Coping
Patient and Caregiver Diaries
Patient Diary -- Bailey Rains
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Hi, I'm Bay
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.
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?
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."
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.
Last night my son was inducted into the Boy Scouts
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....
WE've gotten so much rain!
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!
I went out to lunch with a co-worker
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.
I'm having meandering thoughts today
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?
11-Sep
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.
I need to work
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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