Hi, I'm Bay. I have PPH. A little background on me and my battle with this disease.

I was working as an accountant at a large company in 1998. The parking lot was a long way from the building in which I worked, and I began to notice during that summer that I would get increasingly winded during my walk to and from the parking lot. It got so bad that I began to stop at a picnic area about halfway between the building and parking lot to sit and catch my breath. I was badly out of shape, 150 lbs. overweight, and 40. I decided I'd better lose weight or I'd die of a heart attack. So I lost 100 lbs. and no longer had any problems. Until the Winter of 1999. Then it all began again... I couldn't do anything without having to sit and rest. I did Christmas for my whole family, and had to hide the fact that I barely had the strength to carry the turkey. After the first of the year, I went to my local doctor, who decided I had asthma. I began sucking on an Albuterol inhaler. It helped a little, but I still felt "not right". I began having parking lot problems again, so I went back in February. Then again in March. Finally I went to him in April and said "There is something wrong with me, and it's not asthma, and the inhaler is NOT working". He acted disgusted and referred me to a cardiologist for "a check up". When I went to the cardiologist the next week, he never even let me leave the office. He admitted me directly to the hospital. Then the usual run of tests, heart cath, pulmonary function, lots of lung tests, etc. After a week he let me go home. The next week he called and told me "Little girl, you have a serious problem. You have a disease called primary pulmonary hypertension. I've referred you to a specialist who will treat you." I thought, OK, I have a disease. You take medicine for it, then you get all better. It took a month to get in to see the PH specialist. I didn't look up anything on this disease: I was so naive. In June 2000 I went to the specialist. I was told a little more about the disease and possible courses of treatment. It still had not sunk in how serious this was, until I asked, OK, how long will this take to get over? My specialist looked at me for a long moment, then said the words that changed my life - "With proper treatment, you will live 2-5 years." And my world crashed.

This diary is to help me deal with the day to day aspects of this disease, and to possibly help someone else who might have some of the same concerns and fears that I have. I have a problem with poor oxygen delivery to the brain, so there will be misspellings and wrong words inserted out of place. This handicap is costing me my job.

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Disability - Do I or don't I?

I am going to file for disability. My problem is when to do it. I can no longer work productively. I can't remember things, my brain function is not up to par, I am beginning to suffer leg pain, and of course, I can't walk anywhere or climb stairs without getting totally out of breath. I know all this. Why am I hesitating?

Negative - I feel like I'm not 'sick enough'. I can still get around a little. If I quit working, I won't be interacting with other business people, exercising what mind I have left. I wonder what I will do with my time. I can't work out in the yard anymore (which was my hobby). I hate cleaning house. My kids are in school so I will be alone. My mother is housebound also, with her own oxygen, etc. so us getting out to do something together is out of the question.

Positive - My job is not strenuous. My boss is an angel who has patience with me and all my limitations. The pay is great. I'm a contributing member of society. I'm not a burden on anybody.

I guess what I'm most afraid of is that this is an irreversible step. Once this is done and I quit this job, that's it. If the disability claim is denied, I won't be able to work any other job. Then my logical mind (when it is present) says to do it now, while I'm still able to do some things, and not wait until I'm bedridden. I have the funds to make it a couple of months. What am I waiting for?

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Reality.....

It has a way of hitting you when you're not looking for or expecting it. Last night I began to go through my medical files, preparatory to filing for disability. I had my medical files copied (I had 2) and now I have to sift through the junk to get to the relevant papers. I now know that when I was diagnosed, my PAP was 105. When I was put on Flolan, my cardiac output was down to 1.5. In the letter to my insurance company justifying the medical expense, my doctor's office wrote, "This is a degenerative disease with a poor prognosis, requiring increasing levels of care to maintain life." On my last echo, my PAP was still 85. I know that all these are just numbers, and it all really comes down to the fact that I am feeling better and able to do some things again. But I just wanted to know the figures.

Like Lauren Hutton says in her HRT commercial: "Knowledge is power. Information is how you get it."

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Thank you, God, for this day!

