I wrote this piece early in 2012. Now, in mid-2013, it doesn’t paint an entirely accurate picture of my life as it is, in terms of my health, my relationship and my children. But still, the majority of the story will never change, and it is my intention to update it with the next “chapter” soon.
My story starts as a very young child. For as long as I can remember, I’ve been ill every winter with coughs, colds and chest infections. As my childhood went on and I began to get older, my chest infections increased in frequency and severity, and by the time I was at secondary school I was missing significantly more school than others my age. By the time I was about 14 I had a permanent chesty cough. I have vivid memories of coughing my way through lessons, with classmates ribbing me about staying quiet long enough for them to hear the teacher. I became breathless and wheezy very easily, so my Mum would write notes for my PE teachers, excusing me from Cross Country running. I was permanently tired and slept a lot even by teenager standards. At the weekends I would sleep for up to 16 hours straight.
I was also a completely normal teenager. I went to parties with my friends, I had boyfriends, I performed in school plays and I enjoyed making my classmates laugh more than I enjoyed working hard! But we knew something wasn’t right and my parents would take me to doctor after doctor, consultant after consultant, each time being told they knew exactly why I coughed so much and felt so ill, and each time being given a different diagnosis. I had bronchitis, I had asthma, I had allergies … and after each visit I was sent away with the prescription that would improve my life. Except it never did. And when I went back to the doctors, telling them my asthma pumps weren’t making a difference, they just increased the dosage.
When I was 17 I went on holiday without my parents for the first time – I went with six girls from school to Mallorca. I loved it, but found it hard to keep up with the long hours of partying and not much sleep, and every night I was the party pooper, begging the other girls to come back to the hotel with me as I was so tired I could barely stand. Halfway through the holiday we all started getting ill, with high temperatures, diarrhoea and vomiting. For the other girls, they were fine after a few days, but my illness continued for the rest of the holiday. I vomited my way through the entire flight home, and after collapsing gratefully into my parents’ arms at Heathrow airport I got better at home. But my cough stepped up a gear, and I was now coughing up sputum every day.
Despite my deteriorating health, I managed to achieve reasonable grades in my A-Levels and went to Bradford University to read Community Studies with Women’s Studies. I had deliberately gone as far from home as possible, so that I had to learn to be independent and look after myself. I loved university life and the new friendships I was making – though no-one wanted the room next to mine in halls of residence as my cough was so loud it would keep them awake at night. I would go to bed with a bin and a box of tissues next to my bed, and would cough up sputum throughout the night. During the day I would drag myself out of bed to go to lectures, I had two part-time jobs, and I kept on top of my assignments. I was completely exhausted, yet still having a great time.
Halfway through my third and final year I fell ill. My cough was the worst it had ever been, I was constantly short of breath, my temperature was sky high, and I couldn’t stop vomiting. I went to the GP who prescribed me a standard course of amoxicillin and sent me away. I retired to my bed where I stayed for a few days before calling my Mum and asking her to drive over 200 miles to come and look after me. While she was with me, I happened to pick up her newspaper one day. There was an article describing a prevalent strain of pneumonia and I recognised all my symptoms. Mum immediately drove me home to Essex where my parents decided not to waste time with any more GPs and instead paid for me to see a private doctor. He agreed that I had indeed been suffering from a very serious case of pneumonia and said that when I’d seen my university GP I should have been hospitalised immediately. Instead, he said, I’d been through the worst of it in my room in halls of residence, and that I was lucky to still be alive. He went on to say that whilst I was still very ill, I was no longer in danger and that my parents were able to care for me now. The GP also discovered that I was seriously anaemic.
For a few months I saw the private GP twice a week, where he would monitor my progress. I had regular chest x-rays and I was on a high dose of antibiotics and iron tablets. I consider myself very fortunate that my parents were able to afford the huge cost of the x-rays and frequent trips to the GP, and slowly I began to feel a little better.
I was determined that I was not going to allow over two years of study to be wasted, and so I continued to study at home and submit my assignments to my tutors. I completed my dissertation and filled in a form saying I had mitigating circumstances affecting my studies.
Once I’d submitted all my assignments and completed my studies I began applying for jobs. I was delighted when I was offered a position in an organisation that provided play schemes for children with special needs. My role was to write behaviour plans for the children and train the volunteers working with them – in short it was my dream job and I was delighted to be working. Things went reasonably well for a while, and on the day that the results for my degree were due I phoned the course tutor who had been so supportive over the past few months. She told me with delight that I had achieved First Class Honours. I was incredibly proud to have achieved this despite everything I’d gone through in my final year.
