Tobi Podhaler

I started the pod haler on Friday.  So far it hasn't been awful to use.  I only have a 7 day trial so I won't get the full 28 day dosing, but we are doing it to see how my lungs react to it.  I have a horrible reaction to inhaled antibiotics.  Severe bronchi spasms.  Hate them.  So far nothing serious like that but its only been 3 doses.  The first night, Friday night, I had quite a few suffocation dreams and P said I was moaning a lot in my sleep.  So last night I upped my O2 from 1.5L to 2.5L and it seems to have worked.

Saturday morning I also woke up with a sore throat.  But that could be from the inhaled meds.  Or so I thought.  Today I woke up with a left eye that won't stop watering, a nose on constant drip, and sneezing up a storm.  Looks like a cold.  Fabulous.

I have clinic on January 28th as my follow up from the 3 weeks of IVs (if you want to call it that) and to discuss how the pod haler worked for me.  Or didn't.  I also have an appointment with a pancreatic surgeon on the 28th.  My GI doc at Dana Farber agreed that I should meet with one to discuss the possibility of removing that precancerous cyst from my pancreas.  She doesn't think I need to right away, and that monitoring it will be sufficient, but it dawned on me on Friday that BWH will NOT transplant me with a precancerous cyst.  So if something were to happen to me before it was removed, and my lungs took a dive, I would not be able to be listed until it was removed.  So why wait?  I need this bad boy removed asap.  That is something I will discuss with the surgeon on the 28th.

So until the 28th my lovely blog readers...

The Fevers That Just Won't Quit

Wow 9 days?!?!  Sorry folks.  Been hectic around here.

My lungs have not been cooperating with me at all.  Nothing ER visit worthy but definitely looking forward to Tuesdays clinic visit.  If she doesn't think I need to be admitted I will have a HISSY FIT and a half.

My O2 with exercise is absolute shit.  Normally I walk at 3.5 with bursts at 3.8.  Right now I am GASPING at 2.7.  And my O2 is hovering at 90%.  Heart rate has been as high as 171.  Wednesday I started with fevers.  Tonight again, its 101.  Hasn't been that high since the flu of April.  Hoping I am pushing myself too hard and my body is just tired and fighting something.  If I hit 102, no worries I will haul my butt to the ER I promise.  I finished my prednisone and Cipro on Tuesday.  No difference, and really, I think I am slightly worse.  Fevers say that at least.

Thursday I still did my personal training session, but we modified it a lot.  Some days I do walking lunges and other exercises that require me to walk while holding weights.  On a good day they make me SOB, so I requested we cut all walking exercises out.  I tried one squatting exercise and made it through one set before I said no more on that one.  I couldn't do it.  She even commented that I was breathing MUCH heavier than normal.  And I only completed about 2/3 of what I normally do.  Still not too bad all things considering though.  Of course, I watch other people with their trainers and I see the amount of things they do and it just exhausts me ha!  They complete at least 1.5 if not 2 times the amount of exercises that I do.  Granted I am functioning at less than 40% lung function so I need to pat myself on my back for that.  And I am seeing results physically so that is excellent.

Thursday I also had my follow up with the GI docs.  My MRI looked good, nothing concerning and no need to see the Pancreas surgeon yet.  I am to schedule my colonoscopy, endoscopy, and endoscopic ultrasound for mid-November.  Then schedule a follow up with her in December to go over the results.  Once we get those tests again, we will have come full circle in a year and we can go from there.  If everything looks good then we can just monitor the pesky cysts.

Anyway, I wanted to give a small update.  I will be sure to post after Tuesday's appointment.

Finally Home

Well we made it home Thursday night into Friday morning.

I am feeling better now than I did when I flew down to Florida so that is an improvement.

Of course on the plane we had a bit of a "mishap".  I was drinking lots of fluids to ensure that my kidney infection would not flare up again, so towards the end of the flight I had to pee really really bad.  I knew I would never make it till we landed and got off the plane.  P got up to use the restroom so when he returned I asked if I could bring the O2 concentrator in the stall.  He said there was enough room, but I decided to just leave it at my seat.  We were in row 2 and the restroom was literally 6 feet away.  I figured "no problem"!!!

