CVID, sex and me

One of the reasons I contracted pseudomonas in the first place-and why I know so many people at Barts and the London on a first-name basis (sadly, for me!!), is the fact that I have a hereditary condition known as CVID: Common Variable Immune Deficiency. This is caused by a defective gene, and passed from mother to foetus. So it isn't contagious-unless I happen to give birth to you (or anyone), you cannot "catch" the condition. And if you have it (one out of about every 50,000 people is born with this), well-that's tough, and you are snookered, because it means you have no antibodies to fight off infection.

I'm not sure whom to blame-but, since my mother and her eight siblings all died young from various forms of cancer, I'm pretty sure I can blame her side for this dud gene. I would investigate further, and ask one of them-but, oh, yeah-they're all dead! Oh, well-I didn't like most of them anyway.

This lack of antibodies has a really nasty effect  on all the body systems-particularly the lungs (respiratory system), because one develops every infection going around. If someone around you has a cold, you might contract it and be sick for a week. I might contract it and spend weeks in hospital with pneumonia. The luck of the draw, and I had to learn to live with this.

I try to be careful-although, when I was first diagnosed in 2005, I wondered if I should never go anywhere near crowds, or wear a mask and pretend I'm Michael Jackson. I gave up that idea very quickly!

The other day, I was on a bus and a woman came on who was wearing a mask and surgical gloves. Now-that was scary. Three people turned away, and covered their faces, in case she was contagious. I have to admit that I was one of those people!! This, of course, begs the question: is paranoia contagious??

I don't take gloves and mask with me, but I do take a ton of Purell, the hand sanitizer they use in the hospitals. If it's good enough for the hospital, it's good enough for me. The stock in Purell must have risen sharply in the last five years!!!

I have to go into hospital -very soon, much too soon - for a gastroscopy and colonoscopy. I've got a few problems, so my gastroenterologist is going inside to take a look. CVID also severely impacts the digestive system-and people with CVID are far more likely to develop various cancers (lymphoma and colorectal cancer, to name but two); when there is a problem, here come the doctors!

This double procedure involves shoving a big hosepipe down one end, and one up the other (not at the same time, thank goodness!!). A light and camera are passed through the tubes and the consultant then takes lovely pictures which show the most popular areas for tumours to develop. What a Kodak moment!

I'm lucky to have a really good consultant (not like Dr Not-so-Bright, this one is really good), and I call him by his first name. Why not? He is the one who shoves the hosepipe up my rectum, I'm not inclined to be formal after something like that!

I have to tell you about pain. If you are into pain, knock yourself out and go have a colonoscopy. For the gastroscopy, you have to swallow this huge hosepipe-with only throat spray to ease the pain (it doesn't), and the gag reflex kicks in (you feel like you are choking to death, and the consultant says, oh, it will be fine. Maybe-if I kick you). And the colonoscopy? They don't knock you out, only mildly sedate you (never works on me, and I keep asking for valium but never get it). You feel a hosepipe-giant sized, bigger than at the top end-and you feel it going all the way up. Oh, joy!

The last time I had this was two years ago, and I said to Sean (the consultant) that I couldn't understand how anyone in their right mind (who isn't a masochist) would EVER have anal sex. Ouch!! I mean, OUCH!!
He laughed and turned beet red, and said he was glad I waited until it was all over to comment.

Honestly. If anyone EVER even hints at having anal sex with me, I will give him a piece of my mind. Then I will give him a piece of my fist.