I have really started working out again! On Saturday David taught me the basic Swing dance pattern and w epractice for about 30-40 minutes. Whew! I used muscles I didn't even know I had . And I have to keep practicing here or I'll forget, but it was good fun.
Today I actually...wait for it... went on the treadmill . For more than 5 minutes! Wooohoo! I didn't go very fast b/c I was monitoring my HR pretty closely, but it was still good! And I did Yoga last night. So I am really coming back with the whole working out thing, which I think will help me feel better faster. I just don't want to overdo, so I will carefully monitor the stats and everything.
Monday, February 12, 2007
Strange things, mystifying...
(points if you know what the title is quoting!)
That just about sums up today's clinic appt. It was like the battle of dueling data.
First: blood. OK
Second: CXR. OK.
Third: PFTs. Um, not so much. First the NiOx, which, as we know, measures inflammation in the lungs. I am usually around 7-10. Today I was 23! So that was odd. Then PFTs--50%. They were, um 56% last week. What's going on there? The "Box" test was fine, and the DLCO (aka "Evil Cleveland Clinic test") was up. So we had two sets of sucky data and two sets of good data. Hmmmmm.
Fourth: Amakacin level blood draw. Guy got it on the first poke. He is good. :)
Fifth: Six minute walk with Whitney one of the great PT kids. She's the one who runs the Pulmonary Rehab program. My sats were fine, but my heart rate was high.
So we talk to Dr. A. He doesn't change anything. I think it may be more inflammation and we just have to deal with that. So, with these weird numbers, I was dismissed and am coming back on Tuesday. I finish the IV course on Monday (yay!) and then...Tuesday...we'll see!! Hopefully it's all good news...
That just about sums up today's clinic appt. It was like the battle of dueling data.
First: blood. OK
Second: CXR. OK.
Third: PFTs. Um, not so much. First the NiOx, which, as we know, measures inflammation in the lungs. I am usually around 7-10. Today I was 23! So that was odd. Then PFTs--50%. They were, um 56% last week. What's going on there? The "Box" test was fine, and the DLCO (aka "Evil Cleveland Clinic test") was up. So we had two sets of sucky data and two sets of good data. Hmmmmm.
Fourth: Amakacin level blood draw. Guy got it on the first poke. He is good. :)
Fifth: Six minute walk with Whitney one of the great PT kids. She's the one who runs the Pulmonary Rehab program. My sats were fine, but my heart rate was high.
So we talk to Dr. A. He doesn't change anything. I think it may be more inflammation and we just have to deal with that. So, with these weird numbers, I was dismissed and am coming back on Tuesday. I finish the IV course on Monday (yay!) and then...Tuesday...we'll see!! Hopefully it's all good news...
Sunday, February 11, 2007
kidney allocation debate
Recently, there have been changes to the way kidneys are going to be allocated. More precisely, the way people will be listed will be changed. They are going to change it from "length of time" on the list (i.e., the longer you've been waiting, the higher up you are) to how well you'll survive after the transplant.
Now I am all about this. Right before my transplant the lung allocation system was changed to be this way. That way the "sickest" patients could be priority. I was #1 on the AB+ list.
Transplant allocation is a fine line; you have to be sick enough to need one, but healthy/strong enough to survive the actual surgery and rehab. I had to go through pulmonary rehab before my transplant so that I could survive the rigorous after effects of a major surgery. Some people aren't healthy enough or didn't take good enough care of themselves before to qualify. A host of psychological, physical and social factors go into deciding who makes a good transplant candidate, because there are so few organs to go around. With every transplant, you want to make sure that you are giving to a person who will: 1) survive the operation 2) follow the very strict regimen post transplant 3) have a support system in place to help you follow this regime 4) and make sure that you can psychologically handle all the changes that will happen post transplant. Some people can't. Some people, believe it or not, have made their entire lives about being sick. It has defined them. They can't do anything else. They didn't finish high school, didn't go to college, don't have a job. Believe me, I know people like this. Or, coversly, they decided they were going to live fast since they would "die young" and have four babies by different boys, don't take care of themselves, and are on the fast track to hospice. I also know people like this. They are not good transplant candidates because they never adjusted to living a real life with their illnesses to begin with.
Some people talk about how organs sohuld go to "children or young adults". Well, OK. Or that by changing it to sickest/most likely to survive, old people won't have a chance. The thing is, medically, someone always has an edge. No one is equal. It doesn't matter how much money you have, who you are, or what you do. Medically, someone is ahead. Someone is always a better match. And in transplant medicine, you want the best match possible for the transplant to succeed. Dr. A used to talk about finding "optimal" organs for me. This is a delicate science. By putting someone who is not medically capable of handling the surgery and its after effects, you're not only putting the recipient's life in danger, but you are also, in effect, denying someone who is a better match for the organ the chance at life. You're sort of "wasting" the organ. I know that sounds callous, but it's true. 18 people die every day waiting for an organ. We need to make sure that the best candidates are getting them. Yes I can say that because I got mine. But still, it's true.
So many people are ignorant of this aspect of transplantation. They still think it's about money, or status, or prestige. The only "status" that matters is your medical status: blood type, tissue type, height, weight, and various other factors depending on the particular organ. It's not about the money. It's about the person who is medically right for the organ.
Now I am all about this. Right before my transplant the lung allocation system was changed to be this way. That way the "sickest" patients could be priority. I was #1 on the AB+ list.