So often I think we all get mired down by the worries and troubles that everyone, even the healthy, go through every day. Then suddenly, for no apparent reason, you wake up one morning feeling like a million bucks and so thankful and grateful to be alive! Today is one of those days for me, and I surely do appreciate being reminded of all that I am and all the wonderful things I have going on in my life. Instead of having to "deal" with aspects of my disease, I'm reminded that fall is just around the corner, the holidays will soon be upon us (yay!), and there IS a future out there waiting for me! I feel that I've been gently smiled upon to remind me of the important stuff.

I hope everyone gets smiled upon at one time or another.

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Last night my son was inducted into the Boy Scouts. He's been a cub scout for years, but now he will be in with the "big boys". It was a beautiful candlelight ceremony, and I was so thankful to be there to be a part of it. At 11, he is the man of the house, a responsibility he takes quite seriously. He is such a helper. Every time he reaches a milestone like this ceremony, or starting a new grade in school, I have to give thanks that I am still here to see it. I know I won't die tomorrow, I might not die for 20 years, but it sure makes me appreciate each moment, each memory. I'm so sorry I didn't take a camera. Oh well, it will always be part of my "mind pictures" as we call memories like this. Heehee I guess I'll be ok as long as I don't lose my mind....

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WE've gotten so much rain in the last week! Almost 15 inches. Most people here are griping about it, but I love it. I used to be a landscape designer by trade, and always looked forward to rain. To me it is a nourishing process. I haven't been able to enjoy my new patio set, but I have a sunroom at the back of my house, and I can sit in there and still enjoy the rain. It has lowered the temperatures here also, so I've been able to get out and do things. I took my Mom out to eat yesterday and then she wanted to do a little shopping, so my son and I alternately pushed her wheelchair and kept up with her O2 tank. We had a great time. I think everybody around here had cabin fever, because every place we went was packed.

My health seems to be at a peak. I haven't felt this good in a long time! I'm breathing well, and have energy to do what I need to (though not necessarily what I want to). I'm assuming I'm finally reaching my "optimum" dosage of Flolan. It's taken a while and has been quite a battle, but I'm evidence to show that it WILL happen. Prayer has also been a great help to me.

I feel so bad for the "newbies" who are just now being diagnosed with PH. When I think of the terror that I went through in the early days, weeks and months, I suffer right along with them all over again. I just hope that they remember that this, too, shall pass. That which does not kill us will only make us stronger. I'm an example of that. A smiling happy living example who plans to still be around for a long while!

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I went out to lunch with a co-worker today and we had quite an interesting conversation. She is late-20's, married, with a 3-month-old baby. We were talking about lifestyle changes that we've both been through in the past 3 years, and it's amazing how much has changed. She went from being a swinging single career gal to a young married and is now a mom. I went from being a happily married wife and mom, to contracting a deadly disease, going through a marriage breakup and then learning how to be a single mom. It has truly been an amazing experience for both of us. Yet we both have learned so much! Her having a baby and my having PH has taught us both to cherish each moment - to not waste the opportunities that we've been given. And neither of us knew how very strong we are! In these days of womens' empowerment, it is easy to say "I am a woman and I am powerful" but it is quite another to build a whole new life for yourself and your kids and do it on your own. You never know how strong you are until you need that extra strength. That woman strength, my family's support, and God have given me the strength to live and deal with this disease, and I am using it to the best of my ability.

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I'm having meandering thoughts today, so this entry is likely to be a little disjointed. I felt good enough this weekend to go to the Mall for the first time in over a year. My son wheeled me and we had a great time. This was my first outing in a wheelchair, and it was my first experience with being "disabled". Now I have a whole lot more empathy for people who are in wheelchairs for keeps. I mean, when I got to a shop I wanted to browse, I just got up and went in. The aisles are not big enough for wheelchairs. The counters are not low enough for wheelchair-bound patrons. Everyone stares at you (especially kids). It was a very unsettling feeling, but I guess that was mainly my pride. This whole experience has made me so thankful that I can still get up and walk! I just didn't want to wear myself out. That serves no purpose.

