Coping
Patient and Caregiver Diaries
Patient Diary -- Bailey Rains
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doc visit
Hi Diary,
I've missed writing. I just haven't had anything notable to write about. I finally went to see my PH doc about my SOB-ness. And surprise! No answers. Echo showed no structural problems, no changes, no effusions, nothing to account for my lack of air. I did increase my Flolan a second time, to no avail. Now I'm at 136 ng and still no relief. SO... to the lab. 16 vials of blood drawn. 4 pages of tests to be done. Some of them I've never heard of. I did a 6MW and for the first time since I got on Flolan 9 yrs ago, I had to stop and catch my breath. Still did 436 meters. I go back in 3 weeks to discuss tests and probably get prescribed an additional medication.
And so... I'm sitting outside the clinic Thursday, really bummed out, and called my eldest sister to talk about it. Find out she's in the hopital and guess what - she can't breathe. Her O2 saturation is down to 63%. WTF? She is placed on O2 @ 15L, given a nebulizer treatment, and started on steroids and antibiotic. She is diagnosed with chronic obstructive pulmonary disease (COPD), the same disease that killed both my grandmothers and my mother. She is in Colorado and must be brought back to TX immediately. My bro-in-law drives up there to get her. They finally made it back home this afternoon. She can hardly walk. I can't go see her because the cause of this flare up is bronchitis, which I DO NOT want to catch. Hopefully by Wednesday she'll be better and I'll feel better and I can go see her. She is to go see a specialist here in TX for further treatment during this crisis, and I've told her that she needs to be tested for PH. It's in our genes. The idea of losing her is devastating. She is my rock, my stability, my surrogate mother. She knows me like no other.
I can't ask her this, because she already knows this, but what I want to know is this: how can someone, after watching the 3 most important women in your life smother to death, continue to smoke cigarettes, even though you KNOW it will happen to you, too? And after watching my struggle for the last 9 years, how can you take your lungs for granted, knowing that our family history predisposes you to lung disease? I just don't understand. I feel like she has thrown her lungs away.
old age
No, not MY old age - my puppy dog. She is 11 human years old, and I found a calculator on-line that says for her breed (golden retriever) she is around 72 comparable human years. She and I are tight - we are going thru some of the same things with our health. She and her 'little brother' (Ben, 7 yrs old) stayed with the vet while I was down in Houston last week. He did a geriatric workup on her and thankfully most things came out ok. Blood tests anyway. She is developing arthritis in her hips (hello) and when we get up from sitting, sometimes we are a little stiff and have to stretch a little before we move well.
A major adaptation we've had to work on is her hearing. For most all purposes, she is deaf. She can no longer hear when I call her, whistle, or just plain holler. I have to be careful when waking her up, as I don't want to scare her. It's been quite an experience. She's a wonderfully smart dog (aren't they all), but she's always done well with hand gestures. I've been working with her to develop a sign language to use with her to communicate with her. She has learned it all very fast. At night I use a flashlight to work with her in the dark. The only problem I've had is calling her in at night. She buries herself under a bush outside my bedroom window while I'm in my room mixing my Flolan, and when this girl sleeps, she sleeps HARD. I turn on the bathroom light a few times to get her attention, then she comes around to the back door and they come in for the night. However, if she's sleeping hard, she doesn't see it. Usually I go get her with the flashlight, but last night it was raining, and I wasn't going to go out in it. First time she's stayed outside at night in years!
This whole experience has taught me a whole new tolerance for old-ness. I've never had a dog long enough for it to get old. And someday if I need a little push to get in the truck, I hope somebody will hoist me in. Just drive me around and I will rest my head on the windowsill and let the wind blow my ears around.
