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.

My Kidneys

My Kidneys....

I am not quite sure what is up with them.  Or if it is even them causing me issues.

Back in March I had a BAD UTI.  So bad I was peeing purple....yes PURPLE.  I should have taken a picture it was so weird!!!  Even the nurse and doctor commented they had never seen pee that color.  Fabulous.  I got an Rx for Bactrim and within 36 hours my pee was normal again.  I was on a study for colon cancer and contacted my study coordinator to let her know.  I thought this was my first UTI.  Turns out it was my NINTH.  I never knew about the other ones because they were discovered when I was inpatient and they cleared up with the IV antibiotics I was given for my lung infections.

So no one ever told me about them.  I had a feeling something was going on because each admission I would have to do 2-3 collections since the first and sometimes second would have microscopic blood in it.  But no one ever told me they were UTIs.  For 3 freaking years I have been having them!!!

Fast forward to my MGH appointment in June.  We had discussed doing a 24 hour urine collection to get an idea of how my kidneys are functioning especially since I am no longer taking IV Tobra.  So Monday I start the collection.  I had been feeling like I was getting a UTI since it felt a little funny to pee but I just ignored it.  Monday night, more blood in my urine.  So I am freaking out that I will have to re-do the dam collection again (I had done it on Thursday not realizing the place I had to drop it off was closed Friday!).  I called my CF clinic Tuesday and she said not a big deal it actually helps because then they can see what is going on better.  And then I called my PCP to go in and give a sample and get more Bactrim.

Now this is 2 UTIs in 5 months that have visible blood in them.  My thinking is that I am usually getting them but I go inpatient for IVs before the visible blood starts.  But now I am going on 6 months without an admission so my body isn't getting the drugs to combat them.  So I pee blood.  March's I have no idea what that was all about.

Hopefully the 24 hour collection will reveal something about what is up with these infections.  They are not fun at all.  And I cannot figure out a cause for them.  I just hope it isn't anything serious.  My mind is obviously thinking my kidneys are failing or I have UT cancer since that is part of Lynch.  But my fingers are crossed its something silly that can be fixed easily.

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.

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!

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!

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.

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....

Bitten by the Flu Bug!!!

Yup, it got me, a little late in the season but it got me.  It started with Peter last weekend and I picked it up this weekend.  My CF doctor told me to come to the ER if my fever spiked again and since it was 103 this morning, we decided to take a trip.  Some fluids, a nose swab and a chest x-ray later and it was determined I have Flu B.

They are keeping me over night to monitor me and make sure my breathing doesn't get any worse.  Its very hard to cough since it feels like I have glass shards in my chest, but hopefully the TamiFlu and fluids will help with that.  Looking forward to being back to normal and getting my paper done this week.  I finished one yesterday and printed it out so I am going to make use of my time in here and get the other one done as well as the assistantship stuff and practice for my presentation on Thursday.  I have so much to do this week it really sucks the flu had to hit NOW!!!

I have an appointment with my CF doctor next Tuesday, the 7th, so we will see if this flu did anything to my numbers.  I was expecting to be put on IV antibiotics next week, but who knows now.  Right now I am just getting IV fluids, no antibiotics.  But that could change tomorrow depending on what my culture comes back with.

I might as well update on everything while I am here right....Thursday I started working out with my personal trainer.  LOVE IT!  I was so sore on Friday but a good sore.  I am looking forward to being in shape and toned up.  I cannot wait.  Thursday I also had transplant clinic and I got another clean bill of health and a "see you in 6 months" as I walked out the door.  Love that too!  I go back in 6 months and that will be right when I am finished with the PT so maybe my numbers will have improved some.  She was excited for me when I told her I want to look into going back to work.  She thought that was a great idea, as long as I figured all the SSDI and disability issues out.  I've got a year to do it...I had seen them right before the honeymoon from hell so I was telling her all about that and she was so shocked my lungs crapped out as much as they did on the plane.  She said they would have had to make an emergency landing had I not been wearing my O2 for sure.  She said some people just respond totally different to flying than others....yeah ya think lol.

