inserting to fix (a pneumothorax is a collapsed lung, and a drain put in can release the trapped air and allow the lung to reinflate), however he hadn't actually looked at the xray himself yet so was going to do that now. On examination of the xray there was a pneumothorax but they wanted to do another xray before they decided on what plan of action to do as it was quite small. So I got taken to xray at about 3pm and this xray showed that the pneumothorax was larger again, but overall when looking at the size of my lungs it was still a relatively small one. This is where I was awkward because it was right at the top of my lung right behind where my port-a-cath sits and I hadn't presented with any of the typical symptoms of a collapsed lung (sudden sharp stabbing pain, sudden breathlessness even on resting). This may have been because I had been feeling so crud for so long that my body had naturally started to adapt itsself, to be able to still do things, albeit it at a slower pace so I didn't get breathless. I'm also pretty certain it was thursday night that the portable xray machine got brought into my room for my 3rd xray within 24hours. Thursday I also got placed placed onto high flow oxygen as some research had shown this could help reinflate the lung without having to insert a drain.

Friday morning another xray was taken and there was no difference in the size of the collapse so I was taken off the high flow, as this can cause dehydration (remember I am still trying to get myself out of severe sepsis at this point due to dehydration), and instead put on humidified 28% oxygen which is 5l, as the ordinary unhumidified oxygen can dry out the nasal passages and cause problems of its own when you are on 4l.

Friday afternoon the decision was made to have a drain fitted under xray guidance to get the collapse fixed. D was with me at this point and I may have had a little cry but agreed to it as the doctors were saying it was in my best interests. I ended up going down to radiology at about 6.30pm when it was the on call doctors available only. D left to go home at the same time as he couldnt come with me, and I knew after it was done I would only want to be left alone to rest and sleep but promised him I would call as soon as I was back on the ward. So after half an hour in radiology of the on call radiologists trying to work out which place was the best place to enter to insert the drain, using both ultrasound and xray images, they decided that the risks of inserting the drain outweighed the benefits I would get from it and refused to do it. They were really sad and apologetic that they couldn't help make me feel better but there own words were "it is too close to important blood vessels, your port and nerves that if we accidentally catch could paralyse your arm so I dont feel confident enough to attempt it", I was pretty happy to be left alone! So one of the radiologists took me back to the ward (he wouldn't let a porter take me) to explain to the nurses on the ward what had happened whilst I was in radiology.

Friday I also saw my dietician and discovered that in the last 3weeks I had managed to lose 11% of my body fat (not good in a person with cf), which equated to a whole stone! She was extremely concerned and floated the idea of starting overnight feeds using an ng tube to help get more calories in and regain the weight and maintain it, as it would also be full of protein which my body also needed to repair the damage. The rest of the team all agreed this was a good idea but I was still coughing too much for that to start until after the weekend as I would of just brought the tube straight back up again (not a pleasant thought).

Saturday I got to take another daily trip to xray. By this point I hadn't had a shower since wednesday morning and was actually starting to care, so my mum agreed to visit sunday am so she could help me have a shower as I was attached to oxygen and still to the IV fluids (thats right the ones that should only of been 24hrs, was actually connected for a whole week as I kept getting low blood pressure issues, so another 10hr bag of fluids would be prescribed).

Sunday morning I managed a shower and spent the rest of the day doing not alot else as it had completely wiped me out.

Monday proved to be an exciting day for me as the physio decided she would take me off the ward for a walk, with a portable oxygen tank. I was very excited, it was the first time I was leaving the ward under my own steam (I had only left for my daily trips to xray in a wheelchair) since arriving there wednesday evening, so 5whole days ago. Admittedly I didnt get far until my chest started to hurt and my legs ached from lack of use (about a 100m) but I managed a walk and even better I got to see D in the evening as well.

Tuesday a friend visited and I was also waiting for the results of another xray. However this xray was going to determine whether they would be inserting a drain under ct guidance as all previous xrays had shown no change in the size of the lung collapse. In the afternoon about 4pm, I finally received some good news, the collapse was slowly fixing itsself as the air was being reabsorbed into my lung and it was reinflating, so no drain was needed-yay!