Transplant allocation is a fine line; you have to be sick enough to need one, but healthy/strong enough to survive the actual surgery and rehab. I had to go through pulmonary rehab before my transplant so that I could survive the rigorous after effects of a major surgery. Some people aren't healthy enough or didn't take good enough care of themselves before to qualify. A host of psychological, physical and social factors go into deciding who makes a good transplant candidate, because there are so few organs to go around. With every transplant, you want to make sure that you are giving to a person who will: 1) survive the operation 2) follow the very strict regimen post transplant 3) have a support system in place to help you follow this regime 4) and make sure that you can psychologically handle all the changes that will happen post transplant. Some people can't. Some people, believe it or not, have made their entire lives about being sick. It has defined them. They can't do anything else. They didn't finish high school, didn't go to college, don't have a job. Believe me, I know people like this. Or, coversly, they decided they were going to live fast since they would "die young" and have four babies by different boys, don't take care of themselves, and are on the fast track to hospice. I also know people like this. They are not good transplant candidates because they never adjusted to living a real life with their illnesses to begin with.
Some people talk about how organs sohuld go to "children or young adults". Well, OK. Or that by changing it to sickest/most likely to survive, old people won't have a chance. The thing is, medically, someone always has an edge. No one is equal. It doesn't matter how much money you have, who you are, or what you do. Medically, someone is ahead. Someone is always a better match. And in transplant medicine, you want the best match possible for the transplant to succeed. Dr. A used to talk about finding "optimal" organs for me. This is a delicate science. By putting someone who is not medically capable of handling the surgery and its after effects, you're not only putting the recipient's life in danger, but you are also, in effect, denying someone who is a better match for the organ the chance at life. You're sort of "wasting" the organ. I know that sounds callous, but it's true. 18 people die every day waiting for an organ. We need to make sure that the best candidates are getting them. Yes I can say that because I got mine. But still, it's true.
So many people are ignorant of this aspect of transplantation. They still think it's about money, or status, or prestige. The only "status" that matters is your medical status: blood type, tissue type, height, weight, and various other factors depending on the particular organ. It's not about the money. It's about the person who is medically right for the organ.
Tomorrow...
Yet another Dr. A appointment, because it's Monday! 7:30 blood, CXR, PFTs, the whole alphabet soup shebang. Hopefully it will all go well. I will let you know how it goes! Weekend went well, had a Valentine's Day dinner with David at Scali's and it was fantastic. :)
More tomorrow...
More tomorrow...
Tuesday, February 06, 2007
Perfect sentiments
This post from Cathy Siepp is so indicative of a lot of my personal experience that I'm just going to post the whole thing. Comments after...
Me again: Oh, the part about washing the hair is so true. If you've read this blog for awhile you know how much the Washing of the Hair can turn into a Wagnerian Drama with all sorts of sturm un drang . Even with short hair, sometimes it is so just not worth it. I hate my hair very often when doing IVs and to have someone who would actually do it voluntarily, like Rita and some of the hospital nurses, were great (even if I was sooo tired I didn't want to).
And about being boring, that is true too. There is often a lot you can't do, other than sit there and have people talk to you, or watch movies. People that will just come over and talk, or bring food YOU LIKE, are great. They make you feel like you are still a person. After I was in the ICU in 2001, our church buddies got together an entire Thanksgiving dinner. It was amazing, and we never would've thought about it otherwise, because we certainly were not traveling to Pittsburgh that year and we didn't think it would be a good idea for people to come to us.
I know it can be a fine line. But, as Cathy illustrates, sometimes it is much easier to do the little things that "normal" people think are so inconsequential and easy that they don't count. They most certainly do!
I'm afraid I had a little melt-down yesterday when I discovered that a friend had delivered not only the brisket she said she would, but also a giant pot of soup, which she'd made Maia transfer to one of my pots and put downstairs in my dad's fridge while I was lying down. So this, of course, meant a lot more work for everyone around here: Getting poor Emmanuelle to wash out the pot (which I could no longer use until it was cleaned), and divide the soup into small freezable containers, while I sat there and wondered why-why-why?
This friend is not a dolt, but one who I'd complained to many times about other people who bring stuff that won't fit in my fridge. And she was sympathetic. But I guess she figured it didn't apply to her.
Why don't they just listen?
Besides which, there's something kind of insulting about the expectation that I should eat the same giant pot of whatever all week, like dog chow, and be grateful. I guess people want the credit for cooking, if they like to cook, but they don't want to really bother cleaning or dividing or really making any effort to make it easier for the recipient.
It actually looked like pretty good soup too, otherwise I would have just asked Emmanuelle to pour the whole thing into the sink.
Now I'm trying to fend off someone who wants to drop off a giant pot of chili, "with all the fixings." I explained about the small containers, rather than a giant pot, but doubt the message will get through. If it doesn't, my new rule is anything that arrives here in a giant pot goes right back into the kindly charity-giver's car without ever entering my house.
I just can't take all the extra work and stress, which no one seems to want to hear. They think I look "great!" They can't believe I'm not really as festive and energetic as I used to be. Maybe they assume if they shove some music into the CD player here and turn what really should be a low-key visiting event into a cocktail party that will make everything fine. It doesn't.
Probably I should be firmer, but I don't want people to avoid me because I've become so horribly boring. What on earth is going on? Is all this really that difficult a concept?
