This past week I’ve been completing all my pre transplant tests. The lung function one has come back as low. They have retested me again today and it’s still low, getting more tests and scans tomorrow. I’ve been feeling breathless since beginning treatment which I put down to aneamia. It could be many things, the steroids, Chemotherapy, Imatanib etc. So they are asking me to stop Imatanib for now and see if that makes a difference. I’m worried now that it might effect me going for transplant. I wondered if anyone had any experience of this? Or has anyone had their transplant postponed for any other reason?
At the clinic I attend I meet many patients who are getting ready for transplant and the reasons for delaying the process are very varied. They are super cautious it seems and want you to be in the best possible shape, so delays are not as rare as you may think. These things seem to rectified and all the people I know went on to have their transplant. I can appreciate how frustrating this is having witnessed it first hand but they have strict protocols they must follow. I hope this helps.
Bear wishes alfie
Hi Goody, I have not been in your situation, but I expect this is an extra worry you could do without at the moment. Take lots of care of yourself and please let us know how you are, how you are feeling and what’s going on for you we are all here to support you and the Bloodwise support line details are above if you need them.
Thanks Alfie, was hoping everything would be ok so I have some chance of maybe seeing me boys start school and nursery but it may have been unlikely anyway depending on how quick my counts went up after transplant. Dr might be putting me back on steroids depending on results tomorrow. Fingers crossed it’s not delayed too long …
Hi there. I had a SCT 10 years ago using my own stem cells. I had an unusual presentation of Hodgkins Lymphoma which meant I lost part of a lung and also had a repair on the outer lining of the heart (pericardium). When having chemo I had many lung function tests as the bleomycin had to be stopped when my lungs were struggling.
Before the SCT I had many different tests as they do need to get you as strong as possible beforehand. They may try different things to help with lung function beforehand, but I hope that your transplant is able to go ahead soon. Keep trying to eat healthily and try to take some deep breaths. Take care xx
Thanks for replying! Had my chest x-ray today, all good, CT scan tomorrow. Kind of hoping they find something they can treat so it’s not a problem for transplant.
Hi Dawn, CT scan came back all clear. Met with transplant team today and they said it was still at a safe enough level for full conditioning treatment. So good news!
That is fantastic news. Do you have a date for your transplant? If you can, plan a special day with your family before you go in. When you have had the stress of tests etc it helps having a relaxing memory to think about while having treatment. Best wishes xx
Thanks! Already planned a wee day this Saturday to a safari park …all very excited! Going to take lot of pics as it might be my last day out as a family for some time.
Going in next Thurs 11th July. Can’t believe how quick time is going yet I feel like I’ve been through so much in the past couple of months it feels longer! Feeling a bit of mixed emotions. Releived we are finally at transplant stage, worried about how my body will respond to treatment and the biggest question I had was …was it all worth it?? Will I physically be able to run around after my kids again one day. All I know is I’m glad now that I’m atleast trying. Turns out the donor they went for is actually a young female wish I could tell her already how thankfull I am that she is even considering donating to me.
I had my own stem cells as no match for me. It will be tough, and it will take time to recover, but take all the help offered, and keep focusing on the future. My thoughts are with you…and enjoy your special trip. Sending an enormous hug xxxx
This is great news,no more wasted time worrying about wether to go ahead or not. I think you have the made right choice and once it’s over your focus will shift to your recovery and remission, from my observations of fellow patients it’s a very individual process, think of it as if you are at the base camp of a mountain, you can see the summit far in the distance, your job is come up with a route to get there, camping out for a while at challenges along the way and not pushing on to hard when problems show up. Keep focussed on the prize which is living a normal life again and be patient. Best wishes alfie
Dear Louise, thank you for your kind words, I find it helps to visualise these things in your mind as the psychological element of recovery is very important. Best wishes alfie
wish I could tell her already how thankfull I am that she is even considering donating to me.