Having a stem cell transplant

How did you manage your time in hospital before a stem cell transplant? Do you have any tips or recommendations for helping others get through?

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I had my transplant 2.5 years ago. Before that I also spent about 6 months in hospital having chemotherapy to get me into remission. I started knitting and knitted several jumpers and cardigans during my treatment. I also listened to audio books because I couldn’t really concentrate enough to read.

I also found a really nice gentle yoga and meditation video on YouTube which I did most days I was feeling up to it. It was very relaxing and stopped me seizing up.

Blogging helped too.

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Joshua,

Stem cell transplant is a very harsh treatment. It is however a very effective one in treating Myeloma. I think my advice would be to do as much as you can in advance of the treatment as it is likely you will have little energy in the next 2 - 3 months after the transplant.

It tends to affect your mouth and worth asking family members to get you some ice pops. This is something I have never had before or since but was very soothing and initially about the only thing that I could cope with.

If you have the opportunity do have some reflexology. I was fortunate that the hospital that I was at had people who came round offering this and I found it very calming and relaxing. However other complementary therapies may also suffice.

It was difficult to eat so don’t ask people to bring food in as visitors often want to bring something. The best thing apart from ice pops might be a magazine. I found concentrating on reading a book was just too much.

However my real advice is that if you are offered one go for it. It will be tough but worth it.

Joan

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Hello @Jane,

Knitting is a great suggestion and thank you for recommending it.

Hello @Joan,

Could you explain to some of our members what is reflexology? Also would you recommend it for anyone? Also did you have a particular taste of food or crave a certain meal?

Hello @Nirroc,

I was wondering about your process with the stem cell transplant? Any thing you would recommend to avoid? Or things to keep an eye out for? Any feed back would be great!

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Stem cell transplant is quite a brutal process as Joan has already highlighted although to be fair it was not as bad as I expected. However you do need to be aware that when you come out of hospital your stamina is shot to pieces and you need to avoid being over confident about how much you can do. Inevitably you learn the hard way but once you can get a balance it is relatively easy to pace your recovery. After 3 months I was able to tackle diy jobs and after 4 months we went on a 3 week holiday in the U.K. with plenty of driving and walking without any issues. As with many other things setting yourself short term achievable goals is the key to overall success.

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Relxology involves massaging the feet. Different parts of the feet relate to different parts of the body. So sometimes when the relxolofist is here she will say ‘you have a crunchy shoulder’ but a I have not told her that my shoulder hurts. It is a very gentle therapy and fine for everyone. It he,ps me to relax.

As regards food I found that the chemotherapy and the stem cell transplant did affect my taste buds. I had to have a ‘clean diet’ i.e avoid fruits that you cannot peel, no shellfish etc. However I did crave raspberries and made my husband go to the supermarket to get some. However I ate 6 raspberries and then said I was full!

Longer term I find that I don’t drink coffee anymore and can’t cope with acidity of orange juice. I prefer slightly spicy foods but not too hot and am less keen on bland foods like fish in parsley sauce. My first proper food after my stem cell transplant was a very small bacon sandwich and this was 5 weeks post transplant. Though I still like them I have to avoid bacon because with dialysis you need a low salt diet but do very, very occasionally still have a rasher of bacon, usually on holiday.

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Hi, I had a transplant almost 7 years ago now. I took in various things to keep me occupied including cds and DVDs, books and craft kits. Everything I took into isolation had to be new or able to be cleaned .
I had sherbert lemon sweets to suck as well as ice pops as Joan mentioned.
I also had puzzle books, sketch pads and did a blog too, as well as listening to the radio and playing games on Facebook :slight_smile:
The days can be long and you can be on your own quite a bit.

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Hello @Nirroc,

You suggested making small term goals first then building overtime. What were some of your short term achievable goals during this difficult time?

Hello @Joan,

Does the acidity of orange juice cause stomach issues? Would you recommend anyone going through treatment to stick to a healthy craving of food?

Hello @Joanna,

Thank you for sharing your experience with us. I am glad you apart of the Online Community Forum and you can share your story. You mentioned crafts, what kind of project did you create with the kits? Also, do you recommend ice pops?

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My short tem goals were quite simple. Setting a sensible target to walk each day even if it was only 100 yards. Listening to my body and if it said rest then that’s what I did. Getting back into my leisure interests as soon as I could, especially the creative ones.

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Joshua, Orange juice does not upset my stomach, it just tastes so acidic that it is unpleasant. I have had to adapt my diet also because of the dialysis. I now have a low salt diet but also low phosphate. Whilst the former is more obvious the latter includes a wide variety of foods I need to avoid. For example no game, no shellfish and certain other fish especially sea bass and monk fish, no nuts and the one everyone is horrified at no chocolate! I was never a chocoholic so I don’t mind and find I miss the salty foods more such as smoked haddock, ham etc. However by following the advice I have stayed well on the dialysis.

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Hello @Nirroc,

You suggested being able to walk each day and listen to your body. Did you have goals set in your projects, after your stem cell transplant?

Hello @Joan,

Did the doctors inform you properly about lifestyle change? Did it come as a bit of a shock?

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Walking was targeted by distance such as around our close or down to the shop. Creative projects varied but the main one 3 months after stem cell was to construct a comprehensive set of raised flower beds for my daughter and son in law. This was followed by completing some projects in the garden that had come to a hurried stop when first diagnosed.

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Hello @Nirroc,

Sounds like a great project! What is the process to create flower beds? We may have some more fellow gardening enthusiasts within the Online Forum Community.

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The boxes were each 2ft by 2ft by 8ft and there were 4 of them. Took me about 2 weeks working at the pace that suited my stamina.

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Joshua,

The diet restrictions are because of the dialysis, not the stem cell transplant. The latter had some short term restrictions but not life changing. When considering whether to have haemodialysis or Peritoneal dialysis they did explain about diet changes. On haemodialysis you need low potassium so limited fruit and vegetables.

Joan

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Hello @Joan,

Can you recommend any foods that were your favourites? Any recipes you could recommend? Some people in our forum could use some helpful food tips on dialysis if they need to stick to a low salt and potassium diet.

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Hello @Katherine,

The Online Community Forum were wondering if you could tell us about your stem cell Transplant? We would love to hear about your experience and how you managed your time before and after it.

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I found a really good book Eating well with Kidney failure by Jackson, Cassidy and James that had lots of ideas and recipes. A good lunch dish was Cheesy cheat’s pizza, for dinner fish steaks with orange, lemon and mustard is also very tasty. In general try to avoid using any salt in cooking but instead add herbs and spices to give flavour. If buying soy sauce go for low salt version (Kikkoman’s is best as lowest in salt) and again low salt stock cubes (Kallo’s low salt are the best). I find that with using adjustments to ingredients lots of favourite dishes can still be cooked. Also don’t add salt at the table and gradually your taste buds will adjust.

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Hello @Joan,

Some of those dishes sound great. I did some research regarding the book and the reviews have been relatively high.

Thank you for sharing some of your preferred dishes with us. I think some people in the community will value your advice regarding food dishes.

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Hi Joshua
I found ice lollies or ice cubes really helpful, just to soothe things a little.
One of the craft kits I started was of a Monet painting, and I was hoping to go to Monet’s garden after my transplant at some point. I was thankful to see it about 2 years later :slight_smile:

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