PH and me.

quilt at conference

quilt at conference

One of my medical problems is Pulmonary Arterial Hypertension.

Pulmonary hypertension is not well-known. I had never heard of it. All I knew in 2007  was I was having a hard time breathing.

It felt like something was sitting on my chest. I was throwing up and didn’t want to eat. All this started on the way home after a procedure on my AVM.

It took three weeks in the hospital and lots of tests before I started to feel better.

Walking up stairs, especially carrying the laundry can cause me to be short of breath.

I had to give up any exercise classes. Over the years I learned  to walk  at my own pace.

There are times its hard to walk and carry on a conversation.

In April Dave and I went to a PH support group. The support group leader wants to do a fund-raiser for PH.

Around here nobody knows what PH is. So this is my attempt to let others know what PH is

At the  conference there was a booth giving on free business cards about PH.

We were told to use the business cards to explain about ph.  I haven’t tried them out yet but plan to at our family reunion.

One side describes what Pulmonary Hypertension is:

  • Pulmonary Hypertension (PH) or high blood pressure in the lungs is a chronic and currently incurable disease that can lead to right heart failure; treatment can help
  • People with pulmonary hypertension often do not look sick
  • Common symptoms include breathlessness, fatigue, dizziness, hoarseness, chest pain or heaviness and swelling of the arms and legs.
  • There are multiple treatments available for ph

Web sites to check out:

pha association

lipspaintedblue.com

Getting back on track

I have been attempting to get back on track after a really busy and stressful couple of weeks.

Boy do I really miss Daisy my 10  year old rescued boxer mixed dog. We put her to sleep right around Father’s Day.

We had birds stuck in the chimney at first I thought I heard her. I do not want a new dog. I want my old dog back.

During the summer I walked  with her and Dave. So I have joined our local rec. center to get the exercise I miss not having a dog.

The rec. center is having a summer fit contest, today is the first day. I joined.

It took longer than I would have liked to recuperate from the PH Conference.

The 4th of July is our anniversary so we had lots of things planned. Starting with a doctor’s appointment with the breast specialist.

I am back on the breast screenings every six months. March was my second breast MRI. During the appointment the question came up

about having an 85% chance of breast cancer. The doctor nodded and went on to talk about why six month screenings are done.

She talked about what could happen if I had breast cancer again in the left breast. Not a conversation I want to have again for a long time.

I have been making an effort to do things I enjoy and hopefully make a difference.

I have three pictures to enter in our local county fair. This is a first for me. All three pictures are not animals.

One is a watercolor. The Band Perry will be at the fair. We have tickets.

 I want to advocate for pulmonary hypertension. In my part of Ohio no one knows what PH is.

My family reunion is in July. I plan on attending a high school class reunion the first part of August.

That is  something I have never did. My daughter said she would go to hers when I go to mine.

So I can’t chicken out.

PH Conference Info

IMG_0462I enjoyed attending the 2014 Pulmonary Hypertension International Conference in Indiana.

Dave and I had a good time.

It was a four-hour drive.  Yes I was really tired when we got home.

When everyone got together for meals and programs they there were two big screen televisions so everyone could see.

For someone who had only met two other ladies with PH it was really big. There were people of all ages, from all parts of the USA and I think 35 countries.

 All ages attended. We saw families with babies who had oxygen. Adults with and without oxygen.

They had a kids room with lots of activities. The PH kids went swimming and to the children’s museum.

There was lots to do lots to see and lots of walking.

Every conference there is a fashion show. The fashion show is to hide or flaunt the oxygen and iv drug ports.

I was right in the middle of going through the research room during the fashion show. Then sitting in another line for a blood draw.

Most of the sessions I attended were medically lead. I attended the basics of PH. Every time I had heard them before I was in a hospital bed.

I went to the long-term survivors group. If you were diagnosed eight years or longer you are considered long-term survivor.

Dave went to the caregivers support group.  He had not been to a caregiver support group before.

IMG_0466

There were computers set up to blog from the conference. I tried a couple of time but could not get them to work.

I got some informative and useful handouts. At one booth I got a big stack of business cards.

One side had wad Pulmonary Hypertension is. The other side was about how doctors look for horses instead of zebras.

I had read about doctors needing to look for zebras on another blog. Looking for horses means doctors need to think what is more common first.

Sounds familiar !!

Getting ready for PH Conference

Between having a sick dog, my doctors appointments and getting ready to go to the PH Conference,  I have been busy.

 Bright and early Friday we are going to the Pulmonary Hypertension International conference.

This is my first time attending the conference. It should be educational and fun.

Part of the conference is the research room. Researchers from all over the country have the opportunity to talk to people with PH.

