Patient diary -- Carol
Dwyer
Friday, January 05, 2001
I'm writing this
for two purposes. One is to share what has happened to me and the
second is maybe to help someone going through this.
In
March of '96 my husband and I went to Lake Tahoe and I became dehydrated
for this first time in my life. I passed out in the bathroom at
the hotel and was taken, eventually, by ambulance to Sacramento.
The cause was diagnosed as dehydration.
But
for a year after that, when I would get up at night I would often
faint. This scared my husband and he told my primary care doctor
that something was broken and it needed to be fixed.
My
primary care doctor sent me to a cardio-pulmonary specialist who
found out immediately that I had PH. He prescribed liquid oxygen
at night and things went on smoothly until last summer.
Originally,
I hurt my back and was hospitalized in April and given pain pills
and an MRI which revealed osteoporosis. Then I was hospitalized
in June with pneumonia. I had respiratory failure and lost a lot
of strength. The doctors wanted to perform a swan catheter and I
objected because I was responding to the antibiotics and he mentioned
I might have to be on a respirator for a while with this procedure.
I was scared.
I
was released from the hospital after eight days. The emotional trauma
was almost too much. I went from being a very self-sufficient 67
year old in January to a person who couldn't get out of bed by herself,
or get dressed without assistance and spilled food all over the
place when she ate. In essence, I got old in six months. My husband
and I couldn't look at each other without crying. It was a horrible
time. The doctors put me on oxygen 24/7(three liters)and that is
the status now.
I
was hospitalized twice in September. Once for tachacardia for three
days and once for a bladder infection for seven days, which is when
they did the swan catheter and discovered that the medicine they
were giving me wasn't helping.
So
I have been home since. In October I drove myself to the store for
the first time since February. I am not taking any kind of medicine
for the PH except Serex, which relaxes me, and inhalers that I was
taking before all this happened and a lot of vitamins. I have had
to hire someone to do the housework and my husband does 90% of the
shopping. I can get out, but can't lift because of the osteoporosis.
I
don't know anyone with whom I can compare physical and mental feelings.
This has been a jolting experience. The prognosis is that I may
live 10 years with this or could die tomorrow. Can you imagine how
my family feels? I have tons of support from them, but they have
a limit, too.
I
welcome any comments that would help anyone. After reading some
of the diaries, I am lucky to have come this far and I thank God
and am fortunate for all the prayers people have offered. Please
let me hear from you.
Carol
Thursday,
January 11, 2001
I
am feeling very good. Went to see the physician that has been helping
me with the PH (he's an ICU physician - not my pcp). Since December
I've had edema in my legs (they are about 2 inches more than normal)
and he has been treating me with lasix at a low dose to begin with
and now we are at 40 mg/day. The edema is subsiding, but I have
blisters in the front and back of my calves. I've never seen this
before and it is alarming. The doctor doesn't seem to think anything
about it, though, so guess I just have to continue to be careful
and not burst any of them and end up with cellulitis. I've had it
twice before and it really sneaks up on you. Was in the hospital
10 days once with it.
But
the doctor seems very please about my status and guess for my age
(68)I've been doing well. The only thing I am taking is Serex for
anxiety and inhalers for COPD (which I don't think is that bad).
One thing the doctor did say is that I was pre-disposed to get PH.
I don't know if they say that because they don't know why you have
it. If they know, how do they? Will write more if there are any
changes or surprises in my condition. For now, I'll enjoy the respite.
Happy New Year to everyone!!
Sunday,
February 04, 2001
Well,
it's February and my hope to stay out of the hospital didn't come
to pass.
A
week ago last Thursday (1/25/01) I didn't feel very well as the
day passed. Then about 6PM I called my physician and informed him
that I may be starting on a round of cellulitis. My lymphedema arm
was leaking fluid and I had taken one antibiotic pill. But by 6:30pm
it began to get red and I developed a low-grade fever. So I called
my physician and told him we were coming to the emergency room (20
minutes away).
He
came out into the waiting room to get me (by then I was really feeling
bad and was in a wheel chair).
Off
to ICU I went and they started three kinds of antibiotics. I was
in ICU for four days, then up on the ward for 4 days and then home.
Now
this didn't have anything to do with my PH, but thank God I have
a doctor that knows what can happen if you are compromised
. I had excellent care and when I came home, the edema was gone.
I'm wearing Jobst stockings hoping the edema will not return.
But
this is the first time that I have been in the hospital that length
of time and been discharged feeling so well. I even went the next
day and got my hair fixed. WOW!!!