Unfortunately I began to find working life very tough. I was permanently exhausted and coughing violently throughout the day. The small improvements I’d seen in my health disappeared again, and I was back to feeling permanently awful. After four months in my dream job, I was forced to admit I just couldn’t cope and had to resign. By this point I had bought a one-bedroomed flat, and my parents were generous enough to take over paying my mortgage for me. I filled in the forms for Income Support and began to sink into depression.
By this time I was still seeing the private GP regularly and he was concerned that I was not making the progress I should, and so he referred me to a private chest physician in Harley Street. After looking at my chest x-rays and CT scans, the chest physician told me I had a condition called bronchiectasis. He explained that this is permanent damage to my lungs, caused by twenty years of chest infections and pneumonias. He told me that with bronchiectasis the airways of the lungs become abnormally widened, leading to a build-up of excess mucus, which can in turn make the lungs more vulnerable to infection; and that I would need to have regular physiotherapy on my chest to help me clear the excess mucus.
The chest physician also knew that bronchiectasis is often seen in people with disorders of the immune system, and therefore recommended to the GP that he order some blood tests to check my levels of immunoglobulin. Within a few days the results were back, and although the GP did not discuss them with me, he arranged for me to see an immunologist at Barts as a matter of urgency.
Until then I had not thought much about the diagnosis the chest physician had given me, or any more diagnoses that were to come. I was so used to different “experts” giving their misguided opinions about what was wrong with me that I had no reason to think this was any different. But as I sat in the waiting room at Barts Hospital a chill began to creep across me.
On every wall around me were posters about HIV, about AIDS, about trials for new HIV treatments, about living “positively”. I remember thinking “Oh my God. I’ve got HIV.” By the time I was called in to see the immunologist I was so frightened I couldn’t see straight. I sat next to him, bracing myself for what I knew I would hear. And then he told me that I had a condition called Common Variable Immune Deficiency; a form of Primary Immune Deficiency.
It took the rest of the appointment for me to process the fact that I hadn’t, as far as I was concerned, been given the death sentence that I had been expecting – and I literally did not hear another word that was said to me throughout the entire consultation. Luckily I had taken my aunt to the immunology clinic with me, who had made notes and asked questions, and on the Tube journey home I gradually began to absorb what we had been told. And finally it all made sense. Everything I had been through could be explained by this diagnosis, and I knew it was the right one. Finally, at the age of 21, I knew what was wrong with me.
Over the next few days I read all the literature I’d been given and started the long process of understanding my condition. Primary Immune Deficiencies are a group of disorders in which parts of the body’s immune system are missing or not functioning properly. Primary Immune Deficiencies are rare genetic disorders, and my particular deficiency is called Common Variable Immune Deficiency (CVID). My CVID means that I do not naturally produce antibodies (except in tiny amounts) so I have no natural defence against common bacterial and viral infections. The treatment for my condition was to be infusions of human immunoglobulin (antibodies) – in other words, if I wasn’t making my own antibodies I’d use other people’s instead. I’d have to receive the immunoglobulin via a drip and would have to do this every three weeks. It was a daunting prospect.
My Mum came with me to the clinic for my first treatment, and tried to put on a brave face as she watched her baby being connected up to a drip. As the hours wore on I began to feel hot and cold, and developed a terrible headache. The nurse told me this was normal and gave me paracetamol. My arm became very sore at the site of the needle and the nurse gave me a heat pad to hold on it. I grew very tired and lay on my hospital bed sleeping sporadically. Yet despite all of this, a big part of me was finding the experience comforting and validating. I had spent the best part of ten years trying to be taken seriously by doctors, and now here I was in the famous Barts Hospital with a team of nurses caring for me, a consultant who came to visit me at my hospital bed, and a human blood product dripping into my arm. It didn’t get much more serious than that, did it? I felt like opening the window and shouting “You see? I TOLD you I was ill!” When I eventually got home that evening I was completely exhausted and fell asleep immediately. When I woke up the next morning it felt as though I had flu, and I continued to feel like this for the next two days, before the feeling eventually went.
This whole cycle repeated every three weeks. As infusion day came around I dreaded it and looked forward to it in equal measure. The experience was miserable, painful and made me feel ill. But it also meant that every three weeks a whole day was dedicated to acknowledging that I was ill – something I had longed for. I didn’t realise then how very ill I was. I still coughed up sputum all day and night; I had gastrointestinal problems and permanent diarrhoea; my joints had all become incredibly painful. But for me this was simply normality. This was my life.
