The Phone Call

So Julie called around 5:00, and the deal is:

--appt. on Monday morning at 8:00 for blood, CXR and PFTs, and to talk about what the cultures grew over the weekend.
--Lots of inflammation but no signs of rejection thus far.
--changes the tac dose to 1.5 AM and 1 PM (which is the same)
--Back on the levoquin b/c there was some strep that grew out of one of the cultures.

So we will see what happens Monday. We could do another IV course (GRRR!), or we might have to talk to Dr. G...who knows. We'll see. But at least I'm OK this weekend.

Bronch 101

So one of my friends Andrea asked me today precisely what a bronch entails. I thought since I talk about them so often here, an explanation might be a good idea. So here we go.

Basically a bronch is a way of seeing what's really going on inside the lungs. A basic bronch is with "lavage," which is a fancy way of saying they squirt a lot of saline in there to loosen up secretions and suction out some for sampling. It's kind of like a lung car wash. They take about 45 minutes. A bronch w/ biopsy also involves lavage, but the 'biopsy' part involves the taking of a bunch of small pieces of tissue to test for rejection and stuff like that. So we check secretions and tissue pieces to get a full picture of what is going on down there. Post-tx, they are done at 1 month, 3 months, 6 months, 9 months, and 1 year, with yearly ones after that, and whenever one is warranted. I've had three in the past two months, so it's a good thing I like them. As far as testing goes, they are not bad.

You are NPO (Latin for nil per oram(l), "nothing by mouth") at midnight before the exam. This can be tricky if they randomly decide to do one, but they basically just tell you not to eat or drink from that point forward. You want your stomach empty so it doesn't, um, "empty" itself during/after the procedure. It's a 23-hour admit, so if it's scheduled you end up going to Admission around 7 am, check in, and go to a room to wait for them to come get you. Blood is taken ( for my drug levels and such), a pregnancy test is done, and usually around 9, 10:00 one of the RTs or the nurse on the floor takes you down to the bronch suite. Now we have a brand-spankin' new suite, which I wrote about in a post below. It is awesome. (Note: now they might just admit us to the bronch suite, since there are pre/post procedure rooms. Not sure.)

A bronch involves a lot of personnel: 3 RTs (respiratory therapists), a nurse (or two--usually now it's just Julie), Dr. A, and the pulmonary fellow or someone else (this time, it's been the fellow, named Steve. He and I are getting very chummy.). And, of course, I'm there.

The procedure starts with the RTs attaching little monitoring probes to your chest: one for your heart, and the others monitoring reps per minute and breathing. You get a SAT monitor on your finger and a blood pressure cuff which measures your BP every 5 minutes. This information is broadcast on two little TV screens at the foot of the gurney. You get a nasal cannula with about 2L of oxygen running through it to start, although sometimes during the procedure I've gone up to 4, depending on coughing and stuff like that.

Once you're all rigged up, you're strapped to the table, arms and legs, so you don't move or try to remove the scope or anything fun like that. You kind of feel like Frankenstein's monster. After that, the fellow has usually arrived, as well as the nurse, and the fun parts begin. The fellow starts to numb your throat with a very nasty-tasting spray so that you can't feel the bronchoscope as it goes through. There are about 4-5 sprays of about 5-10 seconds each, and it's kind of nasty. Sometimes, though, they do this once you're sedated, so it's all good. Concurrently Julie will be giving me fentanyl and versed through my port. The first is for pain (I usually get about 300 mg) and the versed is so you don't remember the procedure (6 mg). It's a great cocktail, let me tell you. I like to be out, or out soon after, my throat is numb, because it's a very odd/panic-inducing feeling to not be able to feel yourself swallow. Do not recommend it. The "happy drugs" are not administered all at once--it's about 3 or 4 separate injections, so you nod off gradually, which is nice. I usually feel pretty loopy. For a bronch they don't want you completely out, because you have to be able to follow commands when they give them, but they don't really want you conscious, either. I believe it's called the "twilight" state. But I'm usually pretty easy to sedate, so I go to sleep very nicely. I also bare my soul during bronchs and say some interesting things, so it pays to be present for them. :) Considering that all bronchs at Children's are taped, I bet there's some pretty interesting stuff on my tapes....scary thought.

