Thursday, 2 August 2012

Panic? Who, Me????

Well it’s safe to say I’ve been collared again. As my lovely blog followers will already know, I have been on a course of home intravenous antibiotics for the last two weeks, these worked well for the first week but I soon started to feel less well. I managed to get to the cinema for a date night with Luke on Saturday, this really was quite an effort but I was determined to do it having been pretty much house bound for the preceding few days. I’d also started to feel horrendously tight chested and wheezy, which was an additional symptom. So off to clinic I plodded,  knowing deep down I would probably be coming back up fairly soon. 

The journey through the dreaded Olympic London traffic was surprisingly easy and it only took the usual hour and a half for the hospital driver to get us to the door. Once at clinic I was weighed at met with the dietician... gained .2kg so up to 46.4kg and BMI of 19.7... going in the right direction.  (although in all honesty I was a little peeved that it wasn’t more of a gain as I’d been eating like a horse!) Then came my usual favourite moment (not)... the entry of the physiotherapist (not the problem, the Brompton physios are lovely!!) it’s that pesky lung function machine and oxygen saturation (SpO2) monitor they insist on carrying!! We had a jovial chat and catch up and admired the brand new SpO2monitor cum lung function machines that they now have to play with. Then she attached said monitor to my one finger clear of nail polish...the result was a tad on the disastrous side; 75% on 3 litres of oxygen. Hmm. We quickly whacked up my portable unit to 6 litres and my little lungs managed to drag the level to a measly 80%. At this point the physio ran out (reassuring) and returned with an entourage encompassing  a doctor, a nurse to take more observations and several other people. I was agreed that I should probably be admitted...(I was obviously a crying a bit at this point due to the amount of running and overwhelmingness of it all - not 'cus I'm a diva!). I also had arterial blood gases taken, which showed poor oxygen saturation and high carbon dioxide levels. Fortunately after a bit of patient shuffling I got a bed on Foulis, had bloods taken, an x-ray done and then made my way up to the ward. By now I had been given a hi-flow oxygen mask which meant I was getting 40% oxygen blown at me, but on the plus side my SpO2had been coaxed up to 85% on this which is still by no means ideal, but ok enough for me to get aforementioned tests done and drag self up to ward - I was of course offered a chair, but wanted to and felt able to walk.  As we had come up straight from clinic I did not have my NIV (Non Invasive Ventilator) with me, but the physios soon set me up with one and once I was breathing on the mouthpiece on it, with 6 litres of oxygen going through it (I only have 2 litres through it at home) my SpO2 sat at a much more acceptable 93%.
Goodness knows why I look so happy, but maybe it's that my Sats were better??!!
Thanks Luke! Taken at 7am when he returned to my side!

My x-ray has shown no new worrying damage (i.e. lung collapse) so this horrendously low O2 level is due to the constriction and wheeziness I had previously described, which is most probably caused by inflammation and infection. So the initial plan of attack is as follows... high dose Intravenous (IV) steroids twice a day. Hopefully they will reduce these soon as I am already feeling one of the rubbish side effects of these – water retention... my legs are beginning to resemble those of the Michelin mans, sexy! I’m also on 3 IV antibiotics one of which I’ve never had before, so hopefully that’ll scare the bacteria lurking down in my lungs! I’m having Timentin (4 times a day) Colomycin (3 times a day) and Ciprofloxacin (2 times a day). Today my SpO2 on the NIV has been 99% so the doctors have reduced the oxygen through it from 6 litres a minute to 4 litres. My SpO2  was 96% on this so that’s good. A small step, but a step in the right direction nonetheless. My SpO2 on the high flow mask are also better at 92% (at rest). They have also got me set up on fluids to rehydrate me. It’s going to be a long slog to get over this latest set back, as there are so many different combinations of things to try if one set isn’t working particularly well. The team have told me to expect to be in for 3 to 5 weeks, as there is no way that we could administer or monitor this level of treatment at home. But I am going to most certainly escape at some points, most importantly for a certain Miss Evans’ wedding later in August! 

Harefield have been made aware of my deteriorated condition and that I am in hospital. I still desperately hope and pray that the life changing call bearing the gift of a shiny pair of lungs will come! In essence that is what I am in dire need of now. I can come to the brink and be brought back from it every so often, but each time it now feels like I’m being pulled less far from the edge. I just can’t help but wonder where does the point where will that point I can’t be pulled back from come? Theoretically, I could have many more setbacks and if they are routine, be successfully treated and return home with an increased but manageable, or the same regime of treatment. However, I am realistic as well as positive and think that after this admission there is a good chance I will be going home with increased oxygen requirements again. I hope not, but I shall not be surprised. However, if I suffer from a particularly bad infection or cold I might not be so lucky. 

Needless to say I went to bed in a rather dejected state last night. (No Lukey to cuddle!) I was also continually disturbed as I had various IVs and fluids set up so I think the last bag of fluids they hung up which meant I could be left alone was 2 am! Luke and I decided that the best plan of attack was for him to go home and pack us some stuff and then come back super early. This meant he could also give the bunny, Azlan, a cuddle! (Oscar cat had already been collected by his Granny!) I was so thankful to find a bible in the room so took comfort in reading through it and just want to share some readings from the book of James which calmed me down somewhat. I make no apologies for sharing my faith here as this is a big part of my life and probably how I manage to remain so upbeat. I am not intending to force my views upon anyone, but feel that some people may feel the same sense of calm after reading these words! 

James 1; 2-4
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.
James 4: 14 -15
 14 Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15 Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”
James 5:11
11 As you know, we count as blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.
James 5:14-16
 14 Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. 15 And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. 16 Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

Catching some sun!!
 I will keep you posted as to how my stay pans out! Thank you so much for reading this. Most importantly though, please continue to share my blog and share the word regarding signing up to the organ donation register!!


  1. Sam, I love to read your blog posts - you are such an inspiration and encouragement. I pray that this stay in hospital with be soaked in God's presence for you - and continue to pray for that miracle that you need! He is able. Lots of love from the Royals x

  2. Sending lots of love and hugs and of course prayers your way, xxx

  3. Hey hunni :) I just wanted to comment to let you know that I love reading your blog!! I try and keep my blogs as positive as possible and I totally see that in your blog too, so reading your blog is like a breath of fresh air (which we could both do with, hehe!) There is always a positive spin on things and even when you aren't well, you seem so upbeat and determined, I love that, I get pretty fed up reading some other blogs, particularly others who are waiting for transplant that just moan and moan about how rubbish life is and it does my head in after a while! So yeah I just wanted to say keep writing and keep that gorgeous smile on your face hun :) Sending hugs and hoping you escape from hospital as soon as possible! xxx