PHCentral - PAH: The Complete Resource: Coping With PAH

I've had Primary Pulmonary Hypertension for 13 mths. My pressures when I had my right heart cath done in the beginning of Oct. 2004 were 101 and then when they started me on the flolan when I entered the hospital on Oct. 19th of 2004 I was on the verge of having a major heart attack cause my heart rate was 170 and they had to shock me 3 times after trying two type of IV medicine. When I left he hospital on Oct. 23 of 2004 were 98, so that was good. When I had an echo done in Feb. of 2005 the pressures were 75 or 76 and then in June they went up to 87 and then I had an echo done in September and the pressures were 75. I'm currently on 16ng and working my way up to 20ng. My doctor told me that I had to quit smoking which I've should have done last year. I guess Flolan isn't really working that well with my body cause he's talkin about sending me to Fairview, Minnesota to see the transplant list which I DON'T want to do. I have had some epsodes of passing out and chest pain and being outta breath last month so they put me on a heart monitor called an event monitor for a month. My pulmonologist didn't know if it was my heart or the disease, well GUESS what, it's the disease. I hope before I die that they will find a damn cure, instead of the transplants. I want to have the same organs as I was born with. I know that seems selfish, but I don't want to have someone die so I can live. This disease is tearing me and my family apart well especially me when I have to mix my medicine daily. Sometimes I want the cath out but then I don't. I don't know what to do and no one from around my town has this. So I don't know what to do for natural support. I hope that everyone with this disease is cured within the next 5 to 10 yrs.Jennifer

Shoot, I know it's been atleast over a month since my first entry. I saw Dr. Cosmic in November and he wanted to start increasing my flolan once again up to 20ng. I was on 15ng the last time. He's wanting it to be increased every two weeks since I can't handle the increasage every week since it affects my psych meds. So I told him every two weeks were better and he agreed. Next month, I go see him and he's going to refer me up to Fairview, Minnesota to get evaulated for the heart and lung transplant. Also, he's going to do the right heart cath sometime next month or in Feburary to see what the actual pressures are. On Tuesday, Dec. 13th, was a very bad day. My nurse who comes and sees me once a month is concerned about my health. She's telling me that I'm loosing to much wait in one week. Too me, that's good haha!!! But I'm not really eating all the time cause I'm so stressed out cause of my boyfriend (which I broke up with him on Tuesday also) and are arguments, my protime not leveling out. I guess one of the side affects of Flolan is not being hungry. I'm just so stressed right now, I just don' t know what to do. I haven't quit smoking which I NEED TO DO!!!!!!! Just earlier tonight my mom and I were going to decide about my funeral. You know that's stresses me out right there and it really scares me. I'm scared of DEATH anyways. I just pray to go that my pressures will go down and this medicine will work. If not, I don't know what to do. There's not support groups here in the town that I live in. So far, I'm the only second case here in Creston, Iowa that has this horrible disease. I don't know the other girl but she's around my age, as far as I have been told. I'm just in depression right now not knowing what's going to happen from one minute to the next. Also, I hate this damn cath because of it giving me a low immune system. I'm catching colds everytime the weather changes. Right now, my doc has me on agumentin (which I take 2 tablets twice a day, which is 1000 mg a piece) that's some serious antibotics I think. How much the dosage is. She is trying to quit rid of the sinus infection and plus just incase I get an infection in my line that it can be cleared up also. So I understand why she has me on so much of a dosage. I'm beginning to hate my life now and wishing sometimes I can take the cath out. But I promised my mom, sis, dad, and brother that I wouldn't do it. They are the only reason why I begun this treatment, otherwise I wouldn't have done it. I'm such in a emotional whirlwind. I wish there were support groups around me, where I can go and be around other patients who has this. But I don't know of any and I don't know where to look at. I just want to give up but I don't want the disease to beat me physically and mentally so I want to fight back as hard as I can. I'm trying to keep my chin up as much as I can. That's the only thing I can do right now. Yall also have a MERRY CHRISTMAS AND HAPPY NEW YEAR'S!!! May GOD bless you all and your families at this wonderful holiday and everyday of the year!!!!!!!

P.S. I keep thinking in the back of my head that this might be my last christmas, I know I said that last year but it just seems like the news gets worse or something. I just hope it ain't cause I want to live til I'm atleast 50. Yall thanks for listening to me. I appreciate everything. Take care and be safe at this holiday season!!!

How's everyone doing? Hopefully everyone is doing good!! I had to have a heart cath done on Feb. 22nd and the pressures haven't really came down but then they have. I didn't know that you couldn't compare the heart caths to the echos. I guess you have to compare the heart caths to the heart caths and echos to the echos. But anyways, I'm doing okay just depressed. My first heart cath was in Oct. '04 and the Pulmonary Artery pressures were 93/47 but the heart cath I just had done were 77/37 so i guess the pressures have came down a bit, but not where Dr. Cosmic wants them. He's saying that the smoking is interferring them and maybe I might have sleep apnea which might be interferring with the pressures staying up also. I'm trying everything to quit smoking but I don't know what to do. He is sending me to this doctor in Iowa City who does nothing but specialize in Pulmonary Hypertension and try to figure out what the long term goal would be. He says it's been 16 mths and hasn't seen any signs of detoriation (or however you spell that damn word) but I don't know if they are going to add another med with the flolan or not. He is having me go up to 22ng and right now I'm at 20ng. So it ain't that bad. One good thing he said, is that I'm far off from being on the heart and lung transplant, which eased my mind cause that last Monday I had a HORRIBLE dream. I saw myself go into cardiac arrest and them shocking me til I got to the hospital in Minnesota and at this time I was in my hometown in Oklahoma. And I kept coding on them but I made sure they kept bringing me back and I finally got to Fairview, Minnesota and I was wanting to tell everyone bye and also Dr. Cosmic bye, but then I was in a room where I saw two colors, pink and blue, which were monitoring 6 of us that were waiting for the heart and lung transplant. The pink meant you were in congestive heart failure and the blue was meaning that you were in the last stages of the Pulmonary Hypertension. I was the last to go but I was on the pink side. Which scared me even more, but right before I woke up I started hollering at my family and everyone around me telling them, "See I told yall that I didn't need a heart and long transplant and that I would beat this!" Then I woke up and having a panic attack because it really scared me. But when I saw Cosmic on Friday (3-3-06) reassured me that I'm doing good than what he expected me to do. So, I'm trying to come out of this depression and everything. I'm trying to keep my chin up and stuff. But I can't wait to go to Oklahoma for my b-day which will be next month. Oh, one good thing about my dr's appt was I had to do the 6 minute walk. My last 6 min walk, I done 950 ft and my pulse ox got down to 94 to 93 but this time I walked 1400 ft and my pulse ox kept at 98, so I'm doing good on that. :) But I just wanted to write and hope everyone IS DOING GOOD!!!!!

