It is Tuesday, and I am staying in Milledeville. I enjoy visiting with my friend Dianne from the college. She lives on the lake, and the air is easier to breathe. I am wondering about my life. I had been thinking that once I was divorced a year and had that great echo in two weeks that said my valve was great, I might sign onto one of those dating sites again, but not now.
I feel okay, but sad today.
BP is 121/85.
HR is 77
RR is 16.
Have been trying to eat more. Eating every two hours today. I will weigh tomorrow. I am reading that exercises benefits are uncertain with PH. So last night I cried. No isometrics or arm exercises in the car on the way in today. I just listened to oldies and rock and roll and thought about digging for truffles in the pecan orchards on 441. And then I thought, I will just keep dancing.
Tuesday, January 26, 2010
Monday, January 25, 2010
abandoned by my cardiologist
Today I feel abandoned by my cardiologist. He told me two years ago to stop being worried about my heart. He said "You let me be your doctor. Your heart is fine now. Your heart muscle is fine. You let me worry about your heart. You just go out there and live." So I have tried to do that, but I did not know I had to worry about my lungs other than what we all do to protect our lungs. I think a little tutorial about PH may have been nice to have. Maybe an earlier referral to the Cleveland Clinic. I might have stayed away from the Peachtree Road Race or at least pre qualifying so that I could get a good number and a teeshirt that fit might not have meant as much.
I look cachexic so today I ate a whole Zero candy bar between my meals. In two months I have gone from okay thin to skinny. I can count all my ribs, even the ones I don't have. The last time I was this skinny was just after Dougie died. It took me a year to get back to a normal weight. I was only 26 then. I wonder what kinds of fattening things I can eat besides candy bars . . .avocados. I like avocados and cheese. I like Spanish olive oil. . . I wish I had not lost my cell phone today.
I want to get my hair straightened again. It is so easy to care for now, but I don't know about the chemicals.
Rick was painting the upstairs hall when I got home. I made him stop. I don't know about the fumes.
I have an appointment with a pulmonologist next week for pulmonary function studies.
It is windy outside tonight, and windy in my heart.
BP today is 127/85
RR 16
HR 77
wt 131
Maybe this is my new normal, slightly sick stable. Maybe I can stay like this for years.
I look cachexic so today I ate a whole Zero candy bar between my meals. In two months I have gone from okay thin to skinny. I can count all my ribs, even the ones I don't have. The last time I was this skinny was just after Dougie died. It took me a year to get back to a normal weight. I was only 26 then. I wonder what kinds of fattening things I can eat besides candy bars . . .avocados. I like avocados and cheese. I like Spanish olive oil. . . I wish I had not lost my cell phone today.
I want to get my hair straightened again. It is so easy to care for now, but I don't know about the chemicals.
Rick was painting the upstairs hall when I got home. I made him stop. I don't know about the fumes.
I have an appointment with a pulmonologist next week for pulmonary function studies.
It is windy outside tonight, and windy in my heart.
BP today is 127/85
RR 16
HR 77
wt 131
Maybe this is my new normal, slightly sick stable. Maybe I can stay like this for years.
Sunday, January 24, 2010
collagen and mosaicism
I danced for about an hour last night and noticed that once I was warmed up the faster dances "felt better". I hated to leave the 57th. The music was really good. I wish I had a better superlative, but really good is all I can come up with right now. Somehow, I have fallen into the nicest group of folks. That is how I am feeling. Like I fell down the gopher hole and on the other side was dancing and light and general good will. No, I am not Pollyanna, but if we take the time, we can look sometimes into the darkest soul and see the purest light. We just need to give it the little puff of an air kiss and a bit of tender ( yes baby I know it is spelled tinder) from time to time. If the flame burns bright, we have to give it a bit more fuel to keep it from burning out until it can burn brightly for itself. You know how the sunrise at Myrtle Beach creeps over the horizon just before we see the sun itself? That is the flame of a soul reaching for us when we open our eyes.
I might be a pyromaniac.
Speaking of eyes burning bright.
I have noticed that when my circulation is not good, I lose my eyes in folds of lids. Sometimes I look really sleepy.
Collagen problem.
I have a collagen problem of course. A midline defect or a genetic collagen deficiency. A problem with collagen easily explains my worsening scoliosis until I started dancing. Somehow strenghtening my muscles is keeping my back relatively straight, but I have recently noticed that parts of me that haven't seen the sun in a very long time have begun to take on the appearance of a partially deflated mylar balloon whereas those parts that are never covered do not. Maybe it's related to Vitamin D . . .