Anyway, there are many people who do understand and really are so relaxing. Debbie helped me wash my hair in the sink this weekend and took Maia and I out for a little lunch at a local cafe. Emmanuelle got a flat tire on our way back from the dr yesterday but fortunately took care of it via Triple AAA without really any trouble. We arrived at Jerry's Deli for a milkshake and conveniently sat there while looking through the window for the truck to arrive at her parked car; it only took 20 minutes, thank God. Many other people are just considerately quiet and low-key and helpful, and understand when I say "no plus-ones" for these visits. And of course, the most important thing of all is just offering to help, and really being available to do so.
Me again: Oh, the part about washing the hair is so true. If you've read this blog for awhile you know how much the Washing of the Hair can turn into a Wagnerian Drama with all sorts of sturm un drang . Even with short hair, sometimes it is so just not worth it. I hate my hair very often when doing IVs and to have someone who would actually do it voluntarily, like Rita and some of the hospital nurses, were great (even if I was sooo tired I didn't want to).
And about being boring, that is true too. There is often a lot you can't do, other than sit there and have people talk to you, or watch movies. People that will just come over and talk, or bring food YOU LIKE, are great. They make you feel like you are still a person. After I was in the ICU in 2001, our church buddies got together an entire Thanksgiving dinner. It was amazing, and we never would've thought about it otherwise, because we certainly were not traveling to Pittsburgh that year and we didn't think it would be a good idea for people to come to us.
I know it can be a fine line. But, as Cathy illustrates, sometimes it is much easier to do the little things that "normal" people think are so inconsequential and easy that they don't count. They most certainly do!
Monday, February 05, 2007
"I rule!"
I sure do, kids, because I actually had a good appointment today! Yay!
I didn't know for sure how things would be, so I was happy when they were good! blood work-good. CXR--good, shows good clearing in the lower lobes where the infection was (is?). PFTs-- 56%! Up five points from last week and only about 3 points off from my all time high back in November, right before I got sick. Woohoo! DLCO was good, and the Niox (which measures inflammation) was down from about 9 something to 7.5, which is good. Dr. A and Julie also heard many fewer crackles in the bases, which means stuff isclearing. My cough is a lot better, as is the nose, and my heart rate/ sats are finally better, so I guess that means no more excuses in the exercise department.
The plan is to do the IV drugs for another two weeks, then see where we are. My next appointment is next Monday at 7:30--woohoo! Hopefully things will continue to go well and I will finally kick this bug. Even though the port drugs are driving me nuts, I am glad they are doing the trick. We also raised the CellCept to 1000 mg and moved the tac back down to 1 mg AM and PM. So more changes to remember, but it's all good.
Now I"m going to make syringes for the next three IV infusions. Oh the joy!
I didn't know for sure how things would be, so I was happy when they were good! blood work-good. CXR--good, shows good clearing in the lower lobes where the infection was (is?). PFTs-- 56%! Up five points from last week and only about 3 points off from my all time high back in November, right before I got sick. Woohoo! DLCO was good, and the Niox (which measures inflammation) was down from about 9 something to 7.5, which is good. Dr. A and Julie also heard many fewer crackles in the bases, which means stuff isclearing. My cough is a lot better, as is the nose, and my heart rate/ sats are finally better, so I guess that means no more excuses in the exercise department.
The plan is to do the IV drugs for another two weeks, then see where we are. My next appointment is next Monday at 7:30--woohoo! Hopefully things will continue to go well and I will finally kick this bug. Even though the port drugs are driving me nuts, I am glad they are doing the trick. We also raised the CellCept to 1000 mg and moved the tac back down to 1 mg AM and PM. So more changes to remember, but it's all good.
Now I"m going to make syringes for the next three IV infusions. Oh the joy!
Yeah I've been there.
This
USA Today article is definitely something I can relate to. I have a list of drugs in a notebook I always carry, a port ID card in my wallet, and my friends know all sorts of info in case we're ever in an accident and I can't talk. Sometimes I think I'd go for the whole implanted device with my medical history...
USA Today article is definitely something I can relate to. I have a list of drugs in a notebook I always carry, a port ID card in my wallet, and my friends know all sorts of info in case we're ever in an accident and I can't talk. Sometimes I think I'd go for the whole implanted device with my medical history...
Sunday, February 04, 2007
OK I have to...
be a real geek and finish the Macbeth quote. I swear on my Catholic honor that I am not cheating.
She should've died hereafter
There would have been a time for such a word.
Tomorrow, and tomorrow, and tomorrow
Creeps in its petty pace from day to day
Until the last syllable of recorded time
And all our yesterdays have lighted fools the way to dusky death.
Out, out, brief candle!
Life's like a walking shadow
A poor player who struts and frets his hour upon the stage
And then is heard no more.
It is tale, told by an idiot,
Full of sound and fury,
Signifying nothing.
(V.II.)
She should've died hereafter
There would have been a time for such a word.
Tomorrow, and tomorrow, and tomorrow
Creeps in its petty pace from day to day
Until the last syllable of recorded time
And all our yesterdays have lighted fools the way to dusky death.
Out, out, brief candle!
Life's like a walking shadow
A poor player who struts and frets his hour upon the stage
And then is heard no more.
It is tale, told by an idiot,
Full of sound and fury,
Signifying nothing.
(V.II.)
Tomorrow
"And tomorrow/ and tomorrow" --Macbeth
"I love ya, tomorrow/ You're only / a day away!" --Annie
"I'll think about that tomorrow."
