Clinic Update

I had my 3 month clinic appointment yesterday.  I can't believe I survived 3 months without a call in there somewhere.

All my numbers are the same.  I was 1.09L on October 1st and yesterday I was 1.08L.  37% and holding. I will take it.  My weight was down another 1.5lbs but I am OK with that.  I am still 116 and that isn't a bad weight to be.  I'll worry if I hit 110 or lower.

I got the all clear to star full dose Orkambi in Tuesday.  I go away this weekend so I am waiting till I get back to start.  I should be fine but hey you never know.

Still no need to start insulin.  I had a few weeks where I was running high, even my fasting numbers, but then other weeks where my fasting was normal.  One day they were 66 when I got up!  Kinda low!  So long acting is out.  And my over 200s are not consistent enough to need insulin before meals.  So its keep monitoring and see how they are in 3 months again.  Easy enough.

That is all.  Boring life here lol.  But at least there are no crazy health issues in my life right now.

Follow Up Appointment

Today I had my follow up appointment at MGH after my 2 weeks in house for IV antibiotics.  Today's appointment was actually my 3 month from last appointment but I squeezed in a sick visit and hospital stay lol.

All looked good.  My FEV1 was up to 1.09L 37% so back to baseline.  My weight was down another few pounds but I lost 3 pounds in the hospital and 2 pounds visiting my family which will all come back on once I get back into my routine here at home.

I got to meet with the endo and I LOVE HER.  So much better than the one at Children's who was a bitch to me.  She was super sweet and sat with me for close to an hour going over things.  I had a 3 month log for her to review and she said right now I don't need insulin but to keep an eye on highs.  We may throw a short acting one in before certain meals if I know it will cause me to spike and crash.  She also wants me to get a dexascan (bone density) done before my next appointment.  I swore I had one 6 months after my hysterectomy but it is only showing one right before.  And at that time I was slightly below normal for my density.  So she is also having me start on an estrogen patch to help with some issues and to be sure that my bones don't get too weak.

I am scheduled to start Orkambi on October 13th and I am scared!  Check out my guest post on the CFF blog to see why!  That and the side effects can be brutal the first few weeks.  I am not looking forward to them and hoping I don't get them.  But the side effects are shortness of breath and chest tightness which is my thing.

I got my flu shot today as well.  Hello sore arm for a week lol!

I was also told that my sputum culture showed MAC (Mycobacterium avium complex).  Right now I am not worried.  One positive does not mean I have MAC in there.  Especially since I feel good and I responded to the IV antibiotics, which would have done nothing for a MAC flare up.  So I gave another culture today and we will see what it grows.  Most likely it is a false positive which is very common for it.  But if I grow it again then we will have to reexamine what to do.  Since I feel good it could just be a monitoring thing.  Which would be way better than 12+ months of IV antibiotics!!!

Other than that things are going well.  I see transplant clinic tomorrow and they can tell me to come back in 6 months again.  I may see if I can do yearly.  Seems silly when I feel good to be there twice a year.  But who knows.....

Hospital Time!

I had a sick visit clinic appointment today.  Recently I have been more short of breath and have been having some lung pain.  And since I am supposed to be starting the new drug Orkambi soon, I wanted to be sure I was in tip top shape.  The first few weeks on it people can be more short of breath and tight and since that is normal for me, I don't want to make it any worse.

So Wednesday I will be going inpatient at MGH for the first time, for two weeks.  Then when I get out I can start Orkambi and see if it works on me!

Also, I did a 24 hour urine collection last month to see how my kidneys are functioning.  Well the place we used screwed everything up so I need to do it again.  Clinic tried so hard to understand the results with no luck.  And for some reason the place put down I only had 500 mLs of urine which is nothing when I know I had at least 2100 mLs since I looked before I dropped it off.  So I get to do that again tomorrow so I can bring it with me when I am admitted and then MGH can handle it.  He also mentioned that I might need to see a renal doctor after we get the results.  But we are going to give Tobra another try which I like because my lungs always respond very well to it.

First Appointment at MGH

Today was a very long day.  But it was worth it.  I really like the clinic at MGH and I am going to stay there.