HA!

Like I said, I had to pee really really bad.  So I peed for what seemed like 4 hours (more like 1 minute) and started to feel really bad.  I could feel my chest starting to tighten up and my heart starting to race.  Whether it was disorientation from lack of O2 or anxiety I don't know, but I was frantically trying to locate the TP.  I decided against washing my hands and I lumbered out of the restroom and back to my seat.  I threw the O2 on and my oximeter and desperately tried to inhale the luscious oxygen.  My O2 read 78% and my HR was over 170.  I felt like I was going to pass out.  I cranked the O2 up to 3L (I could have gone to 5L but I was a mess and not thinking right) and gasped for air.  I'm not going to lie, I was a bit scared.  It took a few minutes for my O2 to go above 85% and about 20 minutes for my heart rate to go below 120.  I was finally able to recover to pre-bathroom numbers and I settled back in my seat.  But I was shaken.  I felt completely drained and totally helpless.

All I could think about was if I hadn't brought my O2 letter (can't wear it on board if you don't have a letter from your doc) or if I hadn't had the altitude study done.  I could have died on board.  How scary is that?  The whole bathroom episode was probably no more than 3 minutes and I felt like I was going to die.  There is no way I would have survived 3 hours.  Its crazy scary to think that my lungs are that bad that only a small dip in O2 concentration can cause so much havoc.  It really shook my confidence in my health.  Not that it was awesome to begin with, but I had the "wear O2 when you sleep because you hover around 89-90% but don't notice a difference when you don't wear it" attitude keeping me afloat.

Now I have the weight of not vacationing anywhere faraway until after I get some new lungs.  I'm stuck on mainland USA or at least the East coast.  How sad is that?  I know I know, people have it SO MUCH worse, but it still fucking blows.  We were supposed to go to Hawaii for our honeymoon and plans got derailed.  We NEVER would have made it there.  My lungs never would have survived .  That thought depresses the shit out of me.

But I am very thankful that I made it home in one piece and that we were not affected by hurricane Sandy.  My prayers are with those who were devastated by her path.

I have a ton of doctor appointments and procedures coming up over the next few weeks so November will prove to be a very busy blogging month!

Doubled up the Postings

Well since I didn't update after lasts clinic I will double up this time.

Last week I was up to 1.26L 43% FEV1 which was way up from before the hospital at .93L 32%!  But we kept the PICC in another week just to see if I could get up a little higher.

This week I hit 1.21L and 41% so down slightly instead of up.  However, I did an albuterol treatment right before I left the house last time so I was only about 90 minutes post treatment whereas this time I was over 2.5 hours post.  Yes that time difference will cause that much of a drop in my lung function.  That's OK though, they still pulled the PICC!

After PFTs I was informed I was getting an altitude test done!  Say whaaaaaaaaaat?  They can now test you to see if you require O2 during a plane flight!  How cool!

We started out in my exam room, then were kicked out to another consult room.  But then we realized there was no O2 hook up so it was off to the PFT lab room!  Once in there we were informed the IT guy needed to do work on the computer.  Was I OK with him being there?  YES!  Let's just do this 20 minute test and get it over with please lol!

here is the big boy that supplies you with 15% O2!  Room air is 20-21% O2.

all masked up!

Within 2 minutes of being hooked up I dropped down to 88% and he stopped the test.  We put the O2 on me at 1L and tried again.  I got as low at 91% but that was OK.  He tried dropping me to .5L just to see and I almost immediately went to 89%.  So I got a letter to wear 2L of O2 during the flight to Orlando for our HONEYMOON!   16 daaaaays baby!!!

And please don't forget:
I am not at liberty to post publicly who I need love and prayers for, but he needs them folks.  Lots and lots of them.  They are for a very close friend of mine who is fighting for his life right now.  And when I say fighting, I mean it.  <3 <3 <3

Curve Balls

Sometimes life throws us on a course that we aren't expecting but that we need.

For 2 weeks I was up early to take E to camp (read 7am) and then off to the gym to exercise.  No time to nap though as she needed to be picked up at 12:30.  I did have a couple of days where I did get a break but they were towards the beginning which really does nothing for me.