"After all, tomorrow is another day!" --Gone with the Wind
OK, so there are some quotes for your edification. :) But really, tomorrow, I have another appointment with Dr. A (how about "I've Grown Accustomed To Your Face / It almost makes the day begin..." ?) at 7:30. Woohoo! So I will, of course, let you know what is up.
And hopefully this quote obsession will have stopped by then. :)
"I love ya, tomorrow/ You're only / a day away!" --Annie
"I'll think about that tomorrow."
"After all, tomorrow is another day!" --Gone with the Wind
OK, so there are some quotes for your edification. :) But really, tomorrow, I have another appointment with Dr. A (how about "I've Grown Accustomed To Your Face / It almost makes the day begin..." ?) at 7:30. Woohoo! So I will, of course, let you know what is up.
And hopefully this quote obsession will have stopped by then. :)
You know you're abnormal...
when you're watching the Super Bowl and you're putting together saline and heparin syringes for the next three IV infusions at the same time. And the scary thing is, you really don't even have to think about what you're doing.
Saturday, February 03, 2007
Pictures
Yes, OK, I have been very, very remiss on the pictures from Christmas, as of late. So here are a few, for those who care:
1. Me and my adorable 9-year old godson, Ryan
2. Some of the huge family: L-R: My Aunt Patty (Ryan's Mom, one of my mom's younger sisters); my cousin Diane; her dad, my Uncle John (my mom's oldest brother); my grandma, and me.
3. Cutest kids: my youngest cousins (they're also siblings) Brendan and Paige (who just turned 6 at the end of January).
4. Diane and her fiance (well, he wasn't then), Matt, at Smith and Wollensky's, a steakhouse near our hotel with awesome food and tremendous banana splits. Mmmm.
Dos and Dont's in a hospital
Courtesy of Cathy's World,hereis a helpful list of things to do/not to do when visiting someone in the hospital:
I totally agree on the phone calls, especially since half the time there are people in the room and you can't talk anyway. Or you start to talk, and people come in, and you have to cut them off. If I ever cut you off in the hospital, it's because Big Important People have arrived and they have Vital Information, or some flunky from transport has come to take me away. In the second case I'd rather talk to you, but I have no choice. So don't be offended. Also, if I've just been drugged, there is no way in Hades I am answering the phone. None. Unless you're God, and even then, I won't know you're God, so...
Also, bringing magazines is good. I love my books, but magazines in a hospital are generally easier to handle. As is chocolate, or chips. But ask before you bring food because some drugs really screw up your taste buds.
Don't freak out over every little beep or hiss or whatever. Most likely the patient (AKA, me) is used to it and will hit the appropriate button to get the machine to shut up. Don't freak out going "oh my gosh ?! What is that?! Are you going to die?!" Trust me, if I was in eminent danger of death, the beeping would be a lot louder and I'd probably be several shades of blue...
1. I always unplug the hospital phone as soon as I get there and use my cel phone instead, thus avoiding a ringing phone intended for the checked-out (or dead?) person in the room before you.
2. When in doubt -- that is, you are not really a close friend of the sick person -- email really is better than a phone call. I feel bad at having to turn away callers who only mean well, but I'm often trying to sleep and sometimes, when not quite awake and fumbling around, make the mistake of picking up the phone when I really shouldn't. And then I have to explain that, sorry, but I'm really not up for chatting, etc.
3. Not a suggestion, but a query: Why do visiting nurses seem so much LESS competent than hospital nurses? I'm not that only person who's noticed this, and it's disturbing, because you're really at their mercy. The nurses I ask say the visiting nurses get paid just as much, and really have to be even better since they're working not under a dr's direct supervision, so it's a mystery what the problem is. At this point, I'm having my dr's office nurses change my dressings for me, because the visiting nurse they've sent so far just doesn't inspire a lot of confidence.
I totally agree on the phone calls, especially since half the time there are people in the room and you can't talk anyway. Or you start to talk, and people come in, and you have to cut them off. If I ever cut you off in the hospital, it's because Big Important People have arrived and they have Vital Information, or some flunky from transport has come to take me away. In the second case I'd rather talk to you, but I have no choice. So don't be offended. Also, if I've just been drugged, there is no way in Hades I am answering the phone. None. Unless you're God, and even then, I won't know you're God, so...
Also, bringing magazines is good. I love my books, but magazines in a hospital are generally easier to handle. As is chocolate, or chips. But ask before you bring food because some drugs really screw up your taste buds.
Don't freak out over every little beep or hiss or whatever. Most likely the patient (AKA, me) is used to it and will hit the appropriate button to get the machine to shut up. Don't freak out going "oh my gosh ?! What is that?! Are you going to die?!" Trust me, if I was in eminent danger of death, the beeping would be a lot louder and I'd probably be several shades of blue...
Thursday, February 01, 2007
Day In the Life...
From http://www2.blogger.com/img/gl.link.gifNutmeg:
My day yesterday: (Wednesday)
6:05: Alarm goes off for meropenum dosage.
6:15: Back to bed
7:25: Alarm goes off
7:35: I actually get up
8:00: Leave the house.
8:01: Realize must scrape car.
8:05: On road, where people cannot drive in light snow.
8:45: Arrive at work.
9:00: Find, much to my surprise, that clips are done!
9:30-12:45: Work on press releases, clip work, etc.
12:45: Leave for Children's
1:00: Arrive in Infusion Clinic
1:20: Change port site, give amakacin and meropenum doses
1:40: SoluMedrol arrives, start infusion
2:20: Nap time
3:15: done with infusion
3:45: Go to pick up glasses at Dr. Tracy's--new Kate Spades!
