Ok...so here we go. I think I would like to start with a positive thought. I have experienced many things in my relatively short lifetime and am grateful for whatever reason my personal makeup is filled with optimisim, love for others and hope for the future. My friends all call me the "eternal" optimist and I guess I am. To keep it simple...it just feels better to me to feel that way.

I began feeling the symptoms of this disease a couple of years ago. Very mild...a little shortness of breath..a little less energy. I chalked it up to the same thing I hear a lot of you do...maybe a little out of shape...maybe slowing down with age. However, it did not stay mild and when, one morning I got completely out of breath putting on my shoes I decided to check into it. I made an appointment to see my doctor and went in the following week. He talked to me and took some blood tests and asked to see in a couple of days. When I went back he said he couldn't find anything but that my heart seemed to be beating rather fast. He gave me some medicine to slow it down! Well, I didn't take th emedicine until the next day and I thought I was dying...little did I know that it was because the medicine was slowing down the heart that was beating so hard trying to get me some oxygen! As fate would have it I ended up in the ER that very weekend with an unrelated problem. I had Diverticliosis and it was causing me a great deal of pain. I never even heard of it before. They put me in the hospital and started making my life even more miserable with all the tests. The next morning a Doctor came in to see me. I was asleep because they had given me some pretty potent pain relief and when she started talking to me about my heart and having PPH and such I was only half listening. She (Dr. Aronsky pulmonary specialist) then told me it was severe and I owuld need lung and heart transplants. At this point I perked up a bit...well, enough to say..."Hey, look...this isn't making any sense to me. I need to call my significant other, have him come in and then you can explain this to him." I figured I was just getting something wrong and was in real denial of what she was telling me.

I called Les (my SO of 15 years)and he came in right away. Dr. Aronsky then re-explained all to both of us. What a blow! What a horror! I could barely believe my ears and then had to have Les confirm what I heard! Needless to say, he was so overwelmed by all of it. He sat with me holding my hand and just cried.

Well, I need you to know something. For whatever reason, I suddenly felt so calm. I told him it was going to be ok no matter what came next. I just knew that I was right where I was supposed to be and that everything was happening the way it was supposed to. I wasn't afraid. I just felt loved and cared for. Later on, I will go into all that more.

The next step was, of course to clear up this other thing...the diverticulosis. I was in the hospital for a week over that stuff. It was miserable I will tell you! I was sent home on continuos oxygen

Dr. Aronsky then told me about making an appointment with Dr. David Ralph. He is the magician in charge at the University of Washington's Pulmonary Vascular Disease Program in Seattle. Within a couple of weeks his nurse, Stephanie Harris called me. It was then, for the first time, I heard of Flolan. It sounded like an amazing thing to me! However, she then said I would have an appointment as soon as I was approved. I said, "Approved?" "Do you mean financially?" She said yes. She said the medicine itself cost $75,000 per year not to mention all the rest that goes with it...Dr. visits...surgery...etc. I was flabbergasted! (Is that still a word?) Anyway, even being my lil' ol' optimistic self I was a little scared of that! I had just been approved for social security disability and was unsure of what my medical covered. That is another story in itself and I will save it for another day.

So, I WAS approved for the Flolan and was told to go to the University of Washington on May 2, 2000 to receive my Flolan and pump. The hospital stay was relitively easy ( I didn't like having a tube in my neck to measure my pressures) but after a few days, I wanted to go home. I got the Flolan started on May 5th. While I was in the hospital I got very sick to my stomach each time they raised the dose. The first time the Flolan nurse came to show me how to opperate the pump and mix medicine she was wearing a perfume that had me throwing up all over the place so we didn't get anything done! However, I began to level out and started feeling better. We (Les & I) had some lessons in mixing the medicine. I felt pretty confident about it all. Actually, it is a very easy to understand and carry out process.

So, on the fifth day of my hospital stay they let me leave. Off we went with two Flolan pumps and enough medicine for a couple of days. We were reassured that my medicine would be sent right to me and that I would not run out. It was delivered by Federal Express on Tuesday, two days later. That Monday a Flolan nurse came to our home to talk with us about all that is involved with using the Flolan. She also taught us to change the dressing on my catheter. A very pleasant lady. Infact, everyone I have had to deal with has been helpful and very nice.

