Leanne's blog
Hi, I am Leanne and I am a
21 year old congenital heart patient, and over the next couple of
months I will be writing a regular blog about my heart valve
operation that I am currently waiting for.
Week 8 December 09 - January
2010
My stress levels and workload
have doubled in the past weeks so this blog is a
combination of a few blogs I was writing before Christmas and into
the New Year.
Before the workload got too much I managed to fit in a
relaxing weekend break a fancy 5* hotel and spa. It was my
21st present off my boyfriend. The place was lovely, it was on the
outskirts of Leeds, yet it felt as though it was in the middle of
nowhere. As part of the weekend I was treated to an
aromatherapy massage. Because of this, I had to discuss my
heart condition, luckily the therapist assured me that the
oils she used were safe for me to use, as sometimes oils that soak
into the skin can cause problems with people with long term health
problems. I was a bit naughty and ignored the warning on the
Jacuzzi about people with heart conditions not using it
though...whoops.
I was finally referred to cardiac rehabilitation after many
phone calls. I had a home visit to discuss my options. It
isn’t usual for someone of my age or with a congenital heart
condition to be referred to the team dealing with me. The nurse who
came to see me was very helpful, she provided me with lots of
advice, but told me the swimming I have been doing isn’t
appropriate. So for now I am trying to do 30 minutes of walking per
day and getting my five a day too.....which is pretty difficult as
my sweet tooth seems to take over , the walking however is easy
though if I spend a few hours shopping I think that’s a
couple of days walking at once!
I went for my 2 month check up with my consultant. It was one of
the quickest appointments I have ever had; all in all it took an
hour with tests, which I think is a personal best, definitely an
improvement on the 4 hours last time. It wasn’t the best
appointment though. I had a few questions, and only a few were
answered. All I know now is that my heart works a little
bit better, which is annoying when I was told it was great, and now
he can’t tell me how long it will last. As for my side effects that
I am still getting, he just brushed them off as nothing to do with
my new valve, so it’s back to the GP for
answers.
I went back home for the month
long uni Christmas break, and spent most of my time stuck
inside thanks to lovely weather and attempting to do my suggested
30 minutes walking proved difficult. Luckily I got a fitness pack
for my games console for Christmas so exercising is now more fun,
although I get told off by the computer as it knows when I stop or
I am not doing it properly! Front room Yoga is not for
me. I may have found a new job shovelling snow
though, I cleared the driveway quite well....just
a shame that the car couldn’t get out of the street.
The essays are proving more difficult than first thought so it’s
back to the books for now......
Thanks to
all those who sent in feedback to last week's blog - you can see
our feedback to the story on the Yheart
Facebook Group! - feel free to leave a
message there or email yheart@bhf.org.uk
- we really appreciate all the comments
Week 7 December 2009
So, I have had a busy time
recently…
Have been trying to exercise for
the first time in 5 years as well as juggling Uni work. My
idea of going swimming wasn't my greatest. I arrived optimistic,
and without realising jumped on in right at the deep end, well the
fast lane. I didn't realise there were different lanes for
different speeds and abilities, so was confused with the
funny looks I got as I spluttered around like a drowning idiot as I
quite obviously wasn't able to get straight back into it as I
hoped, but my housemates found it just as hard as me at first and
they are meant to be strong healthy boys! But I am since
improving doubling my lengths each time I go :)
Due to my side effects still causing me
problems I managed to get an emergency appointment at the Heart
Centre. I was seen quite quickly to have my tests: scans, bloods
etc. However my doctor got caught up in something so I had
to wait around for 4 hours. The good news is my heart is
doing great, the bad news is it doesn't give me any answers as to
why I am getting strange side effects. If it doesn't ease off soon
like my doctor hopes it will then I am going to have to try
steroids :(
I finally tested out my doctor’s theory
that I would be clubbing after a week.....5 weeks later, I
went out with my friends to the local sports bar. I knew
it was a big un-crowded place so I could give my chest room to
breathe. I got slightly adventurous and went the on
mechanical surf board, despite my friend worrying it was
bad for me! She probably had a point........ I felt fine so she was
obviously worrying about nothing. I have been staying in with my
law books far too much over the recent weeks. It was nice
to get back to doing normal 21 year old stuff.
