Life Changing - Our Story

[karen]

I would like to ask anyone else if having a diagnosis has change their lives - and share our story.

My husband had several infections in the run up to his CVID diagnosis. He had been a fit and healthy man up until the age of 29, he had served 11 years in the armed forces and did outward bound instructing and was a mountaineering instructor, he had taken early redundancy and was working as a HGV driver, he lifted heavy boxes and did heavy manual work. He kept fit as boxer and then changed his discipline after leaving the forces to karate. He ran his own school. However, after getting infection upon infection, mainly in his chest, which would result in pneumonia and we had no idea why: he was referred to a respiratory consultant. He went back and forth to him for 2 years and after one particularly memorable emergency hospital stay with pneumonia (where he couldn't breathe) a random locum doctor happened to ask me if it was IGg he was deficient of. I had no idea what he was talking about - he presumed I must have known this. I questioned the respiratory consultant at the next appointment about immune deficiency as by that time I had read everything I could get my hands on, I knew Mark had this. He poo poo'ed my questions, as I think there was a power play in the room, he gave Mark low dose antibiotics for 6 months to see  how he get on. After a few months he has another pneumonia. Finally, at our next appointment he agreed to refer Mark to immunology as if it was his idea! I get angry when I think back to that time lapse between that appointment and his referral as he incurred a lot of lung scarring (bronchiectasis) which was so unnecessary.

Mark had had several bouts of sickness and time off work and it was during the year of 2011 when his father had prostate cancer and passed away and his father's two brother died in the same year that Mark's health was at it's worst. He was unable to do his beloved karate due to continual chest infection, fatigue and arthritis and it seemed that he was having to save his energy to enable him just to work. My job as a psychotherapist within the NHS as a cancer counsellor was pretty stressful and we decide that things would have to change. I also have fibromyalgia to add into our little equation of health problems. We were both learning to do Home Therapy at that point, to enable life to be more manageable, as the time travelling back and forth to the hospital was invasive, although necessary.

We decided to sell our house and give up our jobs, Mark had been off work for 5 months at that point. We put our house on the market and it sold within a week - surely that was a sign!

The great retirement plan that we had for later on to be at the seaside in a cottage by the sea had to be downscaled to a small flat near the sea. We moved in 2012. After the move Mark didn't have an infection for more than a year. It's seems that we cannot avoid a winter without him having an infection, although nothing on the scale of what they used to be.

We do home therapy, he has 30g every two weeks. He is tired afterwards and seems to be more tired recently, maybe it's because now he's allowed to be tired now, I'm not sure.

We had immunology nurses say to us in the past that this CVID should not change our lives. As the partner of someone who has it, I say, how can it not change your life. We cannot pretend that this illness has not changed our lives, in fact it's damn frustrating that people would think that the lives of someone who lives with this illness would remain the same. It affects everyone in the family.

I suppose that we have been lucky, in so far, that we could make the necessary changes to help us to live easier with CVID in our lives. We fought and appealed for Mark's Army Pension and finally won. We weren't successful in getting PIP as ATOS as the system they use does not care a jot that Mark has been declared as unfit to work by our own GP.

I'm interested in hearing other peoples stories, on home therapy, fatigue, and if this has changed their lives.

Thank you,

Karen

[john]

Hi Karen,
This makes for very interesting reading, and firstly I have to say you have expressed yours and Mark's situation extremely well.
It bears many resemblances to my own experience with immunodeficiency, mine has been diagnosed and treated for over 20 years now, yet many of the original problems are still ongoing.
Firstly diagnosis and treatment DO have a profound effect on the patient and family, particularly spouses, partners and parents. To see their closest loved ones frequently sick, treated by what looks like painful therapies and tests, and then to be still permanently tired and aching...well it's bound to isn't it?
For the patient, the worries of work, not being reliably able to fulfill family obligations, being in pain/discomfort and"not wanting to keep on about it",can eat into the concept of a good quality of life. It's easy for people who are not affected by or living with this condition to say that it doesn't affect your life... Of course it flaming well does, and big time too!
If Mark is getting only one infection per annum, he is obviously on optimum treatment, but that's just the physical stuff, the emotional part of this condition is a lot harder to treat. I was offered and accepted the help of a psychiatric nurse at my clinic, that helped a lot, as does talking about it with someone who really "gets it".
If Mark wants to chat to me let me know and I'll try to arrange something.
Best Wishes ... John

[karen]

John,

Thank you for your lovely reply. I have passed your very kind offer of speaking with Mark to him.

I think for me to see my husband struggle with infection after infection was and has been the hardest thing. Now that he is 'what I call' stable due to having the Flebogammadif things are a lot easier. There's still the side effects, and at this point some times we're not sure what's a side effect and what's a virus etc.

