Coping
Patient and Caregiver Diaries
Patient Diary -- Bailey Rains
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Sunday, August 08, 2010
Of horns and spots
Of horns and spots
I had to get out of the house tonight. I’m sick of myself. I took myself and my dog Ben to PetsMart. My “old lady” dog Sunny had surgery for some tumors 2 weeks ago. She came home for a while, but she’s not healing well, so she went back to the clinic last Friday for intensive therapy, medication and superfood. Ben misses her terribly and doesn’t know what to do with himself, so I took him to get new toys & treats. I took backroads to stay out of traffic and to watch the sunset, and I was treated to a thrilling show. The whitetail deer were out en masse. They were everywhere! Tiny spotted babies to great horned bucks. I had to pull over to watch. The bucks were all in a group together, their horns still covered with velvet. They were strutting their stuff, believe me. The mamas and fawns were across the road. Some of the babies looked new – they were so tiny and their spots were so bright. I saw a pair of twins that had matching spots. Older fawns had fading spots, some to where you could barely see them. They didn’t show much fear toward the truck, so I was able to watch them for a while. Nature has been good to the wildlife this year, with more than average rain and plenty of browse. This particular group was pretty far off the beaten path, so I’d like to think that most of them will grow up and not fall victim to deer hunters. As I watched them, a beautiful sunset spread across the sky behind them. It made a wonderful mind-picture. It was good to get out of myself.
PetsMart was an adventure in itself. Ben is big, 75 lbs, and excitable, but very well behaved. A little girl wanted to pet him and he sat very gently and let her. He really wanted to lick on her, but I kept his attention and he was very good. She ended up following us all over the store. We got new treats, toys, and finch food. I wanted to see what he would do when he saw the vermin and birds, but he was fine. He watched them all, but no problems. I wanted to stay longer 'cuz he was the most animated I've seen him since S went to the clinic, but I wore out. I'm making him stay outside tonight because it's time to remind him of what his job is. He needs to keep the varmints away and keep the chickens safe. He's a good watchdog.
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Monday, August 09, 2010
missing diary entry
missing diary entry
My dairy entry 5783, 'rocked world' is not showing up. I've tried copying and pasting into a new entry but that doesn't work either. I really need some feedback on this. Cheryl, would you please check on this for me? Thanks!
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Monday, August 16, 2010
oxygen
oxygen
In response to the comments telling me that I need to be on O2 all the time, you're preaching to the choir. I dutifully wear the tube all the time. Last night I was washing my face (sans O2) and by the time I dried off, moisturized, then grabbed my oximeter, my sat was down to 81. That sucks so badly. My 20 yr old son was just here for a short visit, and he let me know that he'd prefer it if I didn't bring my bottle when we go places, but oh well, sucks to be him, I can't do without it. It embarrasses him. I only hope that he never has to know what this feels like. I wish so badly that my mom was still alive so that I could tell her, "Mom, I finally understand what it's like. Now I understand why you'd get so panicky while changing bottles, how being without the air for that short of time was so scary". I just didn't get it then. My sister refuses to use her oxygen, but then complains of being dizzy and SOB. Makes you wanna slap them.
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Thursday, August 26, 2010
Rocked world
Rocked world
I knew this was coming, but in an abstract way. Like I knew it but not really. But it's here. It's time for transplant. My Flolan is failing me. My PA pressure is back to 95. It never really did get close to normal (lowest only 65) like my doc said some people experience, especially after 10 yrs. Since there are not many 10-year Flolan patients still alive, there is no knowledge of long term effects. I am to add Letairis to my regimen effective immediately, then next Thursday I go to the Medical Center to start transplant evaluation. I was scared and bummed out about it at first, now I'm kind of excited about it. I'm so tired! Tired of struggling to breathe, to walk, to talk, to take care of things, to just go from room to room. Bone-deep tired. Imagine not having to struggle anymore. I know that transplantation brings its own set of problems, but imagine being able to walk, shop, breathe, no tubes, no concentrators, being able to travel, etc. It literally rocks my world. Of course, if I don't make it, that would be the end of that struggle also.
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Saturday, September 18, 2010
fork me, I'm done
fork me, I'm done
Back from lung transplant evaluation. A very loooong tiring scary process. I will find out whether or not I'm approved next week. Oh, and all that arrythmia I've been having? I might need a new heart, too.