And that might also explain why my knuckle won't heal. I injured it in October, and it just does not want to heal.
If I did not have blood relatives, these ruminations would have no value, but I do, and if this is genetic they need the information.
And since folks with congenital heart problems have been found to progress sometimes rapidly to pulmonary failure, I am putting all this on here. Everything that is coming out of my fingers seems to come before thought. . . sometimes my mouth too . . .humm
Well before, but especially since my valve surgery in 2002, I have done everything I knew how to do to be healthy so that I can get my children to adulthood. I had to finish my teenage years with only one parent, and I did not want that for my kids.
What was this blog about? Pulmonary hypertension
Today after dancing about an hour last night, I feel good. I had some coughing last night on the drive home, but no syncope or dizziness. With the first dance I was a little unsteady on my feet, but I think it was because I was a little worried. But my dance partner was a friend who is apprised of my condition. That made me comfortable and the whole evening enjoyable. Until I get some real guidance from the Cleveland Clinic, I am only going to dance with partners I know.
Coffee made me feel better this morning since I am addicted to caffeine.
HR 72
RR 16 and grossly eupnic
no peripheral edema and I can see my eyelids
Chest is tight, but this is not new, and now that I know where it is coming from, I can rate it as still a one.
I have crossed off the things I am no longer worried over. The list is long.
I think I will head for a tanning bed.
I might be a pyromaniac.
Speaking of eyes burning bright.
I have noticed that when my circulation is not good, I lose my eyes in folds of lids. Sometimes I look really sleepy.
Collagen problem.
I have a collagen problem of course. A midline defect or a genetic collagen deficiency. A problem with collagen easily explains my worsening scoliosis until I started dancing. Somehow strenghtening my muscles is keeping my back relatively straight, but I have recently noticed that parts of me that haven't seen the sun in a very long time have begun to take on the appearance of a partially deflated mylar balloon whereas those parts that are never covered do not. Maybe it's related to Vitamin D . . .
And that might also explain why my knuckle won't heal. I injured it in October, and it just does not want to heal.
If I did not have blood relatives, these ruminations would have no value, but I do, and if this is genetic they need the information.
And since folks with congenital heart problems have been found to progress sometimes rapidly to pulmonary failure, I am putting all this on here. Everything that is coming out of my fingers seems to come before thought. . . sometimes my mouth too . . .humm
Well before, but especially since my valve surgery in 2002, I have done everything I knew how to do to be healthy so that I can get my children to adulthood. I had to finish my teenage years with only one parent, and I did not want that for my kids.
What was this blog about? Pulmonary hypertension
Today after dancing about an hour last night, I feel good. I had some coughing last night on the drive home, but no syncope or dizziness. With the first dance I was a little unsteady on my feet, but I think it was because I was a little worried. But my dance partner was a friend who is apprised of my condition. That made me comfortable and the whole evening enjoyable. Until I get some real guidance from the Cleveland Clinic, I am only going to dance with partners I know.
Coffee made me feel better this morning since I am addicted to caffeine.
HR 72
RR 16 and grossly eupnic
no peripheral edema and I can see my eyelids
Chest is tight, but this is not new, and now that I know where it is coming from, I can rate it as still a one.
I have crossed off the things I am no longer worried over. The list is long.
I think I will head for a tanning bed.
Saturday, January 23, 2010
why I am here
I am creating this blog today for three reasons.
First, to keep track for myself of my symptoms and plans.
Second, to update my friends and family who want to know more.
Third, to connect with other members of the medical community who may use the information about my disease to help others with it understand and manage their symptoms.
01/23/10
wt 132
respirations grossly eupnic and 16
HR 72 and regular
chest slightly tight, scale of 1
no pain
no peripheral edema
PA pressure 40 on 1/20/2010, 19 on 12/19/07
Must get myself an automatic blood pressure cuff. My blood pressure has been a bit erratic. I wonder whether the symptoms I have are better or worse when it is slightly higher.
Just now, I must sign off and get on with the business of living.
First, to keep track for myself of my symptoms and plans.
Second, to update my friends and family who want to know more.
Third, to connect with other members of the medical community who may use the information about my disease to help others with it understand and manage their symptoms.
01/23/10
wt 132
respirations grossly eupnic and 16
HR 72 and regular
chest slightly tight, scale of 1
no pain
no peripheral edema
PA pressure 40 on 1/20/2010, 19 on 12/19/07
Must get myself an automatic blood pressure cuff. My blood pressure has been a bit erratic. I wonder whether the symptoms I have are better or worse when it is slightly higher.
Just now, I must sign off and get on with the business of living.
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