After six months I was still not feeling any benefit from the infusions, and by now the novelty of the hospital setting was beginning to wear off. I had stopped enjoying my infusion days and now found them utterly miserable.
One of the worst parts of the experience was the difficulty the nurses would have in setting up my drip in the first place. I discovered that I have terrible veins – narrow and deep. So every three weeks, before I’d even started receiving the drug that I knew would make me feel awful, I had to endure needle stick after needle stick. Most times the nurses would give up after five or six attempts and call a doctor. It was not unusual for it to take 11 or 12 attempts to get the needle sited in a vein. In desperation the nurses even talked about using the veins in my foot. It was also fairly common for the needle to move during the infusion, and for the whole process to have to begin again. With every month that went by, my veins seemed to become more and more uncooperative and I wondered many times whether it was worth going through a regular experience that I had started to find deeply distressing. The realisation that this was going to happen for the rest of my life was more than I felt I could cope with.
I explained to the nurse at Barts how low I was feeling and I was put on antidepressants and referred for therapy. The antidepressants were simply added to the long list of drugs I would take every day: antibiotics, vitamins, iron tablets, tablets for nausea, tablets for dizziness, tablets for diarrhoea, tablets for joint pain … at one point I counted over 30 tablets a day. I spent most of my days alone in my flat. I’d sleep until lunch time, then lay on the sofa, turn the TV on and go back to sleep. I was surviving on benefits and could not imagine a future worth living.
Then one day, I woke up and felt different. I didn’t want to pull the duvet over my head and go back to sleep. And then it dawned on me … this must be what it felt like not to be ill! It had taken 22 years but finally I knew what everyone else felt like every day – and at last I realised how ill I had been for such a long time.
It was around this time that my nurse began talking to me about home therapy. She explained that I could administer my own infusions at home. It sounded wonderful – infusions from the comfort of my own sofa rather than taking the Tube and sitting on a hospital bed. The nurse said she could start teaching me how to do it, and I jumped at the chance. I quickly learned how to set up my IV. I learned about hygiene and safety, and what to do if something went wrong. Everything was ready for me to start home therapy except for one problem – if experienced nurses couldn’t get needles into my veins, what chance did I have? I was determined to do it though, and was convinced that I’d be able to do it eventually.
I learned on the hospital’s rubber practise arm. My nurse allowed me to practise on her, as did my Mum. I stuck needles into anything I could get my hands on – rolls of kitchen towel, oranges … but no matter how hard I tried I couldn’t not get a needle sited in my own vein. I would grow frustrated each week when my nurse gently explained that she would allow me to try once more on myself before she would take over. Each time I would have to tearfully admit defeat and hand my bruised and bleeding arms over to her.
My nurse had started telling me about subcutaneous infusions as a possible alternative for me. She explained that there was no need to find a vein as the needles simply went into fatty tissue such as in the stomach or thighs. It sounded great but because the body could not absorb such high volumes of immunoglobulin through this method it had to be done every week instead of every three weeks. I told her I simply could not contemplate the idea of putting myself through the ordeal of an infusion every week, and despite all her attempts to persuade me I refused to discuss it. I stubbornly persevered with the impossible task of learning to set up my own IV drip.
Then one day, she suggested I simply started subcutaneous infusions on a trial basis. She promised that if I tried it for three months, I could go back to intravenous infusions if I wanted to. I was so desperate to stop the frequent hospital visits and start infusing at home, I agreed.
So I went back the following week for my first subcutaneous infusion. As instructed, I had put EMLA cream on my stomach and thighs before I left home, so that they would be numb by the time I reached Barts. The nurse drew up the clear liquid from the tiny bottles into syringes which she then put into a pump that she explained would slowly depress the syringe over a few hours. Then she took four tiny butterfly needles that were connected to the syringe and put two into my stomach and two into my thigh. I hardly felt a thing.
The sensation of the immunoglobulin being pumped under my skin was an odd one to say the least. It felt hot and itchy, and as the liquid built up under my skin a raised red patch grew around the site of the needles. It was uncomfortable but not painful, and at the end of the infusion I felt fine. This was a revelation after a year of intravenous infusions that made me feel simply awful. By the time I got home I had a slight headache so I took two paracetamol, and when I woke in the morning, instead of feeling like I had flu, I felt fine and ready to face the day. It didn’t take long for me to realise that going through this every week was infinitely preferable to what I had been dealing with every three weeks for the past year.
