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Day 63
Well ...today is day 63 since receiving my sisters stem cells and it's been a bit of a roller coaster of a journey with some ups and downs. I left hospital at the end of August after exactly 4 weeks - only to be readmitted 3 days later with potential GvHD - I have to say I was devastated but was only in for 6 days whilst they sorted things out.
Since then it's been frustrating - and I didn't realise how annoyed I would get. Most of the time I feel great - energy levels are back to pre-transplant and I'm eating well etc etc - but my blood counts keep dropping through the floor. This is because I still have extensive scarring in my bond marrow from the Myleofibrosis and this will disappear over time but until it does - I will need transfusions. This is fine - except that my hospital are sometimes terribly disorganised and I have had blood samples go missing, a simple platelet transfusion can take 4 to 5 hours to complete, the doctors ring me at all hours telling to get to A&E not realising that I am very used to operating on a very low red blood cell count (it's got to the point now where I ignore the hospital number on my phone - which is very bad I know but I cannot deal with more unnecessary drama).
So after getting horribly depressed and down last week over all this nonsense, I decided to return to work today - my boss was very happy to see me back if somewhat surprised and I've arranged to come in 2 days a week initially with 2 days working from home and then build up my office time from that as I get used to the commute again...and I am so happy to back. I know it's a bit early - but being at home on my own, was going to lead to some serious mental health issues, partially caused by the stress at the hospital - and I feel physically well enough to be at work and couldn't really justify being at home any longer.
I'm due back at the hospital tomorrow - I hope to get some decent nurses who are actually able to get my bloods to the labs, fully labelled - and can stop to think about what I actually need, opposed to doing things this way because we've always done it this way, regardless how short staffed we are. Actually - the nurses are brilliant but just overworked and too many mistakes and not enough thinking is happening - I don't blame them at all.
Since then it's been frustrating - and I didn't realise how annoyed I would get. Most of the time I feel great - energy levels are back to pre-transplant and I'm eating well etc etc - but my blood counts keep dropping through the floor. This is because I still have extensive scarring in my bond marrow from the Myleofibrosis and this will disappear over time but until it does - I will need transfusions. This is fine - except that my hospital are sometimes terribly disorganised and I have had blood samples go missing, a simple platelet transfusion can take 4 to 5 hours to complete, the doctors ring me at all hours telling to get to A&E not realising that I am very used to operating on a very low red blood cell count (it's got to the point now where I ignore the hospital number on my phone - which is very bad I know but I cannot deal with more unnecessary drama).
So after getting horribly depressed and down last week over all this nonsense, I decided to return to work today - my boss was very happy to see me back if somewhat surprised and I've arranged to come in 2 days a week initially with 2 days working from home and then build up my office time from that as I get used to the commute again...and I am so happy to back. I know it's a bit early - but being at home on my own, was going to lead to some serious mental health issues, partially caused by the stress at the hospital - and I feel physically well enough to be at work and couldn't really justify being at home any longer.
I'm due back at the hospital tomorrow - I hope to get some decent nurses who are actually able to get my bloods to the labs, fully labelled - and can stop to think about what I actually need, opposed to doing things this way because we've always done it this way, regardless how short staffed we are. Actually - the nurses are brilliant but just overworked and too many mistakes and not enough thinking is happening - I don't blame them at all.
Comments
I am the nurse specialist in patient services, thank you for posting on the forum and sharing your experience. You do seem to have had a roller coaster journey which I am sure has been very difficult at times.
As you might have seen from other post on the forum it is very normal for recovery to be up and down, especially in the beginning and if you do get some GvHD. Over time this should improve but unfortunately it can take some time. Its great that generally you are feeling well, eating and energy levels are often the 2 things that take the longest to improve and symptoms can come and go. Day 63 is still quite early in the recovery so maybe be mindful of this in the future and especially if you are now starting back at work. You have made good progress and it can be easy to sometimes push yourself to far which can set you back. Of course I am not saying this will happen to you but I think all patients should remember this especially on the good days when you might be tempted to do lots. A phased return to work is encouraged to help you adjust both physically and mentally. Starting back at work too quickly and doing too much all at once might mean that you have to stop working again, which would be disappointing for you. Taking a slower approach would enable you to build up your hours so that once you start back at work you can stay back at work.
Have you discussed going back to work with your medical team? Going back to work is very important for many patients and should always be supported as long as it is safe for you. You will still be at risk of infections, especially if you are on immunosuppression and now we are coming in to flu season you should have your flu vaccination. It might be that you have just take some extra precautions at work and ensure that your colleagues are aware to let you know if they are under the weather, but if you have not done so I would strongly advise that you do discuss it with someone in the transplant team. Also you mentioned commuting in to work? At this very early stage, we would definitely recommend that you avoid public transport, the risk of catching infections is very high. We have some booklets that you might find useful about going back to work and infections after a transplant which you can find here
https://www.anthonynolan.org/sites/default/files/903PA_Mini_Emotional-Infections_lores.pdf
https://www.anthonynolan.org/sites/default/files/878PA-PatB_ReturnToWork_Patients-200x250mm-40pp_LR1.pdf
We also have a blog that you might find helpful about infections after a transplant and how to take care of yourself. Its written from patients so will have some helpful advice, you can find this here https://blog.anthonynolan.org/2017/09/5-questions-with-5-transplant-patients-on-infections/
As a nurse who worked in a very busy transplant unit for 14 years, I can understand as much as I can your frustrations. The nurses and team get frustrated just like you and I know that if patients were delayed and kept in the unit for longer than they should have been we felt terrible for them. You could bring this up with a member of the team that you feel comfortable with, feedback can be a good thing and will help improve the service. This is clearly having a negative effect on your mental wellbeing so its important that you discuss it. Having a transplant is challenging and its very normal for patients to need support either just through talking with friends and family or something more formal like counselling. Again you can discuss this with one of the transplant team as they will be able to refer you.