I'm not doing to good physically and mentally today. I have no clue why I ain't doing good mentally. I guess I'm still in the depression, I thought I might be out of it by now but I've been in the depression since Feb. 22nd, and I don't see my physcharist not til the 24th of this month. She increased my effexor to the maximum dose for this pill but I don't know if she's gonna add something else or gonna put me on something else who knows. Physically, I know why I don't feel good because Dr. Cosmic had the flolan increased last Monday and the symptoms are kinda more intense this time. I'm just soooooo tired and all and plus the weather doesn't help. I'm wanting to go to Oklahoma more and more everyday. I just want to go see my family and be down there for my birthday but I don't think it's gonna happen. I just want to go back to my hometown, Okeene, and see my friends and go see my dad and sister in Fairview. Then go stay with Josh and Audra in Weatherford and then go see some of my aunts and uncles in Oklahoma City and might be able to see Grandma and Grandpa in Edmond. I just want to give up for some reason, I have no clue why. See it doesn't help when I have to stay in my apt all day long cause I don't have a car or any friends that have a car. So it sucks majorly sometimes. Today I went to go rent Walk The Line and Saw II, maybe that might cheer me up. The rain here in Creston is just gloomy so that is kinda affecting my mood also. I'm suppose to go to the casino tomorrow but I don't know if I really want to go. I really want to get out of town and this state and go to Oklahoma. See I know if I was in Oklahoma I know I will have things to do and people to see and stay busy. I really don't know anyone here in town that much just a few people. I think that's why I'm depressed and plus I have only seen my mom twice this week. I hate only being able to see her once a week. See Smokey, my 4 yr. old cat, is sick too. He has a cold in his eye and probably a sinus infection so on Friday I got him so antibotics and eye ointment to help him fight this. He has a low immune system like I do because he has the feline leukemia-aids disease. I don't know how he got it but he was just diagnosed with it in December of '04 which made me cry and didn't know what to do. He's just like my own son, which I'm sure I'll never be able to experience that myself. My mom was looking up something and found out that the Depo-provera shot can affect the pressures so I'm going to ask that doctor/professor from Iowa City when I go see him about that. If that's so, I don't know what birth control to use. The only reasons why I was on it besides birth control which is the # 2 reason is for the heavy and painful periods (is the #1 reason). I can't take any of the birth control pills cause I had a blood clot in my right calf in Dec. '03 so I can't take that. So there ain't that many choices to take to help control my period and earlier this week I had this break through bleeding which made me more nervous cause I've been on the depo shot for over a year ever since I have been diagnosed with PPH, which has been 17 mths this month. So I have alot on my mind maybe this is why I'm depressed worry about crap like that. I'm going to be quitting smoking for good when my cigs are gone which I have a pack and half left, so I'm kinda nervous about that. But I do have the Smoke Away and a 5 lb. bag of jolly ranchers to help out. This weekend has been so boring, haven't done anything. My mom came in and went to eat and got 2 movies and then went to get laundry soap and came back and talked to Josh (my bro) to see what he's up too. I just miss everyone and the weather in Oklahoma. Well actually I miss calculated about my cigs, I only got a pack left. Maybe before I go to bed, I should start the smoke away and throw the rest of the pack away. Who knows. See I'm really stressed when I talk to my aunt Kathy cause it seems like she likes to dog my dad alot. Yeah my dad may not be perfect, who is. See I know my dad hasn't been a dad throughtout my life. But since I have been sick he has acted like a dad, which makes me mad but atleast it's sooner than later. So, I don't know what I'm going to do with her, I don't know if I should quit talking to her or not. See I haven't seen her or her 3 kids since I was 4 or 5 until my MeMa died back in 2003 and that's the first time I've seen her and I was 24 then. So it's been 20 yrs since I've seen her and I want to get to know her but I'm not to sure if I want to continue to get to know her. It seems like my family is always screwed up. I'm just used it being me, my mom, and Josh all my life after my parents divorced in '88. Any suggestions on how to handle this?? There's to much on my mind right now, so maybe I need to get off of here and go watch the movies and go call my dad and sister. Or go clean, YUCK!!!!!!! I hate cleaning haha! Or just go stay busy til it's bedtime and not answer the phone or go lye down since I'm not feeling good. But I hope everyone is doing good and I'm thinking of yall and yall are in my thoughts and prayers everyday!!!!!!!! Have a good day and good week. Til then, talk to you guys later. Love yall very much and thanks for being there!!

Where do I begin??? I know I haven't wrote in this I think since my last dr's appt on the 3rd of this month. But who knows. I'm just sooooooo tired, worn out, and very stressed!!! See I thought my SIRF (Southwest Iowa Resources for Families, Inc.) worker Holly would help me out on alot of things these past two weeks. But I guess I was wrong. (SIRF is a mental health service) See I went to the casino on Monday mornign and didn't win anything which is okay. But it totally worn me out. Ok here where it all started. On Sunday(3-12) I woke up @ 9am because I set my alarm and I can't remember why I did, I think it's because my mom was coming into town to help me with something. Yes it was set for 9 am because my mom was coming into town to help me with laundry, but when she got here it was sooooo cold and rainy so I decided not to do that. We went out to eat and I got some movies and go some laundry soap and came home. I was going to clean but I was too tired. Then Monday (3-13) my alarm was set for 9am again because Holly was going to be here @ 10am so we can go to the casino. Well she didn't show up til 10:30 and I already called in refills for some of my meds, well I picked them up and told Holly that I needed to get a roll of quarters and a book of stamps before we left town but that didn't happen; but we got them when we got back into town. Well I did 3 loads of laundry on Monday and was I worn out that nite. Tuesday (3-14) I went to the Day Program from noon to 2:40pm (was suppose to stay til 3pm) but left early cause Holly showed up and we did some running around and then she took me home. Wednesday (3-15) Holly came over and I needed to get out of the apartment for a bit, I was a bit overwhelmed and all and then she did her errands and mailed out her bills (see the rules are is that they can't do any of that on company's time and/or the consumer's time against policy) but anyways, I told her that I needed to start cleaning because inspection will be on Tuesday(3-21), so I needed to start cleaning so I won't be overwhelmed on Sunday and Monday nites. Well that didn't happen either. Well she was suppose to be here on Thursday(3-16) @ 10am because she would have to leave town around 2pm but guess what she never showed up but she did call at 9:30 I had my alarm set for 9 but I couldn't hear it over the radio, alarm, and the fan going. So I woke up and waited to see if she showed up but 11 rolled around and no answer so I went back to bed. Well I woke up @ 12:30 and I checked my answering machine and she didn't leave a message so I called the office 1st and Joan said she wasn't there, so I called Holly's cell and no answer. So I waited until 1pm to call her cell again but no answer, so I called the office again and Joan said she wasn't there and haven't been back into the office so Joan said she would call Holly. Well if Joan get's a hold of Holly, Holly would call me back. But I haven't heard anything from her so I knew Joan didn't get anywhere w/her. So I waited til 3:30pm to call her cell again but no answer. So I'm really pissed and all and I called my mom to see if she would come in and take me to go get groceries (which is Holly's job) and take back those movies. Well I did those things except for taking the movies back cause I forgot. Well we went to Walmart and I saw my friend walking to Walmart and then I saw Holly's vechile driving up towards Mitzie. Well I ended up using my mom's cell to call Holly and get this, she answers the cell. She said that she didn't have any minutes on her phone except for 1 or 2 mins so that's why she didn't answer. So I thought no wonder I couldn't get a hold of her but then I was thinking why is she anwering her phone now??? but maybe she got mins on her phone earlier. I told her that I had to go see Dr. Carol from Iowa City on Tuesday (3-21) and that she doesn't need to work with me and she says okay and that she'll work with me tomorrow. Well tomorrow begins (3-17) and no answer. I get this phone call from another worker saying that Holly's sick and that Mary's going to be working with me but I said forget I'm not feeling good and that I'm just going to go lye back down. Well I called my mom that afternoon to ask her if she could take me to return the movies since I couldn't get a hold of Matt and Amanda. She said she would and then we did and went to go eat and then I decided I'm going to go stay the nite. I went home w/my mom and everything and ended up staying up til about 1:30am on the internet w/my mom and then went to bed and I didn't fall alseep til 3:30am and then my mom came and woke me up since her dog,Buster, woke her up. So they decided to wake me up @ 6:30am. Then my mom and I decided to go to the casino and I came home around 1:30pm. I ended up going to be around midnite and I kinda slept okay but not really. Then today I called Holly to tell her a few things. Well #1 was to remind her about the appt in Iowa City, and she said oh yeah and then turns around and says she didn't know anything about it. So that made me mad. #2 was to find out if she was going to work w/me in the morning since I have inspection on Tuesday and she said she wasn't sure if she WOULD work with me since she had to work with someone else. I'm sitting here thinking in the back in my head, yeah right Holly this is about the 2nd or 3rd lie I caught you on cause I did tell you about the appt on Tuesday and you said oh yeah and then you "SUPPOSEDLY" didn't know anything about it. And that you did have mins on your phone just didn't want to answer the phone cause you were doing things that you weren't suppose to do and that the reason why you don't want to work because Lucas is more important that me and Mitzie. But I was so angry I just wanted to scream but the #3 thing was to find out who I was going to get to and from couseling, since it is from 3pm to 4pm and the trolley quits running @ 4pm. She told me not to worry about it. Then she said she's going to let me go since she had company. I was like if you had company why are you talking to me, you should've told me to call back later cause your family was there instead of asking me how my weekend went and if I went to the casino and all that. So I don't know for sure if her family was there or not. But anyways, I'm so stressing over about cleaning and no one is here to help me and I have to do tons of laundry and I can't keep running up and down the stairs since being SOB and it being cold lately. My mom offered to come in and help me with ALL my laundry but my anger got in the way and told her no because I need to clean and that it was HOLLY'S job to help me with that not her's. So she didn't come in, which is fine but I should've took her up on that cause I really need clean close. So, I called my case manager and left a message for her to call me tomorrow so I can talk to her about all this and so I can find a new staff person. And see on Thursday (3-16) Holly told me that SIRF was getting on her case about my sleeping. And I told Holly that they should know that there's days that I don't feel good and that all I want to do is sleep since I get fatigued. Well I told my mom that on that nite and she called SIRF and talked to Dan and asked if there were any problems about me. He said no why Pam. He said what Holly told me and he told my mom that he was fully aware about PPH and the symptoms and what Flolan was and all the side effects because his wife is a nurse. Well you know what the only thing he's concern about is my eating habits and something else..OH DUH!!! I remember now, my smoking. Well guess what Holly lied. So I have caught her in a bunch of lies since Thursday. So tomorrow or when I get back from OKLAHOMA!!!! on April 9th, I'm going to put in a request to change workers. Cause she hasn't helped me in any of my goals or anything like that. Like budgeting, socialization, origanization, or cooking. I'm shocked she actually help me put my Flolan kits together on Wednesday or Thursday. So I don't know what to do or say. Just really stressed. What do you guys think? Am I overreacting??? Honestly someone please tell me what they think!! But on the brighter note that I'm going to Oklahoma in a week. YEAHHHHHHHHH!!!!!!!!!!!!!!!!!!! I don't know if I'm ever coming back LOL but I have too cause my dr's are up here and my mom won't let me outta her sight. MOTHERS huh!! Just kidding. But I hope yall had a good St. Patty's Day. I did kinda just watched John Edward, got on the internet, and played with Buster, and spent time with my mom and step dad. So it's all good. But I'm going to close now and it's 12:40 am and I need to go start on another room so I will have only 1 or 2 rooms to go by tomorrow before inspection gets here and plus I need to mix my medicine and all that good stuff. Well yall have a great nite and talk to yall later. LOVE YALL VERY MUCH and THANKS for listening. Want to know something funny, I started on this entry at 11:56pm and now it's 12:41am. I guess this is a long entry LOL. Talk atcha later yall.