4:00: home, Bible, mail.
5:00 Time for dinner--Golden Grahams!
5:30-6:00: Some Fly Lady cleaning
6:00-6:30: run music for rehearsal
6:30: Leave for choir
6:40: arrive at church
7:10: run responsorial psalm for Sunday
7:30: Rehearsal begins
8:40: Rehersal ends--sang great stuff!
8:50: Home, bath.
9:00: More reading, cleaning, blog checking. :) Insulin, CellCept
9:30: parents over to deposit drugs
9:50: parents leave
10:00: Meropenum dosage
10:25: bedtime, read more of Masque of the Black Tulip
My day yesterday: (Wednesday)
6:05: Alarm goes off for meropenum dosage.
6:15: Back to bed
7:25: Alarm goes off
7:35: I actually get up
8:00: Leave the house.
8:01: Realize must scrape car.
8:05: On road, where people cannot drive in light snow.
8:45: Arrive at work.
9:00: Find, much to my surprise, that clips are done!
9:30-12:45: Work on press releases, clip work, etc.
12:45: Leave for Children's
1:00: Arrive in Infusion Clinic
1:20: Change port site, give amakacin and meropenum doses
1:40: SoluMedrol arrives, start infusion
2:20: Nap time
3:15: done with infusion
3:45: Go to pick up glasses at Dr. Tracy's--new Kate Spades!
4:00: home, Bible, mail.
5:00 Time for dinner--Golden Grahams!
5:30-6:00: Some Fly Lady cleaning
6:00-6:30: run music for rehearsal
6:30: Leave for choir
6:40: arrive at church
7:10: run responsorial psalm for Sunday
7:30: Rehearsal begins
8:40: Rehersal ends--sang great stuff!
8:50: Home, bath.
9:00: More reading, cleaning, blog checking. :) Insulin, CellCept
9:30: parents over to deposit drugs
9:50: parents leave
10:00: Meropenum dosage
10:25: bedtime, read more of Masque of the Black Tulip
Steroid letdown
Well I had my last infusion yesterday, and today actually went pretty well. I did almost a full day of work, getting to the office around 8:20, doing clips, a column, and some press releases for Controlling Board items to be released on Monday. But when I got home around 4:00, I was beat. Sooo tired, I didn't even get to baby-sit, and I think I let the crock-pot meal I was making go a little long. That's the thing I hate about steroids. You feel OK and then you get hit with the side effects and you become so tired. So I'm going over to my parents' house tonight to sleep, probably won't go to work tomorrow, and I have another amakacin blood level tomorrow at 1:00, to make sure my kidneys are hanging in there. Oh the joy! The last two venipunctures have left nice brtuises, one about 1" and another about 2 1/2", on my left arm, so they are a beautiful eggplant color. Really adds a nice touch to the ivory skin tone I've got going on, you know?
Hopefully I will be OK to go by the weekend, since I want to go shopping w/ Richelle for some new things for the apartments--pillows and blankets, especially, since we are apparently heading for a deep freeze!!! Brrr!! Thank goodness I get paid tomorrow. I am so ready for spring it isn't even funny...and I am ready to kick this bug! But other than being tired I don't feel too bad. The chest pain is getting better so that's a good thing, and my nose is clearing up a little. So these are happy things. :)
More tomorrow....
Hopefully I will be OK to go by the weekend, since I want to go shopping w/ Richelle for some new things for the apartments--pillows and blankets, especially, since we are apparently heading for a deep freeze!!! Brrr!! Thank goodness I get paid tomorrow. I am so ready for spring it isn't even funny...and I am ready to kick this bug! But other than being tired I don't feel too bad. The chest pain is getting better so that's a good thing, and my nose is clearing up a little. So these are happy things. :)
More tomorrow....
Wednesday, January 31, 2007
Last infusion! (for now...)
So today marked Day 3 of the Steroid infusion, which went pretty well. The last two days I have taken to napping, which is quite nice. :) Today I was running a little fever, about 99.1, but that's OK. We only worry about fevers if they're over 101. So that was OK. And, I gotta say, with it being like 20 degrees, I wasn't going to complain about part of my body being warm!
Actually got a real amount of sleep last night! I had to wake up at 6 to do my meropenum, but that wasn't bad, since I went back to bed until about 7:15, which was nice. It's nice to wake up when the sun is actually present. We changed the IV schedule to 6, 2, and 10, which isn't bad except for the 2 p.m. one which I'll have to do at work. Oh well. I'm sure I can find some place to do it...I hope!!
Not feeling too bad...a little tired and some headache action, but I think I'll be able to make it to choir tonight. And if I feel bad, then I'll just leave early. No problems with the CellCept so far (huzzah!). So overall, not feeling too bad. Still kind of short of breath, but I'm sure that after a few days more of drugs we should be able to kick that. I hope. I see Dr. A again on Monday at the lovely hour of 7:30, so at least I get a Children's break until next week. Yay!!!
Actually got a real amount of sleep last night! I had to wake up at 6 to do my meropenum, but that wasn't bad, since I went back to bed until about 7:15, which was nice. It's nice to wake up when the sun is actually present. We changed the IV schedule to 6, 2, and 10, which isn't bad except for the 2 p.m. one which I'll have to do at work. Oh well. I'm sure I can find some place to do it...I hope!!