I had a full PFT appointment at 8:30 am so I had to be up and out the door by 6:30.  It has been raining for 3 days and I knew traffic would be a mess.  It was.  PFTs went well, I have not changed since April which is good.  They did a post as well and I shot up 3% from 37% to 40%.  It doesn't seem like much but it is a 9% increase which is huge!  I got a little panicky in the booth when they blocked the air for the test.  But I only had to stop once.  The woman was very nice and didn't get annoyed thankfully!!!  I never had that happen before.  Good old anxiety haha!!!

At 10:30 I had my clinic visit.  I saw the nurse and we went over everything.  It was probably close to an hour we chatted.  I had to give a history and medications etc since I am new.  I talked about some of the issues I have and things I would like to focus on.  We are going to do another OGTT to see how my sugars are.  I am going to monitor and log my sugars so when I see the Endo I have a good idea where I am at.  I scheduled an appointment with her for September.  I am making an appointment with the PT to do an exercise tolerance test and to set up an exercise plan.  I am going to see a gynoendocrinologist who focuses on hormones etc after menopause.  I never knew someone like that existed and I think it will be great to meet with them.  We are going to do an overnight O2 study to see how my numbers are when I sleep.  I haven't been using O2 when I sleep the past month or so and I have been feeling OK.  But I want to be sure I am not hurting myself by doing this.  I got a prescription for Ativan which I loooooove.  So thankful they gave me one for my anxiety.

After the nurse, I met with my new CF doctor.  He was great.  Very personable and open and I felt very comfortable with him.  We talked about everything, my history, action plan etc.  One thing he wants to do is have a 24 hour urine collection done on me to see how my kidneys are actually functioning.  Since IV Tobra has been off the table for a while but my kidney functions have always looked OK, he wants to see if there is a reason why they stopped the Tobra.  I was never really given a reason just that my numbers were off and we tried different doses and times to fix it but it didn't work.  So he wants to see if maybe there is some kidney damage that isn't showing up on my blood tests.  His main concern is that I am treated by the same family of antibiotics instead of getting two families in there.  So if we can add Tobra back in that would be good.

Overall I was there for 3.5 hours and I feel like I got so much accomplished.  I felt very comfortable there, not like I was out of place at all.  At BCH you get shoved in a room and I always feel like I am a caged animal.  AT MGH clinic I was put in a room but I was able to leave to use the restroom and when I left I didn't feel like I was just another person waiting to check out.  I chatted with the woman at the desk and it was nice.  I felt like they cared and like I wasn't just another patient on the list.  I missed that from my old clinic in PA.  I am so glad to have it back.

So a shout out to my 3 great Cysters to answered my numerous questions over the last few months and helped me get set up to move!!!  You ladies rock!!!

Now to send a good bye letter to BCH...

Clinic Update

So clinic went better than I had expected.  The past few weeks I have been waking up at night coughing my face off.  I feel like I have a tickle in my lungs that just won't go away.  I prop myself up some more and fall back to sleep once the fit is over.  So I was kind of expecting my numbers to be the same or even down some.  However, they were up!!!  I went to a whopping 37%!!!  1.11L, I haven't been that high since November right after that clean out.  So the cold weather leaving definitely helped.

There is a good chance I have bad allergies so she suggested I see an allergist.  Adding it to my to-do list.  She recommended I try benedryl if my eyes are too much for me.  Right now I have raw marks under my eyes from itching.  First thing she said to me when she saw me (after hellos of course) was "what happened to your eyes!?"

She introduced me to one of the pulmonary resident's at BWH who was making his rounds with her.  So I got to speak with him first.  He said from my chart and what I told him that I probably have undiagnosed and untreated asthma.  Something I have been saying for a few years now but no one listened.  So he mentions Spiriva, and I am getting an rx for it!!!  Kind of excited about that.  I have heard great things about it and cannot wait to see if it helps my inflammation issues.  I am also doing a week of Prednisone to see if that helps my allergies.

And finally, I did it.  I made the choice to leave my clinic and start new at MGH.  I have an appointment for June 2nd tentatively set up.  I was a little hesitant at first because of the changes they want to make with my care, but then when I went to check out and make a new appointment, they couldn't do it because the summer schedule was up.  So I am supposed to call back in June to make an appointment.  But I will just have to call to get some things sent to MGH and then tell them I am leaving.  No need to cancel any appointments huh?

