Orlagh Woods- CVID my story
I wouldn’t say my diagnoses of CVIID was a ‘normal’ diagnoses. I wasn’t constantly sick when I was young, or on antibiotics every other week. When I was 14 I was brought to hospital after having a blood test done by my gp that resulted in me being diagnosed with ITP. That was the first time I’d ever been sick (apart from the occasional winter cold). It took a long time to get used to having ITP, being in the hospital every week for treatment that took 6 hours and only lasted for about a week before symptoms reappeared. It was difficult to say the least, but like anyone who gets diagnosed with a life altering illness you deal with it. But my diagnoses of CVID was very different.
The second semester of college had just started when I started to feel ‘weird’, my heart would race without any reason .At first I thought it was anxiety but then I started to get tired doing absolutely nothing. After a few weeks, I struggled breathing so I went to my gp who told me I had a pulled muscle in my back. Days passed and the pain only got worse, I couldn’t breathe, sleep or move. After about a week or two of not sleeping and the pain only getting worse I went to A+E.
I remember getting x-rays done and the radiologist asking me to raise my arms above my head to hold the bar for him to take the x-ray and I physically couldn’t lift my arms. He had to lift my left arm for me as I cringed in pain. I spent almost 3 weeks in hospital because my lung had collapsed due to having severely bad pneumonia. The first few days in hospital I was put on iv antibiotics as well as oral antibiotics but nothing worked. I had a chest drain put in. when the chest drain was being put into my lung I had a ct scan and the ct scan revealed that my lymph nodes had all swollen to the size of golf balls. The doctors had come to the conclusion that I had lymphoma. After endless scans and blood tests one doctors took an immunoglobulin blood test that showed I had no antibodies. He arranged an appointment with St.James hospital for the following day which happened to be good Friday just before Easter.
I met with the consultant who all but confirmed I had CVID. I had a biopsy of my lymph nodes done and they wanted to wait until the results came back before confirming I had CVID.
About 3 days after I had gotten the results of the biopsy I had started treatment for CVID. I was given the option of having subcutaneous immunoglobulin treatment, which pretty much meant that I would be trained by a nurse to be able to do the treatment myself so I could hopefully get funding from the HSE to do the treatment at home. Obviously I jumped at the chance to not have to be in hospital every 3 weeks and agreed to have scig.
It’s been a year, I’ve had meetings and phone calls with TDs. I’ve sent emails and letters to the minister for health. I’ve been in contact with the health board who distribute and authorise funding in Meath and Louth but I’ve repeatedly been refused funding . Every other European country allows home funding for scig, Ireland if I’m not mistaken is in the EU but yet they don’t go by the same rules.
I’ve just turned 20, I’m going into my final year of a full-time college course. I have already missed out on a whole semester of college because I spent it in hospital but now I’ve to attend the hospital every 3 weeks to get treatment, missing more days from college. I have to work around the hospitals schedule which means I miss out on classes and social events with friends.
If the minister for health actually followed through with the things he’s been saying “patients that don’t need to be treated in hospitals should be treated at home” ,Irelands health system might actually be able help its patients.
Having CVID is complicated. If someone sneezes within a mile radius you are more than likely going to end up being on antibiotics for 10 days. So when I’m sitting in lectures with next to 100 people who are coughing without covering their mouths or sneezing and then touching door handles it gives you so much anxiety.
People look at me and say, “oh you look better, everything’s sorted than” “sure you don’t look sick anyway”. Just because someone doesn’t look sick, doesn’t mean they’re not. That’s the thing with Ireland, the government will help people who are severely sick and plaster it across all media outlets to make it look like their making a difference, whether they actually are helping or not, but when it comes down to it unless it’s in the media already they’re not going to help. People who are already fighting a war against their own bodies to try and stay healthy have to fight for the, much needed, medication and treatment that they need but nobody bats an eyelid until it makes it to the gates of the Dáil.
CVID is so rare that as far as I’m aware there is only one other person trying to get funding for home treatment in Meath, but neither of us have seen anything being done to help us. Patients that live in Dublin have been awarded funding, so why are we being discriminated against because we live in Meath?
Having CVID is hard enough but for the past year I’ve been fighting TDs and the government to try get funding for home therapy treatment. It’s not like I’m asking for a nurse to be there every time I administer the treatment at home or for alterations to be made to my house for it to be more accessible, I’m asking the government to approve and fund a delivery of medication and medical equipment to be sent to my home, but instead all the government has given me is anxiety, panic attacks and stress, and on top of all that I’m trying my best to be ‘normal’ and keep up with all my college assignments and classes. Having funding for home therapy treatment would help me and my family so much because like every chronic illness it has a knock-on effect on everyone you know.
I hope that by sharing this people will feel encouraged to share their experiences whether it’s about coming to terms with ‘your new normal’ or if it to show your struggles because there is always somebody who’s going through or has went through something similar. I can’t tell you how many times I’ve searched CVID online looking for answers and sometimes I find them because people have the confidence to share their experiences.
Help others by sharing your story.
Please follow the link to find out how I got How I Got my Home Funding