Having been free from hospital (well, aside from the
outpatient appointments that is...) for almost three weeks now, life has
settled down into a new routine. I have obviously needed a fairly rigorous
treatment regime throughout my whole life, I am far more ill and more dependent
on various machines and medications to lead any sort of normal life, it has
become even more important that I follow a strict treatment routine. I thought
that I should give you all a flavour into how my day to day life pans out!
Morning
8.00am – Luke or Mum (depending on whether Luke is at work) gives
me my first dose of intravenous antibiotics (IVs) Currently these are Colomycin and Meropenum
8.30am – IVs finish and I come off my Non Invasive
Ventilator (NIV), switch to my oxygen through nasal cannula and get washed and
dressed for the day.
9.00am – Come downstairs and take my morning tablets (approx
10 drugs including slow release morphine again to combat chronic chest pain)
and eat breakfast, I usually try to ensure that my breakfast contains about 700
calories. I also take two types of insulin in the morning; a long acting insulin
and a short acting one. If my chest is particularly painful I will also apply a Lidocaine patch to the affected area.
9.30am – DNase; this
is a nebuliser which helps to break down the thick mucous in my lungs to make
it easier to cough up during physiotherapy. This needs to be taken about an hour
before I begin physio.
10am – Exercise time, I use my NIV to do some exercise on
the Wii fit. The reason it is necessary for me to use the NIV is to allow my muscles
to actually become worked. If I were to not use the NIV, I would become out of
breath before my muscles had a chance to even warm up. This means that I can
(try) to keep my arm, leg and core muscles in some sort of shape which is
really important for transplant.
10.30am – Physiotherapy; whilst using the NIV to help me
take deeper breaths and get behind sputum secretions, Luke or Mum will tap and
shake my chest to help me cough it up.
11.15am – TOBI nebuliser. This is nebulised Tobramycin which
is another antibiotic to help control the pseudomonas aeruginosa that my lungs
are colonised with. At this time I also
need to check my blood sugars to make sure that I’ve taken enough insulin with
my breakfast.
Afternoon
12.30pm – Lunch! Again I need to take short acting insulin
with my meal and I aim to consume about 1000 calories in my lunch... Got to
pile on those pounds!
2.00pm – Physiotherapy, as before
2.45pm – Second dose of IVs of the day.
3.15pm – IVs finish and Mum goes home (if it’s a weekday). Also check blood sugar levels.
4.00pm – Snack time, usually something like a Pot Noodle, or
a hot dog as well as a bit of healthiness in the form of fruit. I also try to do some kind of gentle walking exercise during this time, without the use of the NIV.
Evening
6.00pm – Dinner time; again this is usually about 1000
calories as I need to consume about 3000 calories a day.
8.30pm (ish) – Physiotherapy, as before. Check blood sugars.
9.00pm – TOBI nebuliser and evening tablets, approximately 5
drugs this time, including slow release morphine.
9.30pm (ish) – bath; sometimes I need to use my NIV whilst
having a bath if I’m particularly tired or finding breathing a struggle. I
usually have some sort of snack here too (not in the bath might I add!)
10.00pm - Final dose of IVs of the day
10.30pm - Finish IVs!
11.00pm – Bed, attach myself to the NIV mask. (I also check my blood sugar levels before I go to sleep)
Reading this routine, it may seem somewhat demanding and I
suppose it is to an extent. It does mean that I require Mum, or somebody else
if Mum isn’t around to come down in the morning and afternoon to help me when Luke is at work. Sometimes
it does feel that I am just living this routine and waiting for the transplant
call to come. Fortunately it is flexible to an extent and I am able to be taken
out for a bit of shopping, or a coffee. However, as is evident, the evenings
are less busy in terms of treatment than the day, but after a long day at work
the last thing Luke wants is to go out again! This means that we do have to
plan outings and such in advance. Also, what I also have to take into consideration
is that I get so tired from going out that I need to spend the following day
taking things more easily (namely sleep a lot!). Luke and I do still manage to do things, like
go to the cinema (well, we haven’t tried it since coming out of hospital, but
we do want to go and see the new Bond film when it’s released!!) We also manage
to out for meals occasionally. I am very lucky to have many fantastic friends
who come round to see me and are able to fit around my routine. The support of
my friends and family is definitely what keeps me strong during this time and
hopefully, if that call comes, I will be free from this regime and I can enjoy
the freedom that I experienced before!
