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!!!

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...

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...

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.

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...

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.

My Pathology Report

I am so glad I am not a doctor because the language used is mind boggling!

My incisions are healing up nicely. They don't look bad and they are so tiny you will barely be able to see them when I am all healed!

There were only 4 issues found out of the 6 organs removed. Really not too bad and 2 were nothing to be concerned about.

On my cervix was some metaplasia which I have had before. It can lead to dysplasia which are pre-cancerous changes. I have gone through all those procedures when I was found to have dysplasia about 5-6 years ago. Again nothing to worry about, but I am thankful my cervix is gone.

On my right Fallopian tube they found a few peritubal adhesions. Basically little polyps on the outside of the tubes. They were found to be benign thankfully. Reading up on those adhesions I found they can lead to infertility so I wonder if I would have been able to have babies without CF and LS forcing me to make the decision to remove the baby making parts.

On my right ovary again they found cysts, which have not gone away from my ultrasound in December. That's 7 months of hiding out and again I am thankful it was removed. The cysts were benign as well.

Then on to the uterus where it showed I had endometriosis. Apparently it has never given me issues.

Seems that taking out my baby making parts was a good idea. Who knows if any of these polyps would have turned cancerous...or if given what was found, if I ever would have gotten pregnant...

My second video on YouTube all about Lynch Syndrome and my choice to have this done:

Lynch Syndrome Video

EDIT:

I spoke with a friend of mine tonight who is a nurse and she went over the report with me thoroughly. The doc just pointed out the issues they found. Turns out those lower back cramps I had with every cycle, was the endometriosis! I had adhesions on the back of my uterus that were pulled during my cycle and caused the cramping. She asked if I had lower back pain and showed me where and it was like I was pointing to my own back! So I did have issues but never thought much of them. She also said that I was raked with scar tissue on my insides. Basically it seems like my organs where all over the place and stuck with scar tissue, like a huge cobweb! And that one ovary was connected to my bowel. I'm kind of intrigued and would have loved to see what I looked like. Gross and disgusting yes, but pretty nifty too!!!

Recovery

Not gonna lie...recovering has been a bit rough. Easy compared to some I am sure, but considering this is my first real surgery, its taken its toll on me.

Pain has not been a big issue around the surgical site. Pain in my right shoulder has been abysmal! Sunday I woke up thinking I slept on my arm funny then was reminded that shoulder pain is to be expected from being pumped full of CO2 for surgery. By Sunday night I was in tears and Peter had to run to the store to get me a heating pad. It was horrific! I was taking pain meds solely for the purpose of helping my shoulder. Monday I called the doctor and asked if there was anything I could do and they told me time. The CO2 has to be reabsorbed back into your body, through muscle mass (of which I am lacking). So they said it could take a few days. Well here it is 5 days later and though I can move my arm, it is not without help from the left arm. From the elbow up my arm is practically dead. I can move with some pain but only if I push it around with the other arm. Otherwise is just sits there. Almost like it lost the connection, very strange.

Now that a week has passed and I have gotten my uvula to shrink (well I didn't but mother nature decided to give me a break) I am able to cough without fear of throwing up. Only now I cough incessantly! Quite annoying I tell you. I will pop up from full sleep to a major coughing fit that lasts for 15 minutes or more. These fits are happening at least 6-7 times a day. They never result in anything coming up (mucus or food lol) but leave me totally winded and exhausted. And the coughing is killing my arm as well. I am a mess! On top of that for the first time in my life I CAN NOT sleep in my regular sleeping position. Usually I have 2 pillows and it elevates me enough. Now I have a big pillow from the sofa propping me up so I am elevated from the lower back up. Its comfortable for a bit, like a recliner, but after 8 days I just want to sleep on my side again!

Other than those issues I seem to be healing well. I am exhausted, and frustrated that I can't do much thanks to my arm. Though even with the arm working, there really isn't much I can do. Laundry is too much stretching, food shopping is heavy, I can't drive yet because of still being on pain pills, cooking is fine but I need to be creative with what we have because I can't get to the store. Luckily we are going shopping this weekend and I can stock up for the next couple of weeks.

I see the surgeon the end of next week and she will let me know if they found anything funky in my discarded organs. I wonder when the reality of what I did will sink in? It hasn't hit me that I TRULY CAN NEVER have babies of my own, EVER. Even after I was asked how far along I was (yes someone thought I was pregnant thanks to a slight bloat and asked me how far along I was in my pregnancy), it didn't really phase me much. Maybe in a few months, once my body realizes it can't produce children anymore...