by muriel castille
Discovering
my TB
In 2006, I was diagnosed with
active TB. First the news came as a relief, I was going to be cured. It took 4
weeks for doctors to find out what was wrong with my lungs. Four long weeks
tests after tests, doctor after doctor, valium became my best friend
and my husband my good angel holding my hand each time it was too painful to
carry the thought of my own death and never see my young children growing to
embrace life.
But then, the relief was
brief. I will be saved, but... welcome to the world of infectious diseases!
When the doctor asked me to
go to his office, I was right away placed in a special room. I was asked to
wear a mask. I was asked to put my life in the hands of the health unit, with a
new doctor, a new staff and a lot of rules. I was asked to take a combination
of 4 strong antibiotics, with a huge list of scary side effects, and to isolate
myself from people. No more hugging and kissing the kids. It felt awkward first
and then scary.
Could I have given this
disease to someone? To my very young children? To my old grandparents? My
husband? My friends? My neighbors? The thought was unbearable. It felt like
being in another dimension.
I had very little symptoms,
tiredness, occasional hot flashes and night sweats, a slight cough... I would
have never seen a doctor for that. In fact my OB discovered my TB prior to a
simple procedure that required an anesthesia!!! The anesthesiologist who came
to my room that day, was mad at me for not letting him know I had a serious
lung condition called COPD, he said I had the lungs of a 60 year old
smoker. Me? I never smoked in my life! I exercise every day! What was he
talking about? Did he have the right x-ray? Regardless how brutal Mr.
anesthesiologist was, he saved my life, and probably my children's life too.
Not knowing I had TB, I could have infected my family and other close persons.
And who knows how they would have responded to the invasive treatment.
TB is not an ordinary
disease, it is a fifth dimension one...
Getting used to TB
My first sputum was
slightly contagious, the two other ones were normal. Contagion was rationally
resolved, but what if? The health unit tested my immediate contacts. How
stressful to report the names of the people in my immediate contact to a state
worker? How stressful to ask my immediate contacts to be tested because I might
have contaminated them... How stressful? How stressful to have your
pediatrician testing your children. How stressful to wait for the answer. Two
long days, where thinking is too scary.
Two weeks of antibiotics, mask and isolation
was not that bad. Going to the health unit was becoming almost a nice habit,
because of the staff's kindness and dedication. I was soon going to take my
pills biweekly for a minimum of six to nine months. A lot to swallow 23 pills,
under the vigilant eye of the TB person. I just started complaining that the
news came like a shock again.
My resistant TB
The TB doctor called and
let me know that the medicine was not working because my TB strain was
resistant to 3 of the 5 main antibiotics. It is a very rare strain, fortunately
rifampin and PZA work, along with levaquin, but that was not clear they would.
Therefore I had to be in isolation again, wear the mask for another six weeks.
Have 12 negative sputums. My treatment will be longer, maybe 18 to 24 months,
and the drugs much harder on my body. I begged for my kids to be under
preventive medicine, I wanted to be away from them and at the same time to
hold them all the time. It was such a trauma.
The TB doctor rapidly found
a cure for me. I had to take Amikacin. First I had to have a pick line
installed in my arm, I had never heard of that, and then I had to go to the
hospital every day to be infused for an hour. I had wonderful nurses that
really did the trick and supported me in my journey. Everything was going well,
the pills, the mask, the infusion until one day when I checked in and the nurse
did not have my drug. My insurance company did not want to cover the cost. I
don't even want to tell here the amount of money, but we had to face another
challenge and my husband did. I could not have been able to deal with that, and
I feel so lucky because I could just be a patient dealing with my disease,
without the money issue. I cannot imagine patients having to go through that on
top of being ill. We found a solution and I got my infusion at home. A very
kind nurse came one day, showing her face with no mask through the door. She
said nice to meet you, I want you to see my face before I put my mask on. She
was right on. She touched my life, I was still in the other dimension.
The other dimension again:
I had to have a hearing test every week during the amikacin treatment.
8 weeks where I was scared in that tiny booth to miss a sound and not to raise
my hand. I finally compromised with myself and did not care at the end if I
were losing my hearing or not. I just realized that my kids, people around me
were fine, and that eventually if everything would go well, I will be fine too.
