In 2017 I was diagnosed with and treated for Philadelphia Positive ALL. I had 3 lot of chemo and and a fully matched unrelated SCT.
Since then I was diagnosed with Chronic GvHD, of which the worst part is restrictive pericarditis. This causes the sack around the heart to become inflamed and prevents the heart from full expanding after pumping. The effects I have from this are shortness of breath when walking along anything that isn’t flat or going down. And excess fluid in my body, which mostly collects around the left lung.
I have now had 3 periods where I have had to be admitted to drain the fluid which has collected around the left lung.
It feels like each time this happens I cope with it less well and was wondering if other felt similar.
The first 2 times were urgent admissions and the most recent one (end of Feb 2019) was planned to try and stop this from reoccurring. I had a procedure to insert a semi permanent drain into my left lung, which was successful and the drain is working well. However, my body didn’t react too well to the anesthetic and I have spent a month convalescing at home trying to get rid of the 8 litres of fluid that has accumulated in my legs and abdomen.
I have wonderful family and friends, but have been finding it hard and at times I have had feelings of despair and not knowing how to carry on. I don’t remember feeling quite like that before.
Hi Nick, it sounds as if you are going through a really tough time and the feelings of despair and not knowing how to carry on overwhelming. You and your body have been through so much I would have thought it will take time for you to recharge your batteries. I have also found family and friends are priceless. However I have also found that when I am feeling so unwell, weak and unable to exercise that I just spiral downwards emotionally and also physically. I found talking about my feelings to someone I was not emotionally attached to really helped me. If you need to contact the Bloodwise Support Services, please call 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at [email@example.com]. The Samaritans are available 24/7 on 116 123 which I found comforting as I find the darkest hour is just before dawn. I also find just writing down what is going on for me really helps me and we are all here for you so please keep posting all your thoughts and feelings,
Hi @Nickmarks57 @Erica. My heart and a lung were compromised by my original tumour (HL). When they operated I had a resection which meant losing part of a lung and repairing the pericardium. Since then walking up or down slopes and stairs can be exhausting. For a period after chemo, SCT and radiotherapy I seemed to be able to do more, but even though I haven’t had treatment for 10 years I am finding it harder to do things. After you describing what you are going through I am not surprised that you have moments of despair. Have you CNS that you can talk to? Erica has given you details of the support line if needed. Someone posted last week that they sometimes chat to the Samaritans just to get things out of the system, and there is always someone here. Take care, and I hope you feel a bit better soon x
@Pisces56, @Erica. Thank you for your words of support.
I do talk it through with my family and friends. Coincidentally a very close friend just popped in to see how I was and if I had managed to speak to the cardiologist yet.
I’m still waiting for the call back, will contact PALS tomorrow they usually get things moving.
Part of my problem is that I had the surgery under the thoracic team, they have signed me off back to the thoracic consultant as that part was a success. And here I am left feeling awful and not entirely sure who should be responsible for me. My haematology consultant would probably react faster but would have to speak to the cardiologist anyway.
I think because this was unexpected there is currently no plan for how to proceed and I don’t want to sit here feeling sorry for myself waiting for something to happen.
I am seeing small snippets of progress, but if it carries on at this rate it will be several months before I’m back to anything like normal.
Thanks for getting back to us. It sounds as if you know your way around your medical team, but obviously the frustration really gets to you as it would to me. I have also found the frustration in that the NHS do not seem to look at patients holistically and consultants do not usually co-ordinate with each other. It would be all too much for me to cope with when not feeling well as you describe. Perhaps small snippets of progress are good, although it would not seem quick enough to me. Please keep us updated.
Hi Nick. I am in a similar quandary as the cardiologist saw me at my haematologist’s request, and now discharged as they stabilised with medication. My haematologist retired last year and when I went for my check last November I was discharged as it is 10yrs post SCT. I find it difficult to explain to my GP when I worry about the deterioration in my energy levels, although it is expected and he is very good when I go in with new worries
How are you doing today @Nickmarks57 - have you heard back from the cardiologist? You’ve been through a great deal in such a short time, I am so sorry to read you’re finding things quite hard. Please remember our support services are here if you need to talk (details in the pink box at the top of the page).
I am attaching the Anthony Nolan booklet called ‘The Next 7 Steps’ which looks at long term effects and care for those who have had a SCT, lots of it may already be familiar to you but it can be a very good reference tool for planning long term care, especially if you have questions or concerns, . You can download it here https://www.anthonynolan.org/sites/default/files/Next_Steps_Digital.pdf or order it from their website here https://www.anthonynolan.org/patients-and-families/order-or-download-publications.