12 days post-op

I'm 12 days post-op today... I'm so proud of myself for getting this far, but boy has it been a struggle to get this far, just 12 days I know! When they tell you recovery is one of the hardest things you'll go through, it truly is!

Looking back at my days in the hospital, I'm totally shocked at how much of a breeze it was for me & how well I did.. The pain meds & epidural totally helped with that 100% no doubt, but God helped me get through those days just a little easier. I remember the majority of my time in the hospital, where I have some friends who have expressed they didn't remember much of their time in the hospital, or especially the time in the ICU..; the first few days were extremely difficult pain wise, trying to get the pain pump meds corrected, as well as getting the epidural meds correct.. None of my pain meds were really working right that first night, so I was pretty miserable, getting minimal relief in the beginning... Once things got adjusted I was good to go for a few days.. 

When my surgeon told my family how my pancreas looked(diseased, hardened, inflammed & fibrous) I was shocked to hear that come out of moms mouth to be honest. I knew I had been sick, & that I had been going on for a while, but not to this extent.. It's funny.. I wanted my pancreas to be sick because I didn't want to have gone through this surgery for nothing, but I definitely wasn't expecting this extreme of a sickness.. Thank the good Lord that organ is finally out of my body for good & isn't making me sick anymore! 

My sugars were running pretty great & stable almost right out of the OR, which worked in my favor. I started off on the insulin drip, they took me off of it pretty quickly, still having my glucose checks every 30minutes from my femoral A-line (bc my veins suck completely & they couldn't get an A-line on either arm, & I have nice bruises from that & they tried twice for the femoral before striking gold!) I stayed off the insulin drip for a good while, but had to be out back on it for a short while, while taking my sugars every hour for a while.. After the first 16/18hrs the drip was discontinued, if I have my hours right, & my sugars were still being checked every hour for a while, then went to every 4 hours.. Let me tell you, that A-line was a lifesaver for those sticks!!

I had some excruciating pain in my shoulders coming out of surgery, that I'm still battling in my left shoulder unfortunately... It has gone down immensely but the pain I was experiencing I couldn't explain. My doctors said it was referred pain from my diaphragm being irritated & agitated during surgery. The unfortunate thing about that is that there's not much you can do about it, except let it run its course.. Let the diaphragms inflammation go down & the pain will subside.. So massage & ice pack the shoulders & pray it goes away ASAP. It wasn't ASAP for me though lol & boy was that a miserable pain, along with my surgical pain.. & it's funny how my pain meds weren't helping with my shoulder pain AT ALL!!
Because of my femoral A-line placement, I was confined to the bed a little longer than I typically would have been.. Due to the fact they didn't want me moving & causing any blood clots or dislodging the A-line. Once the line was removed, my nurse got me up for my first time trip to the chair.. We even ventured out to the nurses station & back before sitting in the chair for a few hours. It felt so weird & painful walking( thank you epidural! )

I would get up daily & sit in the chair & thr following say physical therapy came to visit to help walk with me a bit more in the unit.. I had a handy dandy walker by my side for stability, which helped me so much, esp because I couldn't, & still can't!, stand up straight bc of my incision & abdominal pain.. After the second day, I was pretty much using my own body weight to stand up from the chair & using the walker as my stability clutch more so..

I'm so thankful for my many visitors I've had that came from Greenville, Columbia,  Myrtle Beach, Atlanta & here in Charleston to visit! You guys didn't have to go through that much trouble to visit in the first place & coming to spend time with me while I was recovering meant the world to me!! My wonderful friends, family, & family friends are just so special to me for thinking of me through this difficult time, much less coming by & spending time with my family and myself!!

Before going to the OR

It's been so nice being out if the hospital relaxing here at the hotel the past few days, while we wait for my follow-up appointment. It was a much wiser decision to stay closer in town, instead of heading back to Greenville straight after discharge for my peace of mind, & because of the amount of pain I have been in.. Driving wouldn't be the easiest... Better do it once instead of 3x so soon..

