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...

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.

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.

MRCP Results

Today was my follow up appointment for the MRCP I had back in January.  Good news is the cyst either shrunk or was miscalculated from the endoscopic ultrasound.  It is only about 1.5 cm up from 1.2 cm the time before (the endo ultrasound showed it at 2.2 cm).  Unfortunately, I need to have another MRCP early April so we can be sure.  And then in the same month, I need to meet with a pancreatic surgeon to go over my options - if I need surgery to remove it, if we can just follow it, or if we can virtually ignore it.  Hopefully we can just monitor it for now.

MRI - results

Source

I hate that bright white, loud, claustrophobic machine with a passion.

Ativan helped though!

I was able to survive the whole 40 minutes without freaking out or even thinking of freaking out.  P was funny.  I texted him right before I left to go and he responded that with all the serious things I face, a TUBE scares me!  So true lol.  But fears are rarely rational.  And apparently can be subdued with some good drugs.

It was also nice to have the meds fed through my port.  Betty and I are definitely enjoying the new freedom from PICC lines.

Later on the weekend doctor came in and said the results showed the cyst had not grown since November and didn't show anything sketchy.  But I will wait to hear from my GI doctor before I start celebrating completely.  But its still good news and I will take it.  Now I just have to do this every 6 months to be safe....