Portable O2 and Hickman Lines

Today I went to see my respiratory consultant. He has been my doctor for over 15 years so we know each other well. I've approached him many times before regarding a portable oxygen supply. He is always so reluctant because he says if I have access to it portably, I will be reluctant to go to hospital when my breathing is bad which can be life threatening. But with my recurrent emergency admissions it seems ever more pressing an issue. 

I took Sean with me. I was worried about this as I didn't want to over-emerse him in my medical world. I want him to get to know me for me before he has to confront all that's wrong with me. But it seemed important to have him there as not only support but also so as he could tell my doctor what (in his experience) happens to my breathing when I sleep. And of course what he witnessed on the day I had to go to Resus recently. It's difficult for me to recount those events as I was largely unconscious for the majority of it. 

My doctor did listen and to my surprise immediately agreed and filled in the application to get me some portable O2 albeit only a bottle to carry rather than the re-fillable liquid supply. But I was happy for that alone. It gives me a lot more freedom to be able to travel in the knowledge that it buys me time if I am any distance from a hospital. 

Another very important thing I wanted to discuss with him was the option of a permanent port of some kind. As you may or may not have read from my previous blog posts, I have absolutely no venous access any more, thanks to years of medical intervention. He was concerned, as they always are about the risks of this getting infected. And also said he was worried about the cosmetic appearance of it. I told him straight out, I was at a  point where cosmetic factors no longer matter to me. Just to have the relief of not being stabbed multiple times with a needle would make my hospital admission so much more bearable. Alas, he agreed but my relief was short lived as he said he would have to consult the big guns at the Royal Brompton before he could formally agree to go ahead with a Hickman line. My heart sank as soon as he said that. I know the Brompton will never agree to it. I expressed this to him but he seemed not to be listening any more. Perhaps I'd filled his concentration quota for the day.

I find it all so hard. I seem to spend my week, every week, attending medical appointments. Never getting anywhere. Always fighting for what I need. Never getting it. It's pretty soul destroying. I hope if nothing else, he will at least send off the O2 request for he promised he would. He's been known on numerous occasions in the past to forget, or change his mind at the eleventh hour. My philosophy has become:

'If you don't get your hopes up too high, you don't have so far to fall when they let you down'.

Gastro Surgeons

Today I attended the dreaded gastro-surgical clinic appointment up in London. The last few times I've been have been nothing short of a nightmare. I've been pushed from pillar to post for years now as no one wants to take responsibility for performing my surgery. This is because they have so many concerns about maintaining my airway during it. This drives me nuts because its not like I don't spend loads of time going under emergency anaesthetic as it is. And (although granted I know emergency anaesthesia is life of death), they seem to be able to get a team together in quick time to sort me out then. Why will no one sort this out?

Bottom line is... I've had GERD for some years now. Which in itself isn't earth shattering stuff. But because I have the tendency to aspirate my stomach contents into my lungs - leading to pneumonia's and all sorts of nasties, I need this operation called Nissens Fundoplication. Its a procedure where they essentially create a tightening around the sphincter of the stomach so that it doesn't reflux the stomach contents up. In most 'healthy people' the sphincter does its job, unless you are a premature baby and its not developed yet, or elderly and its just lost its ability to contract. But due to lots of different reasons mine doesn't do the job it should and consequently I need the surgery - ASAP.

Today's appointment was very different. After being told my doctor had left (they forgot to tell me!?)  I had to start all over again with a new doctor. I wasn't too impressed and thought 'here we go again, may as well go home and not bother'. I had a bit of a wait in clinic but eventually was seen by a doctor who was truly the most capable doctor I've seen in this area. He was keen to listen to all my concerns and really apologetic for all the hassle they'd caused - though it really wasn't his fault. He spent ages making phone calls and made real commitments for things to be done to help my case. I felt strangely reassured. I usually don't hold out much hope for these guys because more often than not I'm let down by false promises. But he seemed really keen to make some progress with me. He is sending me for a bravo capsule examination. They've previously tried to send me for this but it has been cancelled at the last minute as yet again 'no one wants to be responsible for protecting my airway while they do the investigation. So a specialist theatre slot needs to be arranged and a different hospital. He has put the wheels into motion so lets hope things start to happen from here. The dude even gave me his email address and said if I didn't hear in 2 weeks then I should email him directly. How many doctors say that?!!?! If I can get this surgery to go ahead my life will be better by far. No reflux = no/very few, minor aspirations which means my lungs will be much happier :)

On A Positive Note - Rare for me I know!

In lighter news.... boyfriend called tonight  before he fell asleep to tell me he's fully behind me no matter what. Brought a big smile to my face as I'm always so worried and scared to get close to people incase they decide my health is too much to cope with. Meant a lot to me. xxx

Bones being drilled and Resus

Well as predicted I didn't last much longer than my last blog before the inevitable happened. My boyfriend was keen to get me into hospital so that they could check what was causing my breathing problems. I tried to argue that I was fine for some time but I wasn't going to win that fight, and in the end I relented. I managed to get to the hospital easily enough using my oxygen in the car. It was the short (20 or so step) walk from the car park to the emergency department that really caused things to deteriorate. I sometimes under estimate how ill I am and forget that the little things that I usually take for granted such as walking to the bathroom or simply brushing my teeth can be absolutely exhausting. 

