This is me and my story with TTP (hoping this will help anyone who’s new to this situation because we all know how scary this disease can be at first) and to help me to get it off my chest as I haven’t done as of yet.
Ok so i was a 25 year old healthy, fit(ish), young, workaholic who worked 7 days a week. I was at work on Sunday 24th November I was ok just tired but I’d worked until 1.00am so shrugged it off.. all of a sudden I started to feel ill like I’ve never felt before. I was sweating, I felt sick, dizzy, weak you name it I felt it. I had a similar feeling to this before when I had a kidney infection so thought I was getting the start of one. So I went home to bed (slept in the day which is very odd for me) and woke up that Sunday night feeling much better. That much better me and my partner went out for dinner. I was ok (so ashamed I was exhausted).
Monday morning come 25th November I got up felt ok and went to work. On the way to work I phoned my mum and we was chatting. All of a sudden I had the same feeling of illness come over me and I said to mum I’ve never felt this poorly. So I got to work to sit down and have some toast and I felt really sick. Had no appetite and couldn’t drink my tea. I went to the loo and that’s when I started bleeding.
I cried because I was panicked so I got an emergency GP appointment. I see a GP who sent me home said I was fine as my BP was ok and so was my temperature. She said you’re probably just getting a cold and told me to take paracetamol and rest. So I went home followed doctors instructions
Later that evening I sensed something wasn’t Right So I phoned 111 and explained they sent me to the out of hours GP. The out of hours GP diagnosed me with a kidney infection give me antibiotics, told me if I started seeing red patches come up on my skin I’m to come back straight away. So I took my antibiotics and as usual went back to work on the Tuesday and felt ok just really tired but thought I haven’t stopped working so this is why
Wednesday 27th November come and I went to work felt fine was in a great mood as on 30th I was due to fly to Lapland so was looking forward to that. I got in the bath and noticed red dots everywhere. I phoned 111 again and was advised to travel to out of hours. The out of hours doctor transferred me to A&E. this is where I had my blood test and was told my platelets where at 8,000 and that I needed a platelet transfusion. So they started me on that and after that was complete I was allowed to go home. So I was sent home with instructions to come back for further investigation the following week with a Hematologist doctor and that I would still be allowed to fly to Lapland as planned (I thought thank god for that).
I got home and settled in bed on Thursday 28th. I wanted to rest to make sure I was fully better. I then got a call from the hospital to go straight back (I was so frightened) they told me I was at risk of bleeding and if it started they wouldn’t be able to stop it.
So I went back over to the hospital and they told me that they was unsure what was wrong with me and that They needed to take blood samples to give to another hospital (all the signs where pointing to cancer at this time) and I was frightened I’m not going to lie. They then come and told me I’d need to make the 45 minute journey to another hospital by ambulance for treatment as the other hospital seem to know what was wrong with me.
So I was transferred to Addenbrooke’s hospital via ambulance.
When I arrived I was taken straight to a ward where a specialist team of doctors and nurses where waiting for me. I got in bed and from then I don’t remember a lot. I remember lots of blood being taken and lots of people coming in and out and talking to me but I wasn’t really hearing what they was saying. I then started a course of steroids straight away and all I remember is the vile taste it left in my mouth but luckily my mum brought me fruit pastels as she come in the ambulance with me so that helped. I was then Taken down to theatre at around 5.00am.
Friday morning. (My poor mum had no sleep for like 48 hours by this point. I was petrified and so was she) I had my port put into my leg in theatre and from then my body just relaxed.
I went on to have my first plasma exchange at around 6.00/7.00am I felt ok during this time I just remember always being extremely HOT. I was on a cardiac ward in a side room because my heart was playing tricks. After my first plasma exchange I got up as I normally would to go to the loo I then suddenly had this awful feeling come over me. I started shouting at my mum and throwing up then everything went black when I was coming round all I remember is hearing voices. I couldn’t see I felt like I was in a tunnel. When I did start being able to see there was a lot of people in my face and around me. (This has now made me worry about my own space and I struggle to put a hoodie over my head strange right?)
Everything went fine whilst in hospital I was out of hospital in 6 days. Just 6 days. (I had asked my mum to request that I had no visitors apart from her my partner and grandparents during this time).
Coming home was the challenge BUT ONLY AT FIRST. I felt ok at home to begin with. I was just tired, couldn’t do much for myself. Was very weak so getting in and out of the bath was a struggle. Along with walking, going to the loo etc.
My memory was terrible. I must of asked the same questions god knows how many times my family must of been getting sick of me lol. I slept a lot during this time. I started researching food during this time to improve my diet. And I did improve my diet. I was attending all my outpatient appointments and they was going Great. I was having rituxmab until New Years eve and capla injections at home along with prednisone and calcium chews. I was slowly weened off of all of these drugs.
I was then put on my next treatment called MMF and that’s when things changed. I formed anxiety from god knows where. This medication made me feel very poorly and very very low. It breaks my heart to think about this time. I cried so much whilst taking these. I was getting very depressed. I kept thinking I was going to die and I kept telling my mum I’ve got nothing planned I’m ready to die. No one knows what funeral I want. This was so so dark for me and not a conversation I wanted to have with my mum as she had already lost one of her children and I didn’t want her to have the stress of thinking about loosing me to but I couldn’t hold it in. I was giving myself actual symptoms from being anxious.
Doctor took me off of these are they really suppressed my immune system. I thought thank god for that I can honestly say now though after going through all of this 4 months later ok I’m not back 100% to how I was but I’m touching base with a little bit of luck. I have a lot more energy now I’m back cooking and cleaning and doing small daily tasks. My memory is as it was before TTP and I’m not as tired as I was before. I know my bad days and good days and I make the most of the good days and rest on the bad days. I have a great family network that I can talk to which is amazing. I’ve often blanked out the fact that I have TTP but I’ve slowly begun to realise that acceptance is KEY and I have accepted that now. When I’m tired I still feel dizzy and towards the end of the day I struggle to remember what I was going to say and sometimes the words don’t quite come out how I planned them to haha but there is hope and light it is just a long recovery. Most important you have to listen to your body and give yourself the time and patients to heal from this.
I’m sorry this was a long long post I just feel like I needed to get it off my chest as I’ve never spoke about it in to much detail to Any one before. Zxxx