So that is all.  Hopefully I am out of here tomorrow and back home curled up in my bed.  It took me forever to get out of the house today because I didn't want to move.  103* fevers will do that to you...

Honeymoon I would like to Forget

I don't know how to even describe this honeymoon.  Its supposed to be the best vacation of your life.  Its supposed to be filled with romance and happiness and sex.  Instead its been O2, ERs and medications.  There has been sex don't worry about that.  That could possibly be the culprit of my latest issue.

Sunday night I started getting super short of breath and feverish.  You can see from this picture that my lungs were not happy campers.  We had visited P's family during the day and went to Downtown Disney that night for dinner and to get some souvenirs.  I had a hard time getting up the stairs into Planet Hollywood but I made it.  However, by the time we left I was gasping for air.  This was taken when I stopped to catch my breath.  Not good.  We kept going because I refused to leave without stuff.  Of course, every store we went into I felt like I was somewhere else.  Totally disoriented and couldn't think straight.  We purchased the one thing I was not going home without (something with our names on it and the year to commemorate this happy occasion) then P got the car and picked me up.  By the time we got back to the hotel I was feverish.  Luckily I didn't spike too high and only ran about 100.1.  I was achy too so I did my nebs and went to bed.

Monday I woke up and I felt better.  Sucked on my nebs again and we decided to go to breakfast and Walmart to get a movie.  We figured Tuesday we could go to Hollywood Studios for one more day of Disney fun.  I was really lethargic but my fever was gone.  I had stopped the prednisone on Saturday night so it made sense I was going through some withdrawl.  They didn't taper me down.

I hung on the sofa the rest of the day while P did things around the hotel.  I was worried I hadn't been pooping right so I dumped some Miralax in Gatorade and drank it all night.  My fever started to come back later in the day and I took some Motrin.  It wasn't helping and it eventually spiked at 102.2.  I was a bit nervous so I emailed my doctor.  It was late though so I knew I wouldn't hear back from her yet.  P went and got me some Tylenol and within 20 minutes my fever was down.  However, I started to get this pain in my abdomen.  It felt like gas pains so I popped a few gas-X and went to bed.  By 5am I was awake with horrible pain.  The gas-X wasn't working and my back was hurting now too.  I assumed from laying around all day.  It was like an inner tube around my center.

My fever was gone and I felt totally normal, besides the pain.  The Miralax hadn't worked either so I was starting to worry I might have a blockage.  So we decided to hit the ER again.  Luckily there was no wait at noon on a Tuesday.  I got right in and they gave me some Dilaudid for the pain.  I had a CT scan done again and blood work.  The doctor came pack with a double kidney infection.  Not just one kidney, but BOTH.  The prednisone most likely weakened my immune system and help lead to this.  

So now I am inpatient at Dr P. Phillips Hospital in Orlando getting IV fluids and IV antibiotics.  P is at the hotel and might go to Disney today so we don't waste all the tickets.  

Me?  I just wanna go home.  I am so over all this.  Its been hell.  I can't stop crying now.  I was good until last night.  Then its been waterworks central.  I just wanna go home.  I don't want to be in some foreign hospital with people I don't know while my husband is in our hotel room spending a night alone.  I want to spend our last night of the honeymoon together.  

I want to scream.  At least the view is nice right?  :(

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.

Clinic Results

Clinic was pretty much what I was expecting.

I went from 1.08L to .95L (37%-32%).  So it is definitely an admission for me.  Luckily we are waiting till Monday so I can be home this weekend in case P gets a call.  But if my O2 sats dip low or I feel worse I need to just go right to the ER and be admitted that way.  I don't foresee any issues though.

I am actually worse now than I was back in January of 2011 right after the Colistin incident.  And those numbers were before my Albuterol treatments!  And the first one I did I stopped within a few seconds because it triggered a coughing spell.  Never had that happen before.  My airways are definitely not happy campers right now!