Eating has been the hardest on me... My appetite just completely sucks, which is common & normal with this surgery... It could take up to 6months to get my appetite back to normal.. I have no desire to eat anything, no taste for anything, nothing tastes good.. Extreme nausea & intense & extreme pain during & after I eat.. Everything is working against me.  It'll get better with time but right now it's not my thing.

I'm still in an incredible amount of pain in my back & abdominal area(& my shoulder) I know I'm only 12 days out & my surgeon isn't worried about that, it's completely normal.. But the pain is miserable & my life has revolved around this.. It would be wonderful to wake up one day without pain at all!

I had my staples removed today, which wasn't the most pleasant experience. The resident truly was compassionate and did work with me as much as he could.. I can't lay down flat, so that didn't help him, & where my incision hits, is in a funky position so it made it a bit difficult for him to get a couple of the staples. Some of the staples came out super easy.. & then others HOLY COW!! I thought my heart was going to pound through my chest with how much it hurt.. & now my incision looks so weird & ugly.. It does have some dry, scabby area that I know will come off eventually in the shower but if it doesn't "shape up" better I'm going to be so upset over this...

I think I'll be pulling tape & tape residue off my body for the next year, with how much tape & dressings I've had over me the past 2 weeks in such a small area.. I'll have some good battle wounds, my central line scar on my neck, JP tube drain, surgical incision, & my femoral A-line.. I would have had another drain site for my islet cells but they had to manually inject the cella instead if insert a catheter because my vein was *once again* too small & unable too for the procedure lol.. Can you see a consistent theme within my body.. Too small veins & arteries! Crazy right! I'm still swollen around my abdomen & legs a bit.. NOTHING compared to what it was like in the hospital & the days following discharge, but the swelling hasn't completely gone down yet... It will eventually.. 

I think I've updated with everything.. If I missed something I'm sorry...I'll remember & add it to the next post. :)  please continue your prayers for strength & courage to get me through this difficult recovery.. Although it may seem like I'm over the hump, this will be one of my greatest challenges.. God truly has blessed me so far, getting me to this point & he has been with me this entire journey.. I wouldn't have made it this far without him, no doubt!! I wouldn't have made it without your support and love either! My utmost respect, love & gratitude for all the support, encouragement and strength I've been receiving from everyone of you guys! I truly appreciate your taking the time out to send the texts, emails, phone calls, prayers etc.. I look forward to being back home in the coming days & being back in my own bed, recovering in my own house!
I can't wait to start seeing all of you guys that have expressed wanting to come visit as well.. Looking forward to our visits!
      

A couple pics from my hospital stay

A couple pics from my hospital stay

                        SO much love «3

4 days post-op .... & SOME

Wow! I'm officially saying this... 4days post-op...all I can truly say is that these last 4 days have been a rollercoaster ride of emotions, extreme pain, exhaustion, meeting I can't tell you HOW many different doctors, & god knows what else...

I'm not going to get into extreme details about my surgery at this time just because I'm still heavily medicated & when I type those blogs relating to surgery, I'd like for them to have detail & such... What I've heard on numerous occasions,that I can confirm, is that the surgery went very well, my surgeon was very pleased with how the islet extraction went & that my pancreas was very diseased when she removed it... Thank god that organ is FINALLY out of my system for good!

We've had a rough time with getting my epidural and pain pump levels to where they need to be... Ive been battling some major shoulder pain, contributed from the diaphragm being irritated during surgery so much, along with physical placement on the OR table.. Doesn't help matters::my parents were told it was like laying on concrete for 10hrs.. ouch), & of course abdominal pain.
The epidural is definitely doing it's job pain wise and will not be removed for a few days , as well as my pain pump... I'm taking some oral medications now, but towards the end of my stay everything will transition to all oral until I'm at that point of getting off them for good!! (I'll be having a party that day... Along with a party when I'm feeling like my normal self again! )

Thank you!! Thank you so very much to everyone who kept in close contact with my parents, Yiayia and Papou, along with friends & their friends!! I feel so blessed beyond words & there just aren't enough words in the dictionary for me to describe how grateful I am for each & every one of you!!! I love you all & hold a very special place in my heart!!

