Monday, October 6, 2014

10 Weeks Post Whipple

It's about time that I update this thing.  I have been really busy and that is great!

Things are pretty much back to normal here.  There is still some pain in my lower ab area but only when I cough.  I think my muscles are recovering and the trauma of coughing every few minutes is not helping.  It will go away in time I am sure.  The skin around my incision is now peeling.  I started using Mederma on it to make it less red and that's when I started peeling.  Related?  Maybe.  Not too worried though.

As far as what I was expecting post things are different.  I do not need insulin thankfully and I do still need enzymes of course.  My body does not seem to have changed much missing a piece of my pancreas.  One thing that changed is my need for Miralax daily.  I no longer need it every day.  I am still working on when to take it though and it could be a few months till I am back to knowing and on a schedule.

The results of the surgery showed that the cyst was entirely related to CF.  There were no signs of cancer at all.  Great news!!!  It does mean this surgery was technically not needed but I am glad to have had it done.  Now any other cysts that grow large like this one and read the way this one did we can chalk up to CF and not Lynch.  Transplant was pleased with the results of course and are happy to have me as a candidate again.

Here is a picture of my torso.  Its a little outdated now but nothing has changed on the recent picture.  Except maybe a few more pounds added to me ;)



Overall I feel pretty good.  My lung function was down a good amount at my clinic visit 2 weeks ago so we started oral cipro to see if it gives me a boost.  I didn't feel as low as I was but it makes sense I am down.  For the first few weeks after surgery I could not cough like I usually do.  So things have been sitting and brewing in there.  The past 7 or so weeks I have been able to cough better and to get stuff up.  My FEV1 was at .89L (29%) down from 1.15L (38%) in July before surgery.  So yeah a significant drop.

My dilemma is this though.  Why is my FEV1 so low, yet I feel like I am functioning at a much higher one?  I know I know, everyone is different, it just seems so strange to me to have an FEV1 of 29% and yet still be able to carry boxes up and down steps (slowly and immediately after my nebulized treatments and only a couple with breaks and coughing fits - but I do it!).  Why is it that I can jog on the treadmill (even if only for less than 60 seconds at a time) if my numbers are such shit?  It is this aspect of CF I just never understand.  I see 29% and I think that I should be home bound and on O2, yet I am not.  I use it to sleep and I need it if I plan on taking my running any farther.  Quality of life ey? LOL

So that is it for me for now.  I am sure that the Cipro will do nothing for me and I will end up in patient the beginning of November.  But at least I will be feeling great for the upcoming holidays!!!

Monday, August 4, 2014

Surgery was one week ago

I it technically Monday morning, one week since my surgery. I'm due to be discharged today. I'll update more when I get home and settled but wanted to post that I made it through surgery.

Tuesday, May 27, 2014

Not sure what to do with my time

I am so booooooored!!!

I have spent the past three years working my ass off day and night to write papers and read book after book for school.  So now I find myself with all this time.  Time to sit and think and contemplate and I just don't like it.  I already started a to-do list but I don't want to knock through all 28 items in just a few weeks.  And a few of them are for later in the year.  Some cost money and those I just can't do yet.

I have never been one to sit on my ass and do nothing.  That is why getting sicker worries me.  I get bored easily.  I don't need to be totally immersed in something, but I hate not having a set goal or a routine.  Before school ended I had my days planned pretty much.  There was always school work, housework and the gym.  Now its just housework and the gym.  I don't have many crochet orders (actually I have none at the moment just some random projects I am working on), but even those aren't holding my interest.

It has only been what 12 days since graduation and I am already going stir crazy.  I need to come up with a routine quickly.  It would help if the weather would turn summery!!!  This 58* and cloudy weather is not helping me at all.

I can't go back to work.  There is no more schooling for me to do.  TV is boring as all hell.  I can't find anything on Netflix.  And I think I am in a rut lol.  Maybe I need a few days to sleep and then I will feel energized to do things?

Saturday, May 24, 2014

In Training for my Life

It's been a while, I know.  Sorry.  It has been a hectic few months.

My pancreatic surgery is scheduled for July 28th.  So that means July 7th I will go inpatient to start IV antibiotics to get my lungs in tip top shape.  The surgeon told me I will be in 7-10 days after surgery, possibly longer, depending on how I heal.  It could be 7 days or it could be 40.  No one knows.  But the first few days out of surgery I won't even be awake or aware, which I like...means I won't feel pain yet lol.

As far as specifics go: they will remove my gall bladder, bile duct, part of my intestinal tract, and the head of my pancreas.  More of the pancreas if the pathologist in the room determines I need more removed.  He said I will most likely need insulin when I am done, and I will definitely need pancreatic enzymes (got that covered already!!!).   My whole mid section will be entirely rearranged.  They will be quite surprised when they go in there to begin with and see I am all moved around already.  HA!  Have fun docs! (they know about my hysterectomy no worries).  I'm not too thrilled about the scar that will be across my stomach from this, but I am hoping it won't be too large.  Not like I wear skimpy bikinis anyway, but I am still not looking forward to that.

I'm extremely nervous and hoping that my immune system allows me to heal quickly and that I don't get any infections.  I am worried about that part more than the surgery and coming off the vent.  I have faith my lungs will pull me through it.  One thing I am going to try, which I remember from my hysterectomy, is to put on as much weight as I can before surgery so that the CO2 they pump me full of during surgery can be reabsorbed into all my fat.  I remember the awful pain I had in my upper right shoulder from it last time.  Maybe the more fat I have, the less it will hurt.  *fingers crossed*

In other news:

May 15th I GRADUATED!!!  Finally, 16 years after graduating from high school I finally have my Master of Arts degree!!!  So exciting.  It feels fabulous to be done and I have already started a to-do list for myself of things I want and need to do to fill my now empty time slots.  I'm afraid to get too lazy because then I will do nothing but sleep, and I need to keep busy to keep healthy.

Speaking of which, I have been going to the gym once a week to do strength training on my own.  Tried for twice a week but I was so busy that it wasn't working out.  Now that things have calmed down for the next month or so I am shooting for twice a week. As my transplant nurse said, I am in training for surgery.  Pretend that this surgery is something I need to train for and prepare.  So that is my goal.  Minus the whole CF thing, I am in fairly good shape.  I can't run, but its hard with 37% lung function lol.  But I can exercise like a champ and lift weights, and I have stamina for cleaning etc.  Now if these stupid lungs would work I would be set!!!

Thursday, March 13, 2014

Surgery is a MUST

I was told I HAVE to have the cyst removed.  No but's about it.  So I see the surgeon in May and we will decide on a date then.

Once we pick a date my CF doc will schedule an admission for IV antibiotics so I can be in good shape for the surgery.  We may be doing two rounds prior since my lung function was down again last appointment last week.  .96L, 30%.  I started 2 weeks of oral cipro and I go back the beginning of May.  I'll probably be admitted the middle/end of May and then again the beginning of July with surgery towards the end of the month.  It sucks though because my SIL is due to have my niece or nephew on July 15th.  So there is no way, unless she goes like a month early, that I will see the baby before my surgery.  At least it will give me something to look forward to as I wait to recover...

Wednesday, February 12, 2014

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................................................

Thursday, February 6, 2014

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...

Wednesday, January 29, 2014

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.

Sunday, January 19, 2014

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...

Tuesday, December 17, 2013

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.