My weight is still high for me but it is still in range of where I have been before (56.7kg or 124.7lbs).  So I am not worried a whole bunch about that anymore.

I do need to call and reschedule my transplant clinic appointment.  I have been putting it off but I need to get back on track with that.  And also getting all the info sent to Lahey Clinic again so I can restart the pulmonary rehab program.  I am really hoping that because I am working out 4 days a week on my own they will let the rehab slide....but I doubt it.

My O2 study results had not been sent to her yet as of today either.  So I am hoping by Monday they will be in.  I kinda sorta do want my O2 back, but at the same time, its been cheaper not running that thing every night!

IVs are on the horizon

Tomorrow I have clinic and I am not looking forward to it.  The past week my lungs have really gone downhill.  My ability to walk has decreased - the speed on the treadmill has gone from 3.2 to 2.7 and I still feel like I am running.  I am requiring DuoNebs at least 3-4 times a day (I usually take them 2-3 depending on what I do and how long I am up).  And my appetite is kaput.

My lungs are super tight with everything, even just sitting around.  Interestingly enough my O2 and HR have been fairly good!  I haven't dipped below 90% all that often considering I am gasping for breath a lot.  Of course on my ride home today, as I walked back to my car after stopping at a rest stop, my O2 was 81% lol....oppsie!

Pretty sure I am in need of my IVs.  Now I just have to decide if I want to go in this week, or next week.  I will decide once I see what my FEV1 is tomorrow morning.  If I have declined a lot then I will go in this week, if not then I want to wait till next week since P is on call this weekend.

Hospital Stay

This will be a long post so settle in a comfy seat, put your feet up and be prepared to read...

I went into the hospital on Thursday expecting to get my picc line placed on Friday, have a CT scan at some point and a colonoscopy on Monday.  My biggest worry was the picc placement given the reaction my body had last time to it.  Turned out to be the least of my worries...

Thursday night they wanted to get an O2 reading done on me again.  I had had that one back in November after my 3 week IV course and it showed I didn't need O2 with sleep.  Of course my lungs were in great shape so I didn't need it.  Thankfully they did another.  However, it was different than the first one I had.  They hooked me up to the finger monitor and the monitor was hooked into the nurses station computers.  Unfortunately the sound could not be turned down lower than 10% so when I would dip below 90% it would beep and I would hear it.  Every time I relaxed and just about feel asleep I would dip, it would beep and I would wake up.  Finally she came in and put the O2 on me since it kept beeping.  Slept like a rock the rest of the night!

Friday morning bright and early I was wheeled down to have my scan done.  I didn't have my morning meds yet so inhaling and holding my breath was not happening.  Of course they ask to do so and I try but I failed.  Such is the CF life.  By the time I got back to my room the picc nurse was ready to poke me.  Dr BE (name has been changed) ordered a shot of Benadryl to be given to me via IV so I would be awake but not anxious.  It worked.  I was pretty much dead to the world for the rest of the day!

PT came to my room to do a 6 minute walk test on me.  I did well considering I am in the throws of an exacerbation.  I walked 1270 feet in 6 minutes (average for someone my age is 2500-3000 feet) and only needed 1L of O2 while walking.  We were going to attempt no O2 but my sats just standing there were 89%.  The Benadryl really messed my lungs up that day.

Saturday was to be the start of my colonoscopy prep.  Just clear liquids all day which meant jello and chicken broth.  Yum!  Sunday I started the clean out part.  By the time I went to bed that night I was pretty sure I was ready for the next day.  My CF gut had other plans however.

I was able to do the upper but not the lower.  I was too full to get any ideas of what was going on in there.  When she told me this I got upset.  I was frustrated, annoyed, angry and depressed.  I had already felt kind of crappy to begin with before the procedure and afterwards just threw me over the edge.  When I met Dr BE in my room later I was crying.  The nurses were great and really tried to cheer me up.  Poor Dr BE.  Last time I was in I was crying with him and again this time.  The guy must think I am a mess!  I could see the sympathy in his eyes and it made me feel better.  So now instead of looking forward to a yummy solid meal, I had to do another FULL round of cleaning out.  But what was the question.