           Mini update ¦ September 1st:

It has been a difficult few days, but we've made lots of progress as well.. My legs & belly are extremely swollen, & thats very painful... Hopefully that'll go down the more I can start to move & be mobile :)
I'm pretty much off all of my drips except my study drug right now... Awesomeness right?! I according to the doctors I'm doing great... My femoral A-line has been removed, which means I have to prick my fingers for blood sugars now, blows a little but I can handle it... I brought my own lancet to do it myself so it's been all good... My pain pump was removed & I'm on some heavy PO meds, along with IV breakthrough, which has been used very steadily to be honest... My epidural & abdominal drain are still in but that is it.. I need to do a a couple things that have been very difficult... Eating is one of those things... I have no appetite & just having a hard time adjusting to this diabetic diet thing... Who being in the hospital where I'm being monitored by the minute..everything will happen when it's suppose to happen & i know that but recovery is h.a.r.d!!!
Thank you so much again for your continued support, encouragement, love & prayers...they're felt & loved SO much! Keep them up for me bc the difficult parts of this tasks haven't ended yet!
                       Much love always ‹3

Day after surgery

Hello everyone!!! This is Maria Tiffanys mom. Wanted to let you all know her  surgery went well... Her pancreas was very diseased,hard and inflamed.. The doctor  said other than that everything else looked good  So thankful that they finally took it out!! That took about 6 hours to do. After that we went to ICU to wait while they harvested her islet cells. That  took maybe 4 hours or so. Then they called and said her islet cells were ready to be put into the liver.. Around  240,000 islet cells were put in. Doctors said they were hoping for 100,000 so I guess what she got was really good! After they finished they took her back to ICU and they finally woke her up!!! She was in a lot of pain as to be expected. Laying on a hard table for so long is rough!! After a short time she was breathing on her own  and told the nurse to come get me NOW... so they did.. My family and I were so relieved to see her awake and talking with us. I'm sure she doesn't remember anything we said but who cares. Right?? She had a pretty good night last night so today they took the ng tube out. She still has an epidural and a pain pump. Will continue to monitor her and make sure her pain stays under control.. Her blood sugars have been really good too.. According to the nurses she is doing alot better than most less than 24 hours out of surgery.. Just a little while ago she asked the nurse would he help her sit up.. Yeah!!! 

I am so thankful everything turned out the way they did.. I know Tiffany has a long way to go but I know she can and will get through it. God is with her and he will continue to give her strength so one day soon she will be back to her old self!!! I also want to thank all you wonderful friends and family for your prayers,love and support during this difficult time.. God Bless you all!!! 

The night before...

Ok... I've tried writing this blog post twice now and it's gotten deleted... BOO to technical difficulties!

Words can't express how grateful i am to EVERYONE who has expressed their Love & support towards me these past few months, especially these past few days!! The outpouring love I've received has been mind-blowing!! Friends, family, friends of friends, people I don't really know... Everyone! SO extremely kind, supportive & never backing down... They're there even when I feel like I'm completely alone through this & its been my savior!

The wonderful prayers I've been receiving are truly felt!! I'm at a peace with this surgery through these last hours that typically wouldn't be normal & i know all of that is due to these amazing people I have in my life & prayer!! Thank you from the bottom of my heart for your prayers, love & support! I couldn't have gotten this far without them...
Don't stop yet... I'll have a LONG road ahead of me with recovery. Keep these amazing prayers coming for peace, calm, relaxation throughout these next few days / weeks, strength and courage, no complications, stress free days & a calming & strength for my family as well!!

Thank you so much again!! I'm so grateful & thankful!!
I'll see you on the other side... Minus a pancreas ;) 
                          «3 Tiff

It's Official...Surgery Is...