Everything has been going well got back from Oklahoma a week ago today. My trip went very well I had so much down there visiting everyone and just relaxing. Before I forget, Sue I would like to apologize that I didn't send you a postcard because I thought Walmart had them cause I saw them there last time I was down in Weatherford but I didn't see them this time and plus I didn't get to go do things in the afternoon because of my brother and his wife working during the day so I hope that you accept my apology. I will send ya one from Iowa. The last week I was down in OK I told my grandma ( my mom's mom) that I wanted to come down there and visit her and that I would probably come down there that Sunday. But things didn't work out and I didn't see her due to me falling alseep, my brother taking my dad back home on Sunday, Josh not wanting to see her (since she hasn't had nothing to do with him in 5 yrs), and the freakin gas prices which are outrageous. Well I came home and was VERY scared to call her and to tell her that I am home and try to figure out how I was gonna tell her why I didn't get to come and see her and I was trying to find a kind way to tell her so I thought it through a couple more days and ended up calling her either between Tuesday and Thursday. She was hurt and didn't know why I didn't call her and I tried to explain the situation to her and she was throwing some past issues in my faces and I told her that I was also hurt cause I called her on my b-day and she didn't even tell me happy b-day but that's beside the point. But she didn't take the news very well and she was yelling and makin me feel guilty which I let her do but I decided that I wasn't gonna take the hurt anymore so I just told her grandma I gotta go I love you and I said bye and hung up. Well a few days went by and no response from her so I emailed her, hopefully trying to get the point across to her, and told her that I'm tried being in the middle and about how bad my mom and my brother are and my mom's sister and her kids are also. I was being calm and thought since we were both "adults" that we could resolve this situation and just tried to be reasonable about why I didn't come down there and I didn't want to be in the middle between everyone and her cause I was already stressed out from not being able to sleep like a week before the trip. But she didn't respond to the first email, so Saturday my sister threw a hissy fit cause she didn't get my bro's truck and that my step dad bought it and drove down there to get it and all that but I just told Shelby to take it up with Josh and to leave me outta of it but I will be there if she wants to talk. So later on in the day I emailed my grandma again to see if she was over her being mad and all that and told her if she didn't want to be in my life just let me know and I would've understand and asked her if she wanted me to send my b-day present back since she mentioned it on the phone and all that. I just wanted her to be happy even if it means not talking to her again. According to my mom that I need to quit kissing her A$$ and realize that she's only gonna love herself and no one else. Cause she's been like that throughout my mom's entire life and she ain't gonna change. I just wanted to find out if she's mad and I hate it when someone is mad at me cause if something is wrong with a situation I want to fix it and make it right. But she never responded to the 2nd email and I'm even more hurt cause it was almost a week she hasn't even responded to my emails, hasn't called, or even sent me a forward which is unusal. So I'm trying to let it go and then finally around 11:30pm on Sunday I gave in to my temptation ( my temptation to wanting to talk to her) and called her. It took her forever to answer the phone and when I said grandma and she was like yes in a different tone than she usually talks in, so I knew she was still mad but I needed it to be resolved and for it to be a closure for me. I asked her if she was still mad and she said yes and I asked her why she didn't want respond to my emails and she said she was hurt which I understood and then she started bringing up the past and about my bro and my mom once again and I am feeling these hurt and anger feelings and I just wanted to go off on her but I knew I don't need to do that. I just told her that's the past and whatever happened between you guys, that's between you guys and please leave me outta of it. I told her I couldn't take it anymore and that I would like to know if she was gonna be in my life and she told me she didn't know and she didn't know when she would get over her anger. I told her that I don't know if I can't wait that long to see if and when she would get over this cause I don't think it's fair to me or her. I love her with all my heart and soul but I can't deal with the hurt anymore. Going to OK was a wake up call for me about my feelings and how people have hurt me in the past and how to deal with them. I told her that's fine if she doesn't know if and when she's gonna get over it but until then I'm not gonna try to worry about it ( YEAH RIGHT, I will LOL) so I told her fine I'm give up she wins and to have a nice life cause I'm not gonna play these games anymore and she was I will have a nice life and I said good and then I hung up and I called a crisis line to talk to someone and that didn't really help so I called my mom to talk to hurt and I know I have to accept her for how she is and that's she's not gonna change. But I just don't understand how someone that you "supposely" love and that is especially your own blood could say hurtful things to you and don't care. So I just got into bed and got bunch of junk food and watched tv until I fell alseep. Well I know I did a positive thing today. I started thinking how my grandma acted on the phone and during the whole week and I just wanted to cry and hit something cause of the anger being built up, I decided to clean which I've NEVER cleaned when I'm upset. And omgosh I got 3 rooms cleaned. I haven't had that much energy in about 18 mths since being diagnosed about 18 mths ago. It felt wonderful to be able to clean like that and to take my anger out like that in a positive way. And to end my night, there's this guy that I really like and he likes me too and I finally met him on Friday night when our mutual friends came over and he came over with them also and I had a blast. I really don't know how he actually feels cause we are both shy and all that and didn't think he would call on his own. Because when I'm talking to Jess and David he's usually at their house and I talk to him after my convos with my friends. But when I was on the phone with my best friend my 2nd line was beepin in and I saw that it was David's number and I ended the convo with Jenn and answered the other line and guess who was on the other end. It was Todd. It shocked the hell outta me and it made all my worries go away and he had me smiling from ear to ear. So I'm in lala land right now so HOPEFULLY I will sleep good since I haven't slept good in 3 weeks. But overall my health, I think is going pretty well and hopefully when I go for my echo on May 10th that my pressures have dropped down some. I had my sleep study last Tuesday and should be finding out sometime after tomorrow on the results. But my breathing is kinda heavy cause to me it's pretty humid and it's a little hot in my apt but not enough to turn on the a/c. But I hope everyone has had a good weekend and is having a great week and a great PH day. I love yall very much and think of yall all the time. Thanks for listening. Talk at ya later.