Not feeling too bad...a little tired and some headache action, but I think I'll be able to make it to choir tonight. And if I feel bad, then I'll just leave early. No problems with the CellCept so far (huzzah!). So overall, not feeling too bad. Still kind of short of breath, but I'm sure that after a few days more of drugs we should be able to kick that. I hope. I see Dr. A again on Monday at the lovely hour of 7:30, so at least I get a Children's break until next week. Yay!!!
Tuesday, January 30, 2007
Day 2: Infusion
Well, last night was not high-quality fun. I believe I got about 3 hours of real sleep, having gone to bed at 10:15 and waking up at 7:30. Yay, lots of fun. The sleep actually came around 4:45, so some productive night.
Blood level at 8:45, then I actually got to work today! Got almost my entire to-do list done, and will get to work tomorrow. Huzzah! Then went to infusion at 12:45 to get amakacin and SoluMedrol. Julie stopped by and we are stopping the levoquin since it doesn't show up on any of the sensitivities. One more drug off the chart...yay! I did manage to take a cat nap during infusion, which was helpful.
So cold here, which is not helping my mood! But at least things are looking a little better. Hopefully I can get some sleep tonight. the only real bugger is washing my hair, as usual, even though it's a lot easier now that it's short.
Another change: this is the first IV course I'm administring entirely solo. My parents are mixing the drugs but I am pushing them and making sure they get done. Pretty cool, eh?? :) I am actually kind of proud of this.
Blood level at 8:45, then I actually got to work today! Got almost my entire to-do list done, and will get to work tomorrow. Huzzah! Then went to infusion at 12:45 to get amakacin and SoluMedrol. Julie stopped by and we are stopping the levoquin since it doesn't show up on any of the sensitivities. One more drug off the chart...yay! I did manage to take a cat nap during infusion, which was helpful.
So cold here, which is not helping my mood! But at least things are looking a little better. Hopefully I can get some sleep tonight. the only real bugger is washing my hair, as usual, even though it's a lot easier now that it's short.
Another change: this is the first IV course I'm administring entirely solo. My parents are mixing the drugs but I am pushing them and making sure they get done. Pretty cool, eh?? :) I am actually kind of proud of this.
Monday, January 29, 2007
I'm going to pitch a tent
Seriously. In the lobby of Children's, and just live there until all this craziness is resolved!! (warning: possible ranting ahead)
So I go to Children's today, per usual, hoping, hoping, hoping that I'll actually get to work. Blood draw at 8:00 in infusion, where I find out that I've been scheduled (tentatively) for a steroid infusion at noon. The steroid infusion I was not supposed to have. But whatever. I figure I'll wait and see what Dr. A says. Then CXR,as usual, looking about the same. PFTs, the same was last week, except the DLCO numbers were better, I believe. They kind of tanked last time, so at least they're better. Weight, the same. BP still a little high, heart rate OK, SATs like 96.
I see Julie, and we go over meds, talk about my symptoms, which are the same as Thursday minus the hand swelling. Dr. A comes in, and we talk. Here's the deal:
--the culture didn't grow any fungus so we can stop the aerosol med. YAY!
--We are also changing the Imuran to CellCept, another immuno-suppressant that is taken twice a day, an hour after the tac/prograf (so 9 am for me) to avoid stomach issues (which, as we all know, are something I like to avoid as much as possible). I start that drug tomorrow.
--We are doing 3 days of steroids because there was a lot of inflammation. So MTW in infusion at 1:00 (well earlier today but 1:00 every other day). Oh the joy. But I'm not taking prednisone while doing this, so maybe that will help.
--I am starting IV antibiotics--Again. This time it's the meropenum (oh the joy!) and amakacin, which involved a blood draw at 5;45 TONIGHT and another at 8:45 tomorrow morning to check drug levels so we don't screw up my kidneys. 'Cause you know, I don't need more screwed up organs. This will be at least a two week course, with the first drug being every 8 hours (Q8) and the latter being every 12 (Q12). So the joy. And I get to do them by myself mostly, so I don't have to live at home and can GO TO WORK. Because I am trying to have a life and a job, y'know. Minor consideration. GRRRR.
So I go to infusion, get the first doses of the IV drugs and the SoluMedrol (steroid). I'm there until about 2:00, go home and sleep until about 4:45, then trek out to Children's Urgent Care on Broad St. for a blood draw. I'm there 30 minutes for what should take 2. Fortunately the nurse who drew my blood (veinipuncture, of course, we can't just do the finger stick) was magic and got me on the first stab. That never happens, as we know. I finally ate dinner around 7. So, needless to say, it was a crazy day. And tomorrow, at least, I get to sleep in, get the blood draw, work for a few precious hours and then get more steroids. What fun.
Hopefully all of this will do the trick because I'm tired of all this crap!!!! Wow OK that was a lot of ranting. Sorry :) But it was a long day. And it's still not over because I have to give drugs later. Sigh. Oh well.
So that's the news from here...hopefully tomorrow's infusion will go OK.
So I go to Children's today, per usual, hoping, hoping, hoping that I'll actually get to work. Blood draw at 8:00 in infusion, where I find out that I've been scheduled (tentatively) for a steroid infusion at noon. The steroid infusion I was not supposed to have. But whatever. I figure I'll wait and see what Dr. A says. Then CXR,as usual, looking about the same. PFTs, the same was last week, except the DLCO numbers were better, I believe. They kind of tanked last time, so at least they're better. Weight, the same. BP still a little high, heart rate OK, SATs like 96.