It's Official guys... Surgery is scheduled for...August 27th.  AAAHHH!  Can you say I feel a billion & one different emotions!! Excitement, Nervousness, Anxiety, Scared, Terrified & I can't even name the other emotions running through my head at the moment lol.  

This time has been so long anticipated, it's almost like a joke to be honest.  When I went in for my doctor's appointment last Wednesday, it was the LONGEST day of my life.. 
Mom & I didn't sleep the night before (as usual per our usual Tuesday night routine unfortunately), for some reason, the nights before we drive down to Charleston for my group therapy sessions, nether one of us sleep very well, or at all, it's insane..nerves or something. Needless to say, by the end of this day we were EXHAUSTED!! We "woke up" at 5:30ish, did our morning routines, & were out the door by 6:20 & on the road..by the time we got to Charleston it was nearing 9:45 & my sessions start @ 10:00 & last until 11:30.  This was my LAST session of required Pain Management group therapy, which I was excited & sad about, because I have started to appreciate the therapy & the cause of the group & I truly like the psychologist running the group.  Unfortunately, a good friend that I had met in group, had to miss this week, due to being hospitalized the day prior at MUSC, and I was the only one *in GROUP therapy* so it was very interesting doing a group therapy being the only one there with the psychologist & the medical student...we improvised a lot..but it worked out and I graduated!! ;-)  After that I went to see my friend for a little while, and then headed to my doctors appointment with my surgeon..Scheduled for 12:15(I got out of group early being the only person in there) An hour passed, then two, then almost three before we were called in to an exam room...after that we waited another HOUR before seeing my surgeon..YES, it was AFTER 4PM before seeing my surgeon, and my appointment was for 12:15(you are reading the times correctly!!) Then it was all a roller coaster, consent forms for surgery here, trial consent forms there, information about this here, nutrition before surgery there, THREE immunizations all at the same time.. it was insane!!! It was all happening at once. When people tell you everything happens at once, it truly does!! It's like everything gets put on hold hold hold, & then they take the hold button off & everything flies off the handle BAM! lol  We didn't leave the office until well after 5:30, we had to stop on the road a few times, just to stretch our legs & get some fresh air; it was a LONG day guys!; by the time we got home, it was nearing 12ish.. WHAT a long day that was.. Mom & I were exhausted.. When I told you in the beginning it was a LONG day, I wasn't kidding! haha ;-) Thank god for getting us through that horrific day, getting us home safely, & getting us through those 6weeks safely back & forth..Now we have to get through the surgery & the back & forth after.

I will head down to Charleston Tuesday night, with me pre-surgery nutritional supplements in tow, head to the hospital early Wednesday AM, get fasting labs(for my clinical trial), ultrasound & then I'm free until my room is ready, head back once my room is ready, get my central line placed, have more labs drawn & then have the clinical trial drug(Reberaxin) started around 2am.  Thursday AM, bright & early I'll go into the OR (I'm told around 5-7 AM) & then I bid my pancreas farewell forever...bittersweet but it unfortunately isn't a choice; it's a situation where it's a "not if but when"

I am anxious about my new lifestyle that I will have to live..what will it be like being a diabetic?  Will it be difficult changing my entire lifestyle & diet into a diabetic diet?  Will it be difficult having to measure out my foods..(although I do this a little now; it will be extreme after surgery) Will it be difficult giving myself injections of insulin & pricking my fingers every few hours for blood sugars?  What will this new lifestyle truly be like?? I pray this won't be a difficult adjustment.  