It only took a couple of weeks for the nurse to be happy that I knew what I was doing, and then I was ready for my first home infusion. My immunoglobulin was to be delivered to me every four weeks along with all the needles, syringes and other paraphernalia that I needed. I remember thinking how odd it was to have a bathroom full of all this medical equipment, and it seemed very strange sitting at my dining table with my Mum, setting up my infusion the way we’d practised in hospital. But it all went smoothly, and as I relaxed in the living room with my infusion while Mum went into the kitchen to make me a cup of tea, I knew without a shadow of a doubt that I would never go back to intravenous infusions.
After some months on subcutaneous immunoglobulin it became apparent that, not only were my infusions infinitely more bearable, but my health was improving significantly. My regular blood tests showed that my immunoglobulin levels were stable rather than having the “peaks” and “troughs” that are found with intravenous infusions. Whilst I continued to suffer from chest infections, they were beginning to become less frequent, and responding better to antibiotics. I still wasn’t well enough to consider a full time job, but I had started teaching on Sunday mornings at my synagogue’s religion school, and then took on a part-time voluntary job as a consumer advisor for the Citizens Advice Bureau.
For a couple of years I continued like this. Things were far from perfect, but they were much, much better. I started to think about the possibility of a full-time paid job, but my chest infections were still too frequent to make this feasible. But they continued to occur less and less often, and eventually the time came when I realised I’d gone a year without a chest infection. I decided I was finally ready to think about a career, and so in 2005, at the age of 27, I started training to be a teacher.
Once my training was complete I was offered a job teaching in a secondary school in a challenging inner London borough and I discovered the joy of earning a living. I loved the fact that I was working with young people every day, and I loved everything I was learning through my work. Things were going so well for me that I enrolled in an MA module which I studied part time in my first year of teaching. In that first year I also bought a house, which I absolutely loved, and finally had the money and energy to make the beautiful home I had always wanted. I became good friends with a group of teachers from the school, and we would go out regularly socialising. And finally I was keeping up with everyone else on a night out!
I even went to Thailand for a month with two of my new work friends. I experienced things I’d never imagined I’d be able to do, and even had a chance to teach in a school there. And I was able to do this by taking all my infusion equipment with me, and infusing under a banana tree.
At the beginning of 2007 I joined an online dating website and met M. We hit it off immediately – so much so that six weeks after our first date he moved in with me! I had been open about my CVID from the start and M took it in his stride, happily taking on the role of my infusion buddy each week. In June he proposed to me, and the following March we got married.
I had planned every detail of the wedding meticulously, and it really did turn out to be the wedding of my dreams. The speeches were very emotional, as my Dad spoke about how far I’d come in the past ten years. I made a speech acknowledging how hard it must have been for my parents to have seen me being so ill for so long, and telling them that I wouldn’t have made it to my wedding day without them. Then I sang to M – something I’d been planning with our wedding band for months. There wasn’t a dry eye in the house!
M and I had decided we didn’t want to wait long to start a family, and we were elated when I fell pregnant in July 2008. We went for our first scan a few weeks later and were told, to my absolute astonishment, that we were expecting twins! I was, frankly, terrified. I’d been worried enough about how I would cope with a pregnancy and then a baby; and whether my health was up to it. How on earth was I going to handle two babies, and a twin pregnancy?
I did find the pregnancy difficult. I had severe morning sickness for the first four months, and then developed a bad chest infection. The antibiotic I usually used for chest infections was not suitable in pregnancy, so I tried others, but none were working. So then I had to be put on intravenous antibiotics, and had a PICC line inserted – a long tube that is fed into a vein in the arm all the way up to the space near the heart. This made it easy for IV antibiotics to be given twice a day, and it was arranged for district nurses to come and administer this for me.
The time came that it became painful to insert needles into my ever-growing stomach, and I had to temporarily stop subcutaneous infusions and start going to my local hospital every two weeks for intravenous infusions. The IV infusions affected me in exactly the same way as they had done years ago, and I would leave the hospital feeling exhausted and fluey. The only thing that kept me going through the infusions was the knowledge that it was a short-term measure, and that as soon as the babies were born I could go back to my beloved subcutaneous infusions!
