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.

Friday, December 13, 2013

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.

Tuesday, December 3, 2013

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!

Sunday, December 1, 2013

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!

Tuesday, November 5, 2013

Nothing out of the ordinary

I realize its been almost 2 months and I have no excuse, only an apology.  Just really busy.  I guess that is a good thing right?  Lots of things coming up this month though.  I have an ENT appointment on the 15th and my annual colonoscopy/endoscopy on the 22nd.  I will keep you all posted on the results of those.

Other than that...just a bit more junky than normal.  Coughing a good amount and actually bringing junk up.  I don't see my doc until December 17th so crossing my fingers I last that long.  I have that sample of the TOBI podhaler sitting in my drawer but I am not really excited to try it.  We shall see...