I am also happy to discuss anything with you if you would prefer, so please feel free to give me a call on 0303 303 0303
Please keep in touch
Best wishes
Hayley
Your readmission to hospital within days of going home after your transplant echoes mine. I was discharged 4 weeks after my transplant on the Friday, developed an infection over the weekend and was back in on the Monday! It was my lowest point in the whole of my treatment as I found it a real setback and ended up seeing a clinical psychologist as a result, but thankfully it was short lived and like you within a week I was feeling better and the infection was getting under control.
I've had other setbacks along the way and went through a phase of passing out, including two occasions whilst having chest x-rays where I collapsed in the X-ray room and banged my head on the very hard floor!! That turned out to be unexplained and I think it was just that I was so very weak.
You are still very early in your recovery so I applaud you for getting back to work so soon, but I'd also urge caution. Depending what you do for work and the environment you are in you absolutely must look after yourself. Your immune system is in it's infancy and you are prone to infection. If you are exposed to lots of people you run the risk of picking up an infection, particularly at this time of year when coughs and colds are prevalent.
I'm assuming that your commute involves driving yourself there in your car rather than using public transport, so that you can maintain some isolation rather than mixing with the unknown.
I completely understand the need to occupy your mind whilst you are at home. During my recovery I became almost stir crazy and was sick of daytime TV. Working on construction sites I was unable to return to work for a long time, so I ended up building a home office in a log cabin in my back garden which allowed me to start working from home with work that I could do remotely from the office. My employer was really good so I wasn't overloaded with work and probably only did a few hours a week actually working. My office gave me the opportunity to do other things though and I spent a lot of time fine tuning a book I'd been writing and doing some family research.
It sounds like your boss is supportive and as they were surprised to see you perhaps they too might be worried that you might be pushing yourself too fast. It's not necessarily a bad thing, but talk things through with your boss and your medical team. Depending what you do you can perhaps call in occasionally and pick work up that you can do at home, rather than spending too long in the office. I know the company is something you possibly need and the feeling of getting back to normal, but if you can occupy your mind and keep busy it may help.
Take it easy and ease yourself back into things steadily.
All the best,
Steve
Hayley - my medical team are aware I've returned to work and are happy enough with that - just a bit surprised as it is still very early to do so - but they also see I'm a very determined person and somewhat stubborn :-) - and like you have urged me to be careful and not over do it. I am sitting away from the general population in the office in a little corner so minimising contact with people. Unfortunately I need to take public transport to work but I constantly use my hand gel and wash my hands and face as soon as I am able to do so. I have been using public transport to get to and from hospital and that is a longer commute - sometimes there is no choice in this. The nurses I saw on Tuesday remarked how much happier I seemed- they've only seen a grumpy patient in me - and it's purely because I had something else to think about other than how long my treatment was taking to get started - the nurses have been fantastic really and put up with temper tantrums very well - I do try so hard to contain my frustrations as I know they are understaffed and overworked and sometimes they get patients for whom things just always go wrong. This is why work is so important for me - and other people as they get to deal with the happy, relaxed and laid back person that I normally am.
Dieseldrinker - I love the thought of building a home office ! Sounds perfect. I too have a very understanding work place - I'm an accountant so my work is not physically demanding at all and it's easy to work from home so I can take it easy and not over do the commute etc. I am listening to what my body is telling me - and if it all gets too much - then I will just go back to bed and try again later - I don't see the point in making myself ill over work - but rather using work to help me get better quicker if that makes sense.
it's great that you're getting back to work and even if you are working from home you'll find that keeping busy will stop you going stir crazy. From my own experience I know it helped me although my employer seemed to be careful about not burdening me too much. Having the home office separate from the house also allowed me to keep the two apart, and my daily commute was about 15 metres!
It was good sometimes just to get out there and feel that I was at work even if I had little to do, and I had the bonus that in summer I could throw the doors open and have the garden at my side and only my dog for company. I had a coffee machine out there and music on tap so the only thing I had to go back to the house for was the toilet. In fact now that I'm back at work full time and based on a busy construction site there are times I wish I could go back to working from home!!
I guess my only advice if you continue as you are is to be sensible about travelling on public transport and take precautions to avoid infection. It's good that you are using hand gel to protect yourself from infection from things you touch, but remember that many of the things that can harm us can be airborne, so if it was me I would perhaps avoid travelling when the bus or train is full and go off peak when there are fewer people in there with you.
Take care and thanks for posting.
Steve