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Thursday, 9 September 2010

A patients guide to an autologous stem cell transplant


I thought I would put this list together of the things that I have done, both in preparation and during my autologous stem cell transplant to try and help me get through it with as little trouble as possible.

Obviously it is different for everyone, but as my engraftment has been successful, without any major issues, no sore throat, mouth ulcers or any infection; I’m hoping this list will help others have an easier journey during their transplant.

As I am male, I can only write this from a mans point of view.

In preparation:

  • Avoid anyone with any infections, you don’t want to bring an infection in with you at the start
  • Shave your head before coming in – you are alone in your room anyway and it will save you messing around with bits of hair in your bed.
  • Shave your chest, if you have a hairy chest, its worth shaving it before coming in. The Hickman line is easier to go in as they can see what they are doing and you will need it re-dressing during your stay. You don’t want to have the added pain of them ripping your hair out as well.
  • Make everyone aware of how important it is that you are in a sterile environment. I decided not to have any visitors but my wife. It may seem a bit harsh, but the less people you see, the more chance of you not getting an infection.
  • If using a laptop, organising some kind of internet connection. A dongle for example
  • Plenty of reading material or something to occupy your mind. I bought and electronic book reader, rather than real books as I felt books would contain more germs and harbour bacteria. (at least that was a good excuse to buy one)

During your stay:

  • Buy some wet toilet tissues and use them all of the time. Ordinary tissue will definitely make you sore. Most people have diarrhoea and using the wet tissues avoids this.
  • Avoid physical contact as much as possible. What I mean by this, is that when my wife came in, she didn’t hold my hand or hug me or touch me at all. Again this may seem a bit harsh, but why take the risk. We both understood it was for my benefit to try and avoid any risk of infection.
  • Don’t give in on not letting people come and see you. People will still want to come and see you, even though you have told them why.  It’s too easy to say yes, only five minutes – when someone is dropping someone off etc. But those five minutes could keep you in hospital for another 3 weeks and make you seriously ill. Be strong! They love you and will understand why.
  • Use sterile/alcohol wipes to wipe everything down that you touch in your room. This is done for you at the start, but think about your items as well. Your laptop, books, the handle of the kettle, the drip that you will attached to regularly, plugs that you touch. Keep an eye out for anything that anyone else touches that come in your room. 
  • Shower everyday (when not too tired) and use the Hibiscrub that is provided, this is the wash you use prior to having your hickman line fitted. It will keep you surgically clean, everything helps.
  • Try to keep your mind focused. During the early days after the chemo I had some very strange dreams, but keep in mind that every day is a day closer to getting better. Draw on any force that you think may help. If you believe in god or any other supreme power then use that to strengthen you.
  • Always keep the nursing staff informed of any changes, for example your nose might start to run a little or something similar. The sooner they know, the sooner they can get it checked out.
  • Try to eat, even if it is only a tiny bit. The more food you can keep down the more energy you will have.
  • Mouth hygiene is very important. Most people experience mouth sores and ulcers during their transplant. I fortunately didn’t get any of these. I made sure that after every drink and meal and brushed and rinsed my mouth. You will be provided with mouth was solution and other oral care. Make sure you use them. I gagged while using them some days and other I could put the was in my mouth without feeling sick, but stick with it as much as possible try not to neglect it.

I honestly don’t know if it was following the above that helped get me through this without all the major problems associated with stem cell transplants or it is just how it affected me. I would be very interested to hear of anyone that follows a similar regime to see if it is being strict that provided the benefits I have seen.

I would also like to thank my wife Charito (Maria) for supporting me everyday through this. Relentlessly making sure she gets in to see me. Having to take several busses and trains at times as well as fit in two jobs at the same time…. Thank you, you are my rock x (te amo mucho)