Hospital stay with COVID restrictions

Hi and welcome to our corner of the Community. Sorry to hear about your mum going on the SCT rollercoaster but as a double Allo (donor) SCT veteran, it saved my life (hit my community name for my story)

My two Allo (donor) SCT were not in Covid times but there are a few members have experienced this both as patients and family so let’s see them pick up on your post.

Bedding etc is systematics changed ever day so this is not a problem but if her SCT unit is like my one, I had to have a complete change of clean cloths every day and night…. all designed to reduce infections.

We live in Inverness but my SCT unit was in Glasgow so it looked like we were going on a world cruise when we left fir Glasgow 

Her SCT team should provide clear information with regards to the do’s, dont’s and how to prepare but have a look at this long running thread Checklist for SCT Unit as it highlights people’s thoughts about prepping for the weeks in the unit and as to what helped.

I have talked with a few folks not on this site but on a Lymphoma site who have recently gone through SCT and in some circumstances a dedicated family member was able to have restricted visiting times…… but reflecting back to my SCTs my wife had a family room on the ward but at times she may as well have not been around as I slept so much.

Happy to talk more as getting your questions answered is have the battle ((hugs))

Thanks for reaching out and great to hear you are doing well

It’s been challenging particularly as diagnosis and Treatment has all been discussed with mum on her own, so I never really get the full story and end up with more questions than she can answer, and don’t want to ask questions that she herself doesn’t want to know the answer to….due to her age she can only have 1 STC. I just want to try a make it as comfortable and stress free as possible. The list is really useful so I’ve started shopping already. Hope you continue to do well xx

Hi again, having 2 Allo (donor) SCTs is rather unusual but I was an unusual case but people can go from an Auto SCT (own cells) on to an Allo SCT (donor cells) abd indeed I have talked with a few people in their late 60s who have done this.

What type of SCT is she actually having?

In Covid times communication is difficult and although I am now coming up to 6 years out from my second Allo SCT I unfortunately ended up in hospital at the end of our holiday in Surrey a few weeks back half way home to Inverness.

My wife was not allowed into A&E but she was ‘there’ as I had her on FaceTime every time a medical professional was talking with me. This is what I have been recommending for everyone going into treatments, I totally get the need to restrict infection but it dies not stop someone being there vertically.

Has she had all her pre SCT health tests yet?

You do need to develop a communication system with her but more importantly her clinical team as there are so many twists and turns in the SCT journey that you will be at risk of just not being up to date with plans and progress.

As always this group is around to help you out.

Hi yes she’s having her own…, so Auto I assume?  She had a meeting on 19oct where the tests all start. She is currently at zero whatever that means which is apparently good, but she has 2 high risk indicators…. From what I understand from the description, her MM will be back very quickly without the SCT but that’s about it. I will see about being involved virtually, but I’m afraid of stepping on her tors as I  very much a person who needs to know everything, where she will just go with everything that suggested without fully understanding as she doesnt like to trouble people. I need to have an honest chat with her I know that x thanks

Hi Reedy71

My wife has recently been discharged following her Stem cell transplant, as,Mike states, Hospitals are very well equipped to deal with infection control and even more so at this difficult time. Regarding bedding etc, this will all be dealt with via the Hospital. In respect of visiting, check with her team as depending on the Hospital itself it may be possible to have limited visiting. I was allowed 2 visits a week for 2 hours at a time, as we lived so far,away it was not really suitable. However luckily my wife came home only 3 weeks following transplant. Any questions you have please ask and I'm sure this community will help wherever possible and don't forget to ask the clinicians of any concerns you have.

FULHAMBOY (Nick)

Fulhamboy (Nick) I hope your wife is starting to feel better very soon. It’s so difficult as I appreciate everyone’s journey is different and whilst I will never understand what she might go through I want to try and look at anything which might help her through it. I don’t want to provide just practical ‘medical’ support ie loads of knickers! But things which may keep her busy, make her smile or simply hit her with an OMG moment you know a real - this is just what I needed and didnt know. So I’m really interested in anything that people felt helped either emotionally or mentally when times where hard. My mum has a real physical strength with these types of things but the mental battle is hardest for her.