The work is now piling high, and I
have essays coming out my ears, so time to see how
I deal with stress now the hearts normal, well normal as it can be,
again. And even though I am still getting those hot flushes I
actually find it useful with the current British
weather....every cloud and all that....
Thanks to
all those who sent in feedback to last week's blog - you can see
our feedback to the story on the Yheart
Facebook Group! - feel free to leave a
message there or email yheart@bhf.org.uk
- we really appreciate all the comments
My recovery so far has been
rather quick. However I have noticed some strange side
effects. At first feeling warm was a blessing, but now I
get hot flushes and have since had an allergic reaction to
my contraceptive injection, which makes me wonder about the tongue
swelling a few days after my operation. Have I suddenly become more
sensitive and allergic to things I have never had a problem with?
It concerned me slightly but I know I will be going back to
clinic soon so I can discuss my concerns
then.
My first day back at Uni started
well. I was disappointed that I was still breathless when
I got there, but then again I hadn't been on a long walk since my
op, nor is my fitness that great anyway, and it was before
lunchtime.....I had a lot of lie ins after my op so two 9 o clock's
in a day was a strange concept :) I had managed to catch up
during my time off and so I didn't feel totally confused in my
lectures which made me feel much better, but I knew I could ask for
help if I needed it. However it was during this day I
suffered my allergic reaction so it put a dampener on the
afternoon and made me feel quite ill the rest of the
evening but i got through it and didn't feel too terrible the next
day.
I turned 21!! I made it to 21 and
I was well enough to celebrate. I arranged to go out for a
very civilised and grown up meal to one of my favourite Chinese
restaurants followed by some drinks in a city centre bar. I started
my day with a lovely cooked breakfast and a little glass of
champers. I got some great gifts, and my boyfriend
surprised me with a 5* spa break weekend which I am going on next
month, and after all the stresses lately it is just what i
need!
Now the operation is out of the way, and
despite the random side effects, I am starting to think
about exercise, I have even run for a bus, let alone gone
to a gym in my life so I think it is a good time to start
exercising and even attempted healthy eating (till i realised it
doubled my food bill!!). I aim to take up swimming next
week, I used to be a great swimmer, even swimming a mile
for charity (many years ago, actually about 10 years now) so it is
something I really want to get back into, so I shall how far I get
this time around.
Thanks to
all those who sent in feedback to last week's blog - you can see
our feedback to the story on the Yheart
Facebook Group! - feel free to leave a
message there or email yheart@bhf.org.uk
- we really appreciate all the comments
So its finally arrived. My heart
valve operation. I barely slept the night before. My dad
picked me and my mum up just after 5:30am, I wasn’t allowed to eat
or drink after midnight but just my luck I wasn’t hungry the night
before but felt sick with hunger that morning....or maybe it was
nerves.
I arrived bright and early just after 7am
at the hospital, and went through all the admissions procedures, I
was a bit concerned because the nurse didn’t seem to
know what I was there for and told me I would go home that
night which I knew I wouldn’t. This concerned me
greatly, however due to a shift change I did not see this
particular nurse again, and the rest of the staff were amazing,
they were so rushed off their feet but still provided me
with the care I needed. I then met the anaesthetist and
then spoke with my doctor, both of whom explained everything to me
and answered my hundreds of questions which put my mind at ease and
scared me silly at the same time.
After waiting around in the not so
attractive hospital gown I finally got walked to theatre, it was at
this point that I changed my mind for a split second and wanted to
say no, but the 20 or so people in theatre staring at me made me
realise I was there for a good reason and a lot of
time and effort had been put in already so I could have such an
amazing procedure.
