My Melmoirs

Well, yesterday I proclaimed my resolve and determination to make the most of what I had and the Universe quickly put me in check. It turns out I won't be doing much of anything the next few days.  Shortly after I published my blog post yesterday I attempted to do a load of laundry when something suddenly "popped" again and I was in so much pain it brought me to my knees. I couldn't take a full breath, I couldn't move, and I certainly couldn't cough (which I've been doing a lot of these days.)  After talking with my CF team it was decided I should head to the BWH emergency department (ED) for "pain management" and to rule out a few things. Out the window went my hopes for the day and off I went.  It was a long day/night with a battery of tests and not many answers. The great news was that there was no blood clot in my lung (PE). There are a few minor issues with my gallbladder, but nothing serious.  The verdict was that I most likely...

Love these guys! Despite my sunny outlook, genuine optimism and best attempt to get healthy, the past 5 days have been more of a nightmare than a dream. And I, along with a few others, have had it. So much has happened that I don't even know where to begin. Truth be told, I'm still trying to process and digest it all. I suppose I'll just go in chronological order and keep it brief... My pancreatitis took a little longer to heal than I had hoped, but I was able to fix it by cutting way back on fat intake.  As soon as the pancreas pain moved out horrible, intense pains moved in. I'm talkin' horrible pain shooting from my clavicle down my arm...pain radiating from my gallbladder throughout my abdomen...and pain behind one of my scapula shooting up to my skull. Between the pain and my cough I haven't been sleeping much. I like to think I'm a pretty tough cookie, but this pain was too much for me to handle. It was 'all hands on deck' trying t...

It's been quite some time since I've posted and all I can say is that it's been one busy summer!  They all fly by way too fast, don't they?  I'll start by getting down to business, my health.  Luckily for me, it's been fairly uneventful -- still highly unpredictable, but uneventful.   About a month ago I began seeing an extremely kind chiropractor who asked me to come see him.  He thought that he might be able to help my overall health by aligning my vertebrae and relaxing/stimulating the nerves that supply my lungs.  I agreed to give it a shot with zero expectations, but I have to say that after a few visits with him, my gallbladder and pancreatic pain became the lowest it's been in two years!  I hadn't even mentioned that pain to him, so he was equally surprised and elated that it was helping.  Coincidence or not, I've had more good days than bad and have been able to keep up with all of the summer hoopla (or at least most of it an...

Hip hip hooray, I'm going home today!!!  This stay was longer than I anticipated, but I realize that it was very necessary and that I wouldn't've had the self discipline to restrict my diet and give my pancreas the rest it needed had I been home.  I still have yet to eat any solid food other than a few saltines last night, but I'm anxiously awaiting the arrival of a plain bagel (without anything on it) as I type this post. I still have mixed feelings about removing my gallbladder and no one can guarantee that it would solve any problems, so in the meantime they've started me on a medication to hopefully dissolve the "sludge" in my ducts and my small gallstones.  We're also considering adding an enzyme that will help to bypass my pancreas when I eat.  Most importantly, they say that I should be able to eat ice cream by the end of the week! As far as my IV meds go, we feel as though they've done their job and they'll be pulling my line before...

It's been an interesting week filled with lots of twists and turns to keep me on my toes.  At the beginning of last week, in true toddler fashion, Myles generously shared his cold with me.  It was only a mild cold, but it still set my progress back a bit. On Friday it was a busy day of appointments:  Myles had his annual check-up and I had to go to Boston for my CF follow-up, so we made a family fun day out of it.  Myles' appointment went superb and Mark & I felt like such proud parents to see what a good little patient Myles is.  I guess that's what happens when you're constantly around doctors and nurses from birth.  Even my visiting nurses can't believe how hands-on he is while taking care of me...it warms my heart. Tender time while we waited Monkey see, monkey do (PFTs) BWH ER My CF appointment went well; my PFTs continued to increase 3%, my lungs sounded good, and my NP kept telling me that I "looked good" as though she w...

     I'm afraid I jumped the gun in my last post and expected a little too much from the new meds.  The very next day my adrenaline high came crashing back down and I quickly realized that it might not be the miracle I was hoping for.  Today that was confirmed when I went back to my CF doctor and saw that my PFTs have barely budged at all since the low ones I blew two weeks ago and my lungs still sound very "rattly."              On the upside, I am finally starting to function like a human being again, I'm less short of breath and am starting to sleep a little better (sometimes).  After increasing the prednisone this week I do feel like I am making some progress, just not as quickly as I would like.  My CF doc wants me to do two more weeks of the IV antibiotics instead of one, but I am willing to do whatever it takes to get me back to feeling good.  She also warned me that it's most likely going to take longe...

