Stem Cell Transplant Hospital Discharge

Hi Little C and welcome to our little corner.

First well done him getting through his SCT...... what type did he have... his own cells Auto or a donor Allo?

Every SCT Unit will have its own follow up system so the very best thing you can do is call his Transplant Coordinator and ask them...... but lots of appointments is unfortunately normal.

My two Allo SCT were done down in Glasgow - we live in Inverness. This is a 9 hr round trip by car. We did this journey every Monday for the first 5 weeks post SCT for a 30min appointment!!!! and also into my local hospital on a Thursday for bloods.

Then it moved to every second Monday in Glasgow for about 6 weeks but still the local weekly Thursday bloods....... all very hard work.

You can hit my community name Thehighlander to see my rather long story.

You may find this ongoing threads helpful Life after a SCT - A Survivor's Guide where we have tried to collect or post treatment experiences.

((hugs))

Hi,

Thank you for replying. He's got a rare form of Acutel Myleod Leukemia and my 16 Yr old daughter was the donor bless her.

So we could ask for his bloods to be done at our local hospital? He's got an appointment with his transplant consultant on Friday so we'll ask then.

I'm still working as now the only main earner in the house but I'm in such conflict with myself as to wether to carry on working or be at home to look after him. Just want to do the right thing for everyone. 

I'll have a look at your thread, many thanks. 

Good Morning Little C 

I had a transplant for AML . After discharge I has twice weekly appointments, one in my local hospital and one in Cardiff where I was treated which is 70 miles from home. For the first few months these visits lasted up to six hours as I needed various infusions  of magnesium, saline etc. Luckily a didn’t need transfusions as some other patients did in the day unit. I would have been unable to do this journey on my own as I was too weak after the ordeal of the transplant. I would advise you to try and take time off work to care for your husband if possible for a few months. Feel free to message me if you like. There are also some useful Facebook groups. Hope everything goes smoothly for your husband and he starts to feel better soon x

Good morning Little C, good on your daughter stepping up, my brother was my donor.

It can’t be under underestimated the challenges in the post SCT recovery and recuperation, for some this can be long and complicated but others do well so this will all be governed by how well your husbands gets on. I was fine after my first Allo and hit the ground running but 6 months on the graft had failed.

Following my second Allo I was in a wheelchair for months and had months of physiotherapy to get back on my feet, I was having difficulty eating, could not prep food, was advised not to drive for a good number of months after I was in my feet as I had no strength in my legs.

My wife worked from home anyway so she was always on hand but could not have survived without her on call.

Infections are one of the challenges so vigilance is important I was 5 times back in hospital (31 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Sepsis x2, A Fib and three months of low blood counts caused by GvHD so regular blood transfusions every week.

So try and make life as simple as possible, try and reduce the long journeys, I just lay in the back of the car and slept up and down to Glasgow.

But I am over 5 years out, in remission and doing great so this period of time is temporary and this will improve.

((hugs))