The transplant have given me a whole new life all over again now since the last year and a
half.
Being able to fill my lungs with that air was an incredible feeling,
and something I had been able to do for a long time.
Since the transplant I've had my second child.
We are able to carry on a regular family life.
They're really haven't been significant changes in my life. Things have really carried on as normal.
I run my own life now, rather than a hospital running my life.
It's great!
There's nothing more rewarding than seeing our transplant patients do well after
their surgery.
And part of those success stories that we see day in and day out
in the transplant program is when patients take responsibility for their
health.
For patients and their families, there is a lot of information that they need to take in -
a lot they need to know about.
Not only about caring for their organ, but for also about being on guard for
signs with symptoms of potential dangers, potential complications, following
the transplantation process.
Narrator: You and your transplant team work together to care for your new organ.
And, while rejection if you're new organ is a complication faced by almost every
transplant patient,
in the majority of cases it can be effectively treated.
You may experience some or all of the signs and symptoms of rejection
when it occurs.
Or, you may feel completely normal, showing no signs and symptoms
and still be having rejection. This is why you're transplant team schedules
regular blood tests and biopsies.
These tests are the only way your transplant team can be certain
about whether rejection is occurring. Nurse: Within the first year
transplantation, at least half the patient experience some form of
rejection. As long as the rejection is recognized early, and the transplant team
is notified, they can treat this.
It is something that can be dealt with fairly
easily. We just need to know about it so we can treat it
with the appropriate treatment methods, usually
starting with medication. We want patients to know the rejection does not always mean
you're going to lose your transplanted organ, it means
that there's something going on with the immune system that we need to attend to
as soon as possible.
Narrator: All transplant patients are prescribed drugs that affect their immune system.
The immune system is your body's natural defense against invasion from cold and
flu viruses,
bacteria, and other foreign bodies, including your new organ.
The immune system operates through the bloodstream.
Here, specific types of cells, called t-cells,
are on constant lookout for foreign invaders. When they recognize something
that doesn't belong.
For example, a cold virus, they send out a signal,
bringing in whole armies have other t- cells to kill off the invader.
In the case of your new organ, the t- cells would recognize the walls of the
tissue within the new organ
as being different from the rest of your body, and the attack process would begin.
It is the immunosuppressive drugs that help prevent this attack
and therefore help prevent rejection from occurring. While your prescribed
medications affect your defense system
and protect your new organ, they also lower your resistance to other health
complications.
It is therefore very important to take your medications
exactly as prescribed, monitor the results very closely,
and report any signs or symptoms as soon as you notice them.
When I was waiting for my transplant you hear
"rejection", and you hear about patients who maybe were transplanted before you
who are now suffering from rejection,
and that is a word that comes with a lot of fear.
When I came out of the anesthetic, they said
"You will have rejection. Don't take it personally,
but you'll have it." And I believe was for two months after,
maybe a little bit less, I had a low grade rejection.
Narrator: The signs and symptoms of rejection
are different for each type of organ transplant. Let's begin with the kidney:
We ask all of our patients at home to watch
for basically 3 separate signs of rejection.
The first of these is: any temperature of 37.5
or more needs to be reported immediately
to your transplant team. The second sign and symptom
is pain around the kidney itself. You should
feel your kidney each day, and any new sign of pain,
besides the incision pain, also needs to be reported immediately.
The third symptom is really a set of symptoms
that tell us that your kidney is not putting out the water
that it should be. And those specific things are:
are sudden weight gain a kilogram in 24 hours, swelling of your hands
and your feet, a sudden increase in your blood pressure
over your normal readings, and sudden decrease
in your urine output, over what your normal urine output is.
And all of those signs and symptoms, even one of them, needs to be reported
immediately to us.
If the patient does have a rejection diagnosis, and this is usually confirmed
by doing a transplant biopsy,
then it usually means that we need to make an adjustment in the medications.
The treatment varies between individuals
according to the type of rejection, according to the severity of the
rejection,
and according to the period of time post-transplant. Sometimes the patients
will be required to be admitted,
other times we can treat the patients as outpatients.
The success rate in treating rejection episodes is really very good.
It's rare for patient to lose a kidney transplant as a result in rejection
episode.
and probably at least 95 percent of patients would have their rejection
reversed,
with early treatment of the episode with medications. The most important thing
for the patients to do is to call
and report any signs and symptoms they're having. Sometimes we reassure
them,
sometimes we offer suggestions,
but the most important thing is to call and let us know.
