Daily Ponderings

Becky was a 21yr old woman who had been waiting on the transplant list for almost a year and a half. She needed a new heart as well as lungs. She had pulmonary hypertension and congenital heart disease, and was diagnosed when she was 6 years old. She was a special case, as her heart was located on the right side of her chest instead of the left, and it was backwards. It made a complicated case for the doctors, but they listed her because they thought they would be able to do the transplant whenever that time came. Becky finally got her call last night. I saw it on her sister's Facebook page, and I actually cried. I'd been praying for her for so long, and I was so happy she was finally getting her 2nd chance. Of course, I was hoping this wouldn't be a dry run for her. But when I got up this morning, I received an email from Becky's mom saying that the surgery had started at 6:15am my time. I prayed all day that the surgery would be successful and that Becky would do well...

Today I had such a busy day. I went to rehab, and after I was done, I went home briefly to change and get some lunch. I got all my things ready to spend some time out in Amherst, which is about 20 minutes or so away. It all depends on how fast I can drive up the boulevard to get there. I met a phriend for coffee at Barnes & Noble for a little while, and that time just went too fast! I had to leave in time to make it to an appt with the dermatologist I see. During the appt, I told him that I don't get the breakouts like I used to, so the antibiotic I've been on seems to be helping. However, I'm still dealing with such oily skin that it's driving me insane. He wants to put me on a topical gel, but my insurance just won't cover it. So, he gave me a whole bunch of samples. I thought that was rather nice of him! I'm hoping they'll help some! After my appt, I went to Michael's to look at the bead section. Yes, beads again! lol I was good and after having a...

A person very dear to me has had diabetes for decades, and I worry about this person when I know they aren't eating right or doing the things they should to keep themselves healthy. Last week this person found out that glucose was in a place where it shouldn't be, and I just tonight found out that when that happens a lot, the kidneys can begin to fail. I had no idea. It causes even more worry. This person told me that one of the biggest ways to keep glucose down, besides eating right, is exercise. I know this person isn't getting it. I completely understand how hard it is to just make the decision and start exercising every day, or at least several times a week. If I weren't going to pulmonary rehab, I wouldn't be working out because I just can't seem to stick to a routine at home. And so I do realize that it's hard to just start an exercising regimen, especially when you're on your own. I truly wish I could exercise with this person. Even just going for...

This past week was a bit of a rough one for me breathing-wise. Not only the weather bugged me most of the week, but I also felt rather bloated for a few days, which caused me to be so short of breath that talking on the phone or to someone was a problem. Even just laying in bed was hard. It almost felt like the days of yore when I was growing up and not on meds to treat my pulmonary hypertension. It sucked, and it gets a bit depressing. I hate when I go through periods like this. It reels me back to wondering if the PH will actually worsen like that for real one day, and not for a brief interlude. I'm doing better now, thank goodness, but the days when I was really feeling crappy were very much downers. Sometimes it's just so very hard living with this disease. I have met so many different people with PH both in the real world and the online world (funny how there are 2 separate worlds in my life now!). It's awesome when those 2 worlds collide together and you can actually ...

About a year or so ago, I got a crock pot for free from one of the survey sites I participate in. It was a rather large crock pot, but I enjoyed having it! I made lasagna, beef stew, macaroni and cheese, and a couple other things in there. Then in the spring or summer, I can't remember, Mandy's crock pot broke. She uses hers way more than I use mine, and since mine was family size, I asked her if she wanted it. She said sure, and she bought me a smaller crock pot. Since I got it, I've made a couple things I've never made before. I did beef stew again (because it's just so yummy!), but I've also made black bean soup. It turned out really good! Today I made boneless pork ribs for the first time ever. It turned out terrific! I had used a dry rub overnight on the pork first, and this morning I put the pork in the crock pot and covered it with a mixture of Jack Daniel's bbq sauce and apple cider. I had it on low for 8 hours. By the time I had dinner tonight, the...