Obviously I don’t know the specifics of
the operation as I was asleep (which I am glad about) but as far as
I was told it went fine. There were some lengthy discussions during
it as my body had changed since they last took measurements, and I
now know that my old valve was in a worse state than my
doctor first anticipated from the echo.
When I woke I was not a happy
lady, apparently I threatened to sue anyone and everyone
around me (including a poor student nurse who had no idea
what she had done wrong) but I blame that on the lawyer in
me, I must have been dreaming about my degree (which is a
bit sad). I remember being very cold and very confused as to why I
had so many drips in me (neck, arm and leg).
Once back on the ward I was fine, I was
responsive straightaway, much to the shock of my parents as I
normally sleep for hours after surgery. I think I was the only
person under 50 on the ward which made me feel out of place. The
food wasn’t amazing, but I was a bit naughty and sent my dad out to
get me a cheeseburger.
My tests the next day showed the
surgery was a success and I was allowed home that
afternoon with my prescription for daily aspirin (which is long
term) and a chest worth a fair few thousand pounds (I had platinum
stents as well as a new pigs valve). I was being treated like a
china doll at home, which was nice but at the same time I
was very much out of my comfort zone having not lived with my
parents properly for 2 years. My house ended up looking
like a cross between Interflora, Clintons and Thornton’s....which
is actually not a bad thing :).
Unfortunately I took a turn for
the worse and had to be rushed to A & E at my local
hospital when my tongue and face became swollen. Even more unlucky
for me my local hospital seemed to have no idea what on earth my
operation was, and seemed to struggle with the concept of me having
a congenital heart disorder. However the doctor treating me
admitted they didn’t understand, and rang around the hospital to
find someone who did. After numerous tests it was concluded my
wisdom tooth was infected, and there was a risk to my heart I was
given some strong antibiotics but sent home. Luckily the
problem cleared up soon after.
A week after my operation I went
shopping. And for the first time I wasn’t tired, I wasn’t
going blue, and in fact i was roasting.....I have been so warm
since the new valve went it that I am wearing t-shirts when
everyone else is wearing jumpers. I even climbed a flight
of stairs without getting breathless, I was so happy.
Things can only get better from here. Back to uni next
week.....
Thanks to all those
who sent in feedback to last week's blog - you can see our feedback
to the story on the BHF Facebook
group - feel free to leave a message
there or email yheart@bhf.org.uk
- we really appreciate all the comments
Week Four October
2009
So fresher’s week confirmed I am no
longer “fresh”. The partying was very limited and I have resorted
to afternoon naps on a very regular basis. I did
however enjoy seeing all my friends again.
Starting back at uni was actually less
traumatising that I thought, as I seem to have made
excellent choices of modules that require me to
attend only on Mondays, and they are less based around law, more
legal philosophy. Third year is dissertation year, my
choice? Medical Law of course, I feel most qualified in writing on
this subject, and will be reading such books in hospital,
which may ensure me some top rate care :)
I got my date for my op finally
too (and the envelope wasn’t brown!). As I write this I am
currently preparing for my admission. I haven’t gotten upset or
even worried about it. People think I am crazy not to, but why add
that extra stress and pressure when regardless of how I feel it
needs doing, and it is not like I am going to be awake during it,
as far as I am concerned it will be a lovely long nap followed by
some well earned rest in a rather nice hospital, which I refer to
as the hotel.
A lot of exciting things have happened
recently. Not only did I get an operation date I got a new
car! Using a Motability scheme I got a gorgeous
new VW Golf (I only had to wait 14 weeks for it to be
made!) I was like a kid at Christmas and managed to take a
good 50 photos of the car! I hadn’t driven in 10
months since a bad car accident so everyone was nervous (mainly my
mum) about my getting back behind a wheel, but its just like riding
a bike, you never forget. Well apart from the fact I did forget how
to ride a bike once, rather embarrassingly…
With 10 days notice of my hospital
admission there wasn’t much time to organise my busy life, but
luckily I got great support from my university, and my
friends willing to take notes in my missed
lectures. I did however manage to throw together a
little party with all my friends to well celebrate finally getting
a date, and hopefully getting better health. It may sound like a
weird thing to do, but I guess if I can then why
not?!