Oh and OMG!!!  I head back from Dr. H!!!  From Philly.  OMG I was so excited to see his email pop up!!!  He told me to stop in any time I am down there and he will make time for me.  I cannot wait to see him!

Evaluation Date Set

I was surprised when transplant clinic called me the other day to set up my appointments...for February 19th.  Holy soon batman!  Its going to be a very long day with not much time to rest.  But I will sleep good on Thursday...no wait I can't because I have to pick the SD up from the airport.  Great.  Maybe the flight will be delayed in like it was delayed out.

Anyway...I meet with everyone but the doctors.  First appointment is at 9am and the last is at 4pm with a double CT scan of my lungs and sinuses.

After all those tests and meetings are done I only need to get a TB test done and bone density scan and I will be completely up to date on my testing.  That reminds me, I need to call my PCP and set up the TB test appointments.

I assume on May 2nd when I have my clinic appointment they will go over everything with me, and let me know the reasoning for the rush to get this done.  I am assuming right now there is worry I won't do well after the pancreas surgery.  I mean really, with an FEV1 at 32%, if I were to handle the surgery poorly, I don't have much wiggle room do I?  Any small bump is likely to put me in danger and need of a transplant.  Let's hope that I don't get there and that if I do I know what I want....I am still so unsure of it all................................................

Finished Processing

OK so the long awaited, or not, update.

I have had over a week to process all my information and I think I am at a good point.

The thing is I HAVE to get this cyst from my pancreas removed.  The thing is pancreas surgery is a BEAR and I may or may not be in good enough health to deal with it.  The surgeon is worried, and rightly so, about my lung function and bacteria growth in my lungs, and recovery.  Bacteria from my lungs can cause all sorts of issues with the healing of a sliced up pancreas.  My low lung function means I could never come off the vent or I could die.  But not having it removed means I may never get a transplant and I may get cancer.  Neither risks I am willing to take.  I may not be 100% sure I WANT a transplant, but I know I don't want the option taken off the table.

The stats on this surgery are crazy.  30-60% of patients experience post-surgical complications.  5% of patients die during surgery.  Roughly 5% die from complications after surgery.  Scary to me, but I also didn't ask about the stats when I had the hysterectomy.  It seemed simple and easy.  Though when you Google the stats it seems just as scary.  So maybe I have nothing to fret about.

My cyst right now is on the head of the pancreas and the whole head will need to be removed.  The size is 2.6cm right now and we will see in May if it has grown to the magic number of 3cm.  3cm and the surgeon told me they remove it.  But because I have Lynch Syndrome and they are recently learning the affects of LS on the pancreas, they would recommend it coming off, if I did not have CF or transplant to think of.

After the appointment on Tuesday, the surgeon began a chain email with my GI doc, genetics doc, tx team and CF doc.  I was pleasantly surprised he started it that day and did not expect to see my CF doc on Wednesday and hear what had been discussed.  Tx was asking a bunch of questions, as I would expect.  Dr. D. does not see any serious risks (besides the vent thing) to me having the surgery and vowed they would do all they could to be sure my lungs were in the best shape possible.  Luckily I see the transplant doc early May, before the MRI and surgeon again.

As far as CF clinic went...I was down a bit lunch function.  At 32% again, 1.00L exactly.  She wants to see me monthly until the surgery to be sure I am ready.  As she said, I am stable, I dip here and there but nothing drastic.  I am not on O2 full time and only require a small amount with sleep.  Thanks to exercise my resting heart rate and O2 have gotten better so I am in good shape for surgery.  But I am still scared.  I will be scared until the surgery is over.

The transplant coordinator called me earlier this week to let me know that due to all of this, they want me to get up to date on all of my transplant tests again.  So back to the dentist I went, back to the PCP I go for those tests and I get to spend a day or two wandering around BWH getting all my tests done again...except the cardiac cath and pH probe thankfully.  I can deal with CT scans, echos, PFTs, labs and meetings with docs.  I don't know what this means for me.  Do they want to reconsider my case and list me?  Or disqualify me?  I won't find out until May 2nd.......................................

Love to you all...

In the Process of Processing

I met with the pancreatic surgeon yesterday and my CF doctor today.  There is a lot of information to talk about.  But I need some time to process it all.  Once I do I will post an update.