Anyway, once I'm out, they start the actual procedure. I may or may not have seen Dr. A before we start, usually not. It takes about an hour, and then you go to one of the post-procedure rooms to kind of wake up. When you've waken up a bit they take you to the floor where you continue to shake it off. Once you're coherent enough, you have to swallow to prove your gag reflex is back, and usually eat something. After all that, they will discharge you, unless there were problems, but I've never had any. You can't drive for 24 hours post-bronch, and it usually takes me about 36-8 hours to totally shake off everything. You sleep really, really well following this procedure, let me tell you.

So that, everyone, is how a bronch works. Great test--happy drugs, you get to sleep, and you get good samples for testing. So yay!

housekeeping

This weekend I will be upgrading my internet browser so that I can have some new features on the blog, like links and long-quote formats, to make it more user-friendly. Hopefully this will work out for all of us!

So it goes...

So yesterday I went in, we did blood, CXR and PFTs. Well the PFTs were down five points, which isn't happen, and the DLCO was down even more than that , which also wasn't happy. That, plus the shortness of breath and fast heart rate, and other things, led to another bronch! Woohoo! But this time it was in the nifty new "bronch suite," which has two bronch rooms and 7 or 8 pre/post bronch rooms, with TVs and stuff, which are really cool. We have come a long way from the broom closet that the bronch suite used to be. And I'm serious about that. It really was the size of a closet; I kept expecting a janitor to come in looking for mops, or something. So we did that, spent some time on C5 until I was reasonably coherent, and then I came back here and slept. I had two bagels yesterday--that was my entire food consumption. I'm obviously not at work, which is a good thing b/c my blood sugars are all nutty and I've got a big headache, plus sleeping is still really, really high on my to-do list.

So here's the plan--if it's still infection, then we just have to come up w/ a better way to treat it. If it's rejection, since we've already done 2 steriod courses, we might change the Imuran to another drug. Sometimes that's all it takes. If we still can't tell, then I might have a date w/ Dr. G, who can do a more "surgical" biopsy and remove a nice big piece for us to look at. This will require some "resort time" since a chest tube (ugh, ugh, UGH I hate chest tubes!!!!!!!) will be involved,but it would give us some definitive answers. However, Dr. A felt we should do one more regular bronch before we called in Dr. G. So we'll see. I am awaiting a phone call to let me know what's what. I sure do a lot of waiting by the phone....

Update time...

As you can see from the post below, I am going to Shangri-la tomorrow. May have bronch, may not. Am NPO after midnight--oh the joy!! Better stock up now....ha ha.
I will let y'all know how it goes...

I'm not crazy!!

One of the things I hate about doctors, health care workers in general is the tendency to move things to the "it's all in your head" category when they can't find a real reason for your pain, problems, etc. Now, granted, some things might be psychosomatic, meaning that you are, mentally, causing them to happen, consciously or not. But I know my body. I've been around the block a few times. I know when it's my head and when it's actual physical symptoms.

Case in point--the last few days, my heart rate has been really high, like 150. That's a resting heart rate. Normally my resting heart rate is like 118, 120. 150 is what I try to hit when I work out. So this is not so happy. I've also been having recurring chest pain (again), shortness of breath (again), etc. So I called High Command today and we moved my appt. from Monday to tomorrow, which I like. But at one point someone asked me "are you nervous? Are you OK?" and it's like, "Um, hello!?" Now I know that the person was being solicitous and really wanted to know. But so many times it just gets shifted to, "oh, it's all mental. She's worried about something so she's flipping out and this is what's causing everything." Um, no. Last night I was in the middle of dinner with my friends, talking about the Oscar race, and I got chest pains. I so wasn't even thinking about it. Stress, of course, comes when you are sick and you don't know what the heck is going on with your body, or when it's going to get back to normal. It's a vicious cycle. But I know when I am just freaking out and making myself all twitterpated and when my body is doing it of its own accord.

Update time...

So I went to the resort today, and I didn't have to stay for torture! Yay!! I am going in on the 29th for an appt. and potential bronch, which means I have to go NPO, which doesn't make me happy, because if we don't bronch, then my first order of business post-appt. is breakfast. Which I will have to get at work. And will throw off BSLs, probably. oh well.