My days continued to pretty much continue in this manner. Wednesday was the first day I managed to successfully pass an ng tube and I was started on overnight feeding. Over the course of a week I moved from 50ml an hour over 10 hours (500ml in total and 750calories) to 75ml an hour over 10 hours to the full whack of 100ml an hour over 10 hours (1000ml in total and 1500calories). I passed the ng tube every evening and now after 2weeks is almost a pro!

I finally got off the oxygen on the friday as the lung collapse was resolving itsself slowly and they wanted to see if I could remain stable without it.

the 21st was a bit of a bad day when I was told that I would have to spend the next 6weeks doing nothing strenuous at all and lots and lots of rest to enable my body to fully recover. As for a normal healthy person to have gone through what my body has could take upto a month to recover, so I should expect mine to be longer. This was a bad day because it came with the realisation that I wouldn't be able to do the gangshow I had been rehearsing for since September, as a 2.5hr show 6 nights a week of singing and dancing was considered as too strenuous. I was gutted and spent the next day or so crying randomly at the little things. I hadn't really cried at all up until that point. I think it was because I was too busy being really poorly I didnt have time for emotions, but now I did!

On the 24th (day 15, so now into week 3 of what I had originally hoped to be a 2week stay) I received the good news that my pneuomthorax was now classed as resolved! Woohoo, lung all reinflated. However since this day I have been getting some pain in that area when I do anything remotely strenuous, which everyone is telling me is normal as its my lung still fully sorting itsself out and is a good sign so not to worry.

I was finally allowed out of hospital on the 28th Jan (day 19), on the understanding and promise that I rested and didn't do anything that would stress me out for the next 6weeks so that I could fully heal. I was just so happy to be getting home :D

My parents visited pretty much every day only missing a couple because of bad weather and the fact that they went away on sunday (the day before I got out of hospital) for a holiday they had booked last January! D visited every mon, wed and fri and one weekend night as we agreed because it was a long journey for him to make every day with work as well. I also had various family relatives turn up with my parents and a couple of friends also made the journey to see me whilst I was in hospital which was nice.

Below are a few photos of my hospital stay:

 This photo was my first night in there, very poorly indeed!

Below are some photos of my meals during the stay (I managed to clear my plate 4 times out of a potential 57 meals! I was on a red tray system, which told them I had a reduced appetite and they weren't to overload the plates and put me off eating completely).

 Some get well cards from family:

 First ng tube I had passed (sent this photo to my mum, as they knew I was trying to do it)
 A photo showing all 3 of the tubes currently connected to my body in one way or the other (ng tube, oxygen and port line):
 My 2 faithful friends: IV fluids and overnight feed:
 Feeling very happy, oxygen had just been taken away:
 boo, a slight blip, meant i had to go back onto 2l for a couple of hours, but looking a lot healthier in comparison to the other photo which shows me wearing nasal cannulae:
 On my pipe (ultrasonic neb):

So to summarise, I went into hospital with a pneumothorax, severe sepsis and extreme weight loss. I went through alot during those 3weeks including starting 5 new medications/treatments (all of which have come home with me) and come home in the recovery stages and just some weight to regain.

January 2013 was not the best of months but here is looking towards February and starting my life living with my fiance and enjoying everything this has to offer :)


wow Christmas seems so long ago now, its almost hard to remember what I did.

Christmas day was spent with my family, there were 13 of us around the dinner table!

Boxing day I went to my fiances house and we opened our presents from each other.

New year was spent in wales with D & A. we had a great time and A got throughly spoilt with loads of presents and treats over the few days we had him.

We managed to go and see some of D's family as well while we were there as well, which was nice. Especially because 1 of them hadn't seen A in nearly a year.

Wednesday, January 30, 2013


Apologies for lack of blogging but after christmas I moved house and then spent 3weeks in hospital.

Will update properly when I am on my own computer so I can add the photos in I want to.

Hope everyone else has had a better start to 2013!