Sorry I haven't wrote in this for awhile, I should've been writting in this for this whole month but haven't gotten the courage to do it til now. Here it goes!! I have been terrified and scared for this whole month. I feel like the disease is progressing. The reason why I feel like it is cause the shortness of breath is getting worse. It doesn't matter if I go up and down the stairs with anything in my hand or not, I get outta breath. It's getting hard to grip things and carry them, like my laundry basket or a few bags of groceries ( light or heavy). It seems like my mom has to come in and help me with everything. I'm more fatigued and have no engery. It's pretty sad that my mother has to come in and help me put my flolan kits together and/or clean. I feel like I should be doing all of this and no one else. I hate asking for help. I really do. Especially to ask my mother. I know I shouldn't be afraid to ask for help and all but I feel like I'm a loser if I do. I made this decision on my own a couple weeks ago to move closer to my mother so if she wants to stop by on her way in to work, during her lunch break, and/or after she gets off of work to check up on me. I feel like I need to be closer to family more than anything. I also feel guilty about this one situation which I'm gonna tell him on the 29th of this month. I kinda lied, okay okay, I lied to Dr. Cosmic (pulmonologist) a couple weeks ago on how I was feeling and all that. My mom mentioned that I told him I didn't have no energy whatsoever and was very fatigued and I slept all the time. I tried to tell him that I do have "some energy" and I didn't sleep all the time, just to hide it cause I didn't want him to tell me or my mom that it's getting worse. That's what I'm scared to death about. I know if I don't tell the truth to him he doesn't know if I am getting better or worse. I am going to tell him the truth when I see him next week. I promise that cause it ain't right to lie about it. I'm just afraid of dying that's all. It seems like if I go to bed between 11pm to 3am, I sleep til 3 to 5pm the next day. Which ain't good. I have been feeling really bad and all like I got a sinus infection and all that. I have had these terrible headaches since I got back from Oklahoma at the end of April and they continue to get worse. We figured, it's not the flolan's side affects because it hasn't been increased since March. So I called my family doctor about them and she prescribed vikadent (or however u spell it LOL) and then went to see her last week because they are getting worse and then she gave me some muscle relaxers to help to ease the pain. It's somewhat helping but I am kinda fighting them which I shouldn't do. But I'm not gonna do that no more. I am just worn out and I think I'm getting sick because of it. I'm emotionally drained and all. I just want be normal that's all I'm asking is to be normal so I can do things like go swimming, ride a bike, play with my cat, and just the normal things without getting outta of breath and just to have the energy to do things without getting worn out. I'm tired of crying. I'm tired of hurting. I'm not going to give up because I know I ain't a quitter. I am a Davis (what my brother would say). That Davis' don't quit. I just want to be happy and go on with my life. I just want to take a normal shower and a normal bath. But from what Dr. Cosmic mentioned that the stupid doctor from Iowa City said that he wanted me to go on Viagra and decrease the flolan. Well my mom and I didn't know anything about this until Dr. Cosmic told us at the appt about it. Which makes me mad at the doctor in Iowa City, cause he didn't do squat. He just listened to my heart and lungs and checked the back of my throat. He thought I had sleep apnea which the sleep study said I didn't. So I'm just overwhelmed about putting on more medication I guess. It's already hard for me to take my psych meds anyways, which I'm good about but the rest of the medications due to the PPH, insomnia, artial fib., and all that is kinda overwhelming. But I have to do what I gotta do. That's life. Well I'm going to get off of here and keep my mind occupied since I can't sleep and I think I got a touch of the stomach flu or something. Just don't feel very good. But thanks for listening diary. I hope everyone is having a good day and is going to have a good weekend a good PH day!!!!! Love yall.

Well diary it's been awhile since I wrote last. I guess you can say there's been some good news and bad news if that's how I can put it. Well Dr. Cosmic wanted me to get on revatio along with the Flolan. I called Silver Script to see if they have it on their drug coverage and guess what they didn't. Which sucked. So Cosmic's nurse called then insurance to see if they will approve it by a doctor's orders and they had a phone conference and they all disagreed. Well we were applying for phifzer's to see if they can cover it and all that. Well I guess my insurance disapproved it twice and it finally got it went front a panel of doctors and they approved it for just a year, which is okay. I started the revatio on the 15th and it was approved on the 11th and his office called me to tell me that which I was bawling I guess for good news LOL and I called my mom and told her about it. From what Cosmic told me that he wants me to be on revation for two weeks and then after two weeks is up I get to go down 2 ng on my Flolan, which I'm currently at 22ng until the 29th and that's when I'll go down 2 ng and then I'll go from 18ng and then 16ng and stay there for a bit and then I'll have a right heart cath done probably in September to see if it's helped the pressures go down. I pray to God it will and it has. Cause I can't take another disappointment where the pressure either go up or they go down by 1 mmhg or something like that or stay the same. I am aiming for lower 60's or 52. 52 is my brother's football number LOL. From my last echo the pressures where 74 or 75. But I moved into my new apt last nite which I like but then I don't. I guess it'll grow on me. I didn't want to move after Cosmic told me that I'm not getting worse, which my mom and I thought I was because of all the symptoms that I had and being short of breath all the time. So I decided to move closer to my mom. I live in the town my mom works at. I have til the 31st to clean my apt and get the rest of my junk outta there. My cat doesn't know what to think about this just yet since he was used to the other apt. Yeah I haven't been feeling to well all week. I found out that I have bronchitis which is turned into the first stage of pneumonia. So I'm on antibotics and all that good stuff. I just had bronchitis last month. So maybe I wasn't competely over it and it turned into pneumonia or something. So that's the bad news. I have had my friend Savannah over all last week to be with me and spend sometime with me before I moved. Which really helped but I got some packing done but not like I did last time before I moved into my old apt. I had my friend Jessica over too but she worked throughout the week. Well it was hard for me to leave my apt and then leave them too. But the good thing is that I get to be closer to my mom and the rest of the family. I get to see my mom everyday instead of once or twice a week. Well I talked to Jessica and Savannah online tonight. I told them that they need to come to see me cause I missed them and plus I was very bored cause I don't have my cable hooked up, not til Friday afternoon. Well Jess told me that she wanted to borrow my six bucks that I have left for the week, since I only get 25 dollars a week for spending money, and then she'll pay me back. See the thing was that this Nick guy was in Fontanelle which is only 5 mins west of me and they wanted to come see him and then they would come hang out with me. I had doubts but I really wanted them to come visit. I talked to my mom online and she told me what if I need the money later on. I told her true. I finished talking to her and got offline to call Jess and Savannah and they were in Creston somewhere and then they said that they'll call me back and that they might head home. I was thinking to myself I thought you were coming to see me. So I waited for a long time and then I called Jess and they were over at a friend's house and stuff and that they weren't coming to Greenfield cause Nick wasn't in Fontanelle. So that really hurt my feelings. Well she was suppose to call me back shortly before they headed home which they didn't so I got online. Well it seems to me that they just wanted to use my money so they can go see Nick but while they were happen to be near me that they will see me too. So I feel used. And another thing I don't understand is that Jess had only a half a tank as of early Wednesday morning and she went into Creston last night to (Thursday nite) see her boyfriend and then went back home which is about 10 mins east of Creston and then they came back and then went home and then went back again, see I know how much her cause uses gas and she would've been on a 1/8th of a tank before she went home so there's no way she could've make it here first and then go to Fontanelle and then go back to Afton. Which is 30 mins SE of Greenfield. See when they said they'll call me back all day yesterday they never did except for one time. And Savannah said that she didn't want to hang out with Jess that much and that I was her best friend now and not Jess. Well after Wednesday afternoon after they left they were all together all day and all night long and same as yesterday. Maybe I seem jealous but I ain't but then I am cause Savannah I got close all last week and she didn't want to hang out with Jess that much anymore but now she is. I just feel used and dirty because of it. See I don't know hardly anyone in Greenfield except for my family and my mom's friends and that's it. I just don't know what to do. I don't want to play these games where I'm "A GOOD FRIEND" one minute and then I'm the "2nd friend" I've done that when I was a teenager and now I'm 27, I really don't need this. I'm just confused and mixed with some much emotions with them and about the moving and about the Flolan and the revatio. I feel like I'm NUTS!!!! Well I'm going to close now and go play some games before I go to bed. Goodnite and I miss and love all the PHers!!!!! Have a good weekend.