The other thought of the day is 'animal love'. I have two cats. One is an independent beautiful calico sweetie who prefers to be outside. In fact, she gets quite nervous indoors, and cries to go back out. My other scoundrel is a gray tabby kitten of 6 months old who is a house cat. Last night he came to me looking for some cuddling, and it struck me how trusting our pets can be. He came to me, sure of his reception, knowing very well that he would get his loving. My outside cat does the same thing, responding immediately when we go outside, knowing that she will get attention. How is it that these simple creatures can be so trusting, when Man is so distrustful? Do we learn that behavior, or are we made that way?

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9-11. The day of Change. The day of terror. The day we never thought we'd ever see. Our country has been a victim of terrorism. On our own soil. This event is incomprehensible. Unbelievable. I'm speechless with the enormity of it.

In loving honor of all the victims of this senseless attack - the innocents caught up in a war not of their choosing.

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I need to work on not letting myself get mired down in negative things. I'm limiting my time at the PH sites because I don't want to make PH be the controlling thing in my life. I do get on often enough to stay current on things and people. I love this diary, and cherish the friends that I've made through it. They have helped me see that there is still life out there. Today it is beautiful outside, bright blue sky, cool, nice breeze. I should be at home out on my patio, not stuck here in this office with nothing to do but stare out the window. I watched the news of 'The Tragedy' on TV all afternoon yesterday, stunned, but now it is time to move on. I feel bad that I can't donate blood anymore, as I used to be a regular at the blood bank and my blood type is usually needed. This tragedy has shown me that as we fight our daily battles with PH, we exhibit courage every day. We are not unique simply by being 'sick', but we are survivors. We, too, are innocent victims. I guess I need to go hug a cat... :o)

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Time. What does one do with time? Especially one whose time may be limited? I know that all adages say make use of the time you have left, make sure that every minute counts, etc. But what do you do when you know you should be cleaning house, it's too hot to go outside, your family is busy, or you're on your own? I will not get addicted to the TV. I don't want to sleep all the time, although naps are wonderful. I guess I'm in a funk. I am so limited as to what I can do that I begin to lose sight of all the things that I can still do. I just have a case of the 'don't wanna's. I hope that I wake up tomorrow with an idea of something truly terrific that I can do. I mean, there's only so much internet shopping one can do!

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Bitterness. I know that the purpose of this diary is to have a forum to say the things that you feel you have to in order to deal with this disease. Well, today it is just for venting. I'm hurt, angry, scared, vengeful, and apathetic. After watching me suffer for less than a year after diagnosis and 5 months on Flolan, my husband left me last spring. He 'couldn't handle it'. He had no interest in helping to learn to mix my Flolan, he wouldn't cook or clean, but the killer was that he wouldn't help take care of my kids. No, they are not his kids, but we'd been a family for 8 years. We separated with the hope that we would reconcile. I thought that once he learned what all it took to take care of a household he would change his ways. No such luck. Since he moved out, he's been living with his mother. She cooks for him, cleans up after him, washes his clothes, etc. Whenever I have to have a test or a procedure done and I tell him about it, he changes the subject. When I have something that needs doing around he house, he says he'll come over and do it but he never does. When I have an appt. with my PH doc, he doesn't want to know what was said. So yesterday I took the big step and filed for divorce. It's hard enough to fight this disease as it is, and I know it will be harder to fight alone. My main problem, of course, is who will take care of my kids if I have a crisis? I have a supportive family, but my Mom is not healthy enough to do it, and my sisters live very far away. Right now I'm just keeping my optimism that this will not happen, but I know that eventually plans will have to be made. On the emotional side, I miss having someone to care about me. To be concerned with how I'm feeling. To hold me when I hurt, am scared, or just for support. My on-line support group is dwindling slowly - 3 deaths lately. Damn, this shouldn't be happening.

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Fall is coming! Fall is my favorite season. I love to watch the leaves turn, I love the cooler temps, I love the smell of fireplaces. I will be remodeling my home and have thought about putting in a fireplace, but I don't think that's advisable with PH. I will give it a week, until true October, then out will go my Halloween and Fall decorations. I have spiderweb lights and fall leaf arrangements for my front porch, and of course I will get some pumpkins! My son and I might do the 'haunted house' on the porch that we've been wanting to do for the last couple of years. At 11, he still does the trick-or-treating, but only on our street. Last year I couldn't go with him, this year I can!