So next time you hear from me I
will have a new working heart valve (I hope...I hate
statistics but I’m usually that unlucky one) I am currently
deciding what treats I can get away with sneaking in my hospital
bag. So far I have packed chocolate and a large fluffy
dressing gown....if I could get away with taking my own bed I think
I would....
Until next time…
Thanks to all those who sent in feedback to last
week's blog - you can see our feedback to the story on the
BHF
Facebook group - feel free
to leave a message there or email yheart@bhf.org.uk - we really appreciate all the
comments!
Week Three September 2009
Finally my tooth has stopped
aching...which is a good thing as I never did find time to get to
the dentist. I wish I could say it’s because I had a jam packed
week of exciting things to do. In reality I have been
ill again!
I can honestly say I have been to see my
GP more than i have been back to hometown
recently. I think they are getting sick of seeing me every
week, I get this feeling as he just stared at me as I listed my
ailments, he didn’t even comment, and looked rather bored. 20
minutes later I left with a prescription for pills that I have no
idea why I am taking. I am blaming my housemate for giving me
his bad cough which then me being me always seems to make the
slightest illness ten times worse.
With all my exams over and Uni still 3
weeks away I am spending most of my days in the same spot on the
sofa. Daytime TV is becoming like a religion, and I am wondering
whether 60 minute makeover would like to come to my house just to
make my days more interesting. Although I did however discover a
hate for a well known computer games console when it tried to tell
me that my fitness age is 76....doesn’t give me much hope!!
I passed all my exams,
even the one I cried through, so that was a big relief. But now I
have to go to my 3rd year, and to be honest I can’t believe how
fast it has gone and I would very much like to return to my 1st
year...perhaps a 2nd degree is in order to pro long my Uni
experience.
You’re probably wondering why I haven’t
mentioned my operation yet? Well that would be because you
know as much about the date as I do. Once again I am being
messed around. I know I shouldn’t be bitter about it, and I
understand that the appropriate team and procedures have to be in
place before I can have it done but it really is getting beyond a
joke. I just want to get it over and done with
now.
Either way my first few weeks at
Uni are going to be a total write off and I am behind
before I have even started. Not what I wanted but not much can be
done now. I am not blaming anyone. And on reflection having been
told I could have an operation soon every year for the last 5 years
I guess it is a good thing I have been left till this new keyhole
surgery is available.
Next week is fresher’s week so I have
illness (despite being old I still get fresher’s flu every year)
and some tiring nights out to look forward too....if I can last! I
am determined to squeeze every last bit of energy out and enjoy it.
Hopeful my next blog shall be me preparing to go into
hospital and not just waiting for the little brown
envelope with a date inside.
Thanks to all those who
sent in feedback to last week's blog - you can see our feedback to
the story on the BHF
Facebook group - feel free to leave a message
there or email yheart@bhf.org.uk -
we really appreciate all the comments!
Week Two September
2009
So the exams are over,
they all went reasonably well apart from the last one which started
and ended in tears as I was having a bad day and feeling unwell.
Less than two weeks to wait for results to find out if I have
managed to scrape a pass into my 3rd year, but I am really
beginning to despise Law, probably because it stole my
summer.
As an end of exams treat I went off to
Leeds Festival. What a bad idea that turned out to
be. I arrived loaded up with bags, and discovered my lovely friends
couldn’t have camped any further away without
actually being in the next county!
Most of the weekend was fun and
the bands were great but it was so exhausting. All the
walking and constant standing were not doing me any good, and in
the end I had to wimp out a bit and go home for a day, luckily I
live only 45mins away from the festival. This did not
impress my friends, and I was a little gutted when one
mate commented on how he expected me to be “hardcore” and I was
nothing like my old partying self. He does have a point, I
definitely don’t have the energy to be how I was when I started uni
2 years ago.