Last week E and I were in PA visiting my family.  Again I was not getting much sleep with 3 kids who are early risers.  I napped one day out of the 8 there.  Plus we were in the sun most of the day or I was out partying it up (bridal shower and bachelorette party - pictures will be posted at some point).  So I am totally and completely worn out.

Then there is today, followed by the rest of the week.  Up at 6:30 to be in class by 8:30.  Today we were in the classroom for 8 hours.  The next 3 days we will be walking around archives in Boston and Salem.  O.M.G.  The walking is going to kill me.  I digress though.  By 2pm I was shivering and feeling completely achy.  I could tell I had a fever.  When I got home I took my temp....It is running between 99.3 and 100.1.  Nothing horrible but ugh!!!  One day.  I lasted one day before I got "sick".  I say "sick" because I know it is lack of sleep.

Besides completely running myself ragged the past 3 weeks I finally got my O2 study results back.  Drum-roll please.....I need O2 with sleep, even when "healthy".  And of course I haven't been wearing it so I keep forgetting to put it on when I go to bed.  Tonight I won't.  Tonight I plan on going to bed, oh, well, in about an hour and sleeping all night, with my O2.

What does this all mean?  Well it means it is a good thing I did not interview and get a new job.  I lasted 3 weeks on less sleep than usual.  3 weeks before I began running fevers.  3 weeks before I know I am too exhausted to do anything.

Thank you lungs for being shitty and making a wonderful few weeks so awful.

O2 needs with Exercise Class

Today the class was much easier and I was able to stand for 90% of the standing parts.  It felt great!

Downfall?

O2 was consistently between 86-89% :(

I need O2 during class.

I don't want to wear it in public at the gym yet.  I am not emotionally prepared for that....

UGH

And I need it during my home workout for the jumping jacks and buttkicks.

That I can handle, its at home.

***SIGH***

Home Again

I got home around 8:30 last night.  The hospital stay was pretty uneventful.

I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm.  Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit.  I was honestly expecting way more than what it was with the pull out.  I never had them do it before.  She basically did a dressing change and just pulled it out some.  How ironic that THAT is my biggest fear with dressing changes.  Them pulling it out haha!  At least I know I won't die or have a heart attack from it now.  The thing I don't like is now it sits out really far from the insertion site.  That makes me nervous with cleaning it and all.  I might have to ask if they can tape it, just for my own sanity, when they change the stat-lock.

Health wise I feel the same.  My cough is less but as far as the lungs go....still hurt....still SOB....still tight.  IVs don't combat that though.  Last night I had a coughing fit and I turned the same color as my bright red tank top.  P said "hmmm you sound great babe, sure you were in the hospital?"  Pretty much sums it up.  It's only been 5 days of IVs though so I am expecting me to feel much better by the end of the 3 weeks.  Also, they have me on a different IV this time.  Usually I am on Tobra and Ceftaz.  This time it is Tobra and Zoysn.  I haven't had any real side effects from the Zoysn except alternating liquid poo with no poo!

Also while I was in I had an overnight O2 study done.  Wait what?  Didn't I just have one like 2 weeks ago?  Yes that is right. I DID have one done.  But guess who has NO record whatsoever of having it done?  Apria.  Yeah bastards.  Not too big of a deal getting it redone but still.  How can you have NO RECORD of it AT ALL?  Anyway, I de-satted below 88% a bunch of times so I had O2 delivered last night.  Its a smaller concentrator than I had last time and now I have funky green tubing!  No tripping over it in the middle of the night now!  I am back to using 1L with sleep and still none with exercise unless I decide to start the couch to 5k plan again.  Running, jogging, and inclines make my O2 plummet.

Sometime overnight while having the sleep study done, I must have slept wrong and pulled a muscle in my back.  The lower back, right around where the back indents just slightly about the butt, it hurts.  And I mean HURTS.  I didn't even have this much pain with my hysterectomy!  I could hardly move Thursday and Friday.  Tylenol does diddly for me.  I took 4 Motrin when I got home last night and I felt much better.  But I woke up around 7am (to do my IV) and again could barely move.  So I think I might be taking Motrin 3-4 times a day to keep this pain away until it works out on its own.  And hopefully that is soon!

