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hi! I am Alex mom of 3 beautiful girls and I have primary pulmonary hypertension. I really think that I have had this for longer than I first thought. I think that I started having very mild symptoms when I delivered my baby, who is now 4 yr. old. I was always very tired. then, when we moved to Texas, I started fainting. this was the first symptom I had, as far as I can remember. Then I wasn't able to climb stairs. it became harder and harder for me to get upstairs. I ended up crawling up the stairs when no one was watching, it was just so difficult for me to do. luckily we moved out of the house with stairs, and now live in a single story house. other things became increasingly more difficult to do. bending over to pick things up, or make the bed. changing over the laundry because of having to bend over was very difficult. Reaching up to get something I couldn't reach was also harder and harder to do. I was always tired, waking up at 10 am and taking a nap at noon was something I did everyday. then, after I fed my kids dinner, I would fall asleep on the couch for a nap between 6 and 8pm, during Rug Rats and the other Nickelodeon TV shows. Another symptom that stuck in my mind, was that I couldn't eat hardly anything. I would throw up all the time. just thinking about food would make me throw up. I kept going to see my doctor who told me I was depressed and over weight. He gave me Prozac and kept increasing my dosages. I asked what about the fainting, and he said it was panic attacks. He said, there was no way of knowing if I would faint again, that it was up to me and how I dealt with life. Finally, my husband got tired of me fainting, and us not having answers as to why, so he took me to see the doctor. My normal doctor wasn't in, so we saw someone else, who said right away, "this isn't depression, this is your heart." So he started me off with a 24 hour holter monitor. Then came all the other tests, until finally I was told Pulmonary Hypertension. I was very fortunate that he knew he couldn't deal with my PH, and he sent me to DR Frost in Houston right away. I saw DR Frost, and she sent me home with the condition that if I should faint or have any other trouble, that I come back in right away. the next day, I took my girls to see a parade, and I fainted. That day, I went back to the ER, and then went on flolan the very next day. Flolan has changed my life. It has given me back my life. I know that without flolan, I would not be alive. I can do things for my family again that I couldn't do before. I could do things for myself that I couldn't do before. I thank God for flolan. Now, having flolan has had it drawbacks also. I have had numerous infections, and hospital stays, but that is just part of the day to day life of having a critical illness. I will probably be adding more as I get the chance. I just wanted to introduce myself and share the short story about my PH history. with love and friendship Alex ^i^

Hello friends. Just wanted to let you know that everything is going great over here. I am stabilized as far as the PPH goes, and it seems that the Addison's disease that the endocrynologists found is also under control. with love and friendship ^i^

this is kind of late, I know, sorry. but I just realized that I put something in the entry before this on Addison's and didn't say anything else about it. let me start by saying that I was so sick that I ended up in the hospital. I had no idea what was going on, except that i was sick! BIG TIME! but neither did the hospital staff know what was going on with me. I was vomiting constantly, diarrhea like crazy, and the weight loss was great! I started out at 148 lbs, and at my lowest in the hospital i was 109 lbs. I went to so many tests to see what was going on with me, until finally they found that I had hypothyroidism. But, the problems seemed worth than just that. So they continued doing tests and more tests. Then they found out that i have hypopituitaryism. And still more than that, other glands were not functioning correctly. So they named the problem (and get this too): polyglandular autoimmune endocrynopathy disease. When i say a local endocryn doc she told me it was also called Addison's disease. This is still all new to me pretty much. This happened in late January and I was released early February. btw, for anyone that doesn't know, I have a web page that I have put all my information that I have researched on PPH. There is a page with tons and tons of links for ph. I know this is bad :-) sorry. But I just wanted others to know of this page. http://www.geocities.com/alexflipse.geo/alex.html My Home Page

I carry around with me a bag that I have all my "emergency medical stuff" and I wanted to let you know what I carry around with me. I have finally gotten around to make a list of the things inside my emergency bag. The biggest thing in the bag is my book. The book explains what ph is, explains what flolan is and how to mix it. It has a standing order as to what the doc needs to do if my cath comes out, or I get an infection of any kind. The orders also give the names of the antibiotic to give me if I get an infection or whatever. I also have everything that I need to mix, to do a dressing change, all the extra tubbings and claves and ports....all this is in a big ziplock baggie together with a thermometer and the covers for the thermometer. In a smaller zip lock bag I have a days worth of pills, bandaids, ( I guess for the kids if they got hurt) 18guage needles, red caps for the cassete, extra paper tape, alcohol and iodine, gauze sponges and a plastic Hemostate (a pair of scissors looking thing used to clamp of the catheter should it spring a leak somewhere. I have a little bitty bottle of hand sanitizer and in it's own baggie , I have paper towels to clean off the cutting board. Whenever I go out, where ever I go, I carry along with me my cassette that was premixed and extra ice packs in a smaller cooler that holds I guess 6 coke cans. This is what I carry. I just wanted to put this down for any new who didn't have a bag with emergency stuff in it. ^i^

