Long term effect of SCT and blood transfusions.

Yes, yes and yes, daughter required red cell transfusions every 3 weeks or so for almost two snd a half years till her blood type fully changed to her donors. She had medication (I think there is one drug which lowers ferritin levels, she couldn’t tolerate it, sadly, losing weight and being scared to go out because of constant diarrhoea) 

she did have a few times where she had very sore and inflamed joints,

She now attends the haematology unit every few weeks and they are dealing with it by blood letting. As she has a low blood pressure they are careful to give her I/V fluids at the same time. Her ferritin levels were over 3,000 where normal is around 200. It began to come down fast but she gets a bit anaemic so the frequency has slowed. 

Apart from this plus weekly self administered immunoglobulin she is doing really well, her allo was late 2011, and she exchanges Christmas and Birthday cards plus emails with her German donor, Thomas. 

Hugs xxx

Hi Moomy,

Thank you for your prompt reply .I think I have been quite lucky compared to your daughter bless her, but always good to hear other people’s stories. 
im pleased to hear she is now doing well, and how lovely she is in contact with her doner , I was lucky enough to donate to myself.

Think it’s something I will just have to live with and when it happens I sleep for hours rest and recharge my batteries.

Hi to your daughter, I wish her continued good health . 
love 

jd2165 xx

Hi

I had high ferratin levels after my treatment (counts of around 3000 from memory) and had to have venesections once a month for about 18 months to reduce the levels. Eventually they came down to below 300. 

Aches and pains seem par for the course for a few years after.. a bit like you have done a huge gym session the day before.. but you haven't!. If they are causing problems keep telling your team and see if there is anything they can do.

I also administer sub cut Immuglobulins at home once a fortnight as my immune system was a bit slow. Perhaps I would have come off them by now but with the risk of Covid they have left me on them just in case my immune system is still not quite 100%. Its a minor inconvenience but "touch wood" I haven't picked up any bugs or been ill with anything for a few years so something is working.

Hope the symptoms ease soon.

Hi Paul,

Many thanks for your reply, and I’m pleased to hear you are now doing well. I’m also permanently on anciclivir 40g 3x a day , and I still get cold sores there not as bad as without the medication but can’t imagine what they would be like without meds !

Can I ask if your aches and pains were constant? As mine seem to come in cycles every 6 /8 weeks, I am of course very grateful for my treatment and lucky to be here but it does get me down that I always seem to be ill every few weeks.

Regards 

Julie 

400mg not 40 :) 

Hi Julie

They seem to be random episodes when sometimes it is just the way I wake up in the morning and I ache. doesn't seem to be any cycles to it that I am aware of. I don't take acyclovir but still take Pen V every day. It was worse during the first couple of years post transplant and is just an occasional thing now (8 years post SCT)

Hi Paul,

Thanks for your reply. I’m 2years this December coming so hopefully things will get better after that . Many thanks 

Kind regards 

Julie