I love the whole time period from October through December. I have always loved it, but now since I have PH, I plan to celebrate them to the most extreme. Last year I was fighting congestive heart failure during the fall, and in Nov. I had to go on Flolan, so the whole holiday season was 'off'. This year I plan to make up for it. I'm really excited about it. I guess I am different from most PHers in that they usually breathe the best in warm temps. I live on the Gulf Coast and the hot humid conditions really make it a struggle for me to breathe. When fall comes, I breathe better, can be outside more, and just generally feel better, more alive. Never will I take the changing of the season lightly! This is a cause for celebration!

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It's four o'clock in the morning and I haven't been able to sleep all night. I'm having some problems with my psychiatrist re: sleeping medication, and until she decides what to do about it, I will probably remain sleepless. I lay there thinking of a million things I still need to do, should do, should have done, letters I should write, etc. I remember reading another's diary entry where she said something about the night being the darkest time. That is when all the thoughts you don't think during the daylight hours come out to haunt you. I worry. I plan. Then I get up in the morning exhausted. Well, tonight I decided that I wasn't going to just lay there. At least I would get something accomplished. I got caught up on email, and now am putting my thoughts down for posterity. I've tried warm milk and a cookie, and sitting here with a kitty wrapped around my feet, I am getting drowsy. Guess I'll take another stab at sleep. Nighty night.

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Wow, what a wonderful week it's been! I love the 'up' times! The weather has been terrific, I'm fixing to quit work and file for disability, my health has been great, so I'm one very happy lady! My family is doing well and all are happy, so all is right in my little corner of the world. It's times like these that I really feel that normal life can be achieved. Yes, I have a catheter in my chest and carry a pump, but it's all so part of my routine that a 'normal' life is still there. I took my son to a birthday party yesterday, and I sat around and talked with the other mothers and it was all so perfectly 'everyday' that I had to smile. Who would ever think someone would wish for a 'normal life'? And what is normal? Just a state of being where life is do-able and some sort of routine can be established, I guess. In my younger days I tried everything to keep from being normal. Normal was boring and predictable. Now it's the goal. An amazing shift in perspective. Anyway, it's good and it's real, and I will take every day like this that I can get, and live it to the fullest. I'm just so happy and grateful for this 'up' time!

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I've missed writing in my diary. It's been a really busy week, tying up lose ends at work, before my last day Friday. Now I'm among the ranks of the unemployed. It sure feels great, too. I feel like the weight of the world has been lifted from my shoulders. Next week will come the disability application process, which I'm not looking forward to, but is the next step in my journey. My son and I went to Houston yesterday to see the "Cow Parade". That is where around 200 life-sized fiberglass cows are painted up in hilarious fashion and placed in random positions around the city. We came armed with map and camera, and ended up having a great time. The weather was cool and damp, and we had a great dinner, took in a horse-drawn buggy ride, and as the last cow we found was at the Houston zoo, we had to take a zoo train ride. I want to go back to see the Zoo, but that will have to wait until I get a scooter. All in all it was a great trip to the big city. I try so hard to make everything I do with my kids memorable, and when my son came to me before bedtime last night and thanked me for a wonderful day, I knew that we had another page in our memory book. That might be a wrong way to live a life, as if there were no tomorrow, but if there are lots of tomorrows, won't it be great to have so many special memories to look back on? I am happy and satisfied with that.

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I have entered a new stage in my life. Not only am I newly single, but I'm 165 lbs. thinner, am among the ranks of the newly unemployed disabled, and today I cut all my long blonde hair off. I also returned my hair to it's natural color, a medium brown. Think Catherine Bell on JAG. (I only wish I had her body!) I look so different from the way I've looked for the last 15 years. But I also feel different. I feel more ready to face the challenges ahead. My life has changed, there is no reason why I can't adapt to that change and move on with my life. Yes, it's different than I had planned but oh well...