At 37 weeks pregnant, in March 2009, I went into hospital for a planned Caesarean Section and gave birth to J and L. They were perfect, beautiful, and most importantly, healthy. Unfortunately I had lost a huge volume of blood during the birth and spent the next two days in the High Dependency Unit. But after receiving a blood transfusion I regained my strength, and five days after my babies were born we were allowed to come home.
J and L are now three years old. They are absolutely wonderful. L has extraordinary communication skills and is extremely bright. She wants to be continually stimulated and, whilst I adore her and am incredibly proud of my astonishingly advanced little girl, she is extremely hard work! J is a sweet, sensitive, loving little boy. We have recently discovered that he is on the autistic spectrum, and are learning about how we can support and teach him. Parenting two such unique children would be hard work for even the healthiest of mothers, and I do end up asleep on the sofa as soon as they’re in bed most evenings. We also had concerns that J seemed to get unwell more often than L, and so we had him tested for Primary Immune Deficiencies. Whilst I felt I could cope with him having autism, I was frantic with worry at the thought of him going through what I’d been through. I was so thankful when his results came back as completely normal.
Unfortunately my health hasn’t been so good since my pregnancy. My chest infections have been much more frequent and my ability to work has been seriously affected. But I’ve realised that life is about prioritising. It’s true that my career has suffered. I’m back to being permanently exhausted and I’m not keeping on top of the housework. Or my social life. Or anything else.
But right now, life is all about being a Mum, and I’d like to think I’m doing a good job. I remember a time, not so long ago, when I couldn’t imagine ever being in a situation where I’d be able to cope with having children; and when I found out I was having twins I just didn’t think I’d possibly manage. Instead though, my children are beautiful, funny, happy and healthy. I have no problem at all with the notion that I’ve sacrificed my own energy and strength for this. After all, show me any mother of twin toddlers who isn’t constantly tired? Add to the mix CVID, autism and everything else that makes our family extra special, and I can’t help feeling pretty proud of myself for simply surviving each and every day!
41 thoughts on “My CVID Story”
OMG- you are doing a brillant job and like you say its priortising thats the most important, who really cares about anything else M,L and J want a wife and mum to be around and to see them grow up and a wife to grow old with and the only way for you to do that right now is to look after number 1, and although ive only known you a short period of time i’m proud of you and your achievements……….so you go girl!!!!
That’s so lovely, thanks Pam. Your support has been amazing over the last few months xx
Dunno about any mother of twin toddlers- I am permanently exhausted and I only have one 7 year old!!!
Thanks for sharing all this- I knew some of it but hadn’t quite realised how awful the whole thing had been. You are truly amazing to come through it all with your sense of humour in tact and I can’t wait to see you and finally meet the twins on July 1st. xxxx
Thanks so much Midori, likewise I’m looking forward to meeting the very gorgeous Joey! x
I’m in admiration and awe of you. I really didn’t know how difficult things had been or really anything about your illness and think it’s amazing how brilliantly you cope with not only your health problems, but also toddler twins and all the other challenges life throws your way. Catherine xx
Thanks so much Catherine xx
A very moving and touching story of fortitude and determination. You have every reason to be very proud of all you’ve achieved – and as you go through life, there will be many more ‘victories’ over adversity. Don’t forget to write them down here to give hope to others – and yourself, because without hope we’re all sunk.
Thanks so much for your very kind words John. It’s lovely to know my musings are resonating with so many people! x
Do you mind if I quote a several of your articles as long as I provide credit and sources returning to your site: https://throughacceptinglimits.wordpress.com/my-story/. I will aslo be sure to give you the proper anchortext link using your webpage title: My story | through accepting limits. Please be sure to let me know if this is ok with you. Thanks alot 🙂
Of course – I’d be delighted 🙂
I am in my mid-40s, and have been dealing with every. single. issue. you describe here. It has, frankly, made for a frequently lousy existence. As I read your story, above, I started crying. Someone, somewhere, understood. And understood perfectly.
I have a lovely, wonderful partner in life – I wouldn’t trade him for anything. He has been through it all with me: from hearing that I was just “having a little trouble getting over the flu” to “she may die at any point.” I don’t have a clue how he does it, works 18 hours a day – and loves me more every day – as I do him.
We wanted children very badly.but my body could not house another; I was constantly ill, for one, and for another, two of my long-term medications were teratogenic (caused birth defects) and another was known for causing spontaneous abortions. I had six miscarriages. I mourned more than he in an odd way (how does one measure mourning?) because I knew about at least one he didn’t until we talked before my emergency hysterectomy two years ago (EVERYTHING seems to be an emergency these days…). He would have made a spectacular daddy.