Today I had a dr's appt with the cardiologist and it went okay but comes to find out he is putting me on 2 liters of oxygen while I sleep and during the day if I get out of breath. So they set it up tonight. But I'm so depressed because of it. I guess to me it seems like I'm getting worse even though both doctors say I'm not. I had to walk down the hall and back, I don't know how many feet it was, but my O2 got down to 87% and I looked at the pulse ox and my heart rate was 123 and I could tell I was really outta breath and my heart pounding and racing very fast. Well he put me on oxygen and had me walk the same distance and my O2 stayed at 98% and my heart rate was 113. I really don't know what to think right now. I have to quit smoking for sure, which I need to do. I have been having some swelling in my feet and stomach and a little bit in my hands. I have to cut down on my fluid intake. I don't know why I'm so thirsty sometimes but I do drink alot of fluids. I told my mom that I'm not going to cut my pop out of my daily life. I rather have my pop than cigs. I can't go without my pop. I have to have my right heart cath done on Sept. 1st and see the lung doctor in two weeks for a pre-op appt and all that. My mom told me if I quit smoking for 30 days that I can go get a tattoo WOOHOOO, but hopefully I can make it that long. I guess I'll just take it day by day but if not hour by hour and see how things go. Well I'm going to go to bed.

It's been a loooooong time seen I posted an entry. Well here's what has been going on. I moved July 26th to Greenfield to be closer to my mom and also be closer to my primary physician and the hospital. I think the move was a good choice for me but then it wasn't. The only bad thing for me is that I don't know anyone here except for my step-dad's family. But otherwise it's a good choice for me to move here. Well, I went to see Dr. Stevens ( the cardiologist) on Aug. 4th and I had to walk down the hall and back and my O2 got down to 87 so he put me on oxygen 24/7 except for when I'm just sitting watching tv or on the computer. It sucked very much. Well I saw Dr. Cosmic ( the pulmonologist) on Aug. 17th and I did a 6 min. walk and my O2 stayed above 94. So he thought I didn't need it, which was a BIG BIG relief for me. Well everything went good that month except for I lost my two favorite friends in the world, Savannah and Jessica. Savannah told me she was afraid and didn't know if she could handle being my friend due to the PPH. Which I don't understand that. I think you should accept the person for the way they are. So I went through a couple weeks of depression because of it. BUT OH WELL!!! THEIR LOSS!! Well in September went okay, just trying to get use to the new town and new apartment. It's too quiet here. I live in a senior citizen housing apts for the elderly and disabled. Well last month was horrible for me big time. I had constant diaherria (sorry for being so gross) all month long, I guess due to the flolan side effects. I wasn't hardly eating anything and stuff like that. And being SOB and having to use my O2 concentrator at night if I need it or during the day and sleeping alot during the day and getting my days and nights confused again. Having alot of headache, bronchitis, going to the ER once cause I could not breathe, retaining alot of fluid which is mainly in my feet, legs, and stomach. So I had pretty much went through hell last month. Oh another reason why I had hell last month was I was in a BIG DEPRESSION cause I knew October has been 2 yrs since I have been on flolan and the 2 yr anniversary also. I can remember it all like it was yesterday what happened that day when I had to go to the hospital and be admitted to the ICU to get started on flolan. My heart was hurting ( I've been telling my mom that since I was 4 yrs. old and since my open heart surgery and plus that's the only way I can describe things with my heart if something was wrong with it) and the heartrate was 169 to 170 and Dr. Cosmic asking me if I was nervous and I told him kinda and him saying to calm down which I wasn't really that much nervous, but ended up having the cardiologist give me 2 IV medicines which didn't help slow down the heartrate, but ended up putting me to sleep and shocking me 3 times which that helped. Then Dr. Cosmic, afterwards, putting in the Swan and all that. Which that all happened on 10-19-04 and then not being able to get up just staying in the bed. Then on 10-21-04, going in and having them put in the hickman catherder and all that. Well that all went fine and then on the 22nd they transfered me to a regular room on a different floor and by that time I was getting restless and wanting to go home and since Dr. Cosmic wasn't on that weekend it was his partner. I ended up convicing Dr. Berry to release me on the 23rd and all that which he did. I couldn't wait to get home. But all that memory just frightened me all month long and remember my mom telling me on 10-2-04 that if I don't do treatment that I only have a few months to live, but if I do the treatment and it goes by the text book rules that I only got 5 yrs but realictic 2 to 2 1/2 yrs. So it being 2 yrs. I was freaking out thinking that I'm going to die within 6 mths and all that. Well saw Dr. Cosmic on Halloween and did a chest xray (which looked good) and did a 6 min walk (which I walked 1100 ft.) and had the check up and he said all looks good except for the weight gain. I weighed 216 which I've been weighing around 203 to 206. So he increased the lasix and had me get blood work done for this week ( which was done today), he said that's the only set back otherwise, I'm doing really really good. So that really helped me out. So when I know I'm SOB, I'll use my O2 concentrator but otherwise I don't need the O2. HOORAY!!! I see Dr. Stevens on Friday and he's gonna set up the right heart cath. I hope my pressures are down. I'll crap my pants if they are in the low 60's or high 50's. I ended up quit smoking on Aug.4th but started back up about 2 weeks ago since everything was going horrible for me. But I'm going to quit soon again. Just need to get over that little hummpff right now. Oh before I forget I had an echo down on Aug. 17th and the pressures were like 71 to 74 which was good. But I can't wait til we know for the exact pressures. I'm aiming for 52 ( my bro's football number ) cause I know I'm half way there and I will celebrate big time if it is or even if it's lower than 71. Well I'm going to close for now and let yall know what I find out. Love and miss yall!!!!! Have a good nite and sweet dreams!!

I need to tell yall something about what I found out today from my doctor's appt. with my lung doctor. Found out that the pressures aren't coming down from the right heart cath as I explained earlier last week. Well I guess the Revatio and coming down on the Flolan aren't working. We are going back up on the Flolan as of today I'll be at 18ng and will increase the Flolan by 2ng every 2 weeks til I get up to 22ng. Well I've quit smoking AGAIN!!! I have too this time he said cause he has classified me in the Class IV category which means the worse of all. We are talking about doing a transplant evaluation. He wants it down in Fairfield, Minnesota or St. Louis, Missouri. But I asked about Oklahoma City cause Oklahoma City does the double lung and heart transplant. He has agreed to let me to go down there. He's going to be setting everything up for the evaluation and going to set an appt. up for me but I don't know when it will be. Hopefully after the holidays! But I'm really scared about the whole transplant thing. I know I've over came the open heart surgery at 4. My parents getting divorced at the age of 8. Then the mental illness and not hearing voices which I haven't heard them in 3 yrs. now. And then being diagnosed with this horrible disease. And now this! So I've had alot going on in my life but I know if I can over come those obstacles in the past that I can NOW!!! Just keep me in yalls prayers and everything. It's just really hard for my family especially seeing my mom suffering and going to all my dr's appts and hearing all this and seeing me like this on a daily basis. Please keep my mom, brother and Audra, my sister, and my dad in the prayers also and the rest of my family. Just wanted to tell yall this. Oh before I forget the 1st pressures (when I found out were 93 and the MEAN, whatever that means LOL, were 60) and the 2nd set of pressures were 87 and the MEAN were 50 and now the 3rd set of pressures were 80 and the MEAN is still 50. I guess Dr. Cosmic is looking at the MEAN thing I'm going to ask him what that means LOL but please keep me in your prayers.

Love to all and HAPPY HOLIDAYS!!!

P.S. Good luck everyone and I hope everyone has a GREAT DAY AND PH DAY!!!!!!!