I
still am feeling well and still taking a couple of antibiotics,
but feel I have been so lucky.
Need
to go and fix myself some lunch.
Until
next time.
Thursday,
February 08, 2001
Hi
Diary, Well, I still feel good since my hospital stay. I did a little
too much on Tuesday - two trips to the clinic, a stop at the grocery
store plus something else I can't recall now. So I spent yesterday
recooperating from the day before.
The
dermatologist told me not to be concerned about the blisters on
my legs and arm. The way he described it was, "Your limbs are
water-logged with so much edema and the blisters are just a result".
I'm still so very careful because I don't want to break them and
open myself up to a possible case of cellulitis again. He said that
good skin care is essential - lots of lotion, soap that is not harsh,
etc.
I
just know, from reading about other people on this wonderful web
site, that I am very lucky. Some of those afflicted with PH are
so much worse off than I am and I pray for them.
I'm
off to the store in a few minutes. I feel that if I stay at home
all the time I will not be worth a darn and it feels good to get
out. The biggest problem is lifting the portable oxygen tank in
and out of the car. So if I have more than one stop, I plan the
easiest way to get things done.
One
more thing before I go. My coumadin level has not been acceptable
(or as high as the doctors want it) for quite some time. They want
it to be between 2 and 3 and I can't seem to get it to 2 even though
they have raised the dosage several times. Yesterday, they said
maybe it was because of the antibiotics and I have a few more days
left to take them. We'll see. I go to one of my physicians next
week and the other one the week after. Should be very interesting.
Bye
for now.
Tuesday,
February 27, 2001
Hi
Diary,
Well,
I just returned yesterday from another stay at the hospital. This
time it was 7 days and the main cause was cellulitis in my lymphedema
arm. Guess I am going to have to take an aggresive posture and try
to find some information on the web for that condition. I'm sure
that all these infections do not help the PH remain in a more or
less stable condition. Each time I am admitted, I feel like it will
be the last time, because the onset is so swift. In 30 minutes I
can go from feeling pretty bad to not being able to breathe and
my chest hurting. The paramedics all think you are having a heart
attack and you feel so bad you don't have the strength to tell them
that it's mostly PH.
I
just knew that this year was going to be a better year and I've
already been in the hospital twice. This is ridiculous. I'll keep
you informed about any happenings. The doctor started me on Paxil
to help me cope with all these hospitalizations. Hope it works.
I'm usually in a good mood, but that is wearing thin.
Hope
the next time I talk to you, everything will be good.
Monday,
March 12, 2001
Hi
Diary,
I
feel very good today. The last time I wrote, I had just been released
from the hospital because of cellulitis. Well, three days later
I was in the hospital again because I over-medicated myself with
pain pills and sleeping pills. The doctor had put me on Paxil to
avert depression and it made me so groggy, all I wanted to do was
sleep or at least stay in bed. After an overnight stay, I decided
to quit the Paxil and I feel so much better. If I get depressed,
I'll just cry and get it over with.
But,
today, I feel great. The doctors have decided to put me on a low
dose antibiotic all of the time to ward off any more cellulitis.
Hope is does the trick. Because of the Lasix, the edema is practically
gone and I feel blessed for that.
Hope
things continue as they are. Until the next time-------
Friday,
April 06, 2001
It's
been since March 12 that I've added comments to you. Things haven't
been bad at all. The antibiotics seem to be working - I haven't
been back in the hospital and am so thankful.
Since
I have had lymphedema my pcp has been trying to get me to arrange
for a sleeve for my arm and hand to keep down the swelling. Well
I finally agreed and just received it the other day.
Now
I have jobst stockings on my lets and jobst arms and hand equipment
on my arm. If I'm not a sight for sore eyes. And yet, I'm fortunate
to have a source for these aids.
I
go see my pcp next week, but don't have much to report. Got a dizzy
spell a couple of days ago and it scared me.
One
of my grandaughters (the special one) is getting married in June
and I definitely want to be well for that. Please God, help me hang
aroumd at least until after the wedding. I'm going to be the bell
of the ball with all my jobst finewear.
Until
next time. Please, God, help everyone who is worse off than I am.
Thursday,
April 12, 2001
Hi
Diary,
Went
to my pcp on Monday and he says everything looks good. I told him
about a faster than usual pulse and he says maybe it's the Lasix,
but if he discontinues it, then the edema will get out of control
again.
I
don't know if anyone else has experienced it, but sometimes, more
in the evening, I get "hot flashes" and I'm way past the
age to get them. Forgot to ask the doctor about it. Will ask my
pulmonary physician when I see him next month.