For kidney/pancreas transplant patients,
the signs and symptoms of rejection are very similar to those
in the kidney transplant patient. As for all transplant patients,
a fever of 37.5 degrees Celsius, or 99.5
Fahrenheit, is the first sign to watch for. They should never wait and see if
the fever goes,
because the fever may change.
It may become quite normal in the evening, but it's still an indicator
and should be reported immediately to your transplant team.
The second
common symptom is pain or tenderness over the kidney and pancreas.
Often the pain and tenderness over the kidney and pancreas is due to be
inflammation that occurs due to rejection,
and the pain and tenderness may be difficult to assess if it's immediately
post-surgery because you will have some pain and tenderness on your
incision line. However, two to three weeks down the road, you shouldn't have
pain and tenderness when you feel your kidney your pancreas.
Retention a fluid is another symptom.
This may be shown in
your hands, you may get some swelling in your hands - your
rings might not fit, they maybe a little stiff. Your
ankles - some swelling in your ankles and your face
might get a little puffy, especially around the eyes. Weight gain
of anything between 1 to 2 kilograms over a 24-hour period
is a concern, and you should certainly like to transplant team know.
Although we don't ask you to measure your urine output
every single day as you do in hospital, you should be aware of how often you go
to the washroom and
approximately the volume you are putting out. You'll notice change in volume - you may
be going less frequently,
you may be putting out less amounts of urine at that time.
These, again, are important symptoms. The
kidney acts as a signal
for rejection. Normally, the pancreas doesn't really show a great deal as far
as rejection is concerned, but the kidney
does. I felt pain over the kidney
and I felt I called my cordinator right away
and I told her, and she told me to come down to the hospital
and they checked me over and I was fine. Well I have been told that
every transplant patient experiences rejection at some point, to expect it,
that it was not to be that alarming, and there to watch for the signs of it and
alert the
hospital immediately. I started feeling pain over the kidney area again
and I didn't call as soon as I should have, I waited a few days
instead of calling right away. But they took care me.
They gave me the medication for it and I was fine after that. I went through
a number of stages a rejection
myself and I think when I look back at it I don't know whether it was all that
manageable but we did
get through it. I found that I felt great,
but the blood work showed that rejection was occurring. That means that
the caught it early. And, so, they treat it right away and it was taken care of.
Blood tests are important for all transplant patients.
They may indicate your transplant team that rejection is occurring.
For liver transplant patients, as with all transplant patients,
the risk of rejection is greatest in the first three months post-transplant.
The common signs and symptoms that we tell a patients to look for are
an increase in jaundice - so to look in the mirror first thing in the morning
and to
check their eyes, to make sure that if there's an increase in jaundice, if their
eyes have gotten yellower or they notice it in their skin,
to let us know. Dark urine, which we talked again about the jaundice,
and pale stools would tell us that bile isn't going through the GI tract, and the
liver isn't doing the job that used to be able to do.
Also, decrease in appetite, nausea or vomiting;
new abdominal pain or ache in the right side;
persistent fatigue, ascites, itchiness.
Temperature is very important to monitor.
It's something that we ask the patient to do every morning, and maybe every night or
sometime during the day if they feel a little bit strange.
And there's a magic number to do with the temperature that magic numbers 37.5,
and when it 37.5 we asked the patient to call us.
The most important thing is for them to be our
eyes and ears at home, and if they see
anything that's different, anything that we've told them about - the signs and
symptoms they are to look for,
they are to call us. When I experienced rejection,
initially I really didn't know what was happening. I was just getting tired but
slowly
I was getting tired. I was losing a little bit of weight -
just gradually, like a pound or two during the month, And it was a very vague feeling for me.
I, in fact, was sitting and waiting to
meet with a doctor over one of my
infection situations, and in the
waiting room friend mine was with me said "Gee, John,
you're a little yellow in your eyes."
So, in a matter of minutes we were on the telephone with the doctors here at the hospital.
Narrator: Although blood work is important for monitoring drug levels and other health
indicators,
biopsy is the only way to diagnose cardiac rejection.
Heart transplant patients need to be especially alert for subtle signs of
changes in their health.