I see Julie, and we go over meds, talk about my symptoms, which are the same as Thursday minus the hand swelling. Dr. A comes in, and we talk. Here's the deal:
--the culture didn't grow any fungus so we can stop the aerosol med. YAY!
--We are also changing the Imuran to CellCept, another immuno-suppressant that is taken twice a day, an hour after the tac/prograf (so 9 am for me) to avoid stomach issues (which, as we all know, are something I like to avoid as much as possible). I start that drug tomorrow.
--We are doing 3 days of steroids because there was a lot of inflammation. So MTW in infusion at 1:00 (well earlier today but 1:00 every other day). Oh the joy. But I'm not taking prednisone while doing this, so maybe that will help.
--I am starting IV antibiotics--Again. This time it's the meropenum (oh the joy!) and amakacin, which involved a blood draw at 5;45 TONIGHT and another at 8:45 tomorrow morning to check drug levels so we don't screw up my kidneys. 'Cause you know, I don't need more screwed up organs. This will be at least a two week course, with the first drug being every 8 hours (Q8) and the latter being every 12 (Q12). So the joy. And I get to do them by myself mostly, so I don't have to live at home and can GO TO WORK. Because I am trying to have a life and a job, y'know. Minor consideration. GRRRR.
So I go to infusion, get the first doses of the IV drugs and the SoluMedrol (steroid). I'm there until about 2:00, go home and sleep until about 4:45, then trek out to Children's Urgent Care on Broad St. for a blood draw. I'm there 30 minutes for what should take 2. Fortunately the nurse who drew my blood (veinipuncture, of course, we can't just do the finger stick) was magic and got me on the first stab. That never happens, as we know. I finally ate dinner around 7. So, needless to say, it was a crazy day. And tomorrow, at least, I get to sleep in, get the blood draw, work for a few precious hours and then get more steroids. What fun.
Hopefully all of this will do the trick because I'm tired of all this crap!!!! Wow OK that was a lot of ranting. Sorry :) But it was a long day. And it's still not over because I have to give drugs later. Sigh. Oh well.
So that's the news from here...hopefully tomorrow's infusion will go OK.
Sunday, January 28, 2007
Too young
I was reading another blog post today where someone wrote that a person who, at 59, had just died, had "died too young." Comments like this bug me, because to me, 59 is pretty good. You're one year shy of sixty, six years out from retirement. You've had almost 6 decades on earth to study, marry (or not), live your life, and enjoy it (hopefully, if you have the mind to). Fifty-nine's not young. Six is, or 14, 17, 25, or even 30. Babies dying is "dying too young." But 59? That to me is kind of pushing it. I know this is the era where everyone expects to live to be 80+, and, believe me, if my parents, who are both 50, died tomorrow, I would be upset beyond belief. But I wouldn't say they "died too young." I would mourn the fact that they didn't see Mel graduate from high school, or Bryan from college, and never saw us get married or know their grandchildren. Those things are sad, and things they should have enjoyed, under the 'normal' scheme of life. But "too young"?
I know this might come off as insensitive, but it's just the way I feel. Of course, I'm biased. When I was younger I thought 30 would be pretty good. Now that that's only, um, about 5 years off, not so much. But it's another reason to live every day to the fullest and not get bogged down in the stupid things ( soo much easier said than done, I know. Right now I feel like I'm bogged down in nothing but stupid things). Thought I'd share...
I know this might come off as insensitive, but it's just the way I feel. Of course, I'm biased. When I was younger I thought 30 would be pretty good. Now that that's only, um, about 5 years off, not so much. But it's another reason to live every day to the fullest and not get bogged down in the stupid things ( soo much easier said than done, I know. Right now I feel like I'm bogged down in nothing but stupid things). Thought I'd share...
Listening
This post from The Anchoressreally struck a chord with me, so I thought I'd share my thoughts on it here. In a strange coincidence, I will be posting this on both this blog and my Catholic Girl blog, since they have to do with both health and faith, two things very close to me.
The Anchoress talks about the day her doctor told her she was losing her hearing due to Lyme Disease. Well, having lost a good deal of my hearing due to drugs pre-tx, I can relate to her feelings of shock and dismay. And even anger. Both her sons are musicians. I am a musician. Of all the things that had been taken from me, this was the one that really hit home. I mean, it was what I did. I was a singer. I had been trained in classical singing. Music was the thing for me. In college, I really developed and ear and was coming up with good relative pitch (OK, not as good as Tiff, who has perfect pitch, but we can't all be perfect). We first noticed (well, my friends noticed) in my later years at college that I wouldn't hear them when they asked me things, or were talking to me. I chalked it up as being distracted or involved in my work. Even as a kid, when I was reading, if you tried to talk to me it could be very hard to get my attention.
But I didn't just have good hearing, I had great hearing. I could hear my name being whispered two rooms away. It drove my parents crazy. I never did the loud rock concerts, loud walkmans, whatever, that ruins your hearing. And yet, the drugs that saved my life in the end took away quite a bit of it.
Fortunately, God has blessed me with the ability to still have my music. Some of the upper, upper registers are gone but I have pretty good musical memory. And that's what singing is, hearing the pitch in your head. So if it's a song I know (and, thank God, I know many) I'm OK. I can go to musicals that I've known and loved and still enjoy them. I can learn new pieces, as well, and my musicals abilities haven't abandoned me. In regular conversation, however, it's another story. People get frustrated because I can't hear them. Well, I'm frustrated because I can't hear them. When I'm in a noisy restaurant and everyone's complaining because they can't hear each other, I always say, "welcome to my world." It makes them a bit more conscious. There's nothing more inane about being mad at someone for being unable to physically do something. It's stupid.
