Last Sunday I had a dreadful accident. I either slipped or tripped in the kitchen. I had a kettle full of boiling water in my hand at the time. The result was that I badly scalded my leg and was taken by ambulance to my nearest A&E hospital which is 20 plus miles away. Whilst enroute the paramedics did an ECG. Once at the hospital the A&E doctor ordered another ECG. After that he decided that I had AFib bearing in mind I had just had the worst shock I had ever had. He prescribed Apixaban and Bisoprolol. I told him I had Acalabrutinib and asked if it would be ok, he said he wasn’t up to speed with Acalabrutinib. I was reluctant to take medication without speaking to my Haematology Consultant. I was discharged from hospital after my leg was dressed. I tried for two days to get some answers before starting the medication. My consultant said that if my GP prescribed the heart medication then she was happy for me to take it. She requested another ECG which was done on Thursday last week. This was totally normal! Later on Thursday I spoke to a locum GP and voiced my concern, again I was told that he wasn’t up to speed with Acalabrutinib. He was losing patience with me, when I said that the ECG done in that morning was normal, he said, it meant nothing that it was normal on that occasion, if they were to do more that same day, then it was possible that they would find one that wasn’t normal. He said I should start taking the heart medication otherwise I could have a stroke or blood clot. It was obvious that I was getting nowhere so I agree that I would take them until my next hematology consultation in August. I have said that I want every bit of my concerns to be logged and I have told my husband, family and friends that if (God forbid) anything goes wrong, they have to create a real stink.
My blood pressure always good has been erratic since I started the medication.
I can tell how anxious you are @Kitchengardener2 and it must be difficult for you to know what to do for the best. I do not envy your situation.
Your whole being must have gone into shock when you badly scalded yourself.
How is your leg now, it really was a dreadful accident.
I think personally we are very complex beings and shock, stress, thoughts and feelings can really effect my health and wellbeing.
Please let us know how you get on, look after and be ever so kind to yourself
Hi @Kitchengardener2, I’m so sorry to hear about your recent experience, it must have been so worrying for you. May I ask how you’re doing? In case it’s helpful to you at all, Macmillan Cancer Support have a webpage about Acalabrutinib, which may also be a useful aid in your conversations with healthcare professionals. If you are worried about any side effects since starting the medication, it is certainly worth raising this with your consultant or even your Clinical Nurse Specialist. If you feel that your concerns are not being addressed, we’d encourage you to go back to your team to share these, and you certainly don’t need to wait until your next appointment to do so. As I’m sure you’re aware, do contact 111/999 if you have any concerning symptoms such as chest pain.
You’d be very welcome to get in touch with our Support Team on 0808 2080 888 if it’d be helpful to talk any of this through at all. Best wishes, Tanya.
Thank you Erica, I am/will mend. Luckily although I have sore hip area and upper thigh, it is described as superficial. It has been dressed daily up until today but now only needs attention every two days. I am able to carry on as normal mostly now. However, I am still concerned about the heart medication. My blood pressure is still erratic so I am going to try and speak to a GP tomorrow.
I totally agree with the doctors that if there is a problem with my heart, I do need and will take medication. I do still wonder if it was all down to shock. If I hadn’t had the accident, I would never have gone to hospital and never having had the first ECG.
Thank you Tanya, please see my reply to Erica below.
I thank you very much for good wishes and advice.
Hello Erica. Thank you for contacting me. I am (I think) fine. I still can’t get anyone to agree to my having a monitoring machine to determine if I do/do not have AFIB. All I am told is that because it was a definite diagnosis at the time, then that is all I need! So that strength I have to take the Apixaban for life! I am not happy, I have dizziness when I stand up or turn suddenly, something that I never had before the Apixaban and Bisoprolol. My GP’s did agree to do a standing and sitting blood pressure reading. This was perfectly normal with no "posterior hypertension '. I have a telephone consultation with my heamatologist on Monday and will see if can refer me to cardiology. Failing that, I think I shall need to attempt a private consultation. My scalded leg is healing well but still being dressed every two days but I think I am getting there.
I suppose it is a silly reason but I don’t want to have to declare unnecessary medication when we apply for travel insurance, it’s going to be sky high anyway due to the Chronic lymphocytic leukaemia (CLL) and Acalabrutinib.
Again thanks for being there.
Alice x
It’s all so stressful isn’t it @Kitchengardener2
I am glad that your scalded leg is healing well, but obviously it will take time and I am glad that you are being looked after with the twice weekly dressings.
There is a thread on here Travel tips and travel insurance - do you have any tips to share? I don’t know if I have managed to copy the link
Please let us know how your haematology appointment goes on Monday please, don’t forget ‘pleasantly assertive’.
Look after yourself and be kind to yourself