I am just very stressed out today. On Tuesday, I had to take Smokey (my cat) to the vet to get his annual shots and on the way back I was getting chest pains and I was trying to focus on something else. I was only about a mile to mile and half south of town and I had to pull over and I was talking to my home health nurse about my PT/INR results and I told her what was going on with me and told her I was gonna pass out and then I pulled over and got out to get fresh air, which helped. She was gonna call someone but I told her that I can make it to town and I was just worried about Smokey if I was gonna go to the ER, I didn't want him staying in the van since it was cold out and he hates car rides LOL, poor kitty, but I decided to take him home and then go up there. Well my mom and step dad showed up at the apt. and then we went up there and they ran a bunch of test. I guess one of the heart enzymes, it starts with a "T" tryponit; however you spell it. Was doubled. it was like 11 or 0.11 or something like that and the doc mentioned something about my right ventricle working way to hard. She asked if I was under alot of stress and I said YEAH!! But they thought the cath came out cause it measured 14cm and it was 10cm about 20 mths ago when they put this one in. Did a chest xray but Kathleen (the doc on call) didn't know to much about reading xrays and how to tell about if the cath was in or not so she called another doc in and she said everything was fine with the cath. I told them that I get wrapped up in my tubing and it pulls sometimes. So maybe that's why it's the length it is now. But I have a cuff that is sowed into the chest wall and my cath is tunneled so it won't come out. But anyways, they sent me to Mercy in Des Moines and those docs ran test and all that. And kept running the tryponit blood test and I didn't know til the next day that it was normal and all that. Cosmic (my lung doc) said everything looked good on his end and when Stevens ( heart doc) wants to discharge me it's okay with him. Stevens wanted to keep me another day to run a cardiolite stress test and if everything is fine I get to go home on Thursday. I got soooooooo agitated on Wednesday cause I wanted to go home and I didn't get all my meds like I was suppose too. Especially my psych meds. I was very moody and going off on my mom and telling her to go home and everything. I just didn't know why I was acting the way I was and all that. Well I needed my ambien so I could go to sleep and that they said I couldn't because of the doc said I couldn't have any of my psych meds or anything like that cause it would mess up on the cardiolite stress test and I said I didn't care that I needed my ambien cause I'm having racing thoughts and I just called my mom and gripped her out. Well my mom called and the nurse said since the doc did write out an order she didn't care if he wanted me to have it or not I was gonna get it. I told her thank you thank you thank you. I took it and fell alseep. Had the test the next morning, I was the first one and I thought I was gonna get out early then. Well finished the test and came back to my room and went to sleep and woke up cause Stevens was there and I just heard him say everything looks good and my first words outta my mouth is " do I get to go home" and he said yep and I told him about my pysch meds and everything else and he was pissed. He said he was gonna make sure I'm gonna get ALL my meds this morning. Well I thought I would get out before noon. I didn't get out til 3pm and I had to see my psychartist at 3:20pm. So stupid me I cancelled it cause I was mad at my mom ( poor mom, sorry for everything; I love you thought) and she called and got back my appt. Told Koele everything and I know my effexor ain't workin anymore. I've been on it for like 3 yrs. So she's tapering me off of it and gonna go on cymbalta and she also increased my seroquel to help with the agitation. The increase of my seroquel has help soooooo much in the last two days. I'm just scared of trying a new anti-depressant because I've been on so much of them and hardly any of them has worked except the effexor. But since I know it ain't working, it's time for a new one. My mom told me to look up something and I want to share this with yall. It kinda makes since, the serenity prayer, about accept the changes I can't change like the disease and other personal things like my dad and my family and daily life. And all that. So I would like to share it will yall. I hope it gives ya courage and/or strength in life.

Grant me the
SERENITY
to accept the things
I cannot change ~
COURAGE
to change the
things I can;
and
WISDOM
to know the difference.
Living ONE DAY AT A TIME;
Enjoying one moment at a time;
Accepting hardship as the
pathway to peace.
Taking this
sinful world as it IS,
not as I would have it.
Trusting that He will make
all things right if I
surrender to His Will;
That I may be reasonably happy
in this life, and supremely
happy forever in
the next.

I hope it helps someone in the time of need no matter what it is!! I love yall so much and I wish you ALL A MERRY XMAS AND HAPPY NEW YEARS!!!!!!!!!

Today ain't a good day. Trying to hold back the tears but I just can't. I can't keep going on living like this. This disease is horrible it really is. On Jan.6th, I went to the ER not being able to breathe. I had put on extra weight. I thought it was the cymbalta but it wasn't. The dr said it was extra fluid. He said that the arteries in my lungs looked juicy. So he gave me 80mg of IV Lasix. Boy did that helped. Then I get a call last Tuesday ( Jan. 9th) from Marvel ( my primary doctor) and she said it looked liked bronchitis and a start of pneumonia so they started me on antibotics, according to the x-ray report. Well Friday morning rolls around and told my mom I can't breathe. So Marvel told me to come in ASAP and we did blood work and chest x-ray and she said that the bronchitis has gotten worse. So started another antibotic. The x-ray report, the Friday x-ray, came back to day and found out it wasn't bronchitis, it's the F***ing fluid. No wonder I'm having trouble breathing still. So she told me to take 80mg of Lasix in the morning and 40mg at 2pm. I have this feeling I'm not going to last much longer. I've felt this way since October. I'm praying to god that this will help ( the lasix) and that I can live longer. I just can't handle it anymore I just can't. It's tearing me up right now. I'm more worried about my family right now than this freakin disease. I don't know how to help them. I feel useless. I'm worried what would happened if this is my final time. I'm worried about my cat, where he would go and what he would do without me. I've been bless these 27 1/2 yrs. with all the people I have met and my wonderful family. I gotta go. I can't deal with this right now. I'm going to go play with my cat and/or go play some games online. Love yall very much. I may not told yall that but I really do. You guys have helped me since I've signed up with the diary and all that. Hopefully this ain't my last entry. I want million more of diary enteries so I can tell yall that I've beaten this or to tell ya that we found a cure. Just right now I'm not going to say goodbye. But I'll see yall later.

Okay I've been confused for the past week since I've talked to Accredo last week. From the information that I have researched about the side effects on the Flolan is different than Accredo's. From what I've read from others' diaries, the research, my cardiologist, and pulmologist telling me the side effects. That some of the side effects are jaw pain, blueness of the lips or skin, leg muscle and joint pain and I can't remember all of it. These are just the ones that I can remember. Is there such thing as joint pain??? From what I've read that there is, but Accredo has never heard of it before. So I don't know what to believe anymore. Or what to expect (if that's how you spell it) about the oncoming pains. Let me ask any of you PHers this, do yall get any leg and foot pain?? Any muscle pain in your legs?? What about the joints??? Like in your joints?? In your ankles, knees, hips, or back?? See I've been getting the joint and muscle pain alot. Especially the hips and back. Accredo has said that the joint pain does not come from the Flolan, they think something else is wrong. There's nothing else wrong. See my mom told me that she's read some entries and every PHer had described the same effects. So I don't know what to believe. Can of yall help me with some of this??? I'm just gonna believe what I've read online and what my dr's have said.

Sorry I haven't posted any entries in a few months but just got a lot of crap going on through my head right now. I went to Oklahoma, to get the heck outta town since I was so stressed, from May 5th through 20th. The plain ride was kinda stressful since I don't like flying but I got through it. Then my grandma and step grandpa picked me up. The first thing that I told her that I started up smoking again, which I stopped for 2 1/2 months and then began right around my b-day, which was the wrong thing to tell her. I was there from the 5th til the 9th and all I heard was constent bickering about my smoking which I went outside even when it was raining. And she told me not to sit on the couch because she didn't want me stinking it up. But anyways it hurt my feelings and then I saw her for whom she really was. All the stuff my family has told me about her I finally seen some of it. Finally got to go to my brother's for the remander of the trip. We got into it, but what brother and sister doesn't. I was wanting my dad to come and see me since he's only a hour away from my brother's. But that didn't happen so I had to take Josh's truck to go see him. I had a bad feeling not to go, I wish I didn't go anyways. But when I got there found out my step mom was in one of her moods and I go great I knew I was right. I wanted to leave as soon as I got there. Well my dad and I were suppose to go to the casino but things have changed. So we went riding around and the reason why we were riding around was to look for my step mom and found the car at a guy's house. So we went back and then my dad called the cops to tell them what he was doing just incase my step mom would call the cops (which she does ALL the time). Well things heated up between my dad and step mom and the cop. She even blamed me for crap and I didn't say anything for stop you guys. Well only got about 3 hrs asleep there at my dad's til the crap hit the fan again around 7am and I decided that I didn't feel comfortable there (which I've never felt comfortable there especially around her for the last 17 or 18 yrs) and left. Finally got back to Josh's on Saturday took a LONG NAP and decided I was gonna pack since I was leaving the next day. I couldn't wait to get back to Iowa which was really weird for me cause I love staying in Oklahoma. Anyways it seems like when I left Iowa in the first place to get rid of the stress that I came home with more. But it seems like I'm heading downward instead of up. I've been hurting really bad and gone to a pain specialist and he's put me on some heavy painkillers and muscle relaxers. Do yall PHers get any severe pain in your back, legs, hips, and etc.? Well my primary doc ordered xrays and it show muscle spasms like changes, on the verterbreas (or however you spell it LOL) narrowing with slight ostearthritis worse on the left side. I've never injuried my back or anything but the hip is so severe in my left hip and I have trouble walking or even get around my apt. Just seeing if you guys have any problems like this. I would if the flolan is making me have these kind of problems or what? I know when you increase the dosage of the flolan the more you hurt. Just trying to find some suggestions and answers. Well I'm going to go to bed. Yall PHers have a GOOD PH DAY AND A GOOD WEEKEND!!!!!!!! I love you ALL!!!