I've tried to post a pic of her, but can't figure out how to do it.
more drivel
To keep from succumbing to the overwhelming gray blanket of depression that has been poking itself at my consciousness, I've been trying to focus on anything that will distract me. To this end, I have another story. Last week it finally started to rain here in the hill country. First it rained HARD, then softly... for days. A very nourishing deep soaking. I was driving back from the ranch after checking on the horses and donks, and I took the back way home. This involves crossing a low spot on the river where the water is over the road. At this crossing live some geese (6-8). I assume someone feeds them, because they are very fat and big and healthy. Then I noticed some movement in the bushes to the side of the crossing. I watched, and out crawled..... a chicken. More correctly, a rooster. A poor soaking wet bedraggled thing that evidently the geese had been picking on, as it had no tail feathers, a couple of bald plucked patches on his back and head, and a very down-trodden spirit. Anyone who knows me knows that I love chickens, and always have some hens around my house. Well, I decided to 'rescue' it and tried to catch it. It had no energy, but it had more than I did, and would go just fast enough to get away from me. I thought about it for a minute, then went to the house and got my fish net and picked up a teenage girl that helps me with the horses, and we went chicken hunting. Of course he was no match for her and was captured within a few moments. Brought him home, tossed him in the chicken coop with the ladies and a lot of feed and scratch grains, and let him be. It took a few days for him to get over the trauma, but he's healing daily. He's eating well, following the ladies around, and while he's not as tame as they are, he's learning to come when I call out "here, chickchickchicken". Since he dried off and has been preening his feathers, it turns out he is beautiful! He's a dark red with a golden ruff around his neck, and when he grows his tail feathers out they will be a dark glossy green. I can't wait to learn how to post pics here. He has even started crowing, but it's very soft and he only does it a little. And not at dawn, but just comes out with it during the day.
In my own defense, yes, I know chickens are idiots and that most people wouldn't bother. But then I wouldn't be me if I didn't bother, would I? Taking care of chickens bring me pleasure. And takes my mind of the fact that I can barely breathe.
Enough
Dark entry, skip if so inclined. I've not been able to breathe well for 2 months now. Tests have shown no reason. Bloodwork has shown no reason. Is the Flolan not working anymore? Why haven't I been instructed to increase my dosage? Supposedly paperwork was filed to add the new medication Adcirca to my regimen. I just found out said paperwork never made it. I can't DO anything anymore. I can't lift a feed sack. I can't lift a hay bale. Just feeding the animals here at the house totally wears me out, let alone the animals out at the ranch. They're all getting skinny, even though I have a teenager feeding them.
Well, evidently last night I had had enough. I had to go to an adjacent town to buy feed cuz I slept through closing time here at the local store. Made it 15 minutes before closing. Had to get help to load the bags, unload the bags, etc. Then it hit me. I had what I guess was an emotional breakdown. I'm sitting at the gas station and I started to cry. Progressed to hard heavy sobs. Wailing. Didn't care if anybody saw or heard me. I have had enough. I can't go on like this. This is not living. I have no purpose anymore. Tired of asking for help all the time. I just can't do this anymore. I finally got my gas, and headed home, crying all the way. I drove way too fast and recklessly. I think I wanted it to be over with. I had no one to call - every body is busy with their own lives.
Well, with God's grace I made it home. I took a Xanax and a Vicodin and zoned out. This is the first time this has happened like this. It scared me. I can't tell anybody I know, but I had to say something. Thank God I have this forum.
Resolution
Happy New Year! Resolution #1 is to re-activate my diary. I quit writing when (I think) my identity became compromised. However, I need this diary. I have so much in my mind that I want to share with those who would understand. I've gone the FaceBook route and love chatting with other PHers, but I need this outlet to voice questions and concerns that I don't know how to make sense of.
Update: still no answers about not being able to breathe. Am on O2 on 10L thru facemask and 5L at night with the CPAP. I had a heart cath the week before Christmas and found that my PA pressure has gone from 85 to 113. My doc instructed me to begin titrating down on my Flolan, thinks I'm on too high a dosage. ??? Makes no sense to me, but I'll follow the program. I'm scheduled for a barrage of pulmonary tests in January - PFTs, VQ scan, and echo. My doc's office is still trying to get approval from my insurance so Adcirca can be added to my regimen. At this point, I'll try just about anything.
Holiday actions in next entry.
Reflections
As I sit here on my hillside, it is getting dark. All the leaves are gone from the trees, and where I usually sit here in my treehouse, this time of year I am bare to the world. I can see across the river to the opposite riverbank (photo was in summer), and the headlights of people coming home to their houses on the hill. It's so weird to see these lights. Earlier a herd of deer came running up the hill after getting their drink at the river and as they raced by, one of them was coal black. I'd heard of albino deer, but never a black one. She was pretty cool (had no antlers). It's the beginning of two long days of 100% chance of rain, so the birds have been busy getting prepared. Between the birds and the chickens, my feeders see a lot of business.