Two weeks ago I had an echo, did the six-minute walk and saw my PH doctor.

Friday I had three appointments at the main campus on the same day.

The tech doing my echo asked Dave if he wanted to watch. He smile and followed us to the room.

No one had ever offered him the opportunity to watch before. He got to see what the test was like and why it takes so long.

The six-minute walk was next. this was my third six-minute walk. I did about the same as the last one.

My doctor’s appointment was next. She did not have the results of the echo.

Dave asked what kind of pulmonary hypertension do I have?

The doctor explained I have Class one PAH with Cowden’s Syndrome and high volume heart failure.

She went on to say from her research, I am the only one.

So the doctors at the conference are going to want to talk to me. When I was little I use to say I am one of a kind, who knew.

Daisy

Daisy

Daisy

My dog is not feeling well. I have known this for a while. Next month we are going to the Ph conference.

Dave and I have been looking for a kennel to board Daisy.  We found one.

Now we do doubt she will be here to go.

Daisy we call her our kid, our kid who still lives at home. All the neighbors know her name.

The cats run when we are on a walk. The little old lady across the street sees us coming and brings her dog in.

Daisy she has made her mark around her. My award-winning picture is Daisy looking out the window.

Watching for Critters

Watching for Critters

Daisy my ten-year old boxer mix rescued dog has been to the doctor three times in the last month.

The first time we updated her shots, had some of her problems looked at. Daisy is a dog who goes on three walks a day.

She use to  love her walks. Now we walk about half the distance.

The next week she had an infection, went home with pills.

Monday night she had a hard time breathing. So Yesterday it was back to the doctor.

She took ex rays and found a large growing tumor on her stomach.

The x-ray showed a something on the spine to. So the kid has been in pain. She still has the fever.

Daisy got a shot, they drew blood. She went home with four pain pills. We had a better night.

Now we wait for the doctor to call. It doesn’t look good. She hasn’t moved from the spot she was in at 6:30 am.

Just found out Daisy has leukemia.

Everything is connected.

Everything is connected whether we realize it or not.

Last Friday I woke up at 4:18  in terrible  stomach pain. I was having bathroom problems. When I was able to go there was lots of pain and blood.

This went on fro a while. I kept thinking if I could make till 8 a.m. That way I would get a doctor’s appointment. Save the deductible

and not wait most of the morning in the emergency room. The more I waited the better I felt. So I got an afternoon appointment.

It wasn’t with my doctor by I head an appointment right before the weekend.

This doctor was not good with first impressions. He introduces himself, shakes hands and sits by the computer.

Before asking any questions the doctor raises a leg and passes gas. Then the appointment continues.

He ended up being really going at his job. He asked the right questions. I found out parathyroids problems can cause kidney  stones.

So I either had a urnatary tract infection or passed a kidney stone. The doctor said the only way to be sure about the kidney stone

would have been to come in right in the middle of the pain. Hopefully I will not have to use that information.

This morning I had a follow-up appointment with my endo doctor. The follow-up was for a high parathyroids and a low vitamin D.

Now my parathyroids had went down but not has much has he wanted it too. I get to stop taking the vitamin D. The levels are good,

and taking too much vitamin D can cause kidney stones. There is a possibility I could have a growth on the parathyroids.

So more blood tests and a kidney ultra sound.

We don’t need growths on anything anymore in the neck. Time will tell.

Colonoscopy was good, only 20 polyps this time. Last year was 27. My CEA level is 5.5  CEA is a blood test for colon cancer markers.

Mine has been and continues to be stable. Dave and I are attending the PHA International conference at Indy in June.

So things are good.

Happy Mothers Day

Happy Mother’s Day to all the moms.

I get yearly colonoscopies. Yes with a family history of colon cancer, my colon cancer and having polyps on top of polyps at my first colonoscopy that’s why.

After awhile you remember the nurses.

On Mothers Day I will be doing my colonoscopy prep. My colonoscopy is sometime Monday afternoon. My doctor doesn’t have morning appointments anymore.

Thats all right with me. The nurses call her the McGuire of polyps. NO they haven’t come up with anything better for the prep. I usually ask.

I don’t do anything with lightly in it. But other the years I have noticed you don’t have has much to drink as when I first started.

I’m still gathering my clear liquids. I like anything cold. My brother says eat less a couple of days before the prep.

My sister says make sure you use a straw. She talked about having candles and music in the bathroom.

Yes I will get through it. I keep thinking about the warm blanket right before they put you to sleep.

When You wake up there are pictures of my polyps to take home. Last year I had a fair prep with 27 polyps.

This I hope to have a good prep with more polyps removed.