I find it hard to make plans for the future. Yes, I'm making Christmas plans, but when it comes down to next summer, the next fall foliage tour, etc. I just can't seem to grasp that far ahead. My sister and I want to do the Fall tour through New England next fall, since we missed it this year, and I'm all for it, but I can't help but wonder if I'll still be here then. I don't mean to be morbid. I can't talk to any one else about it. I pray about it, and I know that God has a plan for me that I will follow. Of course, even healthy people will not be here a year from now. I guess the main difference is that we PHers know that death could happen at any time, while healthy people think it will never happen. Personally I'm glad that I've had a wake-up call, as my life and my affairs were really in a mess. Now I've had time to straighten them both out. And I know to cherish every moment. This is a wonderful life that we've been given and too often people go through life without appreciating the beauty around us.

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Hi Diary! This is my third try in two weeks at posting a diary entry. I really have been trying to update, and I have made some long entries, but for some reason, they are not showing up here. I don't think it's this diary, though. My computer is old and cranky, and I think it knows it's about to be replaced, so it's retaliating. :o)

Not really much new. I'm still feeling wonderful, enjoying being off of work, and still trying to do errands. I have volunteered to work at my church office one day a week, as they need someone with computer skills to help out and I don't want to lose mine. I got my test results from my last echo and they showed that my PAP has gone up from 85 to 103. I don't know why, as I increase my Flolan every two weeks, and I feel so good. I hope that at my next doctor visit in two weeks I am put on Bosentan. I've not been worrying about things. I don't think I'm being Pollyann-ish about it, it's just that I feel great and I'm going to take that good feeling and run with it for as long as I can. The monster is pushed very far back in the darkest corner of my mind, and I want it to stay there. I love my life, and I am truly happy.

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Hi Diary... Yes, I know it's been a while. I've just been so busy. I'm still trying to take care of details, and paperwork, and I'm hoping that the light at the end of the tunnel is not a train. I went for my quarterly doctor visit last Thursday, and it kind of bummed me out a little. I've been feeling so good, I guess I thought I'd hear "Hey, you're getting better!" But the reality is that my pressure is up, I'm still having to increase my Flolan every two weeks, and I'm over the cusp of halfway of the journey. I've crossed the 50 ng line, and I'm still having to increase frequently, so evidently the Flolan is not going to be a long-term fix for me. However, I am still hoping to get on Bosentan when it's on the open market (January?), and that is my goal. Plus I've finally lost enough weight to go ahead with the transplant evaluation. {{{Shudders}}}

The good news: my divorce is final, and I escaped with my self intact! Talk about a LOAD off your shoulders.... I bought a new car. I bought a five year extended warranty on it. I plan to still be here for that five years! Ha!

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Today was one of the kind of days that you live for. After reading Amy's diary tonight, I think she hit the nail on the head when she gave thanks for a 'normal' day. Today I went to the beach. It was warm, but very breezy, and the people were scarce. It's been so long since I've been to the beach that I guess I forgot the power of the sea. The waves were thundering, the gulls were crying, the sun was warm, and all together it was a perfect package. I tried to eat a taco on the seawall, but the gulls wouldn't leave me alone. The beach looked so strange being so empty. I wanted to go down to it and look for seashells, but I was afraid if I did I wouldn't be able to make it back up the stairs. I went to a souvenir shop and got some stocking stuffers for family that are not lucky enough to live by the sea. It was a very energizing experience, and I plan to go back a lot more often. I had to thank God for getting my attention. It was a wonderful present, this day.

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Ahhh...Thanksgiving...It's nice to have a special day set aside for giving thanks for the many blessings in our lives. But to me, every day is Thanksgiving. Every day that I wake up I give thanks. When I go to bed, I give thanks for the special little things that happened to me that day. I'm just so grateful to still be here. Yesterday was a great day. The red and gold leaves were swirling, there was a smell of woodsmoke in the air, and it was really a beautiful fall day. Our celebration was smaller than usual, but just as festive. We had our family dinner, then went visiting friends. I was able to see people that I haven't seen in years, and it was so nice. See, that's one of the little things that I'm so thankful for.

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Doing what you have to do....

