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.

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!

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.

Vorrei fare un viaggio a Italia

Just a quick update on me since I don't have any more CF related questions to answer.  May is about over as well and I hope we were able to spread awareness to the world.

My energy level and health have been going south for the past couple of weeks.  Well really since the flu.  But the past week or so its been very noticeable.  I am up to 4 treatments a day (vs 3 normally) and I would do 5 if there was enough time in the day.  Today at the gym I had to lower my walking speed because my O2 did not want to go above 90%.  Craptastic.  I have clinic next Wednesday so it will probably be IV time.  

I started classes again last week.  Loving it so far.  Its on the Renaissance!!!  Takes me back to my trip to Florence and Rome and really makes me want to go back!  Someday...It is also making me want to learn Italian.  Again, someday...

In sad news, a friend of mine passed away yesterday from CF complications.  She had been in the hospital for weeks and I was following the updates though I was never fully sure of what was going on.  But I saw the news this morning that she is gone and breathing easy now.  Sad....Please say prayers, send good vibes etc to her family, her husband, her daughter that they may find peace at this time.

Port-A-Cath

Well its done!  I finally got my port!  I think I shall name her Betty, after Betty White.  After all, that broad is still kicking hard core at 90 something....or is it 80 something?  Either way, meet Betty:

Betty and I are learning to get along.  She is a bit sore right now, but so far she is loving her new home.  I found out today Betty is a power port!  So I can get contrast dye injected through her.  She is a Dignity CT Implantable Port.  I have a little card to carry around with me so Drs etc can know what she is.

I have been sleeping pretty much all day today so far.  The meds are kicking my ass.  Last night I was totally out of it for quite a while from the procedure.  At first I thought the Versed was making me nauseous but turns out its more than likely the IV antibiotics I am on.  So looks like I have 2 weeks of feeling cruddy ahead of me.  Luckily tonight I am feeling more like myself.  I was able to walk on the treadmill this afternoon for 23 minutes, then napped for 2 hours lol.  Hoping that the dinner I ordered tastes better than the breakfast and lunch I had early.  Both are things I normally eat but with the nausea I had no appetite.  Right now I am starving so fingers crossed I eat it ALL!  OK, dinner came as I was blogging and I ate all that I could.  The potatoes tasted like ass so I skipped those but everything else is gone.  I even ordered a sandwich for a late night snack lol.

Since the flu is running rampant in the hospital I will be out of here by Monday at the latest.  I might even see about Sunday, if everything stays on course and I have no issues with Betty.  And tomorrow I am getting the MRI of my pancreas done with lots of Ativan so I don't freak out.  I kinda wanna be knocked out but we will see.  If i freak out while in there they may have to ;)

I am also sad to say that my friend Kelly passed away on the 1st.  I had no idea she was gone when I posted the blog yesterday.  I am heart broken.  Kel deserved SO MUCH more than she got.  But don't we think that for everyone that passes.  Her organs were able to be donated to others and her lungs are going to research.  So in the end, Kel was able to help a few people out.  That makes me smile to know she will live on as well.

Insert funny title here

I haven't had a chance to update since I was discharged from the hospital.  It has been one thing after another.  So glad I am busy but I need some rest ha!

I got out on Monday night but didn't get to see the home nurse until Thursday morning.  My kidney's were not processing the Tobra well enough so we had to switch from dosing every 24 hours to every 36 hours.  Seems that has worked.  But because of this, I had to wait to have the nurse come out right before the dose to draw my trough level.  Hence the Thursday morning visit.

I spoke with the docs again about the port placement.  They said my next admission we will schedule it for the morning of it so that I can come in that morning, get it placed and get put in a room and start the clean out then.

Other than that I feel OK.  I had to stop volunteering though, and I am bummed about that.  Thursday was my normal day and I didn't think I was going to make it through.  I was dragging next to the ponies and they are slow to begin with!  I told the coordinator that if I feel better in a few months I would love to come back.  Right now with school, the wedding and the assistantship I am pressed for time and those 4 hours were wearing me down more than they should have been.  I am going to miss the ponies and my volunteer buddies :(

This coming Wednesday I have a clinic appointment so we will see just where I am health wise.  I should be back to base by now I would think.  I was going to do 20 days of IVs but I kinda want to be done on Wednesday.  Guess that will all depend on my numbers!

Admission day 1...or is it now 2?