It seemed as though nothing ever went right health-wise, and added to what you have bravely related, I was fired by two doctors and another medical group; I was either too complicated or too demanding. Whichever. I have been all over the US trying to find answers.
Oddly enough, my answers came from 10 minutes away. After all that searching one of my docs said, “I cannot ethically or personally watch you die” and, after banishing me to her waiting area, came out with the name of a doctor, his address, and his phone – and told me to be there in an hour. She had pulled in whatever favors she had and managed to have me worked in as an emergency. I thought, “I cannot do this; I can barely put a foot in front of the other.” But I went – and I am glad I did.
That’s how I learned about CVID – and how I found hope again. I am on one med now, move to methotrexate for eight weeks this Thursday (tentatively – I hate insurance company protocols in the US), then on to IgG replacement in late October / early November. I cannot wait. For once, I have the possibility – the possibility, mind you – of feeling basically, some day, like a ‘normal’ person.
I am thrilled to be reading your blog and absolutely wonderstruck by your honesty. Thank you for being a beacon to a really old, really tired and really hopeless woman in the middle of the United States. You’ve made a difference.
Thank you so very much for leaving such a kind and thoughtful comment. I can’t tell you how much it means to me to know that my blog is a) being read and b) helping others.
I’m so sorry to know that you have suffered so much and are continuing to suffer. Here in the UK people are very quick to complain about “the state of our country” and have no recognition at all of how very lucky we are to have the NHS. But time after time I hear about my friends in the US battling with insurance companies to get life-saving treatment and it seems almost impossible to believe.
I am delighted to hear that you will, at last, be starting IgG replacement therapy soon. Please know that my unhappy experience in my first year of IgG is not representative of most, who seem to take to IVIg better than I did. Don’t let me put you off! And if you do have CVID, a life where you feel better and stronger is not just a “possibility”. It takes a while for the IgG to kick in and you need to be patient, but it WILL happen and you WILL feel like a different person a year from now.
If you haven’t already found us can I recommend the discussion forum from the charity UKPIPS http://www.ukpips.org.uk/ (UK Primary Immunodeficiency Patient Support). It’s a pretty new charity and has lots of growing to do, but the forum is full of wonderful supportive people who have been through what you’re going through. You can find the forum here: http://primaryimmuno.proboards.com/
Keep on fighting! You’ve got through the hardest part – life’s about to start getting easier xx
Thank you so much. So, so SO much. :::hugs:::
I never really realized just how important it is to be to be understood in something. This has been misunderstood, mischaracterized, mislabeled, misused… and in the process, somehow I feel as though *I* have gone missing. It’s as though one third of my lived life has been spent fighting this terrible unknown that – because it *is* so unknown – I’ve somehow just… missed out on life. I can’t get that back.
But I can move forward, knowing there are friends out there who really, really, REALLY do understand, that this is not in my head, that it is indeed, just as we have lived it.
Thank you so much for putting yourself out here. I’ve never been more grateful to another human being in my life. And I do mean that. I finally have hope where I had all but given up. There’s *nothing* that can replace that. Ever.
This is one of the most moving messages I have ever received – I can’t tell you how happy I am to have made a difference to your life. You should feel hugely proud of simply having survived to this point (physically and emotionally). I guess part of me had forgotten how truly horrific the long fight for diagnosis is. Just like I did over 10 years ago, one day in the not-too-distant-future you too will have a day when you feel properly well. Start planning now what you are going to do with that day! And then plan how you will celebrate your first week of feeling well. And your first month. Because they WILL come … and those of us who truly understand what you have been through will be celebrating right along with you xx
I have a similar copndition, although in my case it is enzymes rather than antibodies which are missing. I thought I coped pretty well until I read your story. Now I feel humbled and in awe of prabably the bravest person I have ever known. A more loving and coping mother would be difficult to find and the fact that you are able to entertain so many people just makes you a more fantastic person. I love singing with you and am proud to have you as a friend
That’s a lovely thing to say, thanks so much. The feeling is entirely mutual xx
I just wanted to thank you so much for this article, I am currently pregnant with my first, so I am a little emotional, but I started crying with relief to see that there is someone out there with the exact same story as myself. I was also diagnosed at 21 and the past year I have seemed to feel worse being on infusions than I was before receiving them. Your article has made me decide to talk to my doctor about starting subcutaneous infusions. It is wonderful knowing that I am not just making up these things, but that they do happen to others with CVID.