     I just wanted to write a quick health update; you're all sweet enough to care, so I didn't want to leave you hanging.  The great news is that after only a few days back on my autoimmune/arthritis medication most of my pain has greatly decreased and some of it has even completely resolved.  While I am still waiting to discuss things in more detail with my rheumatologist, this to me is huge because it shows just how many of my issues are  in fact autoimmune and not necessarily CF like they all the rheumatologists I've seen kept trying to tell me.  What I find most interesting of all is how much my gallbladder and pancreas pain was affected by said medication.  Neither my past GI doc nor my CF doc could explain what was causing those 'attacks', but now I feel like we might be onto something.  I am meeting with a new GI doc next week for a second opinion about removing my gallbladder and am curious to see what she will think.   ...

     I'm not going to lie, this past week has been a rough one and this morning I found myself feeling weepy and worried.  To catch you up to speed, I saw my rheumatologist last week about all of my ongoing joint pain and together we made the decision to stop my arthritis/autoimmune drug, cold turkey.  She didn't feel as though it was helping me and it made total sense to stop a med that I may no longer need.  So that's just what I did.        A few days later all hell broke loose and I found myself parked on the couch in excruciating pain.   Everything began to hurt, and bad - my joints, my lungs, my blood clot areas, my pancreas, and that ole' gallbladder that's still kicking around.  As if the pain wasn't enough, my lung issues also kicked into high gear.  I spent the most of this week on a constant cycle of pain killers, very little sleep, and little-to-no energy.  I contacted my rheum. doc days ago, b...

     It's been a little over a week since my embolization and it's been a harder recovery than I anticipated.  Looking back, I realize that I was so focused on avoiding the ICU that I failed to mentally prepare myself for the recovery process.  The past nine days have been a journey through fever/infection, insomnia, lung pain, headaches, intense blood clot pain, nausea, zero appetite, night sweats, muscle fatigue/weakness, shortness of breath, chest tightness, back pain, body aches, etc.  And the docs say that's all normal - apparently being intubated under general anesthesia for 6+ hours while they work on your lungs and arteries is kind of a big deal.  They've prepared me that some patients experience pain for weeks.  Yet still, I impatiently wait to magically wake up one morning and feel better.  Almost every day I go to bed thinking 'Tomorrow's going to be better', only to experience a different challenge the next day.     ...

   Well, I will be having surgery on Monday ...but it won't be to remove my gallbladder.  As it turns out, the past few days haven't been as uneventful as I had hoped.  Things began to go back downhill last Saturday morning when I had another pancreas and gallbladder 'attack', followed by another big bleed (hemoptysis) from my lungs on Sunday night.  The bleed prompted a change of plans and landed me in Boston today to see both my clot and CF docs.  Things are about to get a little technical, so bear with me:   My CF doc feels strongly that the antibiotics have done their job and gotten my lungs as healthy as possible at this point.  She said that the next step would be to either decrease my anticoagulation (blood thinners) or consider another pulmonary embolization (surgery to manually stop the lungs from bleeding.)        So bright and early this morning, my visiting nurse came to draw blood and then it was off to the hospit...

     Dare I say it, my gallbladder surgery has finally been rescheduled for July 11th.  If next week were not the 4th of July it would've been sooner, but I guess surgeons deserve a personal life too.        I saw my CF team on Wednesday and they cleared me for the surgery.  They did not have me do PFTs (breathing tests) as to avoid aggravating my lungs. They could not explain what caused the bleeding and simply stated that my lungs have a mind of their own and can be quite unpredictable.   Whenever I have a decent amount of bleeding from my lungs, it tends to pull my progress back a few steps and make me feel quite lousy.  This time was no exception, but I am starting to feel a little better each day.        The CF team continues to believe that the current meds are in fact working and made no changes.  They do, however, want to pull my IV line next Wednesday in hopes of resolving my blood clot issues...

      An ironic twist of events has caused my surgery to be rescheduled...again.  I sat looking at this blank page for a good, long while because I still can't believe it; nor could I figure out quite where to begin.  The reason the surgery has been postponed is ...drumroll... because I hemoptysized today (a.k.a. had bleeding in my lungs.)  It was a decent amount of blood and more than I've had a few months, so my CF doc advised me to cancel the surgery [sigh].      There are so many thoughts swirling through my head and I haven't had time to process it all yet.  I don't know why my lungs had such a bleed after two weeks of IV antibiotics.  I don't know when the surgery will be rescheduled for.  I feel awful that so many people rearranged their schedules for me.  I feel frustrated that as badly as I want this behind me, I will have to endure the anticipation a while longer.  And I feel grateful that the bleeding hap...

     With less than 24 hours to go before surgery, the nerves have started to set in.  The surgery is scheduled for 7:30am tomorrow and I have to be at the hospital for 5:30am, which means we'll be hitting the road no later than 4:30am.  While they have scheduled the OR for two hours, the surgery will most likely finish sooner.  Mark will update my blog as soon as possible, but the email notifications only go out every two hours, so you may not get an email notification right away.   If all goes well it will be an easy laparoscopic  procedure requiring only four small incisions.  It is not so much the surgery that is making me nervous, more so the anesthesia/intubation.  Let's take a trip down memory lane, shall we... For those of you who may not remember, the last time I went under general anesthesia while intubated was back in 2009 when I was having a procedure to stop my lungs from bleeding.  During the procedure my lungs...