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Tuesday, November 16, 2010
inside my head
In reading other people's diaries, I'm amazed at all of us who have withdrawn inside their own heads. I've been single for most of my PH journey, so the being alone is not new. Now it seems like I've evolved into a place that is not a nice place to be. I've been battling severe depression. Feeling like hell, not even able to leave the house most days. Can't travel. Can't even go grocery shopping.
Have been on Letairis a month now and no improvement. Still can't breathe and now I'm throwing up daily. Also have severe edema in my lower legs so Lasix is now a daily med. I still am one test away from being listed for TX but am having a devil of a time scheduling it. Like Helen said, it's just gotten to be so much of a fight!
Feeling sorry for myself and my peeps are probably tired of listening to it, so I thought I'd come here and vent.
inside my head
In reading other people's diaries, I'm amazed at all of us who have withdrawn inside their own heads. I've been single for most of my PH journey, so the being alone is not new. Now it seems like I've evolved into a place that is not a nice place to be. I've been battling severe depression. Feeling like hell, not even able to leave the house most days. Can't travel. Can't even go grocery shopping.
Have been on Letairis a month now and no improvement. Still can't breathe and now I'm throwing up daily. Also have severe edema in my lower legs so Lasix is now a daily med. I still am one test away from being listed for TX but am having a devil of a time scheduling it. Like Helen said, it's just gotten to be so much of a fight!
Feeling sorry for myself and my peeps are probably tired of listening to it, so I thought I'd come here and vent.
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Thursday, April 28, 2011
Ketchup
wow, has it really been 6 months? yeah, sorry. no excuses, either.
I had a great Christmas, joining my 2 kids in Massachusetts for a white christmas. We ended up getting caught in the Great Christmas Blizzard of 2010, but it didn't bother us. Only problem was when our hotel's electrical service got cut to half-power, it wasn't enough to power my concentrator, so I had to use my E-cylinders. Scary! Had a great holiday, good food and great cheer. We played in the snow and tippled our Bailey's Irish Creme (a christmas tradition of old).
Since then, I've been mired in the Great Pit of Despair. You know, that good ol' condition we call depression. I make a passable effort to appear normal to fam & friends, but when alone I sit. And sit. Nothing gets done, bills don't get paid, errands don't get run. Facebook doesn't get played with anymore.
It's been better the last few weeks. I've had 2 miniature donkey foals born, and today a clutch of baby chicks made their appearance for the first time. I wasn't going to get any more chickens, but it seems that God wants me to have chickens, because these have been hiding somewhere until today.
I'm living in the calm of the storm right now. All transplant stuff and doctor stuff has been postponed until May, so I'm just marking time until then. My daughter comes home in 2 days for a 2 week visit; next week we fly to Colorado, then on the 5th my son gradutes from college. I can't believe I'm still here to see it. An architect! This little boy who was only 10 when I was diagnosed. AND he already has a job.
After the 16th, the wheel begins to spin again and on the transplant wheel I go.
Ketchup
wow, has it really been 6 months? yeah, sorry. no excuses, either.
I had a great Christmas, joining my 2 kids in Massachusetts for a white christmas. We ended up getting caught in the Great Christmas Blizzard of 2010, but it didn't bother us. Only problem was when our hotel's electrical service got cut to half-power, it wasn't enough to power my concentrator, so I had to use my E-cylinders. Scary! Had a great holiday, good food and great cheer. We played in the snow and tippled our Bailey's Irish Creme (a christmas tradition of old).
Since then, I've been mired in the Great Pit of Despair. You know, that good ol' condition we call depression. I make a passable effort to appear normal to fam & friends, but when alone I sit. And sit. Nothing gets done, bills don't get paid, errands don't get run. Facebook doesn't get played with anymore.
It's been better the last few weeks. I've had 2 miniature donkey foals born, and today a clutch of baby chicks made their appearance for the first time. I wasn't going to get any more chickens, but it seems that God wants me to have chickens, because these have been hiding somewhere until today.
I'm living in the calm of the storm right now. All transplant stuff and doctor stuff has been postponed until May, so I'm just marking time until then. My daughter comes home in 2 days for a 2 week visit; next week we fly to Colorado, then on the 5th my son gradutes from college. I can't believe I'm still here to see it. An architect! This little boy who was only 10 when I was diagnosed. AND he already has a job.