That is my update for now.  I have a clinic appointment this upcoming Wednesday to see if the IVs have started to work at all.  AND I am done school for the semester!  Classes start again the 21st, but I have 2 weeks of blissfully nothing to do!  YAY!

O2 Study

Friday night I had another O2 study done while I slept.  They are picking the device up today so it will be a few days before I hear anything back.  Plus I have a clinic appointment next Tuesday (May 1) so I am assuming I won't hear anything until then anyway.

It was pretty similar to the last test I had done.  I saw 86-89% a lot when I would wake up, and when I was lying down I was at 90-91%.  But who knows what the machine registered.  The tech said it records the numbers every 30 seconds.  So if I hit 86% for 20 seconds in between two 90s it won't get recorded.  Kinda sucky.  But whatever right.

I am just glad we are doing the study when I am not feeling the best instead of like last time when I had just finished a 3 week course of IVs.  This test will be much more accurate.  Speaking of IVs.  The Cipro didn't do squat for me so it looks like I will be scheduling an admission for May 10th.  It is what it is.  At least I will feel good for the summer!  And even feeling shitty I have been exercising my ass off at the gym 4 days a week.  Go me!

Lack of O2 Makes Ya Think!

Today I exercised more than I have in a while. Real exercise, not the cleaning, laundry and food shopping that I tell myself is real (well the docs say it isn't but they should have 40% lung function then tell me that). Today I walked around the lake in my town. NOT the whole lake because that is like 2 miles or something like that, but about 1/4 of a mile I would say. Not too bad. I tried it at a brisk pace too. 5 songs on my iPod later and I was back at my car...huffing and puffing and hurting. My head was throbbing!!! On a good note I was able to cough up quite a lot of goo! Bree would have been proud.

The reason for the headache? 86% O2 stats the whole walk. I didn't use my O2 and I really should have. But I have yet to use it in real public yet. I've used it on the train when T and I were traveling to PA, so I could sleep. But nothing else. Now it seems I really MUST take it with me. But can I whine and say I don't wannaaaaaaaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!! Looks like a trip to REI or someplace like it is in order so I can get me a back pack to hold my portable concentrator. I don't think pulling the wheelie cart would work well and it's just too heavy to have on one shoulder for half an hour of exercise. I have Phillips EverGo if any of you have any ideas you want to share with me on back pack ideas!

So why did this all make me think you ask? Well as we all know it is very important to do your best thinking with less O2 in your blood than normal. Makes everything seems so much better right? Sensing the sarcasm yet? Well if not then look closer :)

After catching my breath and getting my O2 back to normal I sat in my Jeep. I sat there contemplating my upcoming transplant appointment. I found myself both excited and sad. Excited because I will be able to breathe for once, and sad because I need to get new lungs in order to breathe better. It truly is a bittersweet surgery.

Again you may be shaking your head and repeating that my FEV1 is decent. Most people I know waiting for lungs or doing the evaluation would kill for 40%. Me I don't feel like 40%. Most days I feel much lower. Inflammation and tightness are my issues, along with no inhaled or oral antibiotics to keep things at bay. Add into it my desatting with exertion and its a little clearer why I am going. 3 months ago when she first brought it up I thought for sure that I would not have to start the evaluation process yet. Now I wonder if it might be a good idea to do soon. Not so much because I NEED the lungs like yesterday, but because I can tell I will be a fast slider. Though I have been consistent and fairly slow since high school, the deterioration over the past 2-3 years has been much greater than the whole of the prior 10 years. I'm running out of coal for the fires...

My body is just tired.

Really Effin Frustrated

I had my clinic appointment again yesterday and I left feeling really frustrated and annoyed.  I felt like nothing was accomplished.  My PICC line was pulled and I got some information about a study I am going to do, but other than that, it was almost pointless.

There were a few good points and I should explain those first before I begin my tirade on everything else.  My lung function is back up almost to baseline.  I blew 1.31L, 45%.  My highest is still only 1.45L so I am not too far behind.  That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L.  So technically I am baseline.  Because of my numbers being back to normal, they pulled my PICC.  I am looking forward to my first PICC free shower in a little while!  I am also no longer culturing Steno Malt.  My last one was free of that, though I did culture Class B strep.  And the one before that I cultured Aspergillus (spelling??).  Both along with my normal PA.

