SCT Late May

I hated it when I had a tube down my throat in 2013, was there for 2 weeks but it was after they woke me up from my induced coma that it really got me, sore throat for about a month.

Today I have a sore throat, its a bit swollen and red looking so been sucking lollies hahahaha.

Off to the docs tomorrow and I'm swelling up, think its fluid retention.

Hope you do get home, can't beat that ever

Good to hear from you, Mark, hope that throat eases very soon, which it will as your counts rise. The criteria for getting home seems to be managing meds orally and being able to get about under your own steam just from bed to chair to bathroom etc! 

Remember that getting home in itself is exhausting, so take it steady but try to do a little more each day/week/month! Remember a SCT is at least equivalent to a major operation.....don’t try to run before you can walk! 

Hugs xxx

Well I spoke a bit too soon yesterday,about an hour later my temperature spiked. Been feeling rough since and the results are my line is infected and I have the CMV virus .Not sure what the plan is but unlikely to be home at the weekend. On the plus side neutrophills up to 0.6 

Mark

Mark,

I am so sorry to hear that, but at least you are in the right place for it to be corrected. Good luck and I'm sure the wait will be worth it.

Hi Mark

thats a pain! Hope they get on top of it all very quickly.....

hugs xxx

Hi Mark

Sorry to read you have a couple of infections. I hope you are feeling a bit better today! Are you around day + 12-14 now. .? Hopefully your neuts are up now and you are getting stronger by the day! 

Hi Folks

I finally came home on Tuesday after 6 weeks. 

I continued to feel unwell for over a week and then my breathing became difficult and was admitted into intensive care 15 days ago with respiratory failure.Quite a scary time but they sent me back to the ward after 8 days ,last Thursday. Amazingly they had weaned me off oxygen by Sat and once I could prove I could walk again they were happy to send me home.Throughout this ordeal it was easy to forget that I had had a transplant but thankfully that has engrafted well and my counts are looking good,only one platelet transfusion so far.

I am extremely fatigued and quite nauseous but managing to eat a little.

Back tomorrow for blood tests just fearful they may keep me in for some reason

Mark

Hi Mark, welcome home.

The SCT fiurbey is a true rollercoaster and you have to expect the unexpected. It is like major surgery so recover will take time so slow and steady does it.

Eventually all the stories, experiences good/bad will get fuzzy at the edges. It’s all about moving this forward. The eating thing is hard, do t try normal plates of food but graze on easy to eat food like mashed potatoes, with cream, cheese and gravy. I know it’s warm outside but cups of good home made soups work well.

We have this thread that has collected the post SCT wisdom from the folks looking ay the first year challenges and how they got through them - have a cup of tea and have a look. 

Life after a SCT - A Survivor's Guide

Well done.

Hi Mark,

It sounds like you have had a horrible time of things lately, just like the other Mark. But it’s fantastic that you got through that and got home. I know the feeling of living hour to hour and you must surely have had some tough times over the past few weeks. But it’s great you’ve come out the other side and can look towards getting yourself better. Small steps are the order of the day right now, metaphorically and literally, and some of those steps may be backwards, but if you keep your head down and keep ploughing on, I’m sure you’ll find that overall you are going in the right direction.

Here’s hoping tomorrow goes well.

All the best

Greg

6 weeks is a mighty long time, I bet you are loving being home and in your own bed!