Complying with the Health Unit and CDC
regulations
The TB control unit really
controls. First it is extremely frustrating to be a grown up educated woman
having people watching you take your pills like an irresponsible person. It is
somehow quite humiliating and insulting. It really feels like you are being
punished, and it feels so unfair, because being sick and possibly endangering
people's life comes already as a punishment...
But soon, you learn that
you don't have a choice. So, if you cannot fight the system, you have
to accept it. You have to cooperate. The rules are simple. Be there when
they come for the pills, and go there when you have to go to take them. When TB
takes over your life, the remedy comes with the CDC. It too takes over your
life but to save it and save others. People from the health unit do a
tremendously wonderful job. They have patience, compassion and always time to
listen to you. Which often lacks at a doctor's office.
Another scary thing for me
was to deal with going to see the doctor at the health unit. You don't see the
doctor, you see ten people, ten "feel like" judges people. There is
no confidentiality, you put yourself on stage like when you present a thesis at
the university. It was terrifying for me to put my thoughts together and face a
sort of trial with my lungs x-rays glowing in the back ground. The first months
every one was wearing a mask in that big cold room. And I could remember my
doctors eyes like two sparkles of hope looking at me. I could not see a smile,
but just a look, where I saw hope and compassion.
So many uncomfortable,
surprising mixed-feelings happen to a TB patient. Like put on trial, the grown
up person I am, has to ask permission in front of a committee to leave town for
a few days or weeks with the privilege of taking the pills like a free mental
patient. It is such an odd feeling. My doctor always trusted me, and so did the
health unit team, and I am really thankful to them, because they really cannot
afford taking a chance with a TB patient, but I will never forgot the struggle
of an emergency trip and not being able to make it on time to see my brother
before he died of cancer.
Dealing with Insurance problems
Like I wrote previously, we
also encounter financial problems. While I was undergoing my Amikacyn treatment,
I had to go to the hospital, with my mask, every day, to get the infusion. My
sweet doctor knew that two months of that monster antibiotic will destroy my
behind, if injected like the health unit can only afford to offer to TB
patients. So, he had called my insurance company and ask if they will provide
coverage for that expensive treatment, and they agreed. So, one day, as I was
going for my infusion, like I did for the past two weeks every day, when I got
to my room the nurse had a terrible expression on her face, and explained to me with compassion
in her voice, that she was sorry but that she did not get the medicine
because there was a financial problem. So, I was already being nervous because
I had to have the treatment on time, and I knew that I was loosing time, I had
to call my dear husband and tell him that he had to take care of another
problem: money. We had no clue, the treatment was so expensive and that the
insurance company had denied it. Of course, after the huge stress, the
administration allowed my nurse to get the antibiotic, but was that necessary
for the patient to have to go to that worry? The hospital should have called us
before I came to be infused. Any how, this was going to coast us 30 000
dollars. The health unit did not have any founding to help, but could have put
me in jail for discontinuing my treatment, and my husband had to fight the
insurance company. The logic for the company was so tricky and senseless, that
my husband got them to pay for some of it. I wanted him to bring them to court,
but I think that he had so much on his plate already that he just paid whatever
the insurance did not want to cover. Someone has to do something about
insurance companies. Yes, we could afford without struggling, but I cannot
imagine a family having to go through that, and it is happening here in the US
every day to too many people.
Trust
Trust plays a huge role in
a TB treatment. On one hand, like I reported, because of public health and
based on experience, the government cannot trust a patient with active TB.
Therefor we have the strict DOT program, direct observed therapy. On
the other hand, you have to trust the doctor, the patient does not have a
choice, and he has to follow a treatment that might not be the right one. TB is
such a "rebel" disease that you cannot afford a mistake. Resistance
to the antibiotics can be fatal. I was very nervous about that. I guess it is
the same for any bad disease, but I did not have a choice of getting out of the
program and have a different treatment. I was nervous. I felt trapped with one
diagnostic. Even if I would have had a second opinion with a different
treatment offer, I would not have been free to go with it. Fortunately, me
going to the hospital every day paid off. I had the "magic" doctor.