I’m wondering how long it took before you started feeling better on the ivig. I receive treatment every 2 weeks and it’s been 4 months…I feel worse after treatment now and still get sick. Is it worth waiting it out? We want to switch to subq soon but I don’t know if I want to do any of this anymore! I had treatment 2 days ago and now I feel sick & everything hurts – particularly my legs and hands. How do you keep going?
Hi there. I’m so sorry you’re having a hard time. Your story definitely takes me back to my early ivIg days, 14 years ago. It sounds like you’re having a similar experience to me and I have both good news and bad news. The bad news is that it took me around a year of infusions before I started to feel the full benefits. The good news is that things DID get better for me and they will for you too! I certainly found that sub-cut was way better for me in terms of the reduction in side-effects and feeling ill after infusions, so it might be worth you looking into this more. Either way please don’t give up. It’s a tough, crappy journey – but you are now on the right path to eventually feeling well. And in the meantime there are lots of people who have been through the same thing and can give you the moral support you need to get through each infusion. I don’t know where you’re based but there’s a fab UK charity called UKPIPS. If you have a look at http://www.ukpips.org.uk you’ll find a helpful and supportive discussion forum (you don’t need to be in the UK to join). There are also some very supportive Facebook groups (search for “primary immune” and “CVID”). There’s a lot of support and understanding out there and I know it helped me massively when I was getting through the first couple of years post-diagnosis. Good luck and don’t give up. It WILL be worth it, I promise! X
Thank you! Your post gives me hope for a future. My husband just got diagnosed with CVID and I am frantically trying to find out everything I can. We are 27 yrs old, and I never thought something like this could happen. I love him so much, and am so scared of this big unknown for our future.
God Bless! and thank you for sharing!
Hi Julia. I know how scary this must feel to both of you, but please believe me when I say this is the start of things getting better. Are you in the UK? Even if not I highly recommend you get into contact with UKPIPS (www.ukpips.org.uk) who offer wonderful support for people with Primary Immune Deficiencies and in particular for those who are newly diagnosed and seeking answers and understanding. If I can help at all or if you have any questions then please do come back and ask! I’m now 14 years post-diagnosis but I remember very well my search for as much info as I could find in the early days. I’m only too happy to help you both with that bit!! x
Thank you so much for sharing. My littlest one (at 10 months old) has been diagnosed with immune deficiency. They don’t diagnose as CVID as there might be a slight chance that he grows out of it. He is deficient in IGG 1 and IGG 4. We usually get about one day where he gets better and then the next he is sick again with something else and on a new round of antibiotics. I had multiple Emergency visits where I knew he was so ill and met multiple criterion for admission to Hospital but doctors would look and say “he looks happy and fine, if he were really sick, he wouldn’t be so happy.” The thing is, he is sick all the time. That is his normal state of being, he doesn’t get upset when sick like other kids because it is just like every other day, so he doesn’t look the same as other kids when he is sick. Our pediatrician finally ordered tests when reviewing his records (after his fourth round of antibiotics, breathing treatments and a round of steroids) to try to kill a never ending chest infection. I am so happy to hear that you are doing well 14 years past diagnosis. Best of everything with raising your little ones.
I really enjoyed reading your story. I am the mother of an Autistic child (now 17) who has CVID. It took years but they finally allowed me to take training so I could do her Sub-Q Infusions at home. It is extremely amazing how well she has done with her home infusions. She has been hospitalized 37 times and has had to have 11 surgeries due to the damage CVID cause on her body. We are still hoping we can go through just one winter without an infection.. That’s our biggest wish.
What a lovely story. I to have a very similar tale my mum tells me I was always ill when I was younger and I was always being sent away with antibiotics. The final straw was when I was told I had a cold and to just ride it out and the ambulance where call out as I had phermonia. I then had tests for cystic fibrosis and then finally got the cvid Diaognosis. I had had interveinous treatment until my 18 birthday when I learnt how to complete subcutaneously. It hasn’t been easy and working in a nursery makes life harder with all the bugs but it’s been so nice to see someone else understand and stay strong.
I would love to plan a baby with my partner but pregnancy and cvid terrifies me
My daughter was just diagnosed at the age of 10. I have been terrified. While fighting insurance to get approval for treatments and further testing I cry most nights while being brave in front of her. We should start treatments for her within the next month. We decided to test my son and should have results in the next 2 weeks. I am hopeful for a healthy future and hope that she can grow and have a beautiful family of her own. Thank you for your touching story.