After the 16th, the wheel begins to spin again and on the transplant wheel I go.
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Thursday, November 10, 2011
November Update
So much has happened since my last entry. I’ve been meaning to update at least a hundred times, but out of sight, out of mind.
My son’s college graduation was truly awesome! My daughter came down from Mass. for a two week visit, during which we flew to Colorado for the festivities. John’s dad and stepmother flew up with us, and she had never flown before. She was terrified, but nothing was going to stop her from going. They are so funny, and we all get along really well. While the weather in CO was still cold, graduation day was sunny, and the ceremony was held outside, so it ended up being perfect. I did well, hauling my E tanks everywhere. I was so proud.
After that trip, it was time for my transplant team checkup. Oxygen sats were up, walk test was up, all lab values were good, so it seems that the Letairis is kicking in and supplementing the Flolan well. I was basically told to ‘take the summer off’ and play, with another workup scheduled for 3 months.
I played, but with 80+ days of over 100 degree temperatures, I didn’t play much outside. It was so hot that upon opening a door, the heat took my breath away. Added to the heat, we have had no rain since February, and dry heat carries no oxygen. Since I was doing so well, I quit sucking oxygen except while I was here at home, and at night. It was a long hot summer. My beloved 13 yr old dog was diagnosed with bone cancer in her spine, which was incurable. She received a few doses of radiation to help with the pain, and pills for daily management.
In August, my world got a severe shaking up. John’s dad was killed in an auto accident. I had to tell my little boy that his daddy was gone. It was the hardest thing I’ve ever had to do. And the most painful. Despite the bad times, that man was the love of my life, and the good part of our marriage was the stuff of fairy tales. J flew down here and his lady was able to come too to help, which was a godsend to both of us. The funeral was hard and I thought of all the things that I never said to him. I was counting on him to help John handle MY death. Ironic, considering… The week after the funeral, the dog became unable to walk, so it was time to ease her suffering. The vet came to the house, and she passed with her head in my lap with me whispering into her ear. I became quite hysterical, as this was all too much too soon. Xanax to the rescue. I cried so much this month that I required a trip to the shrink. I decided to run away from home and go to Massachusetts to spend a couple of weeks with my daughter. It was great to get away.
By the time I got home, I was dragging pretty good. All the emotional turmoil along with going without O2 was not good. I was exhausted. I rested a week, then went back to the doc for my transplant checkup. NOT a good visit. Oxygen saturation in the toilet, 200 feet less on my 6MW. My case was submitted to the Transplant Committee, and in October, I received a letter stating that I had been approved for transplant, pending another visit in 3 months. A follow-up visit to my pulmonologist confirmed that I was declining, but echo and right heart cath showed that my PH was not advancing. It was a case of patient stupidity. ONCE A PATIENT IS ON OXYGEN THERAPY 24/7, THEY DON’T GET OFF IT. In my ignorance, I thought since I was feeling better that I didn’t need the O2 anymore. Wrong. Going without it all summer put a huge burden on my heart and other organs to overcompensate for oxygen deprivation. Not a good thing for a PHer.
We live and learn.
November Update
So much has happened since my last entry. I’ve been meaning to update at least a hundred times, but out of sight, out of mind.
My son’s college graduation was truly awesome! My daughter came down from Mass. for a two week visit, during which we flew to Colorado for the festivities. John’s dad and stepmother flew up with us, and she had never flown before. She was terrified, but nothing was going to stop her from going. They are so funny, and we all get along really well. While the weather in CO was still cold, graduation day was sunny, and the ceremony was held outside, so it ended up being perfect. I did well, hauling my E tanks everywhere. I was so proud.
After that trip, it was time for my transplant team checkup. Oxygen sats were up, walk test was up, all lab values were good, so it seems that the Letairis is kicking in and supplementing the Flolan well. I was basically told to ‘take the summer off’ and play, with another workup scheduled for 3 months.
I played, but with 80+ days of over 100 degree temperatures, I didn’t play much outside. It was so hot that upon opening a door, the heat took my breath away. Added to the heat, we have had no rain since February, and dry heat carries no oxygen. Since I was doing so well, I quit sucking oxygen except while I was here at home, and at night. It was a long hot summer. My beloved 13 yr old dog was diagnosed with bone cancer in her spine, which was incurable. She received a few doses of radiation to help with the pain, and pills for daily management.