The Anchoress also writes about the Dark Night of the Soul, how God uses people in their weakness. I love the concept of the Dark Night. To me, it is very comforting to know that those who are closest to God can also be, at times, the farthest from him. St. Terese of Avila, I believe, calls these periods of "aridity," like being in the desert. Immediately before St. Therese of Lisieux's death, she was in severe aridity. She couldn't pray, she doubted her vocation, she doubted the existence of Heaven. Now I haven't doubted the existence of Heaven, but I have been in one of these periods lately. Not just because of the hearing problems, but because of the health issues overall, and how dependent they can make you. Dependent on other people, when we all want to be as independent as possible. We don't want other people giving us meds, washing our hair. These are things we have been able to do since childhood, or can handle ourselves. To be reduced to an almost sub-child position can be intolerable. But to not have the support is the worst of all. And when it seems God is silent...
I remember something I read once, from a letter Mother Teresa wrote to her confessor (I think). She said that sometimes she found her mission almost too hard to accept. She couldn't do it. And she would pick up her rosary, very deliberately, and just say it. The Creed. The Our Father. The Hail Marys. The mysteries. Just going through it, almost, if I may say, mechanically, until she reached the end. And it would be enough.
I have taken this strategy to heart. When it is too much, I take my beads, whichever set is handy, and just pray them, letting whatever is in my heart be opened and presented before God and Mary. They know what is there. And, in the end, it is enough.
The Anchoress talks about the day her doctor told her she was losing her hearing due to Lyme Disease. Well, having lost a good deal of my hearing due to drugs pre-tx, I can relate to her feelings of shock and dismay. And even anger. Both her sons are musicians. I am a musician. Of all the things that had been taken from me, this was the one that really hit home. I mean, it was what I did. I was a singer. I had been trained in classical singing. Music was the thing for me. In college, I really developed and ear and was coming up with good relative pitch (OK, not as good as Tiff, who has perfect pitch, but we can't all be perfect). We first noticed (well, my friends noticed) in my later years at college that I wouldn't hear them when they asked me things, or were talking to me. I chalked it up as being distracted or involved in my work. Even as a kid, when I was reading, if you tried to talk to me it could be very hard to get my attention.
But I didn't just have good hearing, I had great hearing. I could hear my name being whispered two rooms away. It drove my parents crazy. I never did the loud rock concerts, loud walkmans, whatever, that ruins your hearing. And yet, the drugs that saved my life in the end took away quite a bit of it.
Fortunately, God has blessed me with the ability to still have my music. Some of the upper, upper registers are gone but I have pretty good musical memory. And that's what singing is, hearing the pitch in your head. So if it's a song I know (and, thank God, I know many) I'm OK. I can go to musicals that I've known and loved and still enjoy them. I can learn new pieces, as well, and my musicals abilities haven't abandoned me. In regular conversation, however, it's another story. People get frustrated because I can't hear them. Well, I'm frustrated because I can't hear them. When I'm in a noisy restaurant and everyone's complaining because they can't hear each other, I always say, "welcome to my world." It makes them a bit more conscious. There's nothing more inane about being mad at someone for being unable to physically do something. It's stupid.
The Anchoress also writes about the Dark Night of the Soul, how God uses people in their weakness. I love the concept of the Dark Night. To me, it is very comforting to know that those who are closest to God can also be, at times, the farthest from him. St. Terese of Avila, I believe, calls these periods of "aridity," like being in the desert. Immediately before St. Therese of Lisieux's death, she was in severe aridity. She couldn't pray, she doubted her vocation, she doubted the existence of Heaven. Now I haven't doubted the existence of Heaven, but I have been in one of these periods lately. Not just because of the hearing problems, but because of the health issues overall, and how dependent they can make you. Dependent on other people, when we all want to be as independent as possible. We don't want other people giving us meds, washing our hair. These are things we have been able to do since childhood, or can handle ourselves. To be reduced to an almost sub-child position can be intolerable. But to not have the support is the worst of all. And when it seems God is silent...
I remember something I read once, from a letter Mother Teresa wrote to her confessor (I think). She said that sometimes she found her mission almost too hard to accept. She couldn't do it. And she would pick up her rosary, very deliberately, and just say it. The Creed. The Our Father. The Hail Marys. The mysteries. Just going through it, almost, if I may say, mechanically, until she reached the end. And it would be enough.
I have taken this strategy to heart. When it is too much, I take my beads, whichever set is handy, and just pray them, letting whatever is in my heart be opened and presented before God and Mary. They know what is there. And, in the end, it is enough.
Blah!
Have yet another Dr. A trip tomorrow. Am not too thrilled. Also not thrilled with the fresh snow onslaught. I wish we could figure out what was going on so I'd start to feel better and actually be able to, I don't know, go to work, get work done, do the things I like to do instead of 1) not sleeping 2) not sleeping 3) not sleeping 4) having the port accessed all weekend for no good reason, so not getting good hair washes (although a lot better now with short hair than with long, let me tell ya), and 5) having all sorts of other issues with work and other things. Sigh. When it rains, it pours, you know? Hopefully Dr. A will have come up with some positively brilliant ideas over the weekend so that we have a game plan. I have faith.
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