 Patient Diary -- Carol Aserinsky
Carol passed away the evening of November 9, 2001.Carol had many friends within the PH community. She was a pioneer in online support for patients. She helped many and was helped by many. Carol, we miss you.
Sunday, June 11 2000
So here I am...finally getting to this diary. I've been meaning to write for such a long time...where to start?
Lets start around 11 years ago...1989. I was 43. I worked for a pharmaceutical company, Merck, in their computer division. This was a very interesting job. I supervised a department of computer programmers. My department built computer systems for the company's clinical trials. Very interesting. My days were full. It felt good. And important.
I start 11 years ago because in August of that year I stopped smoking. I had smoked for 27 years. But it was time to stop. I was a bit overweight and very worried about gaining more when I stopped. But as the doctor said.....between the two, smoking was more risky.
I did gain weight. A lot. I had to shop in the "women's" department. You know, "women's?" I called it the fat ladies' department. Well it was! Sometime in the early 90s I watched one of the 'magazine' programs. There was a lady on it who was singing the praises of a new diet treatment. I wrote the name of the drugs down to ask my doctor, but I never got around to it. In 1995 I was watching 20/20. There was a woman singing the praises of a diet pill combination, Ionimin and Pondimin. I had to do something because I was beginning to panic. I was wearing the largest size in the fat lady's dept. Some of the largest clothes didn't fit at all. Where do I go next? Where I go next is to see an endocrinologist. It seemed that a physician who understood about metabolism would be right for monitoring a diet.
I was put on the 'miracle' drug combination which I started on Saturday, September 23, 1995. You know what happens now, don't you? By Thanksgiving, I was experiencing severe shortness of breath. Well, my hormones were playing havoc with my body. I had a period that lasted for two months. Of course, I called my gyn who put me on hormones for a few weeks. It helped. By Christmas, the SOB was worse. I went to the mall to buy a last minute present. I was trying to walk fast and my feet flew out from under me and I went flying flat on my stomach. I left the mall as quickly as I could, no present, extremely embarrassed. I stayed in for the holiday season...taking 2 weeks off from work. I had an appointment scheduled for a checkup with the endocrinologist on Feb. 1, 1996. So I waited for the appointment. Too scared to call. I knew I was sick.
Finally I see the doctor. Tell him about the sob. He sends me for an echocardiogram the same day. It is Thursday. Right heart enlarged. Something strange going on with 'blood going in the wrong direction' through my heart. The cardiologist schedules me for a transesophageal echocardiogram the following Wednesday. This is Feb. 1st.
I go into work on Friday, Feb 2, 1996. I tell my boss that something is very wrong with my heart. I don't yet know what is going on. I thought he ought to know because I would have to be out for tests. Wonderful boss. No problem. I am in a meeting and my secretary opens the door and motions for me to come out. How unusual. But Armond was on the phone and insisted on talking to me right away. He was uneasy with me being hanled by a 'suburban' doctor when our city (Phila.) has 5 medical schools and some of the best medicine in the country. He got the name of a top pulmonologist and got an appointment for me that Monday - Feb. 5. How did he do that?
This guy was smart. He's been around the block. He remembers a drug in the 70s that caused an epidemic of PH in Europe. It was an anexorigen. He saw on my list of meds that I had taken Pondimin. The same drug. He knew what I had.
Thursday, June 15 2000
Well, I'll jump to the present. I am on flolan since Feb. 1999 and on oxygen since Oct. 1998. I get a patent foramen ovale when my pressures go too high. They go too high when my oxygen saturation goes too low. Then I can't do much at all. My sats are very volatile.
I had to stop working in October, 1998. I didn't want to leave. I had reached the executive level in my company. Further than I ever dreamed possible. I had a wonderful group working with me . We were friends. We still are. I had lunch with a bunch of them today. Another one was over for dinner this past Monday evening.
That was another life. It almost seems like that other life belongs to someone else. Not me. This me gets up around 8:30-9. Has a leisurely breakfast. Mixes flolan. If I'm going out, it is soon after this. I get tired as the day goes on.
That other person - me - was at work by 7. Often not home until 6. Very active. Traveling to meetings in New Jersey and Pennsylvania. Boundless energy.
I miss her.
Saturday, July 15 2000
It is Saturday today. I had a very restless night last night. I went to bed nauseous. Up frequently to unload a ton of water. Why does my body decide to release the water at night? I can think of so many more convenient times. I got up this morning feeling totally wrecked. I had promised my daughter, Jennifer, that I would go furniture shopping with her. Drat!! I can't move.
She came at about 10a.m. She was very gracious about my reneging on our plans. But the strangest thing happened. I started to feel better. I got dressed and announced that we were going.
It was a neat day. I'll skip over the dismal mistake of going to Ikea. Very crowded. Screaming children. Armond carrying my oxygen tank with 14 feet of tubing on it. Me meanering along totally forgetting that I can't go across an aisle from Armond because of the tubing - we'd trip all of the shoppers!!
Oh what a mistake. We left, went to a REAL furniture store. She found a bedroom set and a computer desk. Just what she wanted to accomplish. We then went out to a very late lunch - that way we could have dessert for dinner!!
Today was a gift. I got to do what I planned.
I am also trying not to think about the swollen lymph nodes that showed up on my mammogram last week. The doctor wants me to see a specialist. I am going to Cape May, New Jersey this Tuesday. We meet our friends from Northern New Jersey there...just like we have done for the past 20 years (with the exception of the past 3 years because I was so sick). I'll take one of the liquid oxygen reservoirs, three portables, and the electronic scooter to get around.
I love the beach. I love the ocean. It is o.k. just to sit nearby and listen to waves. I will think about the swollen lymph nodes next week.
I seem to have reached a plateau. I am still increasing my flolan, but I don't seem to be getting better. I still need that darn oxygen.
Saturday, September 16 2000
Hello Diary. It's been two months since we spoke. The great lymph node caper (as I have come to call it) turned out to be much ado about nothing. Thank G-D!!!! I saw the surgeon. She looked at the xrays and was 'unimpressed' (her words). She examined me and was still unimpressed. Glad that is over with.
We spent 5 days in Cape May in July. It was very nice. We are going back with the same friends in October.
We spent some time at a home furnishings store today. The construction on the home theater is progressing and it is time to think about furnishing. We have preliminary plans and the designer from the store is visiting our house this week to see what we are starting with.
I have been increasing the flolan more agressively since July. The doctor decided that I was increasing too slowly and was not getting maximum benefit from the medication. I've been increasing by 2 nanograms each week. Am I starting to breathe better? Or is it my imagination? The stuff doesn't agree with my stomach, however. I've lost 45 pounds since January. When I can eat (maybe once a day) I get filled very quickly. So I don't eat much. The weight loss is good at this point. I still have a bunch more to go. But never in my wildest dreams did I think that I would not be able to eat.
The irony here is not lost. Didn't diet drugs start this whole mess?? Don't think about it.
Friday, November 9 2001
Final entry
Carol passed away the evening of November 9, 2001. Carol had many friends within the PH community. She was a pioneer in online support for patients. She helped many and was helped by many. Carol, we miss you.
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