Now for all the annoying, why I am so frustrated things.

First was the results of my sleep study.  I didn't de-sat below 89%.  This means that my insurance will most likely refuse to pay for my O2 concentrator.  She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim.  Even though I qualify for O2 with exercise, needing 2L.  She also said that when I am feeling run down and sick I will definitely need O2 with sleep.  Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY!  Now I will have to fight my O2 company and insurance to have them pay for the concentrator.  Just another headache that could have been avoided.  I have been using O2 for over 2 years now and I sleep like shit when I don't use it.   My blood gasses are all normal so I don't see an issue of using it.

My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal.  But I don't see how 99.6 and 99.8 are normal.  IT'S NOT NORMAL FOR ME!  I run low, always have.  Even at night I would be around 97-98 tops.  So to jump 2 degrees just isn't right.  Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one.  Her response - OK.

My third and final issue is this wretched pain I am having across my chest.  Sometimes it is centered directly on my sternum and shoots outward when I inhale.  Other times it will go deep into my chest until it feels like it is going to shoot out my back.  The pain was so bad on Monday night I was almost in tears when I went to bed.  Motrin is helping it thankfully.  When I asked about it she asked if I was doing any push-ups or heavy lifting.  I said definitely not with a PICC in.  I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe".  Gee thanks.

I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again.  He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK".  For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's.  I'll have to pay out of pocket for it, but I don't mind.  I want to see him and get his opinion.

I know I need to be more assertive and demand answers but that has never been me.  I hate rocking the boat.    However, if I don't start I might not like what I have to deal with.

Clinic Appointment and Sleep Study

Last night I had my overnight Oximetry study done.  We want to make sure I am getting the right amount of O2 at night.  Of course we had to do it during the course of IVs so my lungs are at their best.  But the few times I woke up I was around 88-90% so I am sure I dipped lower while sleeping.  I woke up totally exhausted, but with no headache luckily.  That is also a "good" sign to me.  The funniest thing happened too, when Peter's alarm went off.  It startled me, just like it does every morning, and my HR jumped way up!  Kinda funny to see it actually happen while also feeling it.  Made me giggle.

Clinic was OK.  My numbers have pretty much stayed the same.  I was 1.11L two weeks ago and today I was 1.16L.  I went from 38% to 39%.  Most of this could be from having the tests at 1:30pm versus the mornings when I usually do.  Tuesday is my next appointment where my PICC will be pulled so I am sure I will be back in the low 40s.  And if not then, well, I don't know.

The NP also gave me the number for an ENT (Ear Nose and Throat doctor) so I can have my sinuses checked out. I might not think they are bad but the bugs that are up there can drip into my lungs and keep causing issues.  As much as I DO NOT want sinus surgery, I will get it if the doctor feels I need it and if it will make me eligible for transplant at some point.  Which was mentioned, that if/when I decide to be evaluated, I will have to have them checked and possibly worked on then.  Better to have it done now while I am still relatively healthy.

Once I get my sleep study results back I will post them, and also I need to remember to ask about my culture on Tuesday.  I forgot today.

O2 stats in the toilet!

As my doctor has told me to yesterday, I started monitoring my O2 throughout the day.  I used to be really good at this but I have slacked off int he past few months.  So today I hung my oximeter around my neck and got to work...on cleaning, laundry and food shopping.

Cleaning - not bad, never dropped below 91%.  Granted I did it all immediately after my morning treatment.

Laundry - right along there with cleaning.  I still have some clothes in the dryer I need to fold, but my back ache is more troublesome right now than the lungs.  I just did my nightly treatment.

Food shopping - of course the public chore is the one where I dipped below 90% and stayed there.  I averaged around 87% the whole trip, dipping down to 81% when loading the bags into the car.  I didn't even check after carrying them in the house...I was too nervous.

She told me if I get below 90% with ANY physical exertion I need to wear my O2.  Does this mean I need to lug my O2 with me to the food store?  I will have to go in public with tubing on my face?  My CF won't be hidden anymore?  I will be able to park in handicap and NOT look like I am lying?

