4/29/01~ I am just getting to this. On Feb. 6, 2001-I admitted to my boss that I had been having chest pain on and off. She escorted me to the ER and so starts the saga.

Having had time to reflect- I had been complaining of breathlessness and severe exhaustion for several years. I was going to a very good Pulmonologist- had a sleep study done and he decided that I wasn't having enough apnea to warrent CPAP. My PCP wanted to treat me for depression-guess that would sound familiar to many with PH.

Also as I think back I noticed a big differnece in my endurance, breathing and heart rate at the beginning of the soccer season-Aug. 2000 I kidded my parents that they needed to learn CPM as my heart couldn't take all the excitement of coaching these kids-8/9/10 year olds. They kidded me back saying I was the nurse. Being over weight-morbidly obese- I figured it was the excess weight that was weighing me down. But being the busy Nurse, wife, mother, coach, referree......I didn't take time to listen to my body-would it had made a difference??? I'll never know!

So on Feb 6th, in the ER, they facilated about admitting me for atypical chest pain (I later learned they even assigned me a bed with a diagnosis of PE) and sent me home to follow up with the PCP. I did the next day. He decideed I would need a Cardiolyte stress test-hard to schedule.

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April 29,2001-con't I had the stress test on Feb 14th-Happy 43rd Birthday! the following Monday, feb 19th I saw the Cardiologist-he sched. the bilateral Heart cath the next day. What a stress getting the Insurance Co to "auth" it-they wanted 48 hrs-what a crock! That's when the doc mentioned and increased pressure from my heart to my lungs, mitral valve prolapse, reguritation, higher O2 sats below my diaphragm-wanting a CT of chest and abd to prove I had blood flow from my lungs to the liver-causing most of the problem. The CT didn't show that. The V/Q scan showed severe obstructive disease to the right lung. 2 weeks later I had a 2D echo- right ventriclar pressure is 50 (I am told it should be 30) and right ventricular enlargement-the damage is there.....

so still in the process of testing-to have a second RHC on May 11th and Hopefully to San Diego to see Dr. Channick in June.........I hope I remember to keep the journal up!

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4/30/01 It is 2:30 am and I am wide awake-my heart doing flip flops. I get so mad, why is this happening, why can't the doc do something? I need to rest and sleep to be able to function during the day. How come, no one listened to me over the last years, why did my pcp wait so long to send me to a pulmonologist? Why didn't he catch this 2 years ago-is it because I am a woman, and they weren't up to hearing me say I am so exhausted I fall asleep behind the wheel of the car going to work, wake up and feel astho I never slept, felt breathless verses wheezing.......if they had done any further tests other than an occasional chest xray and the little in the office PFTs would I be where I am right now? THEN I think so much for what ifs, it doesn't make any difference now. Concentrate on NOW. Take charge now. Care for those 2 little boys (well, not so little 1 week away from 13 and 9) Appreciate each day you can get out of bed and trudge to work..........How much has changed in 2 1/2 short months. Life seems to be on fast forward......how long will it last?

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July 10, 2001 Haven't written for awhile. My folks were here for a month.We went to San Diego to see Dr. C. Quite a battle with the insurance company to have the 3rd heart cath since feb done. Good news and not so good news......The diagnosis is SPH due to Aortic insuffienceny and diastolic dysfunction. The resting pressures were normal-probably due to the diuretics. Exercise pressures are high. This can be treated with cardiac meds and more diuretics....to find a Cardiologist who is intrested in treating me, is now a challenge. And maybe an Aaortic Valve replacement is in my future....but at least I have a future!

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I have not been very faithful! I spent the morning reading and realized I need to get on the ball! It seems as tho the year is slipping away, It has been 7 months since I was diagnosed~seems like forever, and just yesterday at the same time. Our first soccer game is in 5 days-I have a great team, not just as players but the kids are fantastic too! I have also volunteered to AR games too-AR:Assistant Referree. I will work the side lines-off sides, out of bounds, fouls with flags-my older son, Harry will be part of our team-I will do one side he will do the other and only half of the field. It will be fun, we will be gone all day on Saturdays and be on the soccer field. BOY-sure hope I can do this, talked to the head Ref-he understands my ill health so We will work only U-12 girls games, they are tougher than the boys!!! I will try to be more faithful...Happy Labor Day-hope everyone is resting from their labors.

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It is Sept 26th-I wish I was more faithful in writing in my diary. Being staggard by the world events, I am thankful for each day! I saw my cardiologist last week-he feels I am doing very well-then why do I feel so lousy? Tired, restless, short of breathe with an extra exertion......I feel as though if I FELT rested, I would feel better-but I don't. Trying so hard to keep working, coaching the soccer team, and ref'ing. They know I can't center ref-AR is much easier. BUT boy, am I just bone weary. My husband and I cried Monday night, he wants me around to help him raise the boys and I hope I am......