Every day I had a different
nurse, and every day the nurse will go "oh, you have the best doctor"
"This man is agenius" "He is so wonderful" "You are so
lucky" "whatever you have, he will get you out of it", "He
is such nice man", "He is my hero""He is so smart",
"He is a hard worker and brilliant", "He will save your
life", "He ... I could go on and on about all the comments, and I
never asked anything, the nurses could not stop bragging about him. And you
know what, they were right, and I finally got to the point that I really felt
very priviledged to have him as my doctor, I am very grateful.
Another trust issue comes
with people surrounding me. The disease is feared and a lot of it has to do
with a lack of knowledge. People can rapidly become paranoid, backing up when
they see you and stop interacting with you. People who develop a cough
and have been in contact with me, must have that TB spectra crossing their
mind. I have to repeat that there is such a small probability I infected them,
that is why the health unit only choose to test my immediate contacts. I am
sorry I am responsible that they have to go through that, but I would like them
to trust the fact that there is rationally no need for them to worry about
being contaminated by me.
Thank you
I am still undergoing
treatment, I probably have five more months to go, my lungs are clear and I
really believe that I will be ok in the long run. I just had a long bad year,
and next year will be better. I hope to look back on that experience and
remember all the things I have learned and most of all the people who never
than before had an opportunity to show me how much they cared for me.
I want to thank my husband
who never failed to hold my hand and take over the financial and household
responsabilities. Thank you to my wonderful mother, who did not listen to the
doctors and came to my house to take care of my family, daring the TB devil,
letting herself be tested. I want to thank my dear friends for undergoing the
TB testing and exposing themselves, for never failing comforting me. Friends
and family members who provide cooking for my family, went to the doctor with
me. I want to thank the people who trusted me and were not scared of visiting
with me.
I want to thank all the
nurses who gave me my iv treatment for their dedication and compassion.
I want to thank the staff,
the social workers, administrators and nurses of the health unit. Their job is
amazing and vital for the program to succeed. A special thank to my TB
"pill lady", she is helping so much dealing with the universe of TB.
She devotes her time to listen to people with unconditional compassion.
Thank you of course to the
health unit doctor, who saved my life.
Thank you for the
researchers and people who give and raise money for research.
Thank you for people who try to stop TB
throughout the world.
567 DAYS AND 3969 PILLS AFTER...
I am finally finished with
my treatment... I can have my life back...
It has been a long road,
but now I am free of TB, I am free and I did not contaminate anybody in my
family and among my friends and close contacts.
I have a 1 percent chance
of relapse. Let's hope I won't be in this statistic...
I have been a good patient,
swallowing all the 3969 pills... and signing my initials in each little square
on the health unit monthly TB calendar.
I have to say, that it
could have been so much worse... I was lucky the treatment worked well and that
i did not have major side effects.
I am very very grateful to
the marvelous doctor and the health unit staff for their wonderful help,
understanding and compassion. I got to bound with some of them, and to them a
special thank.
My thoughts go to the TB
patients in treatment, I want to tell them to really follow all the procedures
and reassure that there is light at the end of the journey.
For a lot of them side
effects are really terrible and painful. For those undergoing isolation at home
or in a special facility, the psychological condition is often felt as torture.
My heart goes to them, I want to tell them to keep taking the pills, and not to
give up. Accepting the situation will make their life easier, and focus only on
getting better.
Being a TB patient is not
the same as being a patient with another disease:
You are just not a regular
sick person fighting a severe condition to get better. But instead,
you are both a sick person and a potential criminal at the same time.
You are a sick person that
could face jail, a sick person that infected or might infect other people, and
has to worry every day about that and be responsible.
You are a sick person with
a mask, isolated from people because tuberculosis is at the same time dangerous
and naturally scary for people even when you are not contagious any more.
You are a sick person who
feels guilty to be sick, punished by the disease and by society.
You are a sick person who
does not have any choice of treatment.
There is room for
improvement for TB patients therapy, and I am sure it will come. But
meanwhile for each individual facing this condition, the best remains to
follow the procedures and find ways to deal with it. DOT works and is so
far the most effective answer to contain this contagious disease.
My hope goes to those in
the world who don't have access to treatment or have XDR-TB, I do wish that a
brighter future will come very soon, with new drugs and more fundings to bring
TB medicine to all.
No comments:
Post a Comment