Living with a PID

Yesterday I gave a speech to a home delivery company so they could understand more about what living with a PID is like.

It was a brilliant day and as I am all for raising raising awareness of what it is like to live with an immunodeficiency I was happy to do it.

Whilst I varied my speech as it went below is the basis of what I said. I didn’t want it to be too long as I felt it was better for the attendees to ask me questions at the end so they learnt what was important to them

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Living with a PID

From my birth I was always ill to the point where social services were called but eventually I was diagnosed with Hypogammaglobulanaemia as a baby. I was the only child at the clinic until I was 6 or so. At the time there was no paediatric centre at my hospital so I had my infusion surrounded by older women and men in their 80s although looking back now they probably weren’t that old. The fellow patients would help mum keep me amused during my infusion with challenges like “eat a packet of crisps without making a sound.

I received intraveous infusions of immunoglobulin at the John Radcliffe until I was 7 or 8 when mum learnt to do them a home. The John Radcliffe was one of the first hospitals to offer the chance to infuse at home which meant mum and I didn’t have to travel to Oxford every few weeks. Aged 18 I then learnt to do subcutaneous so I could do it easily myself at home and then at university.

I’ve been with Calea for over 20 years on and off having my immunoglobulin and ancillaries delivered to home. I currently infuse 80ml of subgam each week into my stomach, although with the change to cuvitru this will reduce to 60ml.

I know a lot of people continue with the normal activities when they infuse but for me it’s a proper excuse to sit and relax at home on the sofa. However when I was younger I didn’t let infusions stop me from enjoying life, in fact there is a photo of me lying on a lilo in a gorgeous blue pool with my infusion dripping in to me whilst I floated.

The nurses who look after me would hate to know that I regularly infuse with my little dog lying asleep on the sofa next to me. For hygiene reasons pets are meant to be in a separate room whilst you infuse but mine hates to be apart from me so doing that would mean an hour of listening to her crying which would probably make me more ill from stress.

Understandably a new diagnosis of a primary immunodeficiency can be daunting but I work part time for Primary Immunodeficiency UK answering enquiries and helping newly diagnosed patients with questions they may have and hopefully easing some of their worries.

I think it is especially worrying for parents of newly diagnosed children but I hope through PID UK and mine and Susan’s work, the facebook groups UK PID Patients and UK PID Carers which I set up these parents can see how others are thriving since their diagnosis and with appropriate treatment and this hopefully allays their fears a bit.

Pain relief

I know there are several things patients can now use to help make their infusion easier and it less painful when putting in the needles but for me it will always be about EMLA cream, a topical anaesthetic cream I used until I was about 22 on my stomach when I started infusing subcutaneously and again aged 27 when I started trying to infuse into my thighs which I finally realised wasn’t ever going to be successful.

When I infused intravenously from when I was diagnosed, I used EMLA until I was about 14. I now go through phases of having to watch a cannula go in if I’m ever at the hospital and purposefully not watching. If the person inserting the cannula hasn’t listened to me about where to stick the needle I am going to watch as I know they will mess up. I know my body and my veins so if you stick a needle somewhere new then chances are it won’t work. I ABSOLUTELY CANNOT watch other people have needles stuck into them and although I am an avid fan of hospital programmes I will use the dog as a shield if anyone requires an injection or anything like it.

The other product I have heard a lot about aside from topical anaesthetic creams is Buzzy. Buzzy is a reusable device that confuses your body’s own nerves and distracting attention away from the needle pain, dulling or eliminating it. I think this is a brilliant idea for adults and children alike, especially those who dislike needles. A lot of parents of PID children use Buzzy each week to start their infusions without it being a problem and I definitely wish it had been around when I was younger as I think it would have saved the bucketloads of tears I used to cry.

As with most thing the thought it always worse than the actual process.

How I’m Affected

When you tell people that you have a PID the first thing they wonder is whether it’s related to HIV so you have to explain that it is caused by changes to your genes and is not contagious.

The next biggest issue is people not realising how even with infusions it is important for patients to not be near or even in the same room as those with contagious illnesses and that even colds can have a major effect. I have a friend who has CVID as the end of January has had rhinovirus for three months. So she had a cold for three months and the antiviral drugs made her feel horrendous on top of this.

In January I developed a cold and having seen my Immunologist a week ago she told me I shouldn’t have left it to just go away after 4 weeks but been on antibiotics rather than risk it.

If someone has a virus or has had one I will ask them to stay away from me so I don’t catch it and I will be unapologetic about it when I do.

A lot of people also don’t realise that being immune deficient can open you up to a lot of other illnesses which can cause you major issues more than just getting ill. My biggest issue (aside from not being able to walk properly) is fatigue and I know this is something that affects a lot of patients with lifelong chronic illnesses. I generally need to sleep about 11 or 12 hours a night (which is why I stayed here last night) and if I don’t I can often not get through the day without a sleep.

I have to plan my days and if I know I am going to have a busy day one day then the next one needs to be empty so I can sleep if and when I need to.

Luckily I have some amazing friends who will happily adjust their plans if I’m tired and it definitely proves that the most important thing for me coping with a PID is to have brilliant friends and family.

Whilst I could go on and talk further about being a PID patient I think the best thing for everyone would be if I attempt to answer your questions so you learn about what you want to know about so please ask away.”

Huge thank you to Calea for inviting me.

If you have any questions from reading this please do drop me a line and ask me, I would rather people ask me questions than make their own, often wrong assumptions. I hope the above gives you a bit of an idea of my life.