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I was reminded, the other day, that I should keep this diary updated. I know I should, but I haven't. I guess it is because I feel guilty. My friends are so sick, struggling with this disease, and some are losing that battle. While I am not doing so bad. The docs have my oral meds working well. I still can't climb stairs, but I can go down; I can get out and walk around the block or track; I can go to work every day; I am managing the soccer practices and games (tho this time of year I am only the Mom and not the Coach); I am able to AR (Assistant Referee) a couple of games over a weekend tournament. The asthma acts up some, the hearts pounds a little too hard at times-but I can continue to go on. I am glad I am alive, celebrated another birthday and passed my first anniversary of PH-and life goes on~~~~~

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Today was a good day-I did something that really surprised me! We had a "company" picnic and a local county park-it is near some little mountains (bigger than hills!). There is a trail you can hike on. Probably pretty easy for most people and my kids hiked it like it was flat land-I went all most al the way to the waterfall, now keep in mind this is the desert and there wasn't really any water coming down the fall! LOL It was a mile there and back. And I did all but the real climbing up the rocks to the falls. Tired but pleased that I could do it. Of course my husband was mad-he felt I really pushed myself too hard. But it felt good!

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Well-here it is, Feb 3rd 2003. In 18 days it will be the 2nd anniversary of the day I learned I had PH. Even though I know better, I am anxious over this anniversary. You read data that prognosis is (death) 2-5 years from diagnosis. I should say I have had 2 years of SURVIVAL!
I have good days and bad. I seem to have a few more good days though! I have come out of a deep depression, I was sure the world would be a better place without me (does it should Jimmy Stewartish?) But here I am.

I wonder if my reluctance to write in this diary is because I know my Mom is an avid reader of the diaries (Hi Mom!) And do I want to reveal "all"?
I enjoyed a day of soccer on Sunday-I refereed for 2 1/2 hour halfs (gave the flag up for the 3rd half hour). But really remembered all when we went to the races, after the game-6 flights of stairs (outside) in windy, dusty, chilly Arizona stole my breathe away. But I am here today, none the worse for the wear.

As the 2 year Anniversary approaches, I am thankful for those 2 years, and ready for several more!

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Well, Now I have done it!

I am sorry Mom. Please read away. Don't stop.

It is a very good feeling to know you have family that cares, wants to stay informed, and in doing so becomes closer.

I have these very special parents. More than parents, they are friends too. My Dad, bless his heart-when he first heard of all that was going on with me, he offered to give me his lungs. Now being an organ donor isn't unusual. But understand his is willing to give them up today, not when he dies. My Mom-she still comforts me, spoils me. And she is one of my bestest friends. 9 days away from 45 and I am still their baby girl. I am so fortunate to have them!

I am a little concerned that you will read something that may not be positive and may concern (worry) you. I never want to do that. But read away-maybe it will be good for me...

Cindy-Sokrsmrf
Arizona Soccer Mom
DX-2/01 SPH
LIVING with PH!

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all in a day

It's funny, you try so hard to stay independent. I still work, full time in health care. I love my job. I think I am pretty good at it.

   Then comes that time when something really importnat is about to happen. The boss gives you all these hints and warnings. Tells you to do all this investigation and have it ready by tomorrow. AND THEN says, you go home now, work on it tomorrow, and don't worry, everything will be fine.......ahhhhhh  LOLLL

  Well, there goes those finger nails that finally, after all most 50  years, are growing! Here comes the migraine...and oh the chest pain!

  It will be fine, just one "stress" that a person who isn't well doesn't need!

  I'll just go back to worrying if I can find a cardiologist that doesn't think women, especially those near 50 and over weight, are just hypochondriacs

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cool, cool, altitude

How nice to escape to the cool, cool temps in the Arizona  mountains. What a B**** to find out I can't tolerate the altitude in the mountains. Any exertion and I was gasping for breath. And sleep....well, I really needed to be propped up in a reclining position to sleep-thank goodness for reclinging car seats!

 I don't know which is worse-cool temps (56 degrees) and an 8000 ft height, or returning to the valley and the 108 temps. ugh-either way it is hard to breathe.....sigh.

  And then to find my feet looking like eggplants and an extra 20 lbs on the scale in 3 days, for the second time in 2 weeks. The cure? Not being more than 20 feet from a toilet for a couple of days.

  Ok so whinning over-it's bedtime...night all!

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