Drew is 27 years old and one of Immunodeficiency UK’s patient representatives. He has Common Variable Immune Deficiency (CVID). This is the text of his inspiring talk and thoughts on living with PID that Drew gave at the North West Patient Meeting held at Haydock Park on Saturday 15th November 2014. His talk is about living a normal a life as possible with PID.
Today I am here to talk to you about living with an immune deficiency and achieving a normal way of life. Now I want to make this clear from the outset, I am not here to give you a list of dos and don’ts about how to live your life…I am here to talk about how I have personally lived and my thoughts on the matter. Also what I am referring to is the immune deficiency element only, not a combination of conditions like bronchiectasis – which I do have by the way.
My story is much the same as any other PID diagnosis, very sickly child, became critically ill, in fact I nearly died, but was then started on IGG replacement therapy, recovered from circling the drain, and that led to my diagnosis of CVID. That was over 18 years ago, since that point in my life I have worked hard with my health teams (as I have lived in three different cities) so I can live a normal life. Not a ‘Normal Life’ with inverted commas, I mean a real normal life, getting my education, working full time, seeing the world, playing sports and lucky enough to get married. The concept of having Immune replacement therapy is so that we can live normal lives, not struggle through hanging on in between illnesses.
My first point. What treatment suits you best?
Over the years I have met many different people with even more different views on this. Some who love IVIG treatment as they only think about their condition one day a month, and leave it all in the hospital. So the pros: less needles, one month protection. However whole day lost traveling to home and being treated at the hospital.
That doesn’t work for someone as flippant for better choice of the word as me. I do subcutaneous therapy (SubQ) the once a week treatment, this offers me the flexibility I need to fit my lifestyle. Sure more needles and a higher frequency but my infusions takes 1 hour 15 mins including set up and packing away.
Oh and of course the daily push, little and often is the key here. Quick but, too many needles even for me.
However don’t let your thoughts on needles be your only factor. Sometimes life situations can have a major effect on what treatment you have. I only changed from IVIG to SubQ when I was taking my AS Levels in college. This was because I couldn’t afford to miss more time off school with losing a whole day to go to the hospital to have my treatment. After the initial training period for SubQ, which is in the hospital, I was doing my infusions at home once a week after school whilst doing my studies. Perfect!
Remember, this treatment is yours to control, don’t be afraid to try different methods to see their outcomes and how they work for your lifestyle.
So that’s my first point. Think about what treatment suits you best.
Secondly: Education and Responsibility
This sounds scary but its not, don’t worry, think on this number puzzle 5 + 3 + 40. What does this mean? This is a question so please shout an answer if you have got one? 5 is the number of years a student will study medicine at uni, 3 is the number of years to become a specialist in a chosen field then 40 is the general amount of time that student will then spend working in that field. Be honest with me, do you think in that time, a doctor will learn everything about all PID conditions?
No, that is why it comes to us to help educate our health teams, we hold all the info and answers, so what we need to do as a patient is look after ourselves and stay healthy as I hope the healthier we can be and show how this treatment works for us, the more answers we can hopefully stumble across that will help future patients.
So how can we stay healthy? That’s probably what you’re thinking. Well there are little things that I personally do, now again, this are not in any shape or from rules, just things I do that have helped me.
Be responsible, I know this is simple little thing, but make sure you attended your clinic appointments. These are the critical times where you can talk to your team face to face, air any issues you have. These could be changes in health,coughs, breathlessness, night drenches…. Anything that you think needs to be addressed. Any worries you have; not staying healthy, vacation plans, lifestyle changes or even advancements in your treatment, wanting to change meds or infusion methods. Those appointments are the time where your individual case will be discussed, utilise it. Communication with your team is critical in maintaining your health, well that is what I’ve found anyway.
This education can also be extended to friends and family. It’s human nature to fear what you don’t understand. So make it known to them, talk to them about it remove the stigma about a lifelong condition. For example if someone is sick, I don’t avoid them like they have the plague, we just don’t get overly close or hug. This extends to sharing drinks, I don’t do it. At American football anyone caught drinking from my water bottle runs laps, however this goes both ways, I am only allowed to drink from mine, so fair’s fair.
Any Mums and Dads with little ones with a PID condition?
I just to let you know, they will be a nightmare. Kids after all will be kids, they will get bumps, bruises, even the occasional blood wound. I tell you this now as I got diagnosed age 9, so I have been there. But do not worry, as long as your responsible and it is more common sense, cold = coat on, blood wound = clean it – responsibility.
Thirdly: What product works for you?
Through my 18 years of treatment, by my count I have tried around 7 different products that’s including both IVIG and SubQ, what YOU as the patient needs to do is find that magic product that makes you invincible. I was on Vivaglobin to this day my IgG levels and everything on paper was the highest it’s ever been in my life, however I was sick a lot, I caught everything going around. So I told my team and we switched me to a different product. Fast forward time and now I am on Hizentra and although my IGG levels aren’t amazingly impressive to look at in comparison to Vivaglobin, I am the healthiest I have ever been in my life!
Ok before I go I have quick game. Everyone raise your hand. Now I want you to lower it if you have taken any medication due to an illness, flu, chest infection, typhoid anything but pain killers and anti-histamines don’t count.
1 week, 1 month, 3 month, 6 months, 1 year, 18 months. 2 years, 2 ½ years, 3 years, 3 years 8 months – That’s what I’m on about. I hope that everyone here with work with their team and uses a bit of common sense so can you can get to a long period of time without any antibiotics.
In my life I have been very lucky, lucky enough to move away to uni to study, lucky enough to play all the sports I want getting battered, bruised and busted up along the way, lucky enough to travel the world with my wife, and I owe all that to working hard with my health teams. So now in front of you all I want to thank them, as between us working together we changed my life. So thank you all, genuinely THANK YOU!’