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...

One More Week

One more week to go on Ceftaz...yaaaaaay *sarcasm* I can deaccess on Monday.   I'll be down there anyway for a derm appointment so I am going to go in after to do PFTs.

My numbers are up some 1.05L, up from .85L.  33, almost 34%.  Still not up to my usual 1.11-1.13L but its an improvement.  I don't expect much more since its only Ceftaz I'm on and 2 orals.  Which really sucks because next infection will drop me low again.

She wants me to get a hearing test next time I come in since I haven't ever had one.  Glad.  I don't think my hearing is horrible but I know certain pitches I can't hear.  Whether its age or TOBRA related who knows.

That's all for now.

Home from the Hospital

I am home from the hospital.  I actually got out on Monday but I have been so busy finishing up my paper, that I turned in Wednesday, and appointments, that I haven't been able to update.

I was admitted last Wednesday night and for some reason on Thursday afternoon I spiked a fever.  102.3 at its highest.  No flu, no blood infection.  Nothing out of the ordinary except that fever.  Tylenol brought it down and by Friday night I was back to normal.

The doctors started me on Q36 for the Tobra this time since we always end up at that point anyway.  Seemed to work well.  Then I came home.  I had 3 doses total when the nurse drew my labs Wednesday morning and I was told yesterday to stop taking it.  Kidneys are not happy.  WTF!?  So now I am on oral Bactrim, oral Cipro and IV Ceftaz, aka. cat piss.  Hoping my FEV1 came up a bit so that I can stop the IV Ceftaz before Christmas.  I have clinic on Tuesday.  My body never responds to orals.  This is just wonderful.

Yesterday, Thursday, I had my follow up appointment to my colonoscopy.  It was a little disconcerting.  My colon polyp was adenoma as usual.  That wasn't concerning.  But, like I mentioned before they were finally able to biopsy that pesky cyst on my pancreas.  Turns out it isn't CF related at all.  Its a precancerous cyst related to my Lynch Syndrome.  Like the adenoma in my colon, if left untreated it has the potential to turn to a cancerous tumor.  "Biopsy of your pancreatic cyst revealed benign cells and CEA level 825 with amylase less than 3.  This may be consistent with a mucincous type of precancerous pancreatic cancer."  Fabulous.  We didn't' discuss removing the cyst.  Honestly I was a bit in shock that it WAS something that I forgot to ask about surgery.  She wants to monitor it every 6 months with MRI/MRCP's again, and if it grows, I can talk to a pancreatic surgeon then.  I am going to email her about just having it removed.  I don't want that shit growing.  On the bright side, I don't need mammograms just yet...

That is all for me.  School is over and I am doing lots of crocheting and sleeping.  I will post an update next week after my clinic appointment.

It's That Time Again

Yup it is time for IVs!!!  This way I will feel fabulous (or as fabulous as someone with my lung function can lol) for Christmas and visiting my family.

I blew some really shitty numbers today.  FEV1 of 28%, .85L ha!  Last time, Sept 17, I blew 1.11L, 36%!!!  Holy drop batman!!!  I haven't seen numbers like that since I did the Vertex study in Jan 2011.  I was glad to see them so low because then she wouldn't suggest Cipro and Prednisone first.  She did get an Xray done to make sure I didn't have a collapsed lung or anything like that.  And I don't think I do or I would have heard back by now. 

BCH and BWH made some changes and all CF patients up to age 35 have to be admitted to BCH unless they are listed for transplant or already transplanted.  Luckily for me, I am technically listed for transplant even though I am inactive on the list.  Seems weird to say that.  But that means I can stay at BWH and not get used to another new hospital.  Yayyyyyyy!!!  

So it looks like tomorrow night I will be admitted and then I can be home on Monday, just in time to finish up my grad class.  Lots of editing of my paper and crocheting will get done!  Plus I starting getting a new magazine so I have 2 of them to bring with me.  I won't be bored that is for sure!

Time again for IVs I think

I had to bump my clinic appointment up to this Tuesday from December 17th.  Its only a 2 week bump but with Thanksgiving there was no way I could get in any earlier.