We also have a daughter who's nearly 16 and since she was very young she has had many infections too, they sprang from nowhere and weren't traceable and she would end up having to be treated with antibiotics before the source had even been found. She attends immunology too and although her immune system is low, it's not low enough to warrant any replacement treatment and she's not had any infections for the past few years. We're truly hoping that this has not been passed onto her and that her own immune system is 'kicking in' and this won't end up being the same. We're doing what they call 'watchful waiting'.....

We remain as positive as we can do, we are both at least 'the cup is half full people' and we certainly do not focus on 'what we do not have' - we choose to focus on 'what we have'.....there is an emotional part to having this condition and being a therapist I truly believe that talking therapy helps for all concerned.

Thank you,
Karen

[john]

Hello Karen,
I'm guessing that you probably cannulate Mark yourself as he's having flebogammadif at home, and I think this must affect you. I am assuming this because my own wife was not at all keen to learn how to do it for me, she didn't want to be the one causing me even more pain.Luckily I was always happy to turn up at the clinic every three weeks to get my own 55grams of flebo and let the nurses "hurt" me, but for the past ten months or so I've been doing home therapy using sub-cut, which I can do all by myself! Sub-cut doesn't seem to have the same side effects as IV, this varies from patient to patient, and in my case it has had the advantage of upping my levels considerably. I still feel tired pretty much all the time, and sometimes my hand joints hurt so much I need to take paracetamol, but as you say, who knows precisely what is a side-effect and what is something unrelated to the immunodeficiency?
As for your daughter, in my experience it is very rare that a child inherits CVID from a parent, although when they hear the word "genetic" all affected parents worry about this. Watchful waiting is good advice, because at least she's on the radar!
Being positive and optimistic is really great, as long as you don't expect a miracle cure, but remember, you both have the chance to have a happy and long life together, albeit with a bump or two along the way.
Don't forget my offer to chat with Mark, just let me know, you know where I am!!!
Best Wishes - John

[s162216]

Hi Karen,

It must be so difficult to have seen Mark go from where he was as an active etc person to someone who constantly got infection after infection, and its sad that it made him unable to the things that he loved. At least now he's having the IVIG things have improved, and even better that he's able to have it at home.

Personally I don't find that having CVID tends to affect my day to day life very much, but then that's likely because I was completely unexpectedly diagnosed before the effects started to seriously onset. I did previously used to get several infections a year, none of which were usually very serious and just went away after having antibiotics, but I then happened to have my IgA measured as part of another test. It was nearly unrecordable, and subsequently I was found to be seriously deficient in IgG and slightly in IgM. This resulted in a referral to clinical immunology, and it was then that they found I was not immune to anything except Tetanus (at least a useful one!). On top of the amount of infections that I would get, they decided to start IVIG immediately and ever since then things have been much improved.

I suppose that I'm just extremely fortunate that I found out by almost complete accident, so hopefully I will be much better prepared when the CVID starts to worsen when I'm older and avoid developing lung damage etc.

That doesn't mean though that my life is completely unaffected though. It is a pain having to travel for over 1.5 hours there and back to Addenbrookes every 3 weeks (especially as I don't drive), and the IVIG does tend to make me experience motion sickness for a couple of days after an infusion (although luckily just taking Cyclizine before I travel reduces or stops this entirely). It was also very annoying when my university would not let me into their new Category 2 biohazard lab, despite my own consultant telling them any risk of infection was only slightly higher than normal (they were just concerned that I would sue them if I got an infection!). On the whole though I'm just relieved that at the moment I am relatively unaffected as I have not experienced a chest infection since I started IVIG 3.5 years ago, and only tend to get perhaps one or two mild upper respiratory tract infections per year now. 

I really do feel for those with PID who are in a much worst position than me, and just hope that things continue to improve for you and Mark. Although life may not seem to be the same as before, at least you still have each other, and both of you will help each other through this.

Sam

-- Sent from my Palm Pre3 using Forums

[karen]

Thanks Sam, we do have each other and we are very lucky.

I suppose that's the thing about PID, every single person has no one thing exactly the same. There's a unique aspect to that and we sometimes joke about it, in the fact that he had to be the person to have something rare!

I always refer to my previous position within a palliative setting and am eternally thankful that we are not dealing with a cancer diagnosis. It's annoying that there's no clearly defined and uniformed way to diagnosis with PID. I think all the years at the hands of GP's and consultant's that didn't have a clue as to what was going on with Mark was the scariest time.....I'm glad we're not there now.

I really do feel for everyone who is connected in any way with PID and all that it brings.

Karen