I was finally let into my room around 10pm last night!  The guy who was in here before me had to wait for his ride.  First he was leaving at 4, then 6 then 8 and finally at 8:45 he was picked up.  It was nice to be able to eat at home and be totally packed but it still sucked.  I had P drop me off at 8pm because he has work today and E was home waiting for Nana to get there.

I spent 2 hours in the waiting area of admitting but they were very accommodating.  More than once I was asked if I was hungry and if I wanted some meal tickets.  I was not so I declined them.  But it was nice not feeling totally forgotten and left in the dark!

When I was finally in and all settled they placed my IV.  It went in well but the nurse commented it was difficult.  Then later on (read 1:30am) they came to draw some labs and that took almost 20 minutes to get all they needed.  The first 2 vials went smooth and after that they dripped in.  My left arm is not what it used to be.

Fast forward to today and my PICC placement.  The Ativan and Benadryl just aren't cutting it anymore.  I am still 100% fully aware.  It took the PICC nurse 3 tries to place it.  She could get it in but it would not thread.  The third time she said "oh finally!"   I commented that I want a port but my doc won't let me and she replied "if I see him in the food store I will run him over with a shopping cart"! HAHA!  She told me I need a port that my veins are too scarred for anymore PICCs.  I agree with her wholeheartedly.  I asked her to write that in my chart so its documented.

A few minutes later the team visited and when they asked about the PICC I recounted what happened and pleaded for a port.  And would you believe it they agree with me!!!  They told me they will take care of Dr. D and her hesitancy to give me.  So looks like after this admission, and the wedding I will be getting my first port.  I am super nervous, but super excited to never have PICCs again.  OK I know I will probably still get PICCs at some point but at least it won't be 3-4 times a year.

Everything is going as normal.  I am getting Zoysn and Tobra again, and right now, as I type, I am getting some Magnesium pumped into me.  Apparently my numbers were slightly lower than they would like.  1.7 is the lowest and I am there, but they would like to see 2.0.  Okie Dokie.

That is about all there is right now.  I am sure my stay will be as uneventful as it usually is lol.

WOW Pretty Low Numbers Again!

Its amazing how you can be sick and not even know it!

I had clinic today and we knew going in I would need a clean out.  My numbers were down slightly last clinic and Cipro really didn't do much for me.  I am more SOB and my energy level is low.  I cough all the time, as usual but I mean really cough.  I have an admission scheduled for next Wednesday, the 12th.

Seems I am on a somewhat downward trend.  I get back up but my lows are pretty low!

Today I blew an FEV1 of .93L or 32%.  Last clinic I was 1.10L or 38%.  And the healthy clinic after IVs were stopped I was 1.28L or 44%.  And last time I needed IVs (May) I was at .95L or 33%.  Before that I was 1.08L or 37%.  See where I am going with this?

I go up and then come back down.  I go up and then I come back down.

Oh well....that is the nature of CF correct?

Today though I was completely overwhelmed.  I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow.  I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic.  I felt overwhelmed by the never ending appointments for CF and LS.  Bu constantly having to do this test and that test and go here and go there.  And all so I don't get cancer and I can stay healthy.

Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy.  Or I might only have 2 years.  I dunno.  Maybe once I hit the "dying" phase I will be more sure of things?  Maybe I will be more confused?  I dunno.  All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).

And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him.  I really miss my old clinic. I don't like going to a children's hospital.  I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait).  I don't like the traffic and the parking garage and the parking fee and well you get my point.  It was just one of those days ya know....

Fevers Still

Just a quick update from me.

My fevers are back again blah. I am so run down.  Sucks.  I even slept a BUNCH this past week.  Holding off for September 6th though so I am all fresh and cleaned out for the wedding (which is 2 months away today!!!).

Hopefully this week I can sleep some more, and get back into exercising and maybe clear out that way.  I don't think it will happen though.  IVs will most definitely be on my radar for the future.

On the bright side I have listed a few items on etsy again.  Check me out!  And if you have any friends having babies anytime soon maybe you could even purchase something homemade for them ;)

Crochet Cyster's Crafts

Perpetually Exhausted

That is me.  Perpetually exhausted.  This Zosyn is kicking my ass!  But it is also working its magic on me!

My lung function has gone up 12%!!!!  I was 32% 3 weeks ago and now I am 44%!  WOHOO!

Overview of then and now:

FEV1 .95L 32% --------------------1.28L 44%
FEF 25-75 .38L 11% ---------------.61L 18%
FVC 1.76L 52% --------------------2.19L 65%

some good jumps there!  So only one more week of IVs and I can be done. Thank goodness.