On
the whole, I feel good. Just get aggravated because I'm dragging
this 50 ft. oxygen tubing around and I can't do a lot of things
I would like to do. I ask God to help me to accept this and he has
been good enough to make me at least able to do things for myself
- a big improvement from last year.
Hope
everyone has a good Easter and I will be able to enjoy most of my
family this weekend.
Until
next time-------
Wednesday,
August 29, 2001
It's
been so long since I have written to you, diary.. I have been feeling
very good except for a few minor things.
I
have been to both my primary care doctor and my pulmonologist in
the last couple of weeks. They are glad I am doind so well, and
have been trying to get me a smaller oxygen traveling tank. My osteoporosis
really limits how often I can go out because the tank is so heavy.
The company called me this week, but they can't get what I want,
but will send me two smaller tanks if I need to go somewhere for
more than four hours. I should be thankful for their attempt even
though I know there are tanks out there that would perform better.
One
of my problems is constant bloating. I don't know what causes
it and have written to my physician to see if it is excess fluid.
I haven't heard from him except that he thinks my stomach is
large because of my age. Sorry, I don't buy that. I have never
had a weight problem in my life and don't now.
I
find it very easy to get depressed over nothing. Maybe it's
this 50 foot tubing that keeps me tied down to some extent or I
don't know what else. Maybe it's one of the drawbacks of
this disease. I do have a couple of PH friends that I correspond
with and that really helps.
If
I find out what causes my bloating, or if the new O2 tanks I might
get work, I'll be talking to you real soon.
Until
then.
Carol
Wednesday,
February 27, 2002
2/27/02
Hi Diary,
Well,
I've been in the hospital again with pneumonia. Had a fever
every day two weeks before Christmas, and passed out at home on
the 30th of December. Blood pressure bottomed out. I fell in the
bathroom and skinned my knee and the Home Health nurses are still
coming out to change the dressing every day.
I
was actually hospitalized twice. The first time, my pulmonologist
was out of town and I think I had, or came close to having respiratory
failure. After 6 days in the hospital, I was sent home, but kept
having a low grade fever every day. The WONDERFUL Home Health nurse
contacted my doctor and they sent me back to the hospital by ambulance.
They had to take a CT scan to find out that I had infection imbedded
in my lungs in some emphysema I have. They continued to give me
more antibiotics and was in the hospital for 8 days that time.
I'm
feeling good now. Finally have my strength back and will be released
from Home Health this week. I have, what I consider to be, too much
edema in my legs, but the doctor's don't seem to be concerned.
I am not taking any medicine for the PH or the edema. In fact, am
taking fewer medications than I did before the hospitalizations.
I
really feel good. Managed to get a smaller oxygen system called
the Oxymatic and I am able to lift it in and out of the car and
pull it without as much trouble as the old one. It's great.
Hope
my health is status quo for a while. Like everyone else, I just
hate being too sick to do anything for myself. Thank God for my
wonderful husband!
Will
up-date this soon
Friday,
May 31, 2002
5/30/02
Here
is is almost June and I can't believe it, diary. I haven't
been in the hospital since January and I really feel good.
The
last time I was in to see my PH doctor, I told him I felt good and
he asked me what I attributed that to. I didn't know what to
say except that everything is working as it should.
I'm
apprehensive about traveling out of town. In fact we are planning
to go to see one of our sons Sunday and it takes about 45 minutes
to an hour to get there. Physically I feel fine, but I get overly
concerned about my oxygen ie; do I have enough to last. Well it's
in my control to make sure I have enough, but I still can't
get over the apprehension.
Maybe
it's just age and our lives become the same day after day as
far as activities, and any change is hard to take. I really hate
to think I have come to that, but maybe I have.
All
I know is, I wake up in the morning and thank God I can get out
of bed on my own, get dressed, get my own breakfast and go to the
store if I have to. My husband does EVERYTHING else for me. I am
so fortunate.
I
still don't take any medications for the PPH except oxygen.
Since I was in the hospital last, there has been an increase in
the liters. I was on 3 all the time, but now I only put it on 3
when I'm sleeping. I'm on Allegra because of the pollens
in the air and over the past few weeks I've been up and down
on the scale as far as liters of oxygen I take. It's usually
4 but can go as high as 6 when I take a shower. If the pollens are
bad, I move it to 5. You can tell by your activity how much your
heart can take. At least that's my experience.
I
hope everyone else is doing as well and would welcome any questions
or comments. If you have this ugly thing, better that you have it
where mine is now.
Please
take care my prayers are with you. Carol
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