Anyway, my lungs have been really horrible lately.  I am super SOB, super tight, and in a good amount of pain 24/7.  Since my doctor took me off of maintenance Motrin a few months back I deal with minor pain constantly.  But nothing I can't handle.  However, the last few weeks I have been popping it like candy again.  I try really hard to avoid taking it but the pain gets so bad and I get so uncomfortable I have to take it.

I am also back up to 4 treatments a day and sometimes 5.  I barely make it 4 hours before I am sucking back the meds.  Sometimes, particularly at night, I don't even wait that long.  I just can't breathe at all.  I could barely make it up the flight of stairs, going super slow, at the library today and that was only 1.5 hours after my morning treatment, when I am supposed to be in my "best shape."

And the junkiness.  Can't forget the increase in the wonderful mucus.  Not much, but for me it is.

I really hope she just goes straight to IVs and does not want to try Cipro and prednisone first.  I go to PA right after Christmas and I don't want to feel like shit when I am there.  I always do and now I have a chance to be in better shape BEFORE I go down.  I don't know how it will all work anyway since we are no longer inpatient at Brigham and Women's but instead admitted to Children's.  This should be fun... I'm also worried she will want to start IVs but only at home and not admit me since we are in Flu season.  I like starting my course inpatient.  Its nice to have those few days to relax and not do household work, or cook.

The good news is if I do go inpatient I can finish up my final paper and some crochet projects that I have.  My last day of class is December 11th and then I am off for almost 6 whole weeks.  Being inpatient will give me some time to finishing editing my 38 page paper (ha its supposed to be 20ish opps).  Seriously I am really looking forward to a few days to rest.  I don't do that at home, that's for sure.

My appointment is on Tuesday and if I am lucky I will go in on Wednesday or Thursday.  This way too, if I have to do 3 weeks I will be done by Christmas, just ha!

Fabulouso

Today's clinic went a little better than I had thought it would.  They just updated their PFT cart so now there isn't a flexible tube, but instead a rigid stand.  They also changed the predicted values to the standard.  So before I was switching to my calculations, for this blog, I now don't have to do that.  My "new" predicted is 3.06L which is only slightly below what I was using at 3.10L.  The difference is really insignificant (1/2%).   I was expecting to see my % go down because of the new predicted values....

So now on the results of said clinic.  My FEV1 went up slightly instead!  I was at 1.03L in July, exactly 2 months ago, and this time I was 1.11L.  My % stayed the same at 36%, but now it is a true 36%.  I shall take that 3% increase (my calculations were 33% for 1.03L last time - are you as confused as me?!?!).  However, I am still lower than I was right before I was admitted back in June when I was at 1.13L.  But that is a small difference.

My weight was down 5 lbs, but my appetite has been sluggish and with the exercise it is to be expected.  She was not worried about it because I feel FABULOUS.

Yes FABULOUS.  I feel great.  There were no issues to report.  No extra coughing.  No fevers.  No chest pain (besides my regular which hasn't been as bad as I had expected given my no Motrin usage now).  Nothing, nadda, zilch, zero.  I told her my O2 has been higher with rest - usually I am around 93-94% on room air at rest, sometimes 95% if I sit long enough - but lately it has been as high as 97-98%!  And my exercise tolerance has improved dramatically too.  I have started doing rolling hills on the treadmill and strength training twice a week.  Once with the trainer and once on my own.  I don't push myself as hard as she does, but its easier to lift heavier than you can with a spotter.

I was told to come back in three months (something I haven't done since moving up here) and call if there are any issues in the mean time.

I could not have been happier with today.

They Say the Numbers Don't Mean Anything

Well Tuesday I was de-accessed at clinic.  So glad.  I was totally over IVs.  Unfortunately instead of my lungs improving with another week they went down.

I was a little annoyed at first though.  When doing them, the RT had the screen faced away from me so I couldn't really see the results.  I usually see them.  No biggie.  She was a new one for me.  So after the first blow she says "oh good you went up from last time."  So I am thinking sweet maybe I hit 40%!!!  Second one she says "even better!"  So I am pumped to get the print out.

I don't know where she was looking.  My guess is FVC/FEV1 instead of FEV1.  That is the only one where I am slightly better than last week.  My FEV1 was 1.03L at best.  Remember last week I was 1.10L.  And before the hospital I was 1.13L (.95L got me admitted).  WTF?  I was not going with another week of IVs though.  I feel fine.  I wouldn't have guessed my numbers were down.