At first Golytely was the choice.  But given that last time I tried it I basically got one cup down and threw up, I wasn't for trying it again.  I decided to just have an NG tube placed and have them push the Golytely down in and have it work that way.  That didn't happen.  We tried the placement and I think I had an anxiety attack during.  I could feel it scraping my chest and then I was gasping for air.  A cyster had told me getting the tube through the sinuses was painful.  Ironically I barely felt that part.  They pulled it and we decided to give the Mag Citrate a go.  It was not as bad as I had remembered it from when I was 18.  I drank 3 bottles of that and stayed up till 2:30am to make sure there wouldn't be a mess in the bed overnight.

Colonoscopy take 2 was a success.  I was still not entirely clear but enough so that she was able to remove the polyps she found and send them out for biopsy.  So lets review this.  Friday night I took 2 ducolax to start the process.  Coupled with no food except a turkey sandwich that day, I was pretty empty - stomach wise - by Saturday.  Saturday was just clears.  Sunday the same thing, but I took 15 one dose packets of Mira-lax.  Monday I was not clear at all so I took 5 more packets of Mira-lax and 3 bottles of Mag Citrate
(which is a normal dose for a clean out).  All in all I did more than 2 full clean out regimens and was still not clear.  WTF?!?!?!?  Talk about a slooooow system!  I'm not sure how many polyps they removed but when I go to clinic this Wednesday they should have the results.  Last time I had a few benign polyps and one that was pre-cancerous.  Hopefully these are all benign.

Today I got the results of my CT scan.  Well I should say today I was lucid and sane enough to hear the results.  It was quite the informative scan I received!  My lungs show obvious signs of CF.  There was a pocket of infection which of course, was why I was there in the first place.  It showed some nodules on my thyroid which my doctor is not so much concerned about, but given my family history of cancer he gave me a number for an endocrinologist to see (he joked that I was on my way to seeing every specialist doctor at BWH!  not far off either).  My thyroid is working properly though.  They ordered blood work to be sure there were no issues there.  They also saw lymph nodes in my lungs - odd - that they want to monitor, again because of the family history.  So in 3 months I will get another CT scan done.  And finally they saw an air pocket below my heart that is undamaged but inaccessible.  It looks like I had an infection when I was a child and the healthy lung grew around it and blocked this part off.  So basically the lower lobe of my lung is shut off, yet unharmed.  It could explain the low lung functions even as a child.  That was it for the CT scan.  I told you it was informative!

My culture showed that the Steno Malt is still there.  Seems to me it hides when I am "healthy" then rears its head when it feels like it.  I have a feeling this is what is going to send me to transplant land much sooner than I had thought.  Speaking of which, my records have been sent over so I just need to call and make the appointment to meet with the team.

Funny...after hearing the words the first time I assumed, or rather hoped, it would not be mentioned again for a bit.  Now every time I see the team it is mentioned.  So I guess it really is something they feel I need to pursue now to be safe.  I've wrapped my head around the idea even if I am still unsure why me.  Though I know the answer, I just wonder why me sometimes.  And not in the "woe is me" way.  But more along the lines of "but I'm not THAT sick, am I?" way.

Thank you for reading this jumbled mess of a blog post.  I will be sure to keep you all informed of what results come back and all my upcoming appointments I have with the 5 different docs this month...

(edited - this was posted on Wednesday but for some reason blogger was messed up and it didn't register till Saturday)

IV Time

IV time we go, IV time we go, hi ho the dairy-o IV time we go

Yep I am almost 98% sure when I go back to see Dr D she will want to put me in and I think I shall agree.  My SOB-ness is ridiculous.  I wheeze so bad I think the girl next to me in class tonight heard me during the "lull" in the movie.  I've been walking MUCH slower than I normally do.  And I cough up goo almost all the time.  Add in some streaking and yeah its time!