Hi Reedy71

• Having good physical strength is a good thing, this treatment can take a bit hit to your physical ability and she will feel quite fatigued for quite some time. Whilst in Hospital I'm sure she will be advised on small exercises she could do, and when home after a while, try to take short local walks around her close neibourhood ideally with a relative. This will keep her muscles working as it is very easy to get wastage during treatment. There will be times in hospital that she will not feel like doing anything at all. Try and give her a book or two to read if she likes this, puzzle games and hopefully her room will have a TV. Keeping the mind occupied will help a great deal. If she has a mobile phone regular calls and video chats will help knowing that you are with her all the way and seeing you remotely will help her mentally.

Hi again, so she is still in the early stages in the process and the tests need to check that see if her body is 'up' for the SCT process as the bodie does go through a lot.

With SCT you are totally at the mercy of the team and honestly you have no control. The link in my above post Checklist for SCT Unit covers the practical prep for being in the SCT unit. But a good understanding of the process will also help.

This is my Simple Guide to an Auto (Autologous) Stem Cell Transplant.

For an Auto SCT the patient will have to be in a window of remission so that their Stem Cells can be harvested this often requires what is often called salvage treatment.... basically some chemo that can often be strong but is designed to achieve the goal.

The patient will most likely have a week of injections to make the bone marrow work overtime to produce lots of Stem Cells.

To harvest the Stem Cells a line is put into the arm. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job by the bonemarrow so this is before they turn into Red or White blood cells etc) and the blood returns through the line back into the blood stream.

The machine can pick out millions of stem cells over a 4-5 hours process. The harvest is on the whole painless and once harvested the Stem Cells are frozen.

Leading up to the actual SCT the patient will have to have treatments to get to a stage where the SCT can proceed.

So 7ish days leading up to the SCT day he/she will have to go through what is called Conditioning, its a method of taking down the bodies Immune System completely.

This is normally done again using some very strong chemotherapy and for some like myself, Radiotherapy..... but I had an Allo SCT.

Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion through a Central Line.

The Stem Cells then go to the Job Centre in the Bonemarrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells and the all ’New You’ starts to grow as the body starts to reboot the Immune System and over time the blood counts come back up.

Its all very cleaver, very science fiction but all very do-able.

Each SCT Unit will do their own thing but for an Auto SCT the conditioning can be done as an out-patient then when the patient is get close to get their cells back this is done in a dedicated SCT unit.

Its a very clean environment (Ward) in a hospital, the patient may even get their own on-suite room. The time in the unit will be different for everyone but expect at least a few weeks - but the medical team will keep the patient well informed.

Remember the patient does not have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until new immune system kicks back in. The patient will be an in-patient for some of the time but this all depends on how fast the ’New You’ starts to grow. The average is about 4-6 weeks in the unit but can be quicker.

Once the patient gets discharged they do need to be very carful during the weeks following the SCT as the new Immune System is still growing so care with coming in contact with infectious environments but their team will give lots of guidelines.

Expect weekly appointments for bloods etc as they will want to keep a close eye on the patient.

I would also say that the fatigue following a SCT is much higher than going through regular chemo but that could just be me, going off food and some mouth issues do come along but these SCT teams will help as they have seen it all before.

You will have lots of questions so you will find me and others able to help out with anything SCT related.

Once you know the name of the Conditioning come back as we can help with that one as well.

I always say that you can’t do anything to control the actual medical treatments but you can make a difference to how you get through your journey, but we can help you get though this.

More info about Understanding stem cell transplants using your own cells (autologous) - PDF here.

Sorry that this is all a copy and paste but I am actually at a family wedding so don't tell my wife

Lol! Enjoy the wedding. This is reallY useful. She signs her consent on 19th October and they have said admission expected 1November. Once I know more I will no doubt be back on here.  Btw just read your profile you are one very strongman, your family must be so proud and thankful of you fight x may your health continue to stay good xx

We all do what we need to do to 'live' and although SCT is not a walk in the park it gives the chance to achieve that goal of living a longer and happy life.

Any questions post them as someone will have answers. Coming out the other end of SCT has its own challenges but this post looks at this part.

community.macmillan.org.uk/.../life-after-a-sct---a-survivor-s-guide