Have I worn you out yet? Well, I am just going to add another thought for today and then close. There is lots to tell and I have lots of time to tell it all. That sounds good, yes?

I feel good. Honestly. I still have sob but it isn't near as bad now. I still need oxygen but not as much. I mostly use it when I am sleeping. I am happy. I am once again making plans for the future cuz I know I have one.

Life is good....

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This has been a good week. I have increased my flolan to 7ng and am feeling well. I was all worried that I would get sick like I did in the hospital when they raised the amount but only felt mild headache and a touch queasy. I am breathing good. Don't used the oxygen much but in all reality, I do not do a whole lot of exerting myself.

When I walk too far or try to do too much in the house i get short of breath. However, it is short lived. I just take a minute and catch my breath. I have been having a girl come in once a week to help out in the house. Mainly I have her do the bathrooms and the floors. It seems I can keep the rest up pretty well. No problem doing the laundry...just take my time. Les helps me with some things too. We are working it out! Big smile!

My nurse came yesterday to take out the stitches in my catheter. Not a big deal. Her name is Holly and she is very nice and takes her time to answer all of my questions. One question I had was regarding the dressing on the catheter site. Although it is a clear bandage and waterproof to some extent, it is large enough that I would have to be careful of wearing v necked things becasue it would show. I asked her if I would always have a bandage. She told me that in a couple of months I could quit using a dressing and would just have to make sure there is a loop im my cath tube. I guess that can be accomplished witha piece of tape. So...cool! I see that as a positive!

I have heard a lot about how others feel about the bags the pumps sit in. Nothing too positive there! I am already well on my way to designing a much better mousetrap! I don't like the bags and feel they could be greatly improved upon. I just need to do some research on the types of materials I may want to use for insulation purposes and then I am on my way! I will let you know more as this project progresses.

We are planning a trip to Puerto Vallarta in November. I am soooo excited about it! I realize I will have to do more than just throw some stuff in a suitcase this time but am ready to do whatever! I lived there for a year before I got sick and am very aquainted with the town. I don't have any fears about not being able to do what I need to do for my illness while there. It is, however, one of the reasons I want to design a new bag for the Flolan. Although November is during the mild season it is still hot there and I don't want to need to change my ice bags every ten minutes!

Today I go to the University of Seattle Medical Center to see Dr. Ralph. It will be my first check up since being put on the Flolan. I have a number of questions for him so am looking forward to the visit. When I asked my nurse how often I would go in she said usually around 1 month, 3 months, etc. Of course, I have my blood checked here in my hometown every ten days or so. I take coumadin (blood thinner) and the level needs to be monitored regularly.

I had a couple of new adventures this past week too. First, I finally came to realize that even though I believe I will be getting better and better on the Flolan, right now I am unable to do some of the things I like to do because I am unable to walk too much. So, I talked with my local pulmonary doctor and got fixed up with a motorized wheelchair. It will be here in about a month. I also decided to quit killing myself by walking behind a cart to do my grocery shopping and got into one of those motorized carts they have at the store. It was great! I had put off doing that because I felt embarrassed and weird about it. Afterall, I don't "look" sick! With the help of my significant other I came to realize that it is not important what other people think and....most of the time they don't think anything of it anyway!

So, all in all...life is good...

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Back To the Basics?

Where to begin?  I started this diary in 2000 when I was diagnosed with PPH.  This is the first time I have written in it since then.  I'm a little nervous about it.

I thought I would be gone by now.  My doctor said I would have about 2 1/2 years when I was diagnosed in February of 2000.  This coming May 5th I will have been on Flolan for five years.

Within this past year or so I have been experiencing some emotional turmoil over some of the issues involved with having this disease.  I have made an attempt to struggle with these issues on my own.  However, I have come to the conclusion that I am unable to come up with any answers that give me any measure of peace within myself.

What I have come up with is to go back to some of the things that helped me in the beginning.  Writing in this diary will be one of them.

Please bear with me.  I think it will take me some time to actually sort out and put down what it is that is going on with me.  I have always been a strong person and it is very difficult for me to share anything that may appear negative.  I believe that my positive attitude has been an important aspect in my physical and emotional well being.

I plan to share all of the past five years with you. 

This is my beginning.....more will follow.

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