Hi Diary!! I just don't know where to start but alot of things have changed with me over the past 2 to 3 mths now and wouldn't mind getting them off my chest. I can't remember but it was either in June or July, I had an Echo to checkout the pressures and they have gone down from 80 to 58. It has shocked me that it went down that far. Whom can imagine something like that happening. It was good to hear despite of this horrible disease. I was happy inside to hear about the decreased pressures but then I was scared and I do not know why I was scared. While all this was happening, I've been going through some rough times it seems like. I have been having alot of pain in my back, hips, and legs. Went to a pain specialist for the first time and told him what's going on and we've known that when you increase the flolan it can cause pain, from what I have been told. I got out one of the instructions or side effect paper that comes along with the flolan inside the boxes. Dr. Baldi looked at it and read the side effects. He said it was the flolan causing the pain. I agreed with him thinking it was the flolan and nothing else physically wrong with me. So he put me on morphine and boy was I not fuctional. I would just sleep and sleep. Went to see my PH doc and he said that all the morphine and plus the valium was unacceptable. He could tell that I wasn't fuctioning as a human being. So he decided if I'm hurting this much that he's going to decrease my flolan for the next 3 months and I didn't know if I could go thru the decreasing again, cause when I got to 16ng, it would mess with me mentally. I just didn't want to go throught that again, but I have to be "strong" and not letting anyone know that what is going on with me mentally or physically. I just don't want my mom to worry or anyone else. Dr. Cosmic got me confused about if I should keep taking the meds, that the pain specialist perscribed to me, or not cause he couldn't make up his mind. So I quit taking it cold turkey. Boy was that the wrong thing to do. I was going through a morphine withdraw. I got thru that. So while I'm going thru this decreasing my flolan, I'm STILL hurting. So Dr. Cosmic wanted me to see another pain specialist that he wanted me to see from the very beginning. I went to see the new doc and I liked him. He wants to find out if there's anything wrong with me physically and why I was hurting instead of putting me on pain meds. Well we tried to set up a MRI appt. but couldn't find anyone that had something to do with a portal or something like that where the pump wouldn't be inside the room where the MRI is. So he decided upon a CT. Had that done the same day I went to see the new doc. Well we found out it isn't the flolan that's making me hurt. It is my back. Start of arthritis, slight buldging disk, and something else. I can't remember. Well I found out today they want to do a lumbar epideral. I'm so scared and everything, but they said it will help out with the pain where I would be a fuctional human being. I guess I'll go thru that but don't want too though. But I just ended up moving this past week to another apt. It's in the same complex where my old one is but just down the side walk to a 2 BR apt. My anxiety has went up also during this move and all through the decreasing, the weather changes, and other personal things. After finishing moving and cleaning the old apt. on Friday. I went out to my mom's and was with her all weekend. I just didn't want to come home to an apt. that wasn't put together. I ended up out of my comfort zone and into a different one. I'm sure I'll adapt being into my new apt. and trying to put everything together while as I go. It's weird that I don't have cable. I have 2 more days w/out tv but luckily my internet finally works. And I have my cat. While I was going to Walmart yesterday I heard my song, my funeral song, When I Get Where I'm Going by Dolly Parton and Brad Paisley. I just started bawling and told my mom I just want to give up. I don't want to live with this disease any longer, I just want the pump, medicine, the hickman catherder to go all away. I just want to live normal. But I can't I have to have these things inorder to stay alive. Everytime I go to mix my flolan daily I think about all of this. It's a struggle everyday just to take the Revatio and to mix my flolan. If it was my choice 3 yrs ago. I wouldn't have done this treatment. But I had to because I had to be in my brother's wedding. I have to stay alive to take care of my mom, brother, grandma, dad, sister, and my cat. I did the treatment for them, not for myself. But what gets me is when I hear my song it makes me think of my family and friends that have passed along the way that I would be with them but I WANT to stay on this earth and walk. But then I realize sometimes that I'm stronger than what I think I am. Is it normal to go through all of this daily?? The thoughts about how you don't know when you're going to pass out or if you're going to have trouble breathing that day or have trouble just walkin into another room or just walk down the sidewalk. I'm scared to talk to my therapist about this. I guess I haven't accepted the PPH or have I?? I really don't know since everyday is a struggle. My panic attacks have came back full force and I'm struggling with that also and having a mental illness ontop of all this. I just don't know what to do anymore. I've been having SOB alot for the past month but Accredo in Iowa City told me that alot of PHers have had alot of SOB during the month of August due to it being so hot. I can't sleep well at night. Mentally I have had it. I can't keep it all in anymore. Before the PPH, I was struggling for 2 to 3 yrs with the mentally illness until I got out of the ABBE Center for a year and was finally mentally stable until that day in July, when I had my gall bladder out and then the next day I passed out and had a chest xray, thinking I had a blood clot to the lungs, and finding out my right side of the heart was enlarged and everything went down hill from there. But 3 yrs later after being diagonsed, finally the pressures have come down alot and thinking that maybe there's a change I'm going to live normal again. But I want to find the cure for PH. So for the next 2 months I'm going to see if there's anything that I can do, like PH Awareness. Setting up fundraisers, PH meetings around my area, and with the newspapers or something. I can't let this get me down anymore, I need to get out there and tell my story and tell about PH and FIND THE CURE. So this is going to be my next goal while I'm working with my therapist about personal problems. Hopefully this will help me accept this disease and help me mentally also. That's another reason why I don't write in my PH diary. I just closed up for the past few months and don't want to talk about the bad things, I want to talk about the GOOD THINGS on here like others do. But I'm going to close for now and go try to unpack a couple boxes, but I can already feel my anxiety starting it just overwhelms me about packing/unpacking and plus it being hot outside as well it is inside. I have the A/C going and fans but the flushing hasn't went away yet and it's going on the 4th hour of it like it did over the weekend. Maybe I should go to bed but then I can't because my mom can't unpack this all for me, cause she hurts physically also and working all day too. Maybe I'll get a break from stress soon. When will it be?? Hopefully soon.

Who could of imagine of getting of the Flolan and just taking oral meds for the rest of their live? Well that's what the doctor is expertmenting with me right now. The doc says I'm doing really good and thinks I can get off the Flolan and just take Revatio and Tracleer for the rest of my life. According to the echoes the pressures have came down, the lowest is was about 45, shoot I can't remember when the latest echo was down all I know it was back in January or February. When it came to do the right heart cath, the pulmonary pressures were 73 or 76 but the mean pressures were somewhere in the 40s. The doc has been decreasing the flolan once a month by 2 nanagrams, so at this present time I'm at 8ng and will see the doc in a week or two. The doc has also put me on Tracleer so I'm at 125mg twice a day. I guess the experiment with me is to get me down to 2ng and take me off the Flolan and I'll still have the hickman in for about 30 days to see if I can handle being off the Flolan, if not I'll just get back on it. But if the good part is to get rid of the hickman also. I'm excited by all this in a way but majorly scared because I've had the Flolan pumping through this body since 10-2004 and thinking this is my life line and I'm really scared that the pressures will go back up and/or I'll die. But while the decreasing of the Flolan is going down I'll be put in the hospital. Don't know when. I just don't know what to do sometimes. While ALL of this is going on, my mental illness is playing a big role in this too. So while I'm dealing with the decreasing, I'm dealing with the thoughts that I'm gonna die, or I am gonna hurt myself and I just want this catherder OUT NOW!!!! I feel like since the decreasing and being put on the Tracleer, that the disease is trying to win, wanna to give up and I being torn apart and not being able to think clearly about if this is a good thing or bad thing. But we'll see. I'll keep yall in touch and let yall know. But I hope everyone is doing good. Sure do miss yall alot. Haven't talked to yall in a while. Well take care and love and miss yall. Have a good week.

