Stem cell transplant

Good morning  a Stem Cell Transplant (SCT) journey can be as hard for the person looking on as it is for the one in the bed.

Infections are a big problem so being carful is very important at this point in time but you have found the Community and we are around to support as best as we can.

I have been through two Allo SCTs with cells from my brother and yes I am doing great - hit my forum name to see the story.

Although my condition is a different type of blood cancer the SCT journey is basically the same regardless the type of blood cancer.

You will pick up a few who have been on the SCT journey in this group but most folks move over to our very supportive Stem Cell Transplant Forum. The group as both folks who were in the bed or thirst like my wife who are sitting on the chair.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

The link will take you to a list of all the various discussion so you can have a look through and get a taste........ but the best way to connect is put up your very own post.

The SCT rollercoaster can be a touch scary but we are around to help you through this.

I will keep an eye open for you ((hugs))

Good morning M18

I had my transplant in May this year at the age of 62, having  my second consecutive birthday in UHW hospital Cardiff .

My lovely wife is my carer.

We live about 70 miles from the hospital so she booked a room in the nurses / doctors accomodation only a few hundred metres from the wards. Not sure if many hospitals do this but it made life so much easier for her as she could just pop and see me and leave me if i felt tired.

I had the reduced intensity conditioning, chemo only and plasma exchange due to my donor being a different blood group. 

The transplant was just like having a transfusion and within about 10 days my neutrophils started to kick in so things were going well. I did have a few complications however, with fluid on the lungs so ended up in for 6 weeks.

Going home was lovely but I found it quite difficult loosing the security of the nurses and doctors.

I was obviously very tired and nauseous due to the amount of post transplant drugs so we had to experiment with food I fancied. She tended to buy different things every day,luckily we live very close to M&S !

As the weeks went by my appetite did improve and we started cooking our own meals again.

I tended to need a sleep every afternoon for about an hour and would always be in bed by about 9 pm.

After about a week at home we tried to go for a little walk every day and this definately helps mentally and physically.

Twice weekly trips for blood tests are a pain and she obviously drove for the first few months.

I started to feel stronger after about 3 months and she went back to work in September but taking a day off to drive me to Cardiff for blood tests. I was able to go to our local hospital on my own.

It has been a difficult journey emotionally and physically but it does get easier as the days go by.

I hope this helps and  all goes well for you both xx

Mark

Good Morning Mark 

Thank you so much for your reply and recount of your experience 

its really heart warming to know that despite all the medication and intensity of the treatment that you have such a positive story 

my partner is in the same age group as yourself. due to the strict transplant protocol of the hospital its taken 5 months to find a matched donor . Luckily all follow up bone marrow results have indicated that he is in remission but having to cope with chronic fatigue 

we live a 50 minute drive from the hospital where the transplant is going to take place . the hospital cannot offer any accommodation. Luckily one of my daughters lives 20 mins away, so i may sleeping there on many occasion

at home we do have an M&S within walking distance! 

I do hope that your recovery continue well and that your and your wife have a good christmas 

any other tips about what helped you cope during the hospital stay would be really useful 

Hi M18

One other thing I forgot to mention is that I purchased online a mouth wash called Caphasol . It was mentioned somewhere on this page. Some health authorities use it ,some dont but i am sure it prevented sore mouth issues in my case which is something I was dreading .