In August, my world got a severe shaking up. John’s dad was killed in an auto accident. I had to tell my little boy that his daddy was gone. It was the hardest thing I’ve ever had to do. And the most painful. Despite the bad times, that man was the love of my life, and the good part of our marriage was the stuff of fairy tales. J flew down here and his lady was able to come too to help, which was a godsend to both of us. The funeral was hard and I thought of all the things that I never said to him. I was counting on him to help John handle MY death. Ironic, considering… The week after the funeral, the dog became unable to walk, so it was time to ease her suffering. The vet came to the house, and she passed with her head in my lap with me whispering into her ear. I became quite hysterical, as this was all too much too soon. Xanax to the rescue. I cried so much this month that I required a trip to the shrink. I decided to run away from home and go to Massachusetts to spend a couple of weeks with my daughter. It was great to get away.
By the time I got home, I was dragging pretty good. All the emotional turmoil along with going without O2 was not good. I was exhausted. I rested a week, then went back to the doc for my transplant checkup. NOT a good visit. Oxygen saturation in the toilet, 200 feet less on my 6MW. My case was submitted to the Transplant Committee, and in October, I received a letter stating that I had been approved for transplant, pending another visit in 3 months. A follow-up visit to my pulmonologist confirmed that I was declining, but echo and right heart cath showed that my PH was not advancing. It was a case of patient stupidity. ONCE A PATIENT IS ON OXYGEN THERAPY 24/7, THEY DON’T GET OFF IT. In my ignorance, I thought since I was feeling better that I didn’t need the O2 anymore. Wrong. Going without it all summer put a huge burden on my heart and other organs to overcompensate for oxygen deprivation. Not a good thing for a PHer.
We live and learn.
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Sunday, January 01, 2012
New Year
It's a new year. I enter it cautiously optimistic.. I'm still here, anyway. I will find out at the end of the month what my immediate future will be. Will my heart failure be reversed? Will I go on the transplant list? Will I just go on like I have been? I get so tired of never knowing; not being able to make plans.
I do have things to look forward to. My son is getting married next fall. A goal: to dance at his wedding. I just don't do well in Colorado.
My favorite/lucky number is 12, so it would be cool for me to see 12/12/12.
And, as always, I'd absolutely love to see a grandchild.
Is that so much to ask?
New Year
It's a new year. I enter it cautiously optimistic.. I'm still here, anyway. I will find out at the end of the month what my immediate future will be. Will my heart failure be reversed? Will I go on the transplant list? Will I just go on like I have been? I get so tired of never knowing; not being able to make plans.
I do have things to look forward to. My son is getting married next fall. A goal: to dance at his wedding. I just don't do well in Colorado.
My favorite/lucky number is 12, so it would be cool for me to see 12/12/12.
And, as always, I'd absolutely love to see a grandchild.
Is that so much to ask?
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Thursday, January 19, 2012
Various assorted
Just hanging around the shack soaking in the January doldrums. I thought I was to go see my PH specialist this week, but it turns out that once again I wasn't thinking clearly and my appt. is next week. It's probably a good thing, anyway. I gained some weight over the holidays and the transplant team won't be happy with that.
My current status is stable on Flolan and Letairis. My heart rate is good and steady. O2 sats are good. In Sept. my case was submitted to the transplant committee at my hospital and I was approved for listing. After a bout of heart failure in Oct., that was put on hold. As long as I have to go to the big city to see the PH doc, I hope to squeeze in a transplant check up at the same time. Would save me a trip. What am I hoping will happen? That I'm declared to be doing too well for transplant. Hey, dream big. My BNP in Nov. was 127. I want it back down to 10 like it used to be.
Donkey bidness - I have gotten rid of 6 of my miniature donkey girls, with another 2 scheduled to go to a new home this weekend. That will leave me with 5 girls, 1 boy. We had 4 babies last year, all girls (yay), but the market in playful little puffballs has bottomed out. My health has been so bad the last year, I sold all the alpacas & horses, then my goat died and I'm down to one cow and one rooster. Now that I'm feeling better, hauling hay has become fun again.