For the past several nights, I've been hearing this noise in the house, and I couldn't quite figure out what it was. It's sort of like a rumbling noise, almost as if someone was running a sewing machine. At first I thought it was my fridge, but I kept going over to it and listening, and the sound wasn't coming from it. Tonight I opened my apartment door into the hallway and listened. Not coming from the basement. I crept up some of the stairs leading up to D's apartment. Hmmm, the sound was coming from there! Ok, so I knew the source. But what the heck was it???? She wasn't home, so I went back down to ponder and wait for her arrival so I could ask! As soon as I heard her turn the key in the door, I went back into the hallway. I asked her if she had something running upstairs, and she started apologizing. She said she had gotten 2 hamsters from someone, and they were running on a wheel. Oooooooooooooooh. Soooooo not what I was expecting to hear. But, at least I ...

On Thursday night, I was talking to a good phriend, and I had been telling her how I've run into some rather cute guys in the past week. The point I was trying to make was that I'm starting to look around again, even though I'm still not too sure how I feel about maybe trying to join the dating scene again. Part of the reason is that I still miss Euan a lot. It doesn't hurt as much as it did in the beginning when he died. In fact, usually when I think about him nowadays, it's because I heard something or remembered something that reminded me of him. Usually it makes me smile a little, or sometimes it makes me tear up a bit, but I haven't cried over him in a long time. Yesterday afternoon was a little different, though. I was in the middle of making a necklace, and I thought of Euan, and I suddenly had an overwhelming sense of panic because I realized he wasn't around to tell him anything. It was as if I was just realizing now, seven months later, that he wa...

For 69 days, 33 Chilean miners were trapped in a mine. No one knew if any of them had survived until almost 3 weeks after the mine collapsed. First predictions thought the miners may not even be out of the there until Christmas. There were 3 teams working on 3 different plans of action to get the miners out of there. People from all over the world were helping out. A small city formed by the families of the trapped miners, and they refused to leave until every single miner was freed. A few days ago, one of the plans to get the men out was finalized. Last night, rescuers were sent down in a capsule called Phoenix, and the slow beginning to freeing the men was started. More predictions thought it might take up to 36 hours. Rescue operations ended in about 24 hours, much faster than had been predicted. Everything went so smoothly, it was almost unbelievable! Last night, I watched the beginning of the rescue efforts. I finally went to bed after the third man got to the top. It was so emoti...

My life changed on October 12, 2003. That was the day I began a medicine to treat my pulmonary hypertension. I was 28 at that time. The only medicine I had been on since I was a small child was digoxin, for my heart. I continue to take that medicine, but now I am also on 2 meds to treat symptoms of PH. Tracleer was the very first one I started taking. It is a pill taken twice a day, 12 hours apart. It took a couple of months before I finally realized how much it was helping me, especially with shortness of breath. When I first realized I was not so tired going from the house to the garage, I cried. I couldn't believe it, I wasn't as short of breath as I had been growing up! Some people think it's nuts that I've remembered the day I started a pill. I don't. I remember that day because it drastically changed my life. I am so thankful for 7 years on this med, and I can only hope and pray for so many more years to come.

My upstairs neighbor kept a bird named London in the backyard. London was a racing pigeon. She originally came from London, Ontario. Her first and only race, she broke her wing. Somehow D. acquired her, and has been taking care of her for several years. London was kept in a large carrier, and D. would change the paper in the carrier, and the food and water, pretty much every day. Many times, London would wander around the yard, picking at things, but she'd usually end up back near her carrier. Several times this summer, I'd find London out back there by herself, and D. would be upstairs in her apartment for maybe 5-10 minutes before she came back down. I was a little concerned about that, because I was afraid that London might be taken by someone or would just run away (since she couldn't fly!). But, D. would come back down and London would be ok, and then put back into her little home. Today, London was attacked and killed by a roaming cat while D. was upstairs. I was in m...