So for now, I ask for prayers for a peaceful next few weeks; to get me through these times of waiting.  You know waiting can be a trying time, and I want this time to be as peaceful on myself and my family as possible.  I also would like prayers, in advance, but of course the days leading up to & the day of surgery for my surgeon, my big total pancreatectomy with auto islet cell transplantation, the islet cell harvest into my liver to get very smoothly & perfect & NO complications with surgery or post-op complications.  This is pre-mature, I know, and I will ask for these prayers again, but beginning my prayers earlier than later means a lot to me. :) Prayer in general is very powerful and I can feel every one of your prayers, I promise you.. I wouldn't have gotten this far in my journey without your prayers and I'll continue to get through this with them.  I thank each & every one of you for the prayers that are sent my way and to my families way!!! <3<3

L.i.M.B.O

Have you ever been stuck in limbo? Thats where we are at right now.. The most frustrating feeling ever!
I have been waiting for a "phone call" to get a potential surgery date for 4 weeks now.. & before that, even weeks prior. It's just an irritating process, when I am in a ton of pain, trying to make an incredibly hard decision on whether to change this dang pancreatic stent out or not prior to my total pancreatectomy or just ride it out..my doctor doesn't know what to do, I don't know what to do.. Like I said LIMBO! If I change it out, I'll be in the hospital for a week bc of my pancreas.. If I don't I could be putting myself at risk bc of the length of time the stent has been in there for... If I change it out I could/probably Will damage more of my very important islet cells for my transplant... What if I change the stents for nothing bc surgery gets scheduled within 4-6wks after stent exchange... If I wait.. I don't know...lots of decisions to be made for one little organ..hmmp.
These are the thoughts going through my mind daily, hourly sometimes!

 I've started my mandatory weekly Pain Management group therapy sessions & they seem to be going well. I won't get into too much detail about them but my favorite part has been my ability to improve on my meditation or what they call in therapy as "mindfullness/relaxation exercises" I've gotten pretty good at them & at the end of my 6 weeks, I'll get a disk of my psychologist going through them like she does in class & I'll be able to put them on my iPod, which sounds dorky but Will be much helpful post-op (if it ever happens) & I'm in a lot of pain.. I'll be able to escape to that relaxation place & try to forget about the pain I am in & focus on other things within my body, my breathing, my thoughts, etc..
This therapy has also taught a lot about acceptance. Accepting how we are in the present & how we can't change what is going on with our chronic illnesses & to try to focus on the now, not the past(which I don't do.. Doesn't do me any good) but to focus on the here & now. It's very refreshing. Ive completed 4 out of my 6..so 2 more to go.. Hopefully that's all that's standing in my way.

On a lighter side of things, this past month my entire family went to Aruba for a nice family vacation & get away. It was OH so needed & I'd like to go back NOW please! U think this was the perfect timing for the entire family to get away.. We are all so stressed about what's going on right now, even those who don't show it(I know it's there) it was great timing for a getaway! Let me just say Aruba is now One of my favorite places to be. The BEST weather around, it never rains, a breeze every day, beautiful clear water.. I couldn't ask for more! I had my amazing family by my side, my wonderful cousins who are more like my best friends & we had a blast. Can't wait & ready for our next trip! <3

I'd like to ask for some prayers of peace & relaxation throughout these next few weeks.. Pray for my doctors & their guidance to give me the best plan & a solid surgery date(finally), pray for peace within my mind(& my family bc I know this is wearing & tearing on them as well!) as well as relaxation.. I need to relax through all of these tough decisions & waiting around. I know God is watching over me & getting me through all the tough stuff but extra prayers are always welcomed!
I always appreciate the love & support & can't thank you enough!
Much love always.

<3 T

Wishful Thinking...

So a lot has been going in these past few weeks.. A LOT.  I guess you can say that has been a good thing, keeping myself busy.. I've been going to weddings, spending time with family, dealing with some personal issues, painting, & of course going to the doctors (that doesn't ever change I feel like! HA) 

This seems to be the time for weddings.. One of a very close family member got married this past weekend & another close friend is getting married this coming weekend.  A bunch of close friends have gotten engaged recently & I am so ecstatically happy for them as well. This is such a joyous time in their lives & I am so blessed to be able to be apart of that next step & journey of their lives.  