I think I have gone from 6 nights
a week of going out having fun to lasting 6 hours before I
need a nap and that’s without a night out or a day at uni. Either
way I knew it was for the best to head home as my health
was slightly more important that seeing Radiohead. And I
needed to get over the traumatic experience of being crushed
against a burger van by about 100 bored festival goers.
My boyfriend recently moved up to
Leeds, he now lives 2 minutes away which is much better
than the 100 miles it was before. He still needs a bit
of house training though. Knowing how tired I get these
days he decided that he would do my housework while I was away at
the festival, which sounds lovely but it did end up costing
me a Hoover and an iron when he managed to destroy both in the same
accident!
It is good to have him around though as I
feel unwell more now than I have in the past, and
chest pains are more of a regular occurrence which sometimes is a
bit scary and at least I know there is someone around if there was
an emergency (not that I worry much!).
I have been given another
provisional date for my operation but I shall not
be holding my breath till I receive written confirmation, well I
probably won’t believe they won’t cancel it till I am heading down
to theatre. The only downside is it more than likely going to mean
I still won’t feeling my best on my 21st
birthday, as the operation is possibly 12 days before it.
I have however made it very clear if they change it to my actual
birthday I will be having a party on the ward!
How many people can say they got
a heart valve for their 21st.....I am guessing not many,
although I would prefer something like designer shoes with
a matching handbag.
I think I need to concentrate on staying
as healthy as possible the next few weeks now so I think my next
adventure should probably be the dentist for a check up as it
appears even at my age teething can be painful! I hate
infected wisdom teeth :(
Thanks to all those who
sent in feedback to last week's blog - you can see our feedback to
the story on the BHF Facebook group - feel
free to leave a message there or email yheart@bhf.org.uk - we really
appreciate all the comments!
Week One August
2009
Today I went to see my cardiologist at
the “local” heart centre. I knew that I was going to discuss
my pending operation so i had a mixture of nerves and excitement.
But I was prepared with a list of questions.
I took my mum for
support as sometimes clinic visits do upset me. I had the
usual ECG and ECHO on arrival and I must say I was very proud of
myself for behaving in a grown up manner when I had male
technicians doing the tests.
I always had a problem with male
technicians and often have kicked up a fuss (even though the
technicians have always been professional) which I guess being
a girl is usual. However today I realised my health is more
important and they only want to do their job. It has only
taken about 7 years of being difficult to come to this
conclusion!
Some things however never change. Waiting
times! I arrived 30 minutes early to my appointment, in the
hope I would be out quickly, unfortunately my doctor was
called to an emergency in theatre so I was in for a long
wait.
When I eventually got to see my
doctor I felt all my questions had vanished from my mind
so I am glad I had written them down. He took time to explain
the procedure, including risks and benefits. It is a new
kind of valve replacement through key hole surgery, I feel
there is no guarantee of its effectiveness which does make me
nervous but also I feel I am helping test out new procedures to
help advance medical science in a way being only the 8th
person in the North West to have it done.
He did upset me slightly
when he admitted the date he had promised was double booked, so all
my planning was out the window as my operation is being postponed.
It now means I will have to take time out of
university, but the recovery on this new operation is
approximately a week so it doesn’t inconvenience me as much as a
bad heart does in reality.
In a weird way I am
looking forward to the operation now, but as it is a few weeks away
I need to concentrate on my pending exams that I am taking. I have
to do my exams in summer as I had an operation during the usual
exam time. Annoying but again my health comes first.
Perhaps I don’t even have time to stress
over the operation at the minute. But I know if I do worry the
nurse there today is only a phone call away.
It has been a long, but eventually
successful day, but now it is back to the books for
me.
Do remember to check back next
week for part 2 of Leanne's blog, when she went to the Leeds
Festival.
Why don't you tell us what you think of
Leanne's blog? Email yheart@bhf.org.uk and let us know
what you think and we will put some comments on the blog.