I got up after hearing my phone in the kitchen this morning. I thought it was Mandy, so I sprung out of bed in mid-dream. I felt rather dazed. I didn't rush to answer the phone, but I at least got myself out of bed. After getting my contacts in and stuff, I went to the phone and found out it was Rite Aid calling me about one of my meds again. I hate the stupid reminder phone call. I don't even know how I got signed up for it! There isn't any way online that I can see to cancel it, so I guess I'll ask at the pharmacy tomorrow. Irritating! I got Mittens his breakfast, and I went to wash my face. I felt so nice and warm for once in my pjs, so I decided that today would be Pajama Day. It's not that I wasn't feeling sick or tired or anything, I honestly just didn't want to get dressed. lol Although I have places to go, I thought I'd just leave it for tomorrow. So, I had breakfast, and spent way too much time online before I finally decided to go work on a fe...

When I saw my eye doctor last month, he wanted me to see a retina specialist. The past couple of years he's been a little concerned with my eyes, especially the left one. I'm currently waiting for my sister to pick me up so I can go to my appointment. I'd lie if I said I wasn't nervous. I am hoping that it isn't as bad as my eye doc was thinking, and that'll they'll continue to keep an "eye" on it (haha). But, I really don't want anything like retina detachment to occur! That would be just horrible! I used to wonder which I would miss more, my eyesight or my hearing. I always said that I would totally be heartbroken if I could no longer listen to music. But now that I'm facing a possible eye problem, I realize just how important it is to see. Of course, I should consider myself lucky that I can see and hear pretty good, because there are so many who can't. Anyway, I'm worrying myself again! I won't know anything for sure until I...

I got to bed on Friday night and felt better about the meeting the next day, since I had pretty much gotten everything together. Saturday I woke up at 7am to take Revatio, and for whatever reason, the next 2 hours went by so slowly. I wanted to get another 2 hours of sleep, and I'm not sure I ever really did. So I finally got up at 9 and got myself ready to go. Joan picked me up at 11am so we could get the food first. Wow, they kept bringing out boxes of stuff! It all smelled sooooo delicious when we got back in the car. We headed to the hospital with no problems. Joan pulled up to the front of the hospital, and we both went in to get some wheelchairs, since it was the only way we could get the food in the room. A big shoutout goes to the security guard working on Saturday, because he had to unlock the room, and he brought one wheelchair up there for us! Yay, M!! Joan and I got the other 2 up into the room, and Joan started setting up the food while I set up my stuff. My doctor sh...

I've been on oxygen for over 8 years now. Although, when I first started wearing it full time I was very sporadic with it when I'd go out in public (wear it to the restaurant/movie theater/someone's house, etc, then take it off before going in). Over the years, and especially the last couple, I just don't care anymore if I have it on. I know I need it, and I know it's helping. So, since I wear my o2 so much now, my niece and nephew here in town have mostly seen me with it on. They tried to pull it off my face when they were babies. They've asked questions about it. I caught my nephew trying on my cannula one day (of course, I took it off to answer a phone call in another room when I was babysitting him...what did I think a curious 2yr old at the time would do??). I had a sniffing war with my niece when she was about 4 one day while I was over. She heard the puff sound from the bottle when I breathed in, so she was trying to copy it by sniffing in hard. So I wou...

I have been planning for my upcoming PH support group meeting for over a month now, but crunch time is here, since the meeting is tomorrow. Although things are almost set, I feel like I have nothing done. The food has been ordered, the guest speaker is squared away. He is my PH doctor from the Cleveland Clinic, and he will be talking about lung transplant. I have my PH bracelets all in a bag, since a few members asked me about them again. I have all the stuff for the Pucker Up 4 PH campaign, including the blue lipstick mixed with Vaseline so it'll go on lips better! I started a bag of extra stuff to bring in case of leftovers (which is ALWAYS the case). I have a list of things I need to mention during the meeting, I just need to print it out. I can't think of anything else I need to do, but I'm still stressed out about everything!! I hate that I get this way. I'm looking forward to the meeting, but it's going to go in a flash and be done before I know it. Then I...