It's been a while since I have wrote in this diary. Alot of things have been going on since I wrote last. Last time I wrote I mentioned that the dr wanted to wing me off the flolan, well that didn't happen. He went to some meeting in Pittsburg and that dr there told him if Cosmic took me off the flolan that I would deteriate (however you spell it). The Pittsburg dr said that he took his patient off the flolan and she started deteriating. So Cosmic (lung dr) got worried and didn't do it and left me at 8ng. So I've been at that dose since then. He added Tracleer also. So I'm on triple therapy: flolan, revatio, and tracleer. Everything is going good. Still having my bad days and good days. But mentally it's kinda gotten worse having to deal with this. 2009 is a big year for me. The fifth year anniversary is coming up which is scary to me. Since Cosmic told me 4 yrs ago about "deadline" about I only got 2 to 2 1/2 yrs but if it goes by textbook rules I only have 5 yrs. That has stuck in my head since Oct. '04. That's where the mental part has been really bad for me. I have been having seizures the last few months and starte on Keppra last week. So if it's one thing it's another. It seems like God doesn't give me a rest period. Having 3 mental illnesses, then PPH, and now maybe eplisey. I had an abnormal 8 hr video EEG last month and the neurologis can't really say if I have eplisey or not cause he hasn't seen me have one. So there's a chance I guess and that's why he put me on Keppra. Sheesh 41 or 42 pills are enough for anyone. Uggh! Anyways, everything is going okay besides that. Trying to keep warm and keep from getting sick. Went to Oklahoma around xmas time and it was great to see my family and the wonderful state of Oklahoma. Sure do miss it. I'm going back in May for my sister's graduation. Can't wait for the break from Iowa LOL!

I hope everyone is having a good PH day and hope everyone has a great weekend. Love and miss you guys!!!!!!!

As I sit here and think about my life, I thought everything was going good. I was feeling good but really tired. I thought the PH was doing good and I thought being on 8ng for the past 9 mths has been wonderful since the highest I've been on was 22ng. Well since I thought everything was going good the only problems that I've been having is seizures, which I'm on medication. Well boy was I wrong. Last Thursday ( Mar. 26th), my home health nurse came over, she did a set of vitals, we mixed my flolan, and made flolan kits since my shipment came in, she left at 4:15pm and I was just sitting on the couch relaxing and 10 mins later I just get sharp sharp pains in my chest and heart, and I was having trouble breathing. I thought it was an axiety attack or the PPH. But the pain and sob was getting worse then my left arm (from shoulder to elbow) got numb and I knew something was wrong and I knew then I was having a heart attack, so I called my mom at 4:35pm and told her what's going on and this pain was worse one and she told me to push my life line and she'll be there. Well I pressed it and the ambulance was on it's way. I got there and told them the problem and told that I can't take nitrates because of the revatio (from what it say on the bottle). They ran all the test and gave me morphine for the pain. I didn't know morphine is a vasodilator haha. The three docs said I was having a heart attack. They wanted me go by ambulance, but changed their minds and said medaflight and then cancelled the helicopter while it was in the air and then decided I could go by ambulance. When I got there to Des Moines my cardiologist was the on call doctor and he said it was a heart attack. They admitted me to cardiac icu and then my lung doctor saw me the next morning and said he didn't think I had a heart attack but he thought it may be the PPH. I was like I don't think that the PPH can cause the pain and feelings that I had and for it to last from 4:25pm to 1am (friday am). I know the PPH can cause sob and chest pain. I did an echo everything was good and pressures were the same which was 47 (which was 101 on 10-19-2004) but the cardiac enzymes were a little elavated. My brother, sis in law, my dad, and step mom came up from oklahoma. I called my brother, my dad, and my sister to tell them that I love them and tell them goodbye for the final time if something happened. The docs left me go home on Friday. I'm doing fine now but this past week my chest was very sore and I was sob some. So I wonder why that 3 outta 5 docs said I had heart attack but the other 2 didn't. So we ain't for sure what happend. This episode finally hit me earlier this week and wanted to get it off my chest. Thanks for listening to me.

Oh by the way do any of you know and/or had a MRI, where they can do a MRI even though you have a CADD pump. My neurologist has been trying to figure out where we can do one at. The ones here in Des Moines can't do it. If you have any info plz let me or email me at arieswoman99@hotmail.com.

MEDICAL ISSUES
Medical Professionals:
	Scientific Literature
Patients and Caregivers:
	PH or PAH?
	Diagnostic Process
	Treatment of PH
	Specialists & Treatment Centers
	PH Glossary
	Clinical Trials Article
	Legal Issues
	Links
	Books

COPING
	Support Groups
	PH Diaries
	Photo Album
	PH Talk
	Tips & Tricks
	Tidbits
	Creative Corner
	Caregiver Support
	Links
	Books

FINANCIAL TOPICS
	Financial Decisions
	Insurance Matters
	SS Claims-Making Your Efforts Count
	SS Claims-What's in YOUR file?
	Alphabet Soup Spelled Out-(Where Your Disability Claim Goes After it's Filed.)
	Work and Social Security: (Yes! You Can!)
	Links
	Books

TALK
	WebBoard Log In
	Register for WebBoard - Online Support for Patients and Caregivers
	Webboard FAQ
	Netiquette & Tips
	Email Lists
	Chat
	Expert Chat Logs
	Poll Archive
	Links
	Contact the Webboard Moderators

ACTION CENTRAL
	Insurance Matters
	SS Claims-Making Your Efforts Count
	SS Claims-What's in YOUR file?
	Alphabet Soup Spelled Out-(Where Your Disability Claim Goes After it's Filed.)
	Work and Social Security: (Yes! You Can!)
	Issues and Legislative Bills of Interest
	Financial and Other Topics of Interest
	Patient Advocacy
	PHC Action Desk

FEATURES
	Review of Amy Silverstein's Sick Girl
	Navigating The Health Care Super-Highway
	Random Thoughts, by Tom Mcleod
	Get More Out of Your Doctor visits
	Choosing the Right Durable Medical Equipment (DME) Supplier
	My Nightmare and PH
	Myriam's Story
	Do I Have to Ask?
	Mutterings and Musings on Being a Patient
	LIFE WITH FLO: The Series
	A Life of Lessons
	The Lighter Side of PH
	In the Wee Hours
	The Emotional Side of PH
	A Life on the Move
	Memory Loss and Pulmonary Hypertension
	The Canadian Medicare System - An Overview
	Pumpless in Colorado
	Living Life While You've Got It
	Single Parenting With PH
	Sarah of the Moment
	My best friend, Jean
	Backpacking Through Life
	A Walking and Talking Miracle
	When the Insurance Company Says “NO”
	The Courage to Change the Things I Can
	My Story
	A Father's Letter to the PHFriends Listserv
	Navigating the Benefits Maze
	Living Wills: One Patient's Experience
	Loose Lips Sink Studies
	The Way It Was, The Way It Is
	A Flower For PH
	Mr. Spock Speaks
	Living With PH and Studying Cranes
	Welcome

CONTRIBUTE
	Contribute to PHCentral
	Contributors
	Memorial Contributions
PHCentral is a non-profit organization. All contributions are tax deductible

RECOGNITION
Memorials:
	Sue Mace
	Thomas Michael Goldman McGlynn
	Carol Aserinsky, Pat Klecha, Lynn Schaeffer
	Tim Walker
	Melissa Suder
	Kathy Szczepkowski
	Eve Giulianetti
	Lawrence Robertson
	Lois Dowdy
	Kathy Evans

PH Resources
	Links to resources of interest to the PH community
	Books Amazon.com books of special interest to the PH community