Home IVs, Infected Lungs and Hernias

2020 has already had an interesting start. My chest has been really unpleasant as of late due to a really bad chest infection, probably a flare up of the deep-rooted one that colonised in my lungs about 4-5 years ago. Not exactly sure how long it's been brewing. Only that it never seems to go away completely or stay gone for too long. My asthma becomes more wild with infections as well so it's so important to get them under control sooner than later. So we decided to up the ante a bit and go for 2 weeks of Tazocin (piperacillin and tazebactam, 3 times a day via intravenous injection) home IV.

Home IVs are tricky. Depending on your preference, the district nurses can come and give you your injections or infusions as needed, or you can be taught to self administer. I personally prefer to self administer as I know how busy the nurses are and have always believed that if possible, one should manage their own care as long as it's safe to do so. Obviously the only thing they can't teach is how to insert an IV cannula yourself, that requires someone who is trained at venipuncture. Cannulation is the trickiest thing with me, my veins run for it as soon as the word "needle" is said and when they do get access, they don't like to keep it up for long and they collapse. So this makes it a bit more difficult. But still beats being in hospital.

On Tuesday last week, 3 attempts and a blown vein later, we got access but it lasted about a day before collapsing again, which meant a bit of the dose actually went in to the tissue of my arm, that was rather unpleasant. My arm bulged up like a balloon! Yes, that hurts as much as it sounds like it would, my left arm is bruised, very bruised. So Thursday morning we had to try again. This time we got one after 5 attempts and frustration for both me and the nurse. So we had a big decision to make. Go in to hospital and let them treat me OR go to Bromsgrove hospital on Friday and get a midline put in. We decided on the midline.

It was a first time for me to get one of these inserted. Basically a midline is a bigger, longer cannula that goes in to the upper arm where the veins are chunky and more reliable. For scale a normal IV cannula is about 2-3cm long, this thing is about 10cm long. To have one put in, you need to be in a clinical treatment room, complete aseptic environment. They use ultrasound to find the vein and they use strict sterile protocol (surgical prep, gloves, drape etc). The skin is numbed thankfully so it's not exactly painful, just uncomfortable and a bit weird. To be honest, I'm glad I went through with it, despite being a bit scared (yes it does happen and I do get scared when we have a new challenge to face) and needing a small Sephy plushie to squish (I took the mini one). It took 3 goes but when we were in, we were in and it's been so much better. I think this will be added to my protocol for home IVs now. 

I'm about halfway through the course now and it has helped me so much. I'm shifting the rubbish that's sat on my chest for a while and I'm a lot perkier. I know that I don't stay infection free for too long but I'm hopeful that this time it'll be a couple of months and we can get me as well as possible for my hernia operation. Speaking of, my hernia (called Fred-Bob-Jim) is still there like some kind of demented eyeball poking out of my belly button. It's so weird. It hurts too. So I'll be very happy when that gets a shove back inside my tummy where it belongs. 

Til all are one

Wendy xx

Hello 2020

My body. It is a strange, complex thing and it doesn't like to cooperate at the best of times. It likes to remind me that even if I love some kind of food, I can't eat it unless I was planning to spend hours doubled up with bloating, wind and the kind of "toilet" issues that can only be described as explosive. It likes me to know that my lungs are overly sensitive and liable to go in to bronchospasm at a drop of a hat. It tells me if my nerves are upset by making my legs flail about like a fish out of water and they're not supplying my lower body properly so I can't really walk anymore. I know my physical health is often a bit of a tightrope and I have so many different conditions that operlap and aggravate each other. Not to mention that I have mental health problems to boot.

I'm tired. But it's a kind of tired you can't explain. Not a tired you can sleep off or take medication that could fix easily. It's a complete, full body exhaustion. Your body feels like someone has replaced your blood with lead, it's heavy and dull. It's horrible. Its knowing that you probably won't ever get completely better and you have to keep pushing. You can't stop. You can't give up, even when it could be so much easier to. There's always going to be a number of bumps in the road and challenges ahead but you decide to power though rather than sit around and complain.

People think it's easy to be sick and unable to work. It really isn't. Many people can make a judgement about my life here but they don't really know. It may be hard to understand that having any illness is difficult. I spend a lot of time organising appointments with specialists, GP appointments, prescription orders (which with nearly 30 different meds can be hard to keep track of stock and quantity, especially some meds that I need varying amounts some days like salbutamol, the single most important medicine to me). I have a routine, taking certain meds at certain times as well as monitoring my conditions to catch any danger signs. My 'job' is survival. It doesn't run 9-5 hours. I don't get any annual leave or bank holidays. I live on PIP payments and ESA, which doesn't always guarantee anything as the state looks to cut state benefits further, for many disabled people like me, it's an uncertain future.

The last decade has been such a turning point in my life. It was around 2010 that I had to accept that I wasn't fit for work and that my asthma was getting more difficult to control and taking a toll on my body. I did feel depressed for a while, but I think that was truly my darkest time because I was just getting more and more attacks and not recovering. I remember doing my DLA (disability living allowance) form and feeling so down afterwards that my support worker at the time took me for a cup of tea before taking me home, but then I remember that summer and getting that award letter. I remember getting back paid and having a wonderful time.

My biggest aim was to not end 2019 stuck in hospital. I'm glad that we have gotten there. I'm incredibly thankful that I've managed to end the decade comfortable in bed and happy, 3 happy guinea pigs in the next room and with someone who makes me feel lucky to surrounded with love. When you have love, what else do you need? I am incredibly lucky that I have some amazing friends (who are more like the dysfunctional family I adopted) and family who are always there to support me when I need them and I can be there for them when they need me too. Not to mention those incredibly chubby and adorable little animals who share our home.

So, there's been a lot going on recently and it's been a bit of a curveball. We solved a mystery of what was causing those horrible abdominal pains I was having. I'm doing the this decade's first course of home IV antibiotics, which of course carries it's own set of challenges and issues. The worst of which was my veins. My veins are stupid. On Monday it took us 3 attempts to get in to one, then the thing shut down the next day... (I had gotten 3 doses in)... and inflated my arm. I have had that a few times and its's not pleasant. So when we tried to get in to another (5 attempts this time) we only just got one in and we ended up with me going up to the Bromsgrove hospital to have something called a Midline inserted.

For the people who have never heard of this, a midline is basically like a bigger IV cannula. It has to go in the upper part of the arm (above the elbow) and the nurse has to use both ultrasound and numbing to get it in. For comparrison, a regular IV cannula is about 2.5cm. This one has a tube that is about 10cm. It also requires a sterile environment to put in. It took 3 tries (because my body was never going to let us have an easy time was it?) and some rather impressive bruises but now it's in, it won't tissue as easily and will last my entire course. I have about 12 days left.

OK so, about the abdominal pain thing, so about 2 years ago, I started having weird pains in my belly, usually worse when I was using the loo or coughing. I put it down to pulled muscles. Well during my admission in October it was really hurting me so they checked it out. We originally thought it was my gallbladder. But it wasn't until Christmas Eve when I was having my wash and Jace happened to notice something looked strange around my belly button (It looked like a small lump emerging from it, very strange) and we got the doctor to have a look at it as soon as we could. Turned out that I have an umbilical hernia, I had one as a baby too but that settled down. What this means for me now is that I will have to have a small operation in which they will poke it back in, close the hole in my stomach muscle and stop it getting bigger and more uncomfortale or even trapping and becoming dangerous.

It's going to be a fun year. We also have plans for something pretty damn amazing but I won't say what just yet. Well a couple of things. So look forward to that!

Happy 2020 everyone!!

Until all are one
Wendy xx