We asked TTP Clinical Specialist Nurse Ros Newton about what patients should expect after leaving hospital and beyond:
How often should patients expect to be seen once they leave hospital and what tests should they expect?
Post-acute episode patients can expect to be seen at least weekly for four weeks, as their Adamts13 recovers to normal/your baseline these visits will be extended to monthly for about three months and then 6 monthly. However, this may differ, depending on how you are clinically and what your Adamts13 is e.g. if repeated normal ADAMTS13, you may have less initial visits. Similarly, those who look like they may need elective treatment could have some extra visits
What signs or symptoms should patients be on the lookout for?
There are many signs/symptoms and the best thing to do if you are ever worried is to contact your nurse specialist. However look out for any sign of low platelets like bleeding, bruising, or petechial rash (the little red dots on your skin), or signs of anaemia such as fatigue. Unusual migraines or aura can also be an indication of low platelets, or any change in the colour of your urine. Essentially we have found that people know in themselves when they are not feeling right, and TTP can present in multiple ways, remembering how you were before your admission of acute TTP can be a good guide, however this does not mean you should ever ignore other symptoms and again if you are ever worried or unsure contact your team!
What should patients abstain from when in remission?
There is nothing specific patients should abstain from. They will need to be guided by how they are feeling but returning to normal life post treatment is the ultimate aim.
What nuggets of advice would you give to patients post episode?
It is very common to experience low mood/anxiety post an episode so remember you are not alone, and this is not something you need to deal with on your own. Speak to your doctors and nurses, there is psychological help available and many patients access these services either for a short time post episode or some find them helpful longer term. Accessing the patient support network can also be a great support.
Join in on groups/fundraising, having a rare illness can feel isolating so coming to patient days or the Bridgethon can help you feel part of a wider community of people who know what you’ve been through
Take things slowly and listen to how you are feeling but doing a little more each day to return to normalcy helps!