But anyway, back to today. PFTs holding steady, although my FVC (forced vital capacity, which I think measures the total amount of air you take in in toyr lungs) was 67, which is up a ton from last week. Go me!! The FEV1 (how much air you blow out in 1 second) was 56, which is about the same as last week (55). Weight is the same (whew, last week was a really bad eating week so I was worried), and the CXR looked OK. There are still some crackles in the lower lobes, but (!) we have reduced the evil aerosols to only once a day, yay!!

So the 29th will be innnteresting...hopefully nothing exciting (on this front, anyway) happens before then!

Tomorrow...

I go to The Resort for the weekly check-up at 8:00 (at least I get to sleep a bit! Huzzah!). So far, we've got labs, CXR and PFTs scheduled, and hopefully Dr. A won't want anything else! I will be the only one in the office tomorrow so I need to be there and not on a guerney in the Bronch Suite. But I will let you know what happens...good thoughts!!

You Gotta Have Friends

One of the most important things I learned, both pre- and post-tx, is the importance of a good support system. Now this might sound like some psychobabble, but its importance cannot be underestimated. Without a core group of people that you can depend on for various things, from helping with grocery shopping to just coming over and listening when you're having a meltdown, these folks are very, very important. They're so important, in fact, that having or not having one is an important part of the transplant evaluation, because if you don't have people to help you, you can (and probably will) be so overwhelmed after transplant that you won't be able to care for yourself properly. And that's no good since it jeopardizes the success of the transplant.

I have been very fortunate on many fronts. My family, especially my parents, have always been fantastic when it comes to dealing with meds, talking to doctors, and getting what we need. That doesn't mean that we haven't had our moments--far from it. There have been plenty of swearing, yelling, throwing things, and generally questionable practices. :) But my family has always been on top of getting the meds, taking me to appointments, and making sure we (OK, I) was really, really compliant. That's very improtant when considering transplant, because if you aren't compliant before, what indication does the center have that you will be after? My younger brother and sister were also great, even learning to mix IV drugs and give me the meds when my parents couldn't do it. I've seen plenty of families where the parents are not interested at all in their child's care, with bad results. I am very fortunate that I was not one of those kids.

Secondly, and maybe even more important, are my gerat friends. It can be so hard to find people outside your family who are willing to befriend someone who isn't "normal." But in grade school, and, later, high school and college, I was blessed with great friends who were willing to be buddies and take on all my issues in stride. Tiffany, Branden, Milia, Troy, Tom, Sean, et al. , have been particularly great and I want to thank them. Now if you've read my post about the roomie from Hell, you know that this is often not the case. But these guys are awesome. I can test my blood sugar in front of Tiff, have IVs given, whatever, and she doesn't bat an eye. That is so valuable in a friend. They've come and visited me in the resort, come over when I've had IV drugs to do, and been very compliant whenever I couldn't drive or if I had to leave a party early to do drugs. Sure, they weren't perfect, and there were times they would "forget" I wasn't normal, but that's better than it being a constant reminder.

So many people do not have the capacity to deal with those of us who are not "normal." To paraphrase As Good As It Gets , it's often a "bit too much reality" for everyday. Being friends with someone who might die is hard for people. It's disconcerting to visit a 15 year old in the hospital and see IVs and such, but it can be even more jarring at home, when syringes are in the fridge next to the Coke and a sharps box is next to the trash can. Some people were incapable of providing the emotional support I needed, especially as I got closer to transplant, and could do less and less but needed people more and more. It was scary and I needed others outside my family to talk to, since my family was just as stressed as I was. And I was their daughter/sister--I couldn't be completely open with them. I felt a strange desire to protect them from how I really felt, something that's not all that uncommon among people with health issues.

I am so grateful to all these people who have been my supports. I don't know what I would have done without them. I never taken them for granted and I am so lucky that they were there--and continue to be here--with me as I go along this road. Without their support it definitely would not have happened.

Finally....

a really, really good weekend, Noah's Flood notwithstanding!
I actually felt good this weekend, which was helpful because David was here for the first time since the first weekend in December...it had been way too long!!


