MY EXPERIENCES
August 16, 1998
I have now been off the treatment of Cytoxan and Prednisone since February 19th.So that makes 6 mths. I have been doing great as far as the illness. I have now
suffered another problem from either the illness or the medications I was on,
either the prednisone or the cytoxan, most likely the Cytoxan. I was diagnosed
with having POF.(premature ovarian failure) I was told that is what they call
menopause for those under 40 yrs of age. I have not had a period for over 3
yrs. And was given a FSH/LH blood test and the results of that showed that
this is what I have. I am scheduled to go see a RE(Reproductive Endocrinologist)
August 31. I hope that I have more answers that I have now. I was given Prempro
for HRT(hormone replacement therapy), but took myself off, because I had side
effects that were horrible. I had abdominal pain, that would keep in bed most days
or doubled over in pain. Also I had shortness of breath and chest pains. And
having those were scary because I didn't know if I was getting sick again. I have
also heard that Prempro was not a way to go if I have POF because Prempro is a
combination of Provera and Premarin. And Provera helps to 'jump start' or
regulate your periods. I wasn't sure why my doctor would put me on that if I was
menopausal. I hope to have answers after my visit to the RE at the end of this
month. I was also told by a mail list group that its possible that POF can be
reversed. And also the effects of Cytoxan wear off and my cycles return. This has
been devestating for me. I am only 28 and 5 yrs ago diagnosed with a illness like
Goodpastures Syndrome was enough. And now the possibility of not being able
to have children is not well taken.
December 1, 1998
I haven't written on here for awhile. I was found disabled as of July.I am not realy happy about it. But what can I do? Somedays I can't even get out of
bed. I had an attack in October. My doctor wanted to admit me to the hospital.
I had 2 choices: go home on high doses of Prednisone and an antibiotic, or go to
the hospital for about a week. Guess which choice I took? HOME. He said that he
wasn't sure that it was a relapse of Goodpastures. He said that it looked like it
might have been just a bad asthma attack. To me it didnt feel like a relapse. I
usually get very weak, and not sure what day or where I am, when that happens.
And when a x-ray is taken, there is always a spot on the films. This was just plan
not able to breath. And it was horrible. Right now I am said to be in remission.
Because I am able to stay off the Prednisone and Cytoxan, but mainly the
Prednisone. I have been on pulses of Prednisone, but that doesn't count. I have
an appt to go see an Urologist on Dec. 7th. I have had a little problem with
bedwetting. I am not sure what it is. If its my bladder or my kidneys. I have
read that being on Cytoxan for a long time will make your bladder weak. I am
not sure if it that or the fact that I am said to be in menopause. I guess I will
find out the 7th. I have also seen a gastrologist.*spelling* I am getting heartburn
way to much(as he says). He wants me to have an endoscopy(a test where they
put a tube down into your throat and down to your stomach and look around) but I
have not decided whether I want that done or not. I will write more
when I know something.
December 27, 1998
Well I spent 4 days in the hospital. From Dec 20 to the 24th. I was sick a fewdays with what I thought was a cold. I called my doctor on Friday and told him
that I had a crazy cough and wheezing. Sat, it went to my head and then later
on I seemed to get congestion in my lungs. It went back and forth. Sunday I woke
up and I seemed to be fine. Just tired. I slept almost all day. I woke up around 5 pm
and I was fine except for a slight cough and wheezing. I went to the bathroom, came
back and got short of breath real quick. Then I got cold. I was freezing. I climbed
back into bed and tried to get warm, and took a breathing treatment. 6pm I went down
stairs and was hyperventilating called my brother and asked him to come get me.
Within 25 mins he was there and I was taken to the ER. I walked in there and was
taken right to the exam room. I was given 80 mgs of solu-medrol(steriods) and a
breathing treatment. And taken to have an xray taken. I was given 4 breathing
treatments in the next hour. My oxygen level was 88 and so I was put on 4 liters
of oxygen to try and bring it up. They took a ABG(aterial blood gas) and discovered
my oxygen level was 53. A nurse came in and asked me if I had a DNR(do not rescitate)
and I told her no. She told me that I may have to be put on a respirator, because my
oxygen level was low. I was then told I would be staying there. I was taken to my room.
And put on antibiotics, 4 liters of oxygen, and given breathing treatments every 4 hours.
My doctor came in the next morning. He is an early bird. He comes in at 5 am or so.
He told me that it wasnt an asthma attack, but it was a relapse of the GP. The xrays
showed infatrates. I told him that I already knew that before I came in. That is why
I came in. It wasnt an asthma attack. Because there was 3 symptoms that I always
have. Coughing, hyperventilating, and chills. I told I would be spending a few days
there. I said as long as I am out Christmas Eve. I was discharged Christmas Eve.
He now lets me tell him whether I am having a relapse or if its an asthma attack. And
he takes a xray to confirm that I am right. Its scarey when you have this alot that you
can tell the difference. I was then told that I would be on the prednisone 10mgs until
the next appt. Which was in 2 weeks.
October 5, 1999
I haven't written in this in a long time. I haven't been feeling well at all. The summerweather was really rough for me. In March I started coughing. I tried several
things and nothing worked to stop the cough. I went to the doctor finally in June and he
took some x-rays and told me to come back in 2 weeks. When I went back he told me
that there were some spots on my lungs and he wanted to repeat the xray. So that day
I had another one. He then told me the spots were larger. He recommended I have a CT
Scan. I went and had that done. I called a few days later to see if they had the results. I
was then diagnosed with Interstitial Pulmonary Fibrosis. I was to go see my other doctor
and he would make the formal diagnosis. I went to go see him July 20th. He told me that
I had Pulmonary Fibrosis. And he wasn't sure, but thought I had this before the
Goodpastures Syndrome. He also saw a spot on my lung that the xray technician circled.
He told me that they will keep an eye on that. I was told that I wouldn't be treated until I
stopped smoking. He told me that by next year I would be on oxygen. He did this test,
that he put an oximeter on my finger and made me walk. He wanted to see if my oxygen
level fell when I walked. It did. It dropped to 86 % with 200 ft. He told me the treatment for
this is Cytoxan and Prednisone. But seeing that I might have gotten this while being on
Cytoxan, he wants to try a drug called Imuran. So now I have to stop smoking before I am
treated. Nothing else is going on with me. I am going to make a page for IPF=Idiopathic
Pulmonary Fibrosis. I will write more when it happens.
June 3,2000
I have not written in here for quite a bit now. I have been ok. Quite depressedthough. My body hurts all the time. I can't breath most of the time. I am in
the process of possibly being diagnosed with Fibromyalgia. I was told that
having sleep apnea, its hard to tell which is causing the sleepiness, pain,
confusion, etc. I am taking a medication to try and stop the body ache. But so
for the past 6 weeks, it's not helping. The last time I had written
I was diagnosed with Pulmonary Fibrosis. Nothing is being done to treat
that at this time. I will be eligible for Medicare July 1st. I am wondering
how I will pay for the prescriptions that I am going to need. I had to get
a supplement insurance to pay the rest of the doctor's visits. But it doesn't
pay well for the prescriptions. I will be babysitting my niece and nephew
starting Sunday for the summer. I think it's going to take alot out of me, I am
sure.