Hi there! I just wanted to say... OUCH!!! My cath hurts a bit, more uncomfortable than hurt. I think that it is infected. In fact, I am pretty sure of it. I went into the doctor's yesterday afternoon and he agreed with me that it is very red. He gave me Bactroban 2% ointment. I really think it is an antibiotic cream. The doctor swabbed the site and we will find out on either Monday or Tuesday what the results are. I am hoping that I can either take oral antibiotics, or thru the second lumen, IV antibiotics. I have always had IV antibiotics, and it's not that bad. Twice a day Vancomycin and Rosephin ( I don't know about the spelling of either). So those aren't bad at all. It is very easy setting yourself up with the IV's. Gentiva sends it all to your home. You just have to refrigerate the meds, and use very clean procedure. Making sure everything stays sterile, you just hook yourself up. And the iv tubing comes with a dial which makes it very easy adjusting the drip. Take care everyone. with love and friendship, alex ^i^

this is an email i sent to the friends list on may 25: Hi all. i juts got home from the hospital last night and i wanted to let everyone know how i am doing. we went in on tuesday morning, early, and went to have an MRI. i primed the lines with dan, my husband, out in the waiting room. we had 5 lines of tubing about 30 feet long. however, when they closed the door on the tubing to do the MRI, the tubing was pinched by the door. i didn't know this, and neither did i know that they put the pump inside of the mri room. Nothing happened to the pump, the technician said that as long as it was away from the machine, there would be no problem. they did the MRI, and altho i was in feet first, i was still claustrophobic. we finished off the exam with me praying and praying. It was done in about 1 hour, i guess. off to the hospital we went. no waiting around there. they immediately got me into a room, where i changed into a gown. a nurse came in and took all my info, and then the doc came in. explained to me what was going to happen, and if i was sure i wanted to have the surgery done. He said he always asks his patients how they feel about it, because we know our own bodies and have premonitions about how it will go. He said that he always listens to those premonitions. The surgery went off with no problems, and 1/2 hour after the procedure was done, i woke up. there didn't seem to be any problems, until i was taken to my room. when ever i got up to go to the bathroom or whatever, my oxygen saturation would go down below 88. the doctor that was there, the ph fellow, wanted me to be put on oxygen at home. to make a long story short, i have to be on oxygen now at home. at least until they find out why my saturation levels go down on exertion. this is the story of my hospital stay. i am thrilled to be back home. i am on bed rest now, so off to bed i go. i just wanted to thank everyone for their thoughts and prayers. everything is good. oh i forgot to mention. the size of the fatty matter they took out was the size of a tennis ball!!!!! with love and friendship alex ^i^

hi everyone! I guess it is time for me to tell you what happened to me the other day. I noticed on Thursday night that my second lumen on the Hickman Catheter was clotted. I called the 1800 9FLOLAN number, and talked to the Gentiva nurse. She told me that since the greatest majority of flolan patients are on a single lumen catheter, that it was not a great emergency to have my second lumen unclotted. She did tell me to go in in the morning to get the catheter unclotted. I waited untill Friday morning to go in, and met my Doctor at the emergency room. The doctor worked for more than ten minutes with a anticlotting drug called STREPTOKINASE to get the clott out of the hickman. When it did get realsed, it shot out of the cath, and scared the royal heck out of me and the doc. It made a popping sound as it shot out. As soon as this happened, I started to feel realy sick in my stomach, my head and my chest. I sat up, and told the doctor and nurse there, that i wasn't doing good and something was terribly wrong. They told me to relax and lay back that i would be ok. I don't even remember lying back, when i was 'transported to another room'. It was like a dream. I could hear what was going on around me , I heard the nurse yelling "cardiac arrest. cardiac arrest." I heard other noises too, alarms going off and people cramming into the room. Slowly I was 'pulled' back to reality. I opened my eyes, and gasped for breath, sitting up at the same time. When I could, I asked my doctor what had happened and he said that I had siezured. It was thought at first that the STREPTOKINASE was the cause of the siezure, but later, my ph doctor, Dr Frost, said that it was too much flolan being pushed too fast. Now, I know that I have had too much flolan before, and it has never made me siezure like that. I just don't know. Anyhow, I spent the rest of the day in the ICU, untill they released me to go home. I did find out a few things. I never did have a cardiac arrest, my heart did not ever stop. I did however have repertory arrest. I also know now to NOT wait to get my hickman unclotted. The most this local emergency room wants to use is Heprin to try to unclot. The won't be using STREPTOKINASE on me again. And finally I learned once again, to trust my own body. I know when things are going really wrong. with love and friendship alex ^i^

hi friends. I don't have much to say today, just that i am frustrated and tired of being inside. this summer heat is awful. i would love to go to the beach, but can't because of the humidity. would like to take the kids swimming, but the humidity is too much. am i being a baby? i don't even like the kids being in the heat too much. gives them cabin fever too. just whining i guess. thanks for the shoulder, invisible tho it may be. :-) with love and friendship alex ^i^

I am so angry. I don't know why I am angry. I don't know why i am so mad. I feel like shouting, I AM MAD AS HELL, stay out of my way. I want my old life back. i want to be healthy, and be able to play and run with my kids. I want to go to the beach. I want to relax outside with out the heat and humidity killing me. I want to go back to california. I want to live my real life again. not a sick life, away from family. I am mad as hell. but there are more reasons why i am angry. i am angry that more and more people keep getting ph. there's more reason's why i am mad. i am mad that this disease is affecting my marriage, my kids, my sex life. i am angry that things aren't going my way. that they kids aren't behaving, that there are still several weeks before school starts. that my husband won't be home for 2 weeks and i can't take 2 weeks off and go somewhere. i am angry. i will get over it . i am sure.

Dear Friends. I know it has been along long time since writing in this diary. So much has happened to me and my family. i will try to put in the most important things that have happened. The main thing that is grabbing at my heart is the death of my dear friend Danette. We met at the California Forum in 1999 in San Diego. We got along so well and easily, it was as if we had known each other all our lives. And we had so many things in common. Our birthdays were the same, we were diagnosed and put on flolan at almost the same times, we were both married to military men, her's still in, mine in reserves. So many things about us clicked that is was natural for us to become so close so fast. Danette's ph was stable and under control. what she needed was a liver transplant and her insurance would not approve one for her, so she died waiting for them them to approve her for a transplant. i know in my heart that Danette did not have to die, and it is killing me inside that she did. I miss Danette very very much, and i am sure i will think of her if not every day, than sure close to every day. I love you Danette. alex ^i^