So as everyone has known, this upcoming doctors appointment this past weekend was very anticipated.  It was very up in the air on what was to happen, what was to come of it, what I was to learn of the appointment, what was going to become of the appointment, it was very unknown & very unnerving to be honest... I knew I was going to have to meet with behavioral medicine(essentially the psychologist because of the transplant portion of my surgery this is required for my surgery) & then I knew I was meeting with my PA, but what was to be discussed, I had NO idea.. Whether I was getting my surgery date today, or not I had NO clue.. I was told I would but it was honestly up to them.. what they thought best for me and my plan of action for success.. I came into this appointment with anxiety and extreme nerves because I was waiting for this appointment for 2 months, in a lot of pain, and I am just extremely READY for this next step in my life and ready to start that journey of getting better; not staying in this stream of misery & pain & uncertainty for who knows how long.. this entire process is just very long, exhausting & stressful.  Not that is isn't suppose to be all roses & sunshine because it isn't at all; it's just extremely difficult to get from point A to point B. 

My appointment was not very successful Friday at all.. I was there for about 5 hours, without any success, I felt like.. I am now going to have to do mandatory Pain Management group therapy, which is apparently required for ALL transplant patients, for 6 weeks, prior to surgery.  Now whether I do 2-3 prior to surgery & then finish the rest after surgery is a possibility or I have to do all 6 before surgery is entirely up to the doctors.  They will decide while I am in group sessions & surgery could get scheduled as quickly as within 2 week after therapy has started.  I will be with people similar to me, either other pancreatitis patients or post-op Total Pancreatectomy patients, and I will learn Pain Management coping skills; which will be very helpful post operative, especially if my epidural fails, or my pain is just so incredible that I need extra pain coping skills.  I will start sessions June 24 and hopefully do the 24 & the 1st & see what happens after that. This is a good thing but it just sucks big because it is postponing my surgery an extra 6 weeks maximum when I truly do need it as soon as possible. 

The downfall to having to do this is I will need yet ANOTHER surgery to exchange my stents that are in my pancreas right now keeping my ducts open.  We have held off on that for too long at this point, just because we anticipated surgery to be at the beginning of July.  Surgery could STILL be anytime in July, BUT I can't take that chance of waiting anymore & hurt my ducts or have them perforate with a bad stent in them, because that would be a horrible situation.  I am already in a horrible amount of pain, so the stents need to be changed out.  The bad thing about this is I have been holding out on the surgery because I didn't want my pancreas to be "touched or messed with" if I could hold off before major surgery just because every time we go in & change those stents, it makes my pancreas angry, and when that happens, I lose islet cells, which are those extra important cells I'll need for my transplant!!  I need extra prayers for those special islet cells for my transplant and I just can't have those cells damaged anymore than they have been in the past .... it's just a big deal to me and a scary situation because I don't want to lose anymore of those than what has to be lost so I can get the maximum amount for my surgery & transplant!! The more amount you get for transplant the better changes you have later on for recovery!!!

I know this is a lot of information and more information that you want to know about the pancreas, and I'm sorry... I know everything about the pancreas at this point with my disease!  lol  

in Charleston at the Drs

So at this point, I ask for prayers to get me through a few weeks of group therapy successfully & that I can schedule surgery quickly because I truly am ready.. I am SO ready... I feel like I am hanging on by a thread honestly.  My body is hanging on by a thread .  I know this is needed, it's just a sucky need at this point.. lol Please pray for a smooth transition with this Pain Management & a good learning curve.. I truly want a good result with it... I know it's not what I wanted, but it's what God wanted and I can handle that!  Just keep the prayers coming that surgery happens soon.. that the stent exchange is smooth & doesn't make my pancreas angry or upset & that I get scheduled for surgery pretty quickly & soon.  Once that happens, I'll have much more to update you on.  I'll update with more throughout therapy but until I know for sure when surgery is, it may be a little quiet, just because I don't want to repeat my writings & bother you guys ;) 

Love you guys SO much & I appreciate you're sticking with me through all of this and ALL of your support.  I feel all of your prayers, support, and love.  It means SO much to me and I can't thank you enough..

<3 T

with Baby Mikey at this sweet baptism :)