Friday I made an awesome apple "tatin" thing from Ina Garten (aka The barefoot Contessa), which is so divinely good I will never eat apple pie again because I can have this. Branden, Andrea and Tom came over and they wanted to the eat the tart, but I said nooooo because I was saving it in case David wanted any. (As usual, he didn't. He's really not a dessert guy. But oh well) It was nice to be able to have people over and not feel like I wanted to fall asleep!

Saturday I managed to get some things done around the apartment (I was like freakin' Martha Stewart, I'm telling you) and David came around dinnertime. I made a great Greek dinner--tomato and shrimp casserole (more like a really good stew, it's so yummy!), pita with tzatzki , a sort-of yogurt dip with mint and cucumbers that is sooo good, and asparagus with lemon and olive oil dressing. So that was really yummy. We also watched Thank You For Smoking --if you haven't seen it, you must, because it is great! Aaron Ekhart plays a lobbyist for the tobacco companies who is also trying to impart moral living messages to his impressionable 10 year old son. Great cast including Maria Bellow, Robert Duval, Katie Holmes (before she became Mrs. Cruise, she is really enjoyable in this film) and Rob Lowe as a hysterically funny Hollywood producer (great scene in a kimono).

Sunday we went to Mass (duh!) and had lunch at Longhorn (mmmm steak...well, for David), hung out at my parents' house while we did laundry, and then came back here. Sean, Andrea, Tom and Branden came over and we had pizza, watched Desperate Housewives and played my new game, Imaginiff?, which is like, "Imaginiff Emily was a road sign, what kind of road sign would she be?" and you get 6 choices. Then everyone votes. It's quite nice. The funny thing is, it's based on how well you know people, and David won. He's met everyone, um, once, and we've known each other for going on 10 years. Go figure. :)

David left around lunchtime today and I've got choir tonight. But it was nice to have a normal weekend for a change!!

Way too true....

From Dream Mom, a new blog I've discovered. She's talking about treatment options for her son, who has a variety of medical problems (read the blog for more details, http://dreammom.blogspot.com, I think):

The visit ends with a discussion of the surgeries. Tonsils and adenoids removed, to open the throat for breathing and a Nissen, to help with the reflux. I ask if it can all be performed before the end of the year, since we’ve met our stop loss. Our stop loss, is met every year now, as a formality. That’s when you know, the disease has you.

That is so true. We meet ours every year, usually around August. It's good, because then everything is covered after that, but sad, because that means you've used a heck of a lot of money on health care.

Back to work...

Gone to work two days in a row, woohoo! And haven't left early! These are good things. And since MLK Day is on Monday, I get an extra day off. Yay! My next Dr. A appt. is on Thursday, so we'll see what happens then...


Trying to ease back into the fitness routine. Have done two strength routines and some stretching, which may sound wimpy by stretching is really important for me. For one, I have, in the words of one of my PTs, the "tighest hamstrings [she'd] ever seen," so I stretch them regularly or they get really cranky. I also do a yoga routine to focus on them (as well as other parts of my body. I really like yoga and pilates. I'm probably a geek :-D). I also do hand stretches and strengthening exercises on my right hand, which had the skin graft post-tx. While the new skin is still growing I"m trying to keep up the range of motion, which is very important for the piano playing and just working in general. So far I'm doing pretty well, and I think part of my short of breathness is the fact that I'm just weak. It'll be a little hard to get back to where I was, but I 'm going to try. I definitely want to get a yoga workout in tonight. Going back to work has also helped, although it makes it harder to eat better because of all the temptations around.

On the BSL front, I'm doing carb counting now, which means that I should have to take less insulin, which should also help my weight. Some of the levels are still wacky but I'm pretty sure the vfend and other drugs may have something to do with that, too. We'll see what happens there...

Two steps forward...

and like 1 1/2 back...