I also lost 3lbs from the week before.  I was shocked.  My home scale stayed the same.  To be honest I am not worried.  I don't eat as much during the summer and with the exercise, I am bound to shed a few pounds.  If I lose too much more than I will start to worry.  And once fall hits again I will pack the pounds on again I am sure.

She also gave me a one week trial of the TOBI Podhaler.  I am supposed to wait 2 weeks then give it a go.  I am nervous though considering the reactions I get from any inhaled antibiotics.  I don't want to be spazzy for a week.  Plus I am back to feeling great at the gym and I don't want to ruin that!  So I don't know if I will try it or not...

I also found out I am culturing Steno Malt again.  Bleh.  So I started a 2 week course of Bactrim last week.  Could be why my numbers are still down, but I was culturing it when I was in patient too.  So it doesn't explain why they went down from last week, only that they are down overall...maybe.

Feeling Better...Almost Normal

Well let's see what has been going on the past two weeks?  I was admitted on the 28th, Friday.  Originally I was supposed to go in Thursday, then it was pushed to Monday then it was Friday.  Luckily they did Friday because there was no way I would have been out on time for the 4th festivities had I gone in on Monday, the 1st.  My TOBRA levels were high after just two doses so they stopped it for one day and restarted me at a lower dose and every 36 hours.  I am doing that schedule now at home too.  I am also on Zoysn every 8 hours.  My normal IVs schedule.

I had clinic follow up today.  My numbers are back up to 1.10L, where May and June I was 1.13L and 1.11L respectively.  So I am pretty much back to base line.  We are doing one more week though to see if I can get anymore from these old blowers.

I also got a new toy!!!  The NP gave me a spacer and an Rx for a duoneb inhaler.  So now when I am out and need a treatment I don't have to fret, or breathe like shit.  I can keep it in my purse and use it when I need it in place of a nebulized treatment.  This will be great for amusement parks and the beach!!!

As far as feeling better, I am getting there.  My O2 is almost normal with exercise, but my tolerance is way down since its been almost 8 weeks since I had to slow my pace.  So I need to build that back up some.  I am coughing up a storm, all dry inflammed coughs.  No fun.  I miss my mucusy cough from when I was a kid...

Till next week.....

Hospital Time!!!

I was SO glad to see my numbers were horrible today!!!  It confirmed what I KNEW and also made it so I didn't have to beg and plead for a round of IVs!

Last time I was 1.11L 38% this time my highest was .95L 33%.  But my other 2 were .90L and .89L so that .95L was way up there!!!  Since I have started using the correct predicted values on myself, I am really at 30% with my highest and 28% with the lowest.  (The NHANES is the one used by most CF centers and I believe is the accepted one for the CFF).  Anyhow, we are looking at Thursday afternoon/evening to go in...hopefully.  The coordinator was out today so she will have to set it all up tomorrow.  If I can't go in Thursday then it is Monday and that I will not be happy with.  Thursday next week is the 4th of July and I don't want to miss the fireworks and parade!

Drama Queeeeeeen!!!

I feel like a dram queen every night.  I know, me?!?!

The Prednisone has been great giving me energy and keeping the zzz's away, but it hasn't been great opening up my tight lungs.

Last night I started having a small, tolerable, panic attack because I was about to do my FIFTH breathing treatment for the day, only 2 hours after the last one.  I NEVER do that!!!  But I was about to go to bed and  my lungs were so sore and hurt so much, and were so tight, I wanted to try and open them.  Didn't work.  As I climbed into bed next to P, complaining about the pain and the uncomfortableness, I felt like some drama queen looking for attention...

We got home from our cabining weekend away around noon yesterday.  I immediately went into Prednisone induced overdrive cleaning and putting things away.  The laundry room shelves got re-arranged.  The TV stand in the bedroom got cleaned and sorted.  The floors were vacuumed.  The fridge was pulled out and I scrubbed behind it as well as the whole outside of it.  5 loads of laundry were done (4 sorted and put away).  And we took Major to the park to play for a bit.  All of that - besides the laundry - were done by 6pm.