As I sat in my car after loading it up with bags and trying to catch my breath, I thought of what she had told me, and then I thought that I will have to wear my O2.  And then, the tears came.  Just a few, nothing hysterical, but they came.  I'm 29, I don't want to wear the O2 in public and shout to the world that I have a horrible lung disease and it is kicking my ass.

Call me wussy, call me a baby, but I don't wanna!!!!!!!!!!

Home O2...again

Anyone else noticing the lack of happy blog posts on here lately?  I know and I am very sorry.  I promise that sometime soon I will write a super happy blog!  Don't know when, but soon :)

So now for the O2 post.

I got my home O2 set up delivered today.  I emailed the new coordinator at Children's hospital to see if I could get a home concentrator set up before my appointment on March 9th.  I have almost 500 hours on my portable EverGo that I got right before Christmas.  While I love it, I don't want to wear it out when I will eventually need it all the time for going out etc.  She emailed me back this afternoon to let me know Apria was going to call me about delivering it today.  I was thrilled!!!!!  Talk about fast service!  The woman at Apria called me and within 90 minutes the guy was knocking on my door.  She had gotten everything approved through my insurance and there is no deductible or copay for me (which I was not expecting one because I have the same insurance as I was using in PA).

The delivery guys rolls up and knocks on my door with a concentrator, HUGE O2 tank and 3 small tanks.  And tells me that the respiratory technician will be calling this week to set up delivery of MORE smaller portable tanks.  Even though I told him that I don't need any of the tanks for back up because I have one that runs on batteries.  Luckily Peter is going to put the large tank in the basement so I don't have to look at it.  Yeah I flat out told him I don't want to see it at all.

After signing the paperwork and filling out forms, the guy finally left.  I shut the door then sat down at the kitchen table and cried.  I cried because I felt sick.  Seeing that large tank in the bedroom depressed me and made me see myself as sick.  Needing O2, using O2 and having the concentrator is one thing.  Even the small backup one I had wasn't bad.  But having that monster stare at me just made me sad.  I put a box over the top so I can't see it, but it is still there.

It just reminds me that so much has changed.  The guy asked me how long I had been using O2 and I said a year and half.  Can you believe it has been that long since I started it?  That scares me to that I have also upped my liters at night (I now use 3L and 4 with exercise) and with exercise.  It's the progression.  I just hope that I have a good clinic appointment so I can spiral out of this mood and start to feel better about myself.

And yes, adding a second, or better anti-depressant is on my to-do task list for clinic.

Yesterday I started my new exercise routine. My awesome Cyster Tara sent me to this great site…it’s called couch to 5k. GREAT program! It might take me a bit longer than 2 months to get to 5k but dang nab it I WILL get there!!!

Can I tell you just how AWESOME it feels to JOG on the treadmill?!?!?!? The first week calls for 5 minutes of brisk warm-up walking followed by 60 seconds of jogging and 90 seconds of walking for 20 minutes. I can do 60 seconds of jogging and usually do 2+ minutes of walking to get my heart-rate and O2 sats back. My HR is getting kinda high – maxing so far at 160+ and my O2 has dropped as low as 84% while jogging. Obviously I need supplemental O2 when jogging. I will have to call and ask about that this week. I have my concentrator in my room for sleeping but from there to the treadmill in the garage is more than 300 feet. TOO far to run tubing!

I feel fantastic having it set at 3mph for my walking and then 3.2 for my jog. By the time my 60 seconds are up I need a break. But it is a start!

Today was a little rough compared to yesterday. I went as long as 2.5 minutes in between to catch my breath and get good numbers back. Plus it is so muggy and hot that after one round of jogging I an DRENCHED in sweat! Never done that before from working out lol!! It also doesn’t make me cough while jogging, but as soon as I stop I start up. I keep water with me to hydrate myself and the combo has been helping me move some good goo out!

I love that I am jogging though. It gives me a reason to go out there and DO it. With just walking I find myself making excuses but now I have a WRITTEN GOAL. Not just some “well I need to do this” type of goal. I don’t care if it takes 4 months to get to this goal. It will happen. And when it does you can guarantee that my arse will be celebrating!!!