So I go to clinic yesterday, feeling really, really tired, like the air is gone from the balloon, and I'd been having chest pain the night before. So sleeping was fun. Do the normal--blood, CXR, PFTs. PFTs actually dropped a little but the CXR OK. I am really frustrated because I didn't know what was going on. If the steroids are supposed to help then shouldn't they be helping ? Shouldn't I not feel like crap? Dr. A said this was normal, and I'll guess I'll have to take his word for it, but I don't like a normal where every day/ every few hours is decided by how I feel. That's not cool. Because I was still having pain we did a CT with contrast. DO NOT put contrast in a port! It doesn't work, it just gets really really puffy and sore! So I had to go to infusion and have them try to put a peripherial line in (God bless Valerie who got it to work), and it's 1:30 and I'm hungry because I can't eat anything until the stupid scan is done and I'm all winded from traipsing around CH with my stuff, so I am about ready to fall apart. GRRRRR. We finally get the scan and I went home, ate a burger, slept, ate cereal, watched 1 quarter of the OSU game, and went to bed at 9:45. Yes, 9:45. And guess what? Slept like crap, again. Cannot win. So no work today, but I did manage to find a patch of decent time to go grocery shopping and get jeans that fit, because I am (yay!) losing weight and my old jeans are just falling off me. It was totally time for some new ones. So that was a bright spot, at least.

Am feeling OK now and will hit the work desk tomorrow. Hopefully nothing else crazy will happen...

Done!

With the steroids for now, that is....we'll have to see what Dr. A rules tomorrow post blood/CXR/PFTs. My oxygen sats have been OK (they were 98% when I checked this morning), and the heart rate seems OK, so hopefully we might have turned a corner. Of course I slept like crap last night, so who knows. Steroids do such bizarre things to your body it isn't even funny. But the blood sugars also seemed OK this morning, not the 300 something it was yesterday before breakfast! Yikes!!! So we'll see how the day goes. I'd like to feel OK today because I have grocery shopping to do and that's not fun if your body is kicking your butt. So we'll see...

Donation record set in central Ohio!

Today's Dispatch had a story about how organ donations in central Ohio (LOOP's territory) topped 100 last year, beating the old record of 86 donors in one year. This is great--thanks Ohioans!

But, it emphasizes how much more work still needs to be done. Over 70% of people think that donation is a worthy goal, yet so few people actually do it, or have their wishes followed by their families. Please, please if you haven't already, take the time to hop over to Lifeline's website (link on right!) and register. If you have already, get your families to. It makes such a huge difference in so many people's lives. I know I've said this before, but I'll keep saying it! Slightly more than 100 people donated last year. Can we top that this year? I hope so, because it will save so many people, and keep so many huysbands, wifes, sons, daughters, friends, cousins, nieces, nephews, etc., alive and bringing joy and happiness to so many people. There is nothing like the feeling of new life you get after transplant. It is remarkable. Please help spread that feeling!! Besides, you aren't going to be using them!

Steroids, round two!

Today's bout was not as bad as yesterday--the weird taste is not so bad, and the tremors/ tiredness as not as bad as yesterday. My face is really flushed, however, and feels warm, so I hope I don't have a fever. The nurses took my temp at the end of the infusion and it was OK, so I don't think that's it.
The only real issue is that my lower lobes (the bottoms of your lungs) are really, really sore. Julie and I think it's from the coughing from the 1) bronch and 2) the aerosol drugs. I am getting up a lot of stuff, mostly from the bronch, which is good, but it also hurts. Doing the aerosol also hurts because it's opening passages that are 1) already open to the point of pain and 2) causing more coughing, which leads to--you guessed it!--more pain!! woohoo! But as long as it doesn't get too bad (it's about a 5 on the 1-10 scale), I'll be OK. Julie did say to call if it gets worse. And the shortness of breath is still an issue, but hopefully we can start to see some changes there.
Last (hopefully!) infusion tomorrow but it's at home (oh lovely Children's Homecare nurses!) so that's good, and it's at 1:00, which is also good. My port behaved today and we didn't have to re-access so I hope it does the same tomorrow. it's been a real bug-a-bear lately.
Sats, last time I checked, were 98 and my heart rate seems to be settling down. It was really high (like 150, 140) after the treatment and now it's about 122, which is still high but not as high. So I'll take that. And my blood sugar levels are all wacky, but I'm doing the best I can--that is totally because of the steroids. Oh, the joy. I see Dr. A again on Monday so hopefully things are good!

But!

An unexpected benefit of the steriods is that ice cream is really one of the only things that gets rid of the nasty taste. But I don't want to eat so much that I lose any ground I've gained weight wise (you know, I really hate talking about losing weight. I really, really do. Why can't I have good lungs and weight 115 pounds or so? Huh???). So it's a dilemma. But I do have to eat something. So ice cream and cookie crisp (cereal works well, too, as does oatmeal, I would imagine. But that's tomorrow's breakfast).