I promised Holiday doing reports, but now it seems old news. Suffice it to say, it was absolutely wonderful. I had a neighbor drop by today and make a comment that my son showed a great new year's fireworks display, and I had to laugh. He wasn't even here (he was at his dad's) and the lunatic out there setting off the fireworks was.... me. I actually hosted a new year's eve party, and we all trooped outside at midnight to make some noise. These fireworks were left over from last year, so I made no promises that they'd work, but they did, and beautifully! We all had our chance to play, and we ate all evening long. Ham, queso, cheese, fruit, crackers, etc. Pies. Cookies. A great way to start off the new year. Of course, the next day I woke up with a sore throat and raw lungs, the precursors of an upper respiratory infection. I tried to ride it out myself, but finally had to go to the doc and get on an antibiotic. Am on the mend now and feeling much better.
The kids have gone home. My daughter is happily moving into her new apt. in Massachusetts. Son is back at the grind in Colorado after posting a 3.2 GPA last semester. I did not leave the house for two days after they left. I was soooo tired, but happily so. Only later did I berate myself that I missed the opportunity of taking pictures of the 3 of us together. Who knows when that will happen again. Our last pic together was 4 years ago. We've all changed so much since then.
Parenthood
Here I sit on my hillside in the dark, waiting on a winter blizzard which is in the making as I sit. Been raining all day, beginning to sleet now with snow in the future. Yeah, right. I'll believe it when I see it. Even Houston's gotten snow this year.
I am grieving. My kids have been gone for 3 years now. No, they're not dead, they're just grown up and moved away. Far away. That's a good thing. I taught them to be independent. I've been trying to help them so that when I'm gone, they can do things on their own. However, in all the mom magazines and articles, they never tell you how badly it will hurt to be alone in your 'empty nest'. The memories, while wonderful, are agonizing. You can't look at anything or do anything without memories coming back to assail you. The pain is just as sharp as it ever was. Add to that one of them is currently not speaking to me, and the pain doubles. My heart actually hurts.
This too shall pass. Sometime when the sun comes back out and I can get out of here, I can leave it all behind.
Update
Hello diary. Yup, it's been 5 months since I was on last. Still hanging around, lurking, but not connecting to anyone or anything. I kinda withdrew from the world. I suffered from a terribly disabling bout of pneumonia in April that knocked my feet out from under me. 10 days in ICU with 3 IV antibiotics pulled me through, but the recovery period was very very long. I lost all my strength, and am still recovering it. My daughter came home for 2 weeks to help me recover, and to spend Mother's Day with me. I loved her visit! Then was my birthday, with which I share with two of my sister's grandkids. We had a large family party and it was pretty darn good. I went to spend a week with my son in Colorado in June and had a wonderful time! It was all too good to last. Sure enough, in mid-June, I began having heart rhythm problems. Atrial fib, premature contractions (PACs), runaways (tachycardia), the whole nine yards. I had experienced this a couple of years ago, so after 2 ER visits with electroshock conversion, it was time to go back to the cardiac electrophysiologist. I was put back on the medication Sotalol (Betapace), the same med I was put on in '08. It's working well, and I'm having weekly ECGs to monitor the process. This week I'll do my last for 6 weeks. I've been approved for pulmonary rehabilitation, and I'm (somewhat) excited about that. I go for the evaluation later this week. I want to do something, anything, to get me out of the house and build my strength back up. Hopefully it can help me shed some pounds also, as that would help in more ways than one.
I read in someone else's diary the question of "What would you do if you weren't scared?" If I weren't afraid of a Flolan malfunction I would travel. I'd love a warm sandy beach and a cool drink right about now.
patio dogs
I just read an article about controvery in Houston over dogs being allowed to sit on restaurant patios with their owners. It is against the city ordinance, and pet owners are up in arms. This subject interests me because I know Cheryl takes Teddy with her when they go out, and she's been a pathmaker on this issue for me. On the other hand, I ate on a patio last year in Austin, where there was a large white pit bull at the table next to me, watching every single bite I put in my mouth.
I sit here sometimes for many hours reading stuff from several news sources, and I find that it doesn't take much to get me riled up over things. When did I become such a know-it-all? Since when does my opinion matter? I think it's official, I think I've turned into a little old lady.
Whine & cheese
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