Soup seems to be the meal-of-the-month in PH land. Not only is it nutritious, it's a great way to s.p.r.e.a.d something out. Left-over chicken, mainly. I've been hungry for cornbread, too. Have mainly been on a noodle fascination. Ramen, mushroom ravioli with marsala wine sauce, vermicelli, firecracker shrimp with yakisoba noodles. Are you asking me why I've gained weight?
At least I'm not fighting depression this January. For the last 2 yrs, Jan. has been a bad month. This year, I think cuz I'm feeling so much better, I'm escaping it. I have, however, been bored. I've tried to read, but can't seem to focus on the story, or it feels like such a struggle to 'get thru it'. Reading is not supposed to be this hard. I'm also trying to crochet a throw for my daughter but my fingers and eyes are rebelling. It's hard to see black loops.
Christmas this year was totally awesome!(dude).hahaha I went to Massachusetts to visit with my daughter in her new house, and my son came out from Denver for a week, and it was truly magical. We got a dusting of snow on Christmas day, but no white christmas. We learned all kinds of new stuff about yankee housing, like heating oil (ya don't want to run your tank low), Franklin stoves, freezing water pipes and insulation. The temp was down into the teens at night, and my Reynaud's didn't like that one bit. I went out and bought a couple of electric space heaters and hit up LLBean for socks, gloves and winter undergarments (I had brought some, but I was up there for 2 wks). I've never been so cold for so long. I've never been so thankful for Texas' mild winters as I was when I came home.
So I'm all alone again. I hate that, but I'm learning. It's good to be home, and I was so happy to see the cats and my poopydog and my rooster. All is now right at my house. *smiles*
Various assorted
Just hanging around the shack soaking in the January doldrums. I thought I was to go see my PH specialist this week, but it turns out that once again I wasn't thinking clearly and my appt. is next week. It's probably a good thing, anyway. I gained some weight over the holidays and the transplant team won't be happy with that.
My current status is stable on Flolan and Letairis. My heart rate is good and steady. O2 sats are good. In Sept. my case was submitted to the transplant committee at my hospital and I was approved for listing. After a bout of heart failure in Oct., that was put on hold. As long as I have to go to the big city to see the PH doc, I hope to squeeze in a transplant check up at the same time. Would save me a trip. What am I hoping will happen? That I'm declared to be doing too well for transplant. Hey, dream big. My BNP in Nov. was 127. I want it back down to 10 like it used to be.
Donkey bidness - I have gotten rid of 6 of my miniature donkey girls, with another 2 scheduled to go to a new home this weekend. That will leave me with 5 girls, 1 boy. We had 4 babies last year, all girls (yay), but the market in playful little puffballs has bottomed out. My health has been so bad the last year, I sold all the alpacas & horses, then my goat died and I'm down to one cow and one rooster. Now that I'm feeling better, hauling hay has become fun again.
Soup seems to be the meal-of-the-month in PH land. Not only is it nutritious, it's a great way to s.p.r.e.a.d something out. Left-over chicken, mainly. I've been hungry for cornbread, too. Have mainly been on a noodle fascination. Ramen, mushroom ravioli with marsala wine sauce, vermicelli, firecracker shrimp with yakisoba noodles. Are you asking me why I've gained weight?
At least I'm not fighting depression this January. For the last 2 yrs, Jan. has been a bad month. This year, I think cuz I'm feeling so much better, I'm escaping it. I have, however, been bored. I've tried to read, but can't seem to focus on the story, or it feels like such a struggle to 'get thru it'. Reading is not supposed to be this hard. I'm also trying to crochet a throw for my daughter but my fingers and eyes are rebelling. It's hard to see black loops.
Christmas this year was totally awesome!(dude).hahaha I went to Massachusetts to visit with my daughter in her new house, and my son came out from Denver for a week, and it was truly magical. We got a dusting of snow on Christmas day, but no white christmas. We learned all kinds of new stuff about yankee housing, like heating oil (ya don't want to run your tank low), Franklin stoves, freezing water pipes and insulation. The temp was down into the teens at night, and my Reynaud's didn't like that one bit. I went out and bought a couple of electric space heaters and hit up LLBean for socks, gloves and winter undergarments (I had brought some, but I was up there for 2 wks). I've never been so cold for so long. I've never been so thankful for Texas' mild winters as I was when I came home.
So I'm all alone again. I hate that, but I'm learning. It's good to be home, and I was so happy to see the cats and my poopydog and my rooster. All is now right at my house. *smiles*
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