     The surgery gods have spoken and my cholecystectomy (gallbladder removal) has been rescheduled...twice.  First they called me to move it up to this Thursday and then when I went to my pre-op appointment yesterday I found out that it was pushed back to Monday.  Luckily it's not for any health reasons on my part, apparently the surgeon hurt his leg.  Thursday really would've been ideal, but I keep reminding myself that everything happens for a reason.  The upside is that I'll have a few more days to get my lungs in better shape.        Yesterday I also had a CF appointment and it was pretty unremarkable.  My PFTs were up ever so slightly and I seem to be par for my course.  My track record has been that the IV antibiotics always make me feel worse before they make me feel better and it usually takes at least three weeks for my PFTs and my lungs to truly improve.  I also saw my x-ray report and it turns out that ...

     The verdicts are in and I'm heading back to the 'hotel'.  I am going for two reasons:  the gallbladder surgery and to have another tunneled catheter placed for IV antibiotics, but the two need to be more than one week apart.  I was given the option to make it one long hospital stay, but anyone who knows me knows how fast I shot that idea down!  Instead I'm going to have two separate admissions, each for a few days.      The first admission will be on Monday.  I will be sedated for the IV placement and then go up to my 'suite' to begin the admission process.  They will monitor me for a few days while I start the antibiotics and then I will continue them at home.  Usually the IV meds make me feel pretty crummy in the beginning, but since I don't feel terrible I'm hopeful that it won't be so bad this time around.  The CT scan that I had a few weeks ago happened to show some worsening in my lower right lobe, my cou...

     Half a dozen doctors appointments and two more "acute" pancreatic attacks later and I'm not far from where I left off.  Each pancreatic attack is more intense than the one before (despite days without eating any solid food) and no one has been able to figure out exactly why. The irony of this whole thing is that my pancreas looked normal on my CT scan and my enzyme levels (that would indicate acute pancreatitis) are the lowest they've ever been.  This has everyone quite perplexed.   Since I've had so many appointments within one week, it would probably be easiest if I break it down by specialist.  And if by the end of the list your head is spinning, don't worry, I felt the same way living it. Sinus Doc :  Everything looks good;  more inflamed than my last appt. but not enough to warrant change. Rheumatologist :  While she agrees with all of my other doctors that my #1 enemy is inflammation, she does not believe it is...

     I must have taken a wrong turn somewhere, because the road has only gotten bumpier since my last post.  There are many people who are going through so much worse and I don't want to whine about things so I will keep it brief; I just wanted to post an update because I know some of you have been wondering.      The good news is that my pancreas/gallbladder pain is less intense and I have been able to eat some foods, but the pain is still very present, I'm still getting hit with waves of nausea and I'm trying to keep my diet low-fat.  Ironically, ice cream seems to cause the least pain.  Not the most nutritious of foods, but that's what my pancreas likes.  The bad news is that since last weekend EVERYTHING has begun to hurt.  Everything.  So much so that I, a skilled veteran of my body's eccentricities, can't even differentiate what's what.  Pancreas, gallbladder, blood clots, lungs, joints, muscles, nerves, head...

     Today I received my scan results and got a much-needed answer (hence the giant leap.)  The HIDA scan showed that my gallbladder is emptying way too slowly, is chronically inflamed and has gallstones.  The PA who gave me the results over the phone was pretty vague, so I'm not sure if the gallstones are the same tiny ones as before or bigger ones, but either way they're not as much of a factor as the inflammation.  Basically I have something called chronic  cholecystitis  and that's what is triggering my pancreatitis flare.      All of my other organs looked good on the CT scan, which is a huge relief.  The plan now is that I'm going to consult with a surgeon about removing my gallbladder.  Before I make any decisions though I want to talk things over with my CF doc since she knows me the best and always looks at the bigger picture.      As far as pain goes, today was the best day I've had all week. ...

     My Mother's Day bliss was cut short last Sunday due to an unexpected acute pancreatitis  attack.  Balls!  Not too long after I finished my last blog post I found myself trapped in the fetal position and had to cancel the events that my dear husband had so sweetly planned.  In addition to pancreatic pain I have also been having some discomfort around my gallbladder area, which is most likely related.  [Side note: They found tiny gallstones in my gallbladder last year, but they have never been an issue.  Pancreatic issues are common with CF, yet I only began having issues after Myles was born.]  While the intensity of the pain comes and goes, I have not eaten a 'real meal' since Saturday evening (boy am I glad I splurged on dessert!)  I actually hadn't eaten much of anything besides a few saltines until this afternoon when I tried to eat half of a plain chicken sandwich, which didn't go so well.      Coincidental...