My next appointment isn't until April 27th but I am calling tomorrow to see if I can move it up some.  Ironically I was supposed to go in tomorrow but thought it was too soon since she wanted to see me in 2 months and I had scheduled it for 1.

I orginally changed it because, yes, it was only a month, but also because I was trying to wait till classes were over before going in.  And I wanted to get my new laptop first too.  With the new laptop I can get homework done while in there.  But now I don't want to wait another month or so before getting this taken care of.  I'll just make sure I can schedule to go in on a Wednesday and be home on the following Monday so I don't miss any class time.

I have also been exercising daily doing Jillian Michaels no more trouble zones.  However, I can only do the 5 minute warm up and then I am exhausted and done.  5 minutes of straight cardio kicks my ass and I don't even do the jumping jacks!  I do use my O2.  The first few times I didn't just to see and my HR was hitting over 170!  So now it stays around 155-165.  With my O2 around 92%.  So not too bad.

One thing I MUST ask Dr D about is a port.  I will NOT go through that horror of a placement again like I did around Thanksgiving!!!

So I shall keep everyone posted.

Clinic Appointment and other stuff

I think I may have jiinxed myself on my last blog post.  Nothing happening HA!

Yesterday something happened....something I wasn't expecting.

Clinic started out great.  Weight was up slightly, my O2 was actually at 95% on room air for once, no temp.  Then came PFTs.  I started at 1.08L (36%) and ended at 1.16L (39%).  I'm quite the jumper even on a daily basis as you can see.  My baseline is around 1.31L give or take a few .01's.  I was happy with it considering I have been junkier lately and last week I was streaking almost every day, all day. 

My doctor came in a bit later and I told her about the junkiness, the streaks etc.  I've been very tired lately, like all day, not just when I get up.  Needing naps even if I can't take them.  Using O2 at night again.  She gave me an rx for oral Cipro for 2 weeks.  We both hope it helps and that I can avoid IVs. 

Then came something I wasn't expecting....

"I'm gonna give you the number for the transplant clinic over at *&%#(*%!@.  I don't think they will want to start the evaluation process right away but I do want you to get in and get to know the team".

WHAT?!?!?!?

She then rolled over to me (wheely chairs lol) and explained to me why. 

I can't use any inhaled antibiotics.  I responded very well to Inhaled Cipro in the study but that was before my resistance to TOBI started.  So the chances of me being able to tolerate inhaled Cipro are very slim (supposed to be out soon I have heard).  Oral antibiotics usually don't work, but its fun to try.  I do use O2 on a daily basis, be it sleep or exercise.  When I get sick, I get SICK...numbers get low, but I do bounce back.  However, only Prdnisone and IVs keep me above 40%.  Neither of which I can stay on constantly.  I asked about maintenance Prednisone and she said they frown on it because it deteriorates your bone density and you need to be on it constantly after transplant so they limit the use of it pre to what is needed. 

So while I am not in dire need of being listed, I am a good candidate to at least start the process and get to know who will be cutting my chest open at some point.

I called my mom and boyfriend to tell them.  I am hoping both will come to the appointment with me as I know I don't want to be alone when I go. 

The phone call I am dreading is to tell my dad and my brother.  I like to shelter both of them from the "trueness" of CF.  Not that they can't handle it but I just don't want to "hurt" them.  Hard to explain yet I am sure many of you know what I mean.  At some point I will have to tell them both, seeing as they are both, hopefully, part of my support team. 

I'm now at the stage where I kinda just wanna hide in bed and see if it all goes away.  Good thing the social worker gave me a number for a psychologist yesterday (I had asked her a few months ago if she could find me one experienced with chronic illnesses and she came in before my doctor yesterday to give me the number).  Not only do I need to make an appointment with the ENT and GI docs, I now need to make one with the transplant team and the psychologist. 