We teach people to report to us an
increased shortness of breath, increased weight gain,
fevers, feeling unwell,
because they could be an indication that the heart is not working and
that there is
some rejection starting. But, the only way to diagnose
cardiac rejection is with a cardiac biopsy.
Because that is the only way we have,
it is very important that patients come for their biopsies
on the specific dates. Cardiac biopsies are performed at regular specific
intervals
for the rest of the recipient's
life with the transplant. Cardiac rejection doesn't mean that a
patient loses their heart, it mean that
we have to treat the rejection. The way we treat cardiac rejection
is by increasing it doses of drugs. During that time, patients may
experience some of the increased side effects of the drugs,
but after the treatment we again lower the drugs down the baseline
therapy and those side effects even out.
I get a little tired,
but I really don't known that I have it,
until I go and have a biopsy
and they phone me and say "you have rejection, raise your medicine up." I didn't
have any symptoms
at all. The only way that I knew was from the biopsy.
Because I had a biopsy, I got a biopsy I got a phone call that night and
they said come to the hospital. I came into the hospital
and was,
what they class as a fairly serious rejection.
Narrator: For lung transplant patients, there are a number of potential signs and symptoms of
rejection.
And, even though your spirometer readings and pulmonary function tests
are followed on a regular basis,
the only way to definitively diagnose lung rejection
is by bronchoscopy. A patient who has had a lung transplant -
if they're having some rejection the may end up finding that they are short
of breath. Their
handheld spirometer, their forced expiratory volume in a second,
or FEV-1, may have reduced. We're concerned about to drop of 10 percent
that's persistent for 24 to 48 hours.
They may have some cough along with that as well as
a reduction in their exercise tolerance. So the
two flights of stairs that have never been a problem may be a little bit more
difficult for them to undertake at that time.
As well as just feeling generally unwell and
typically a a fever that will go along with that. If the patients are experiencing
any of those signs they are to call the transplant coordinator
or speak to the transplant physicians about those signs.
And whent he patients come into the hospital will, we'll do a chest x-ray to see if there's any
infiltrates, we'll do
pulmonary function test to determine whether the forced expiratory volume
or the FEV-1 is truly reduced in the lab,
as well as to review their symptoms to determine whether could be something
else that's going on as opposed to rejection.
If the patient is experiencing rejection they'll go on to get some additional
medication
to treat that rejection and within a couple days to a couple weeks
they will start to feel a lot better, the fevers will be gone,
they're forced expiratory volume in the second the FEV-1, will return back to normal.
I also had rejection probably for the first
year-and-a-half
every bronchoscopy that I had
showed grade 2 rejection. You need to find out what your usual spirometry is,
and if it starts to fall below a certain level, which
your coordinator will give you the levels to watch for,
then that's one of the key things, is to make sure you let them know what's
going on so they can investigate it further.
One of the big problems I had immediately afterwards was
getting my cyclospora levels evened out - that took a long time.
They were very variable and one day they'd
be very low, the next day extremely high.
It's important, I think, for patients to remember
that rejection is a normal part of a post-transplant course.
Most patients experience at least one episode a rejection,
and we expecte it and anticipate it, which is why we teach patients about rejection
so that they can help us detect it and treat it early,
so that it just becomes a normal part of the transplant course.
I think it's also important to remember that some patients may not
have all of the signs and symptoms. They may have one,
or they may have none. They may
complain of just feeling generally very lethargic,
and really non-specific type symptoms,
and that's where blood work is very important
and monitored on a very regular basis. Narrator: it is important to know the signs and
symptoms a rejection for the type of
organ transplant you have had. Rejection of your new organ
is a complication that can be dealt with when it is recognised early
and the transplant team is notified. Remember to have your blood work and
tests done
as directed by your transplant team, and to notify your transplant coordinator
or physician,
as soon as you notice any potential signs or symptoms
of rejection. There is pain,
but,
in the long run, you're very happy
and you have your life ahead of you. Everyday I have
really is a gift. If I have one more day, that's wonderful, if I have 20 more years,
that's better, that's fantastic.
As long as you know that when you get your transplant, it's not just going to
be a bed of roses. You might have to
fight every once in a while again, like you've done in the past.
Infection and rejection can be serious complications for transplant patients.
But, when we work together, transplant patient and transplant team,
we can make sure that the healthiest outcomes are possible.