Post-infusion tremors have set in pretty well so my handwriting looks a bit suspect. Times like this I really, really love computers. Oh well. At least I'm going to be now so it's not like I have to do anything for the next seven + hours...huzzah!

Back in the trenches!

I have at last returned to work!! Yeehaw!! Even though I had to leave early (12:45) to get the first of three consecutive steroid infusions, I didn't mind. I was at work and being a productive member of society. I was wearing nice clothes and make-up that actually mattered. It was great. :)

It turns out that, under the infection (which I had), I also had "mild acute rejection", which basically means hit the body with steriods until the white blood cells calm down and go back to ignoring the fact that my lungs don't, technically, belong to me. So we're doing 3 steroid infusions, about 2 hours each, to make this happen, we hope. I go back to see Dr. A at 7:30 on Monday so we can see how we're doing. On the infection front, I am feeling a lot better there. The cough is better (mins the residual bronch/biopsy coughing, which goes on for awhile, since they like to really rummage around down there), the nose is better, so these are good things. The oxygen sats are still kind of bonkers but that's probably due to the rejection and not infection. It goes up to 98% or so, you just have to wait a little bit for it. It's like the Little Engine That Could, or something. So that's that. But hopefully we are on the right track now. Wooohoo! And tomorrow is already Friday. Beautiful, eh?

The bad thing about the steriod infusions is that you have the lovely metallic taste of steriod in your mouth the rest of the day. It starts about 45 min.-1 hr. in and then you're stuck. So I ate lunch before then, thankfully. The other thing is that your body really like steriods--it makes joints and such really happy. So when they stop them, things get cranky. Not looking forward to that so much. But since it's only once a day, and not 4x a day for almost a week like it was when I was an in-patient, I'm hoping it's not so bad this time. We'll see...

Way to start 2007...

with a day at the resort! I had hoped to go back to work today, but nooo, probably not until Thursday at the earliest now.
I had an appointment at 7:30, NPO in case Dr. A wanted to do a bronch. So we do labs, CXR, PFTs (57% today, up 3 points). We do the DLCO (also up, I forget by how much). But Dr. A wants to do a bronch, so we get set up to do that, started around 10:30. They must've done a lot of digging because I'm very sore and felt congested afterwards, but the nurses/Julie/Dr.A told me that they put a lot of "wash" (saline) down there to get samples so that's probably why. I didn't wake up on C5 until probably about 2, 3:00...must've had a lot of good stuff, let me tell you. :) So we're going to see what "grows out" of what we took, and we may do a 3-day 2-3 hour steriod infusion (outpatient) if we need to. We also re-started the Levoquin.

Whew, so that was fun! I came back to the apt., slept, and then my parents came over around 8 to make sure I took my drugs and to see that I was OK, because I was kind of not so OK when I came home--nauseous, etc. But I feel OK now.

On the plus side, I lost 5 pounds! Woohoo! So I guess this whole "let's eat better" thing is working. Or maybe it's because I've got my energy back and I'm moving. I don't know. But I'll take 5 pounds. Although it is still so weird to talk about losing weight as a good thing about 11-12 years of it being verboten . Very odd. I still have to get my mind around all this.

Happy New Year!

Some updates:
OK, I lied...we're still on 2x/day aerosols. Grr. But at least it gives me time for reading..I read the whole LOTR trilogy in two days while doing them!! (for more see the CPG blog). Seeing Dr. A tomorrow at 7:30 (oh the joy!) for blood, CXR and PFTs. If everything is well, I skip off to work! If not, we wil either do : 1) a two hour (grr) infusion of steriods in the infusion clinic or 2) a bronch! Oh the joy!! I am hoping everything is good! My home sats have been about 98, which is good, and the PiKo numbers ( a thing that measures FEV1s that I can do at home) have been OK, too. So I hope things go well tomorrow because I want to go back to work!!

My resolutions:
1) Spend more time on my writing
2) Actually work out 3-4 times a week like I'm supposed to. I will hopefully get started on that today. I want to improve my time for the LOOP 5K in July, so I better get cracking!
3) Stick to a budget...at leasty until the first Coach bag sale at Macy's....sigh.