Comfy bed? Lots of covers?  Sure sign me up!

PICC Placement Fiasco

I don't know what to say about this even except that I have never been so scared in my life.  I thought I was going to die and I kept repeating over and over in my head that I didn't want to die this way.

Rapid Response had to be called during my PICC placement.

I don't remember too much after the initial excitement, and I only remember bits and pieces during.   What happened was this:

The PICC nurse was placing the line bedside, as I have always had done.  She had a little resistance at first but it finally went in.  As she got to the end, the walls started to close in, my stomach dropped to the floor and I thought I was going to pass out.  Then my throat closed.  This was in seconds.  I told her something was wrong and started yelling I couldn't breathe and to help me.  Next thing I know there are people everywhere, a nurse rubbing my head telling me everything will be OK and a doctor rubbing my feet shouting orders.  I heard them mention the code cart, rapid response team, Benadryl and O2.  A mask was placed on my face at full force O2.  Benadryl was injected into my IV line (not the PICC).

I remember seeing a ton of yellow....the gowns they were all wearing.  Looking back I am quite impressed everyone gowned up before coming in.

I remember thinking all I wanted was Peter and I know I mouthed it.  I was crying, hoping that I wouldn't die. If there was any doubt ever about how I felt about him (which there NEVER has been), this whole thing cleared it up.  All I wanted was him.

I was in and out of consciousness.  When I began to come to, I could hear more.  I saw the room empty when they brought the x-ray machine in.  Felt my body moved forward for the plate to go behind my back.  I remember my shirt being pulled up to allow the heart monitor stickies to be placed.  I remember people saying to hang in there.  At one point they asked me to open my mouth, I remember thinking that I didn't want to be vented.  Apparently I didn't open it wide enough because they kept repeating to open wider until finally I did.  I laid there expecting the tube to be put in at any second.  Luckily, I was spared.

Everything was blurry.  I was crying, though not hysterically, my mask was partially covering both eyes and I was groggy from the Benadryl.

I could feel the tightness on my arm from the PICC and remember thinking that I didn't want it and I would deal with peripherals until I could get a port on Monday.  I still have the PICC and it works great.  Looks great and doesn't hurt at all.  The PICC nurse came in later and mentioned I was yelling for it to be removed.  Opps, I don't remember that!

My doctor came in at some point.  I know I looked around for him but couldn't see him earlier.  He hadn't been there at first.  He was across town in a meeting but came as soon as he was paged.  He has been in a few times since then and has been a huge support in this.  He wants to make sure that this doesn't happen again while I am here.

I just finally came off of the heart monitor about an hour ago.  They were watching my O2 and blood pressure.  Both were low.  I am on constant O2 right now because when I remove it, I de-sat to below 90%. This is a side effect from the trauma of the morning.  Something that can and will improve over the next day or two.

I'm shaken up over all this and realize just how bad it can be and how something so "trivial" can cause something so major.

I am glad to be awake, vent free and alive.

(P.S. this happened Friday, Nov 19 and was written that night)

A few days have passed now since this happened and I am learning more and more.  They are thinking what caused this is the nurse pushed the PICC in too far to my heart.  This happens very RARELY but when it does it causes all sorts of troubles.  With me, the troubles were multiplied because of my already horrible functioning lungs.

As I meet more people I am also hearing more and more.  My nursing assistant today was there on Friday and she was telling me some things.  Like how people were outside of my room praying I would make it.  How everyone was pulling for me because I am so young and too young to die.  I won't lie, this made me cry.  I know that part of it is because know one knew what was happening, but also that I was in a pretty serious state for a short amount of time (though to the people working on me and to me I am sure it felt like an eternity!).

I wasn't going to post this originally, but you can see I changed my mind.  I've told everyone that needed to know what happened, so now the rest can hear about it.

I am fine now, no adverse effects from the fiasco.  However, I will be using IR from now on for PICCs unless I decide to take the plunge and get a port.