Last weekend my son and I went to visit my sister in another city. Their town has a park with a large lighted Christmas display that you walk through on a hill called the "Walk of Lights". I wanted to go through it, as did my son, so we went. It was drizzling a little and kind of cold, but it felt so glorious to be out amongst all the beautiful light displays! The presentation was truly gorgeous, with Christmas carols playing as we strolled. My sister asked me if I could handle the stroll, since it was on the side of a hill and involved quite a bit of walking, but I looked at my son and the lights reflecting on his beautiful happy healthy face, and I looked at her and said "I WILL do it". And I did. Now I am putting the Christmas decorations on the house. It is taking me a while, as I can only do a little each day, but it will get done. I WILL do it. I am very grateful for the strength and relatively good health I'm enjoying that lets me do this. Last year's Christmas was so shot that I'm really wanting to make up for it this year!!! I'm so glad to still be alive! Although alone now without a man around to help, I'm finding reserves of strength I didn't know I had. Some might even call it mule-headed stubbornness. Ha to them!

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Hi all! The Christmas I never thought I'd see has passed, and I'm still here. The holiday itself was absolutely wonderful. The entire family showed up, gifts were excellent, and no one was drinking, hence we all got along. We had 12 at our table, and it's been so long since we were all together. I feel so much more optimistic than I did, and look forward to many more holidays together!

The Wednesday before Christmas (the 19th), I went to the hospital for my first round of transplant evaluation tests. Blood work (13 vials!), Chest xrays, CT scan of the chest, pulmonary function tests, EKG, echo, walk test, bicycle stress test. Oh, and an arterial blood draw (ouch). I was really tired after all the testing, and the next couple of days were couch days. I got the results, and the lungs are better than I thought, but the heart is starting to protest. PAP the same, cardiac output the same, some thickening of heart valves, and some enlargement. Ugh. I know I shouldn't be too hopeful, but I am really counting on the Flolan/Tracleer cocktail working for me. I'm still increasing my Flolan every two weeks, so it's not going to be a long term treatment for too much longer. I see the doc in Feb., and am hoping to be put on the Tracleer then. Hope and pray.

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Hello my PH family! I feel as if I've been gone a year. My kitchen remodeling project ended up taking on a life of it's own, which required re-wiring that entire end of my house, and my computer circuit was one of those involved. I have been computer-less for almost a month. I miss all of you!

I did a bold and daring thing the day after New Year's. My son has never seen snow, and in my dedication to cram all the living I can into the time I have left, we packed the car and headed up to Colorado in search of snow. Let me tell you, Texas is BIG, and I really didn't know how big until I had to drive all the way across it. From the coast to the panhandle, through New Mexico to Co. It was actually a great drive, just long. We got to Walsenburg, CO the day after they had just had a terrible blizzard, so we got to play in all that snow without having to worry about bad roads. It was truly an amazing adventure. I had to turn up my O2 to 3L, but other than that I did just fine. My son truly had a ball, making snowmen, snow angels, we even had a snowball fight! He climbed a mountain, rolled down a snowy one, and got a kick out of playing with big long icicles. And of course, I have to admit, we made yellow snow. Must be a Texan thing to do! ha! It was a wonderful adventure, and I thank God that he was with us and kept us safe and warm.

I went back to the hospital Jan. 9th for the second round of trans. eval. tests, and they found two lumps on my mammogram. They did an ultrasound, too, and now I am scheduled with a surgeon Feb. 5th. Dad gum it, I didn't need this, too. Please pray for me that it's just fibroidal.

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With all the good health I've been having the last couple of months, it is surely a shock when it all comes crashing down and I realize again that I have a devastating illness. I've increased my Flolan dosage, but am still SOB, my heart is beating irregularly, and my feet are starting to hurt. I don't know if it's the last couple of month's worth of playing that is just now catching up to me, or if my condition is worsening. I go see my PH doc at the end of the month, with an echo beforehand, so hopefully they can shed light on the situation. Needless to say, the anxiety level is high. Coupled with that, my breast biopsy is Monday morning. However, the sun is out, the temps are warming, and my backyard is now newly fenced with trellises and a gate for privacy. I'm looking forward to spring, flowers, sunshine, and birds.

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