I know I overdid it.  But we relaxed on Saturday and my lungs were having a hissy fit then too.  I am going to TRY to take it easy today, exercise, crochet, read for classes, and see if my lungs don't want to jump out of my body by 10pm again.

I also wish CF doctors could feel this pain and understand that yes Motrin on a daily basis in the dose I was taking is not fabulous for my kidneys/liver whatever, but fuck man, MY LUNGS HURT.

I was able to get an appointment for June 25th to follow up with the regiment I am on.  She said 3 weeks when I left but the scheduling was all screwy so I said I would call end of this week to schedule after July 1.  Decided to make it exactly 3 weeks (which ironicly the appointment I made is the same one I cancelled to go in last week to see her), so that if this does not help, I can get in to the hospital and start IVs before my 2nd summer class starts July 9.

I Wanna Bulk UP!

No not really!!!  But let's hope my plan of action doesn't make me.

Clinic was a bit disappointing.  As I posted last time I feel like ass, like complete and total shit.  So what happened at clinic?

Nothing...ok stuff happened but I am eh about it all.

FEV1 the same.  I went from 1.13L to 1.11L, 39%-38%.  Nothing worrisome there.  But no one seems to care that when I have an appointment at 9:30am my numbers are going to be waaaay better than when it is at 11am (this was a moved appointment so I had to make it that early if I wanted to go before June 26th).  2 hours post-treatment is great for me in the mornings.  4 hours post-treatment not so much.  Get me in the afternoon and that is my PERFECT time because that is pretty much how I feel from about noon till I go to bed around mid-night.  9am is NOT my normal lung feeling, nor capacity.  But that doesn't matter in the medical world apparently...Anyway.

When I explained my symptoms I felt like my doc was thinking I was lying.  Like I was looking for IVs for fun.  Yeah fun.  Let me tell you how much fun diarrhea, nausea and pure exhaustion are.  But they are worth it when you feel great after.

So instead what did I get?

An x-ray to make sure nothing was wrong in there.  Only some extra smudge on the lower lobes.
2 weeks of 750mgs of Cipro twice a day.
1 week of 20mgs prednisone twice a day
1 week of 20mgs prednisone once a day
30 days of 30mgs of Prevacid twice a day (been having a lot of extra heartburn lately)

Hoping the prednisone opens me up.  If it doesn't I am going to be so mad.  I can't fit a hospitalization in until beginning of September without missing classes and  I don't want to do that.

Oh well.  Camping this weekend and maybe the steroids will make it easier for me to bike ride, go on a scavenger hunt, and swim....

Everything is Vanilla Right Now

Last Tuesday I had my clinic appointment.  I also met with the respiratory therapist to go over my vest settings and airway clearance tactics.  It is a new thing they are doing to try to get people more aware of how to use their devices and improve their health.  Nothing really changed with my settings.  She mentioned I should schedule in breaks between frequency intervals so I can do some huff coughing.  Its hard when I am not all gooey to get stuff up.  I told her I do the vest not because I feel better when I do it, but because if my lungs still crap out I can say well I am doing everything.  Its the truth.  And at least I am doing it!  Faithfully!  Seriously its been like 3 months now and I have missed a few days to being sick and that is it!  Considering it had been months before this is like wicked amazing.

Clinic was clinic.  Nothing changed.  I am more run down and feeling crappy but I also had the flu and she told me to finish the 2 weeks of orals I was given and see how I feel.  I go back in June and if I am crappy still I will see about IVs.  This is the longest stint without IVs since I moved up here.  I attribute it to my exercise regime.  Whether or not that is true I don't know, but I feel pretty good considering its been almost 5 months since my last course.  My lung function was the same 38%.  Weight was down 3lbs thanks to the flu.  O2 normal, HR normal, BP normal.  Booooring lol.  Nothing at all exciting, and quite frankly I will take it.

I am a little disappointed though.  My clinic is participating in the next Vertex trial and I was asked to do it, if I wanted to.  Unfortunately you have to have an FEV1 of 40% or higher, and even with a treatment I don't hit that mark.  So I am still out.  Kind of sad.  I enjoy the studies.  Maybe more exercise will bump me up more and I can do another one....this makes two in two months I was shot down.  le sigh...