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Saturday 22 February 2020

I want to talk about Lyme Disease: My Stem Cell Transplant experience

 Lyme Disease: My Stem Cell experience

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Disclaimer: I am not a medical professional however these posts are based on my personal experience/knowledge as I have had to become my own medical advocate as it is so, so difficult to get help for this illness. 

With every treatment protocol that I have tried, I have always held the belief that 'this is it, this is the one that is going to work and I'll get my life back' but never more so than when I tried stem cell treatment.....

It wasn't  a decision that I took lightly for a number of reasons but after seven years of being ill and after a lot of research and discussions with my Consultant, I thought that this was my best hope. I travelled back to the clinic in Germany that I had been attending for 3 years at this stage, for the treatment. I was so full of hope and excitement and, honestly, without any trepidation. 

It was an autologous treatment, meaning that we were using my own cells, which eliminates the worry of rejection. I travelled to the clinic (on an outpatient basis) with my Mam to have my bone marrow stem cells harvested. I was just given some sedation rather than being put under anaesthetic, for this procedure. I wouldn't particularly recommend this as, although I couldn't feel anything, I could hear the entire procedure and saw the tool and I could hear what sounded like bone cracking (they obviously had to go through the bone to get to the marrow) so I kept saying "ow, ow, ouuuuuch" even though I couldn't actually feel anything - it just sounded painful! I can't really recall how long the process took (the marrow was taken from my hips so at least I was lying on my front, which helped with the drowsy feeling) but I was glad that my Mam wasn't in the room with me as it would have been awful for her to watch.

Once they felt that they had harvested enough marrow, I was given a bed to rest in until I felt well enough to leave the clinic. I don't recall waiting very long as I just wanted to get back to our hotel and sleep. When I woke, one of the sites was bleeding so I went back and had it patched up again and then I was obviously feeling well because I can remember my Mam's face as I suggested that we go to the pub for dinner! She was terrified of infection whereas I think I was still out of it a bit because that didn't even occur to me! I just felt hungry and thirsty! My instructions were to drink lots of water and not to get the removal sites wet for 24 hours and that was pretty much it. It kinda felt anti-climactic in ways because it happened so quickly and we flew home 48 hours after the harvesting (with my mother trying to keep anyone from even breathing near me let alone tip off me - typical Irish Mammy!). Overall, I tolerated the procedure well and didn't have any adverse reactions.

I can't remember the exact dates but I think it was around 6 weeks later that my husband and I returned to receive the stem cell transplant. I was told that everything had gone very well and I had a huge number of cells to receive. I first had to have a hyperthermia session (described in this post) and then we were ready for the cells, which were delivered via an infusion. It felt like a momentous occasion and my husband and I held hands as I received the cells, excited about what they signified and about what the future held. Could we dare to dream about starting the life we hoped for - travelling, children and more?  More than anything, we just wanted the old me back or actually the new improved me! 

We went home full of hope and joy and we were excited to see how/when improvements would show. There was never a doubt in my mind that improvements would come and I waited patiently. I had to send bloods over to the clinic around 4/5 months after the transplant to test my immune function/cells etc. These showed that my Natural Killer cells had improved (they had previously been non-existent) but, disappointingly, there were very few other improvements. In fact, in the months after the transplant, I felt worse - I got measles, shingles and more. Initially, I was told that this was a good sign as (in basic terms) as my immune system was re-building, latent infections would reactivate and then clear. At around the 10 month mark, I was told that the stem cells had done pretty much all that they could do - which, basically was nothing! I was devastated - all that hope (and money) with no improvements.

Please don't be dis-heartened if you have plans to have this treatment as I know it has worked for others. Read Nicola's story here for a success story (we attended different clinics). 

Disheartened but never defeated.......

Thanks for reading! 

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