Recently I posted how I was diagnosed with epilepsy in my 30’s and the impact that had on me starting a family. My intention was to educate and raise awareness of how certain conditions can affect you as a parent. The response was really positive, and it seemed to strike a chord with a number of readers. So I went out and asked other parents to come and join me and share their stories in the hope of raising awareness about other conditions. And to give confidence and advice to others finding themselves in a similar situation. The first in my series is from Christy who blogs over at Welsh Mum Of One. Christy has ITP – Idiopathic Thrombocytopenic Purpura – and here is my interview with her.
What is your condition
I have an autoimmune called ITP that results in my body destroying my own platelets. This results in chronic anemia which leaves me exhausted and leaves me with bleeding and clotting problems. I also have PCOS and Endometriosis which is not a good combination to have as this also causes heavy bleeding, so they tend to exasperate each other!
When did you receive your diagnosis
I developed ITP when I was 25 (10 years ago). It was discovered in a routine blood test to check why I was so exhausted every day. At the same time they also found my iron levels were critical (anemic) and that my hormone levels were unexpected which led to the later diagnosis of PCOS after some scans. I was referred initially to a consultant hematologist to find out why my platelet levels were so low, and after about 6 months of other investigation and weekly blood tests, they diagnosed me with ITP. One of the other causes is leukemia and I was extremely glad that this wasn’t the end result, so I was actually quite relieved with my diagnosis.
How does ITP affect your life
Most of the time it doesn’t affect me very much, other than the annoyance of regular blood tests. When my iron levels get low I have to take medication and even with that, I can be constantly exhausted and tired. It feels like I have the flu. My menstruation is extremely unpredictable and at bad flare ups due to the bleeding problems I have menstruated heavily for 6 weeks straight before finally finding a medication that got that under control. I always have to be aware that if I cut myself, I am unlikely to clot and may have to go to the hospital and due to the risk of internal bleeding, if I bump my head even slightly I have to go in for a scan as they worry about bleeding in the brain.
One time I cut myself unexpectedly whilst shaving my legs and it didn’t stop bleeding for 6 hours. I felt really silly calling the NHS Helpline and saying “Excuse me, I just cut myself whilst shaving, should I go to A&E?” but once I’d explained they understood!
It’s something I always have to be aware of, and now I can tell when my levels are dipping to the point where I might need treatment, as then I start getting burst blood vessels and spontaneous bruising so it’s good in that my body tells me something is wrong and I can act on that.
It is possible that in the future I would need to have my spleen removed which will result in a much higher level of management and medication. This is because it’s the spleen that is developing the antibodies that destroy my platelets. Whilst the spleen is not essential to life, it provides a host of benefits to the immune system and without it, you may need to be on antibiotics for life, so being without it is definitely the last port of call in the treatment cycle and something that would affect my life a lot more.
How did you feel about becoming a parent and managing your condition
Because of my PCOS and Endometriosis, we had actually been trying for a baby for 9 years so initially, I didn’t even think of my ITP. I was so over the moon, excited and of course anxious about my other issues and our long battle with infertility that it never occurred to me my autoimmune would be a problem. It can be a big problem in pregnancy it turns out. It meant I was high risk and needed weekly consultant appointments and blood tests as well as a bunch of extra ultrasounds and tests. I was referred to a specialist hematologist in the maternity department, I had to talk extensively to the anesthesiologist about potential surgery problems if I didn’t have a natural birth, and the baby needed additional tests when he was born too. Although ITP isn’t genetic, it was possible that my antibodies would cause a problem when he was born resulting in him needing transfusions or a longer hospital stay.
How did you cope with pregnancy
My ITP didn’t actually do much during my pregnancy – for a bulk of my pregnancy, it actually improved! – but having to go to the hospital every week was a big hassle. My husband made every single appointment with me even though it meant juggling a lot of issues at work as they are always on a weekday. In some weeks in the third trimester I would have 3 different maternity appointments in a week, sometimes in different hospitals and it was definitely very draining. I took early maternity leave as I couldn’t continue to work and juggle everything. Unfortunately, I did need an emergency C-section (not related to the ITP) and they were debating whether I could even have a spinal or if I would need a general anesthetic. My platelets were dropping considerably by the hour at this point, so time was of the essence. Luckily I was allowed to stay awake for the birth, but I did lose a lot of blood during surgery. I was in the hospital for a week after due to complications. It’s definitely a condition they need to closely monitor but I felt the hospital were really on point, they kept me informed every step of the way and took it very seriously so I felt I was in good hands in that department.
Some of my antibodies did transfer to my son, but not enough for him to need emergency treatment which could have had further complications for him. It did mean I didn’t see him straight away as he was whisked away to be thoroughly checked and had blood tests done from the umbilical cord. But I knew this would happen in advance and I knew the team was looking after him well.
Now you are a parent what changes have you had to make to adapt
Life goes on and I think you just get on with it really. I have struggled with tiredness levels with a newborn in the house but my husband has really stepped up and taken on a lot of the burden. My mum watches my son when I have to go to the doctor or hospital for blood tests or appointments, so I’m lucky to have family support. Other than that, I don’t think that my condition affects my ability to parent at all but my son is still very young (10 months) and doesn’t really understand anything is wrong. When he is older, I will have to explain to him why mummy has to go to the doctors and have tests all the time and things could get worse and affect my ability to do everything I want to with him. But for now, I continue with monitoring and we’ll take any future hurdles as they come.
What would you say to others in a similar situation
Try not to worry as stress just makes things worse. I know that is not very easy to do, as I have quite a lot of anxiety. There is a charity called the ITP Support Association that fundraises and offers support and information. They also developed a free App called the ITP Pocket Log to self-track symptoms and keep track of medication. From reading other peoples stories I’ve realized that there is absolutely no reason ITP should keep you living in fear or hold you back from living just as you would usually. You just have to be self-aware and careful. For potential mums, there is an ITP in Pregnancy Registry that is working on improving conditions for women during pregnancy and for newborns born to mums with ITP. So my advice would be to keep up to date with the research and keep yourself informed (as your GP probably won’t know that much about the condition!), and to contribute to any surveys or data research so that these organizations can continue with their work to help people affected.
I also found that CBT (Cognitive Behaviour Therapy) which the NHS can now offer as an online course helped me control my anxiety and catastrophic thoughts, allowing me to focus on the present and be more positive and in control mentally. I would recommend it for anyone with a health problem who is finding themselves struggling to cope with negative thoughts or worry.
What are your feelings for the future
Of course, I am a little scared about the future. This condition can get serious very fast. You can go from fine to life-threatening in a matter of hours. It can also go for many years and cause absolutely no problems at all, and I could go the rest of my life without needing serious treatment. So I have no idea if it will improve or stay the same, or if one day I will wake up covered in bruises, needing emergency treatment. If I do need my spleen removed in the future, it will have serious, permanent ramifications for my life – but I can’t do anything about that, so I try not to worry about the worst-case scenario. If it happens, I’ll cope with it as best I can at the time!
What quote sums up your approach to life
As someone who suffers from anxiety and has an uncertain future, there’s one quote that I really like:
“Worry never robs tomorrow of its sorrow, it only saps today of its joy.”
My thanks to Christy for sharing her story with me. I hope you enjoyed the interview and if you want to read more from Christy then please pop over and say hello over at www.welshmum.co.uk