Last night I went out with ma girls and we were dancing! Yes I was dancing! YAY!!! I didn’t last too long since it was getting towards the end of the night. But I did it. Tonight I am tired! I was out late and up early to do my IVs. It was kinda fun “shooting up” in the bar haha! As soon as my last treatment is done at 12 I am off to lala land for the night…I can’t wait!!!!!!!!!!!!!

Clinic...and study visit 1

It went fairly well today. I got there early since I knew I had to talk to the woman about the Inhaled Cipro study. She gave me the paperwork and I signed off on it all. Sounds awesome to me! Double blind placebo controlled study, which means I may or may not get the drug. But either way I am excited to do it. I had blood drawn, urine test to make sure I am not preggers (passed phew LOL), sputum sample and x-rays. I was only there for 3.5 hours today which surprised me. I thought for sure I wouldn’t leave until 5 or so. But I was out of there and home by 5!!

I had a fabulous time talking with the woman! I learned a lot about Dr H and CF. We chatted about the different schools of thought (i.e. Danish method, genes vs. compliance) and she and I have very similar thoughts. She also has very similar thoughts as my Dr. She was telling me just how well respected my Dr is in the CF world. All the different conferences and lectures he has given on the subject. It made me feel super lucky to have him as MY DR!!!!!! And also that his dad was an Arizona state senator back in the day!! And there is a hall named after him at Arizona University! COOL!!!!!

I must say that now my lungs are KILLING me from all the walking I did. we had to walk around Penn Presby for the x-ray, blood work, etc. And of course it's not like I just walked I had to talk the whole time too. That went well LOL...huffing and puffing but still determined to talk!!! So now I am paying for it...plus it was cold out!!!!

Now for my DR visit. I lost 2 pounds (down to 119 - still great) which I had expected given my shitting issues. He said to try Miralax and see if I can clean myself out. It could just be built up sludge in there reeking havoc on my system. So looks like I will be shitting my brains out this weekend, voluntarily! If that doesn’t help I am to call him.

My lungs didn’t change at all. Seriously! My Liters last time were 1.24 and they were 1.24 this time too LOL! FEV1 40%. My HR was 104 and my SpO2 was 94. I didn’t get to see anything else since I was never alone and was always talking to someone. I was busy today LOL!!

I told him about the bloody noses and he said I need to huff more in the mornings so I don’t put so much pressure in my sinuses and pop the vessels and to try this thing called nasal gel which is supposed to help keep you all moist in there. We will see about the gel, I might just kick my ass and get into irrigating more frequently…ok actually doing it!

He also asked about my O2 and HR during the day and I told him it ranges from 100-115 at rest and around 93-94%. So he said to keep track and if I am around that at home to wear my O2 and see if it helps bring me down to around 85 HR. That is the only thing that made me kinda nervous. Almost like telling me full time O2 is needed though he didn’t say it. So I will be keeping a book with me to record my numbers and see how everything goes. I want to also make sure I am saying what I was doing when I checked.

That is all for now!

Oh edited to add:

I should mention that as part of the gene testing for colon cancer I will be seeing a gastroenterologist. So if the Miralax doesn't work hopefully they will have answers! Now if they would just call me back.......................

Boston...

I went to Boston this weekend to see my man.  It was great seeing him.  Being nauseous and miserable, that was NOT fun!  Not a clue why I was like that.  I felt fine on the ride up and when I got in at 1:30am.  Woke up to take him to his class and again felt fine.  By 9:30am I was nauseous and looking for a place to go so I could sleep (we had checked out of the room already).  I was assuming it was because I slept horribly since I didn’t have my O2 with me.  I slept for about 2 hours and then went and picked him up.  My stomach felt a little better but I was still afraid to move my head too fast.  We drove into Boston and checked into the hotel room.  BEAUTIFUL room!!!  I took some pictures hehe! 