Once we arrived there was a huge queue to clerk in at A and E. I had to tell Sean that I couldn't wait and he needed to tell the clerk right away that I needed help. This got me a lot of angry looks from other patients but I was too sick to care. The clerk said she'd call someone and whilst we waited for what seemed like an eternity, I could feel myself getting more and more breathless. Sean was holding my head up and kept reminded me to breathe. Finally two emergency doctors came out. I am told they saw how blue and poorly I was and so one of them and Sean carried me in. I don't remember any of this. Apparently they were ready to move another patient onto the bed in the resuss room but when they came in with me, there was a mass panic. I am so glad sometimes that I don't remember these things.

The doctors had to breathe for me with a bag and struggled to get an IV in to give me adrenalin to keep my heart going. Unfortunately after years of repeated hospital admissions I have little to no accessible veins now. Usually this would mean I end up with a central line but this time I woke to find they were using a drill to bevel into my tibia and through to my bone marrow to draw blood and give medication directly into the bone. This is a last resort, usually used in babies and is only used in resuscitation situations (intraosseous infusion). I don't remember much but remember being awoken by an indescribable pain. It wasn't like anything I  could have imagined, like something I wouldn't think it possible to feel. I had 8 doctors hold me down whilst I screamed. 

My PCO2 was really high which means I was dangerously ill, I was retaining carbon dioxide as my lungs weren't letting me get rid of it. This is what made me so blue and ill. 

I waited a long time to speak to doctor as once they had stabilised me they went onto other cases. This left me quite distressed as such a big thing had just happened to me and there was no one to reassure me or even explain what was happening.

I am really upset that I have had to have this pin drilled into my bone. I have been talking to my respiratory team for years now about how I need a port so as I don't have these difficulties with getting access to veins. Now this has happened it feels even more crucial. I cant help feeling I wont get anywhere when I ask again though.

I had a further turn for the worse whilst I was on the ward. My lungs got really constricted and I had to be given IV meds and high levels of oxygen, nebs and lots of help from the ITU team. I was adamant I didn't want to go up there as they aren't the nicest team of people. I put this down to them dealing with unconscious people all day who aren't able to answer back.

I think I have officially terrified the new partner I'm with. As my dad says, 'now he's been through the 'Gemma initiation', it can only get better from here'. So I hope that's right and that's the worst he'll see, at least for a while.

Looking like this is never a good sign

Holding off on going to A and E and have big plans this week a really need a break.

I think my lips have different ideas, I'm turning bluer by the hour so I guess at some point I'll have to give in :(

Lungs interefering with a date - Not a great start

Well what do y'know.... I am writing this as I have just spent a night in resuss with breathing problems. This is a very common occurrence for me. Less common is the passing out that came with it. I was with a guy I have just starting seeing when it happened so it was totally soul destroying to have him see that so soon in the relationship. I was hoping I'd have a couple of months to gently tell him about the complications I have but it seems fate had other ideas! As you would expect, he panicked and called 999. Que - ambulance arrives at 1am and they too panic. I was very blue and really struggling with my breathing so it's understandable. I had been feeling pretty bad since physio that afternoon. The PT did percussion on me, they do it a lot harder than I am used to. This is great for moving secretions but when you have naff lungs it makes them susceptible to collapse and I figured this was what had happened. It wasn't too bad at first, just uncomfortable, but as the evening progressed things got worse. And as is standard for me, I just ignored it, trying to delay the inevitable trip to hospital to get it sorted. I, like most people with chronic health problems tend to leave it until the very last moment as hospital is not a great option for me. I spend more than enough time there as it is, stuck on trolleys in A and E and then on a ward or ITU for weeks on end, so I try to put it off if I can. More often than not this only makes for more problems.

I arrived in Resuss and they were pretty clueless. I was in no state (as is standard for me) to tell them what my condition was or what medication I take, which specialist I see etc. So they were working kind of blind. But the blind panic they so often display doesn't do wonders for anyone with me who is less familiar with the condition. The guy I've been seeing was pretty freaked out by it all. Not exactly a turn on, seeing a girl half dead and blue.


I had my x-ray and gases taken. My x ray never looks too bad, my CT is a different story however. So the doctors hysteria was somewhat quelled when they thought the x ray wasn't too bad. My gases were a big worry for them, but I know what's normal for me and I just wanted to go home. I was totally pissed off that my lungs had decided to play up when I was on a date and just wanted to bury my head in my pillow at home. So I took my own discharge - I know, most people think that's crazy and asking for trouble but I spend a lot of time in these places and really just wanted to get out.


I feel I have so much to get done at the moment, so much so that I don't have time to acknowledge my health. I want it to bugger off - just for a few weeks. Just so I can get some stuff under way. I am meant to be going on a course soon and being in hospital will ruin my chances of going on that. Also I have cake orders to fill for the business I am try to grow (slow as it is) and I promised I would go with mum to the West End next week to see Ghost (a gift I bought her for mothers day). Just so fed up of always being the cause of things being cancelled or rearranged. For once I want everyone to get what they want, just as planned, without my lungs throwing a spanner in the works.