Thankyou for sharing ur story. My partner has been having everything illness wise u have explained he has been told he has a problem with his iga and had xrays ct scan and lots of blood taken nobody seems to tell us anything and we go back to the specialist on the 10th feb for all his results im convinced were going to be told his has the same as you .im mentally not coping to well has he not been able to do his job we now in the stage of losing are home the car and struggle to put food on the table
Maybe we mabe be able to get help financially once we can put a name to his illness .I just feel everything is slipping away from me and I dont know how to save my family
I too have CVID, I keep thinking one day the Dr will tell me that the diagnosis eas wrong and no longer need the replacement therapy… But reading your story, made me think that if that doesnt happen it is possible to keep living well and happy and dealing. Having children has been something I am not sure I can cope with and reading that you have twins, well gives me some comfort. Thanks for sharing and I will check out the links. Best of luck
Your story is inspiring – thank you for sharing. I also have CVID but was not diagnosed until I was 35. Like you I grew up thinking using a heavy amount of medication (inhalers, steroids, antibiotics) was going to be my norm. I longed to have the energy levels my friends did. Things got bad when I moved into a college dorm thanks to everyone sharing the same air and even worse 12 years later when I had my beautiful toe headed twins. Although they are healthy, they literally got every virus they came into contact with – especially once they started school and that almost did my in. Like you I was depressed because I knew what I wanted to be able to do but just did not have the energy to do it. After my diagnosis, I reviewed all my options and will start the subcutaneous IGG next week. I am so excited about the possibility of waking up and feeling “normal”. Thanks again for having the courage to share your story.
Wonderful story, thank you for sharing! I came across it while doing some research for a character I created for a novel I’m writing who also has CVID, she’s not a main character, and I’m not sure how much detail I want to put in about it just yet. I’m just so thankful that there are people like you who are willing to share their experiences, not just for my sake, for all those who need a little light of hope who might be going through it as you did.
Hello. I am currently doing research on CVID and the personal experiences different people have had with it. I would love to hear more about you. I have been following your blog for awhile now and absolutely love how open you are. Please contact me at firstname.lastname@example.org.
Do the infusions allow us to live longer? I cannot get clear answers
I am 50. Found out yesterday. I am shocked. Your story was wonderful for me to read. So similar to my story. Unbelievable.
Hi Jane. Diagnosis day was the first day of the rest of your life! I know it’s a lot to take in, but your health will begin to improve now. Are you in the UK? If so there’s two fantastic support groups that I recommend – UKPIPS and PIDUK. I’m often found in discussions on their Facebook groups – would be great to see you there! X
Recently diagnosed, too, at 52. Everything I read here rings true, other than somehow I was able to run quite well and the doctors say that I took care of myself and a little too much care in hiding how sick I was for years. Of course, family says yes, you coughed for two days after your marathons. I, too, remember them thinking when I was in my 20s I might have AIDS, which was scary but in hindsight much closer than this constant, “Oh, everyone’s getting that this time of year.” A half year of infusions now and I feel much better. Best wishes to all.
Dave I’m so pleased to hear things are improving for you now you’re getting the right treatment. Wishing you well x
My son had his first bronchitis at 5 months, first ear infection soon after. He has probably had 75 ear infections & bronchitis 25 times. At 26, he contracted MRSA pneumonia & nearly died. That was when he got his bronchiectasis diagnosis. His pulmonologist sent him to an immunologist, where he had all sorts of tests, but never returned for results. Five months ago, at 33 he went to prison. He has had 4 ear infections with 2 burst eardrums in 5 months. The most recent ear infevtion continues to leak foul-smelling fluid.
I called the immunologist, and picked up his 7 year old lab results today. The answer is in the lab results. If only we had known. (As a result of his illness at 26, his wife left him, saying she didnt want to be married to a sick man.)
My big dilemma is how he can get treatment in prison. I will start that battle tomorrow.
Hi Susan. I’m so sorry to hear how difficult things are for you. Are you in the UK? There are two excellent patient support organisations and I know either of them would be able to give you advice and support on getting the right treatment for your son. One is called UKPIPS and the other is PIDUK – I highly recommend getting in touch with one or both for help. If you’re not in the UK and you’d like me to find out whether there’s a support organisation in your country please do let me know. Good luck x
Thank you for the kind response. We are in Georgia, USA. Any suggestions for advise or contacts with similar experience is greatly appreciated.