Day 20. I chose to do it

Hi again Naiad..... it's great that a 100% match was found quickly and it sounds like things went well.

Navigating the post SCT journey takes patience and perseverance. Fatigue post SCT takes on another level....... this can take much longer than you would want to get through this. Take each day as it comes, set small achievable goals and if you don't achieve todays goal there is always tomorrow.

Having a set pattern for your day helps - it gives you purpose and focus. I was in a wheelchair for 4 months post my second Allo SCT so my times was taken up with attending regular Physiotherapy session for the first 4 months.

Yes the drugs are plentiful...... I found the Cyclosporin (Immunosuppressants) a big problem as the very smell was enough to make me sick..... but you eventually get there.

I had no GvHD following my first Allo SCT but it did kick in after my second Allo SCT (hit my name for my story)......... but this is all temporary and life moves on and the memories of the early days will become fuzzy at the edges.

You may find this on-going thread Life after a SCT - A Survivor's Guide helpful. It does go down rabbit trails but that the post SCT journey.

Hi Naiad

Pleased to hear your out of Hospital.

This period can be very stressful as it is so new. Try to relax as much as possible but if you feel  well and fit enough try to walk a little outside if you are able. It is vital that you keep well and especially as covid is still very real you need to restrict your contact with others as best you can. Your immune system will be extremely low and therefore your risk of contracting anything is high. Ensure nobody visits who are are feel the slightest unwell, even a sore throat or even the lightest of cold symptoms.

Unfortunately Gvhd is pretty much out of your control, your bodies own mechanisms with dictate this. 

My wife is now 160 days post Transplant and is doing remarkably well, no Infections or concerns.

I have protected her more than I maybe should have but it is working out. As said these are very early days in your recovery and the team will be keeping a very close eye on you over the coming months  Make sure you discuss any worries or concerns with them, they will take great care of you. Keep believing and stay safe. 

Thank you! Day by day.....

Yes Covid is a great concern. Its really good to hear that your wife is doing well. Do you have children around? Once home I have a 17 year old son as well as my partner and not sure how I will keep safe then.

Luckily all our children are older and not living with us. I think it's important that your partner and son take regular LFT tests especially if they work around others and socialise regularly. We were told that If I became infected, I should isolate as best as possible in a separate room, wear a mask when leaving the room or being close to my wife.

Also ensure you have plenty of sani wipes for all door handles, switches, work surfaces.

Also have individual hand/bath towels. Again your team can give further advice if they did get Infected. 

Has your wife had her covid vaccination yet?

The important thing to ‘get’ is that it’s any infection that can be a problem so following  everything that Fulhamboy has listed is basically what I was doing back in pre-Covid days (2014 and 2015)… including  wearing a mask in and around hospitals - got some funny looks back then but now

Yes ok

Yes she has her first dose in December and due her second next month. She's had a letter from her Consultants to confirm she will be allowed a fourth dose 6 months after her third. I guess however we all will by then. 

Naturally all her pre transplant jabs were nullified following transplant 

Correction

Her 4th dose is 3 months after her 3rd not 6.