Well we met his co-worker for lunch and then I came back up to the room to lay down.  I was hoping to get some more sleep.  Didn’t happen.  I laid there for the whole afternoon, nauseous, with no sleep.  We ended up just staying in bed all night, which was fine by me.  But I felt horrible since I was so sick to my stomach.  It did feel better by the end of the night which I was happy about.  I was able to sleep well.  This morning I felt great too, I slept well, no nausea, happy.  We packed, showered, nebbed and then left to go downstairs to eat breakfast.  I swear the minute he shut that door my stomach almost came through my mouth.  It hit me like a freaking brick wall.  Took all my effort to not barf right there.  We went down to breakfast and I stared at my potatoes.  At least I was smart enough to not order a big breakfast.  I drank some of my milk hoping it would coat my stomach.  I even went to the bathroom in hopes that I would throw up.  Nope.  We went back to the room so he could finish packing and I laid down.  I was feeling kind of better.  We said our goodbyes and headed our separate ways. 

I made it home with no incidents.  I was munching on pretzels so hopefully that helped settle my stomach.  I did have to pull over and sleep for a while because at one point I was falling asleep at the wheel.  It was scary!!  And of course it was right where there were NO rest stops!  I did find one eventually and slept for an hour and a half.  Woke up still exhausted but my stomach was pretty good.  And here I sit still kinda iffy but no where near where I was this morning!  And I am still super tired.  

I was so mad about this all though.  I had planned to meet up with Jenn and Tina.  Tina and I were going to do dinner and then I was going to go to Jenn’s for a candle party.  Well thankfully Shawn’s doctors didn’t want Tina meeting me so I didn’t feel bad about canceling on her.  But I was so bummed to cancel on Jenn.  I wanted to meet both these women so bad!  Plus I was dying to hear all about Shawn’s transplant from Tina!  It just sucks because instead of enjoying my 36 hours up in Boston I spent the entire time trying not to loose my meal.  I wanted to see some museums and visit historical places.  Nope I got to do none of that!  So now I will just have to go up there again sometime so I can…maybe!  

I am also going to look into a portable O2 concentrator that I can buy on my own.  Insurance won’t pay for a portable one and my big one is way too large to take places with me.   

But on to some fabulous news!!!  I called my Dr on Friday to find out if I could do the study for inhaled Cipro.  I left a message with the NP and told her to call me back.  Well about 15 minutes later my phone rings and it is the director of the CF program for clinical studies at Penn.  She was super excited to hear that I was interested in doing the study.  She told me it would start in about 2 weeks and that she would talk to Dr H and the NP and see which study I would be best suited for – Azli or Cipro – since they are conducting both.  She told me I was her first interested candidate!!!  It felt great to hear that!!!  Now I just have to wait for the Dr’s ok and then I will be in the study!

Heart broken...

but not in the sense that you all may think.

I have been having mini anxiety attacks at night. I am super worried about my heart. My actual heart not the “love” one. Throughout the day and at night I can feel my heart beating. Sometimes it feels like it is going to explode right through my chest cavity. Sometimes I feel like others can see it beating. Sometimes I will even grab my stethoscope and see just how hard it is beating. But then the crackles from my lungs over ride the heart and I can’t hear didly.

I have this down on my list of things to talk to my DR about at my next clinic appointment on September 24th. I am just worried that I am going to end up needing a heart and lung transplant. My worries are totally unsolicited since I have no idea if my heart is even behaving in a bad way. For all I know my resting heart rate of +100 could be ok. Though I highly doubt “resting” at that elevation is happening. I’m already hesitant about a lung TX so adding the heart into it might be the factor that throws me to a no. Or what if I get the lungs and then a year later I need a new heart? That is a lot to put on the body. Again totally could be worrying for no reason here.

I have been checking my O2 and HR when I wake up in the mornings. Right after my alarm goes off I thrust my finger into the pulse ox and stare at the bright green light. Almost always I am around 90% or lower and my HR is above 115. I just woke up WTF? I am also going to ask about a sleep study. More for curiosity’s sake than for anything else. I am sure my O2 doesn’t drop low enough to warrant supplemental oxygen at night, according to the insurance companies, because they are doctors ya know. Or maybe my heart rate is super high and THAT will get me O2…who knows. But for now I will just lie in bed at night listening to the thump thump of my heart and hope that I don’t freak out.