13wk post-op visit, Holidays & a Brand New Year!!

WOW! Where do I even begin! I've been wanting to sit down & write this post for a very long time now, but as you know, life can get in the way sometimes.. In good & bad ways... SO many things have been going on lately & I have plenty to update you on so bear with me with this long post I'm about to write for you.  :)

First off, let me begin with Happy Thanksgiving, Merry Christmas and Happy New Year!! LOL That was a mouth full all in itself! I hope you all had a wonderful holiday season... I enjoyed my holidays... I didn't quite enjoy the eating/food side of my holidays, due to the fact that I'm still dealing with loss of appetite, pain when I eat food & lots of nausea! It's a battle all in itself just dealing with the food side of my recovery & it's very exhausting but I'm pushing through daily! I still enjoyed just being with my family & spending time with them.. That's all that mattered to me honestly! Those are some of my favorite times of the year; I get to spend time with my cousins who are more like my siblings & we just enjoy each others company & have fun at Yiayias, until Easter time & summer! It gets my mind off of how tedious of a process this recovery has become & how it truly is going to be up to a year or more for my body to get back to where it should be & I just have to go with the flow; a difficult task at times I'm not gonna lie.

My pain has subsided a decent amount, which I'm thankful for. I'm still very uncomfortable & dealing with "phantom pains" & "phantom attacks" quite frequently at this point. My surgeon has told me they'll come less & less with time & the more my body settles into my new body & gets use to things, although just as I've stressed about a million times now, it's a timely process, a waiting game, & I just have to go with the flow... My surgeon & transplant team are very happy & thrilled with my outcome so far! This gives me hope & the encouragement to keep pushing forward, especially on my toughest days! ::knock on wood:: My glucose levels are still in very good ranges & I very rarely have to do corrections for out of whack sugars right now! I thank God daily for this gift, this easy transition & for giving me some ease with this part of my recovery!! I couldn't be more thrilled! I pray daily it stays this way, or continues to just thrive & get even better as time goes on!!! Only God has those answers...

So now the game plan is to continue to keep my nausea at bay.. So I'm sticking to my strict around the clock scheduled dosing of nausea meds, keep my phantom pains under control & still work on my appetite as well as I can... Which is SO easier said than done! In the next month I'll be starting a new program with MUSC, for "better quality of life" (that's how they word the program) but it will assist me in hopefully, weening me down all of my extremely high dose pain medications & at minimum get me to a manageable lower dose for better quality of life, if not hoping completely off of them! It's an extremely long process, so who knows when it'll all be said & done, it all has to deal with how my body reacts, how my pain reacts, how I do daily & to do it safely! '‹the joys of living with a chronic illness›'

I've also been dealing with a systemic issue, if you will... My body is going through stress mode due to how extremely stressful the surgery truly is on your body... My body broke out in horrible welts/acne-like bumps but much worse (almost in the form of shingles but they aren't shingles) all over my entire back, down my booty, part of my leg, my face.. It has been the worst thing ever! Of course with the ones on my back, I couldn't get comfortable with laying down, & I already wasn't comfortable sleeping to begin with so that made it worse, I had to cover every tiny welt with a special medication & band aids, so you can imagine how comfortable that could feel(& this is on my face as well), they itch too!! Add to everything, I can't take steroids to help speed the recovery process up.. So it's been a nightmare!! This has been going on now for approx. 2 months..
I saw my dermatologist last week & he was very happy with the healing process & did say they were about 60-70% better so that was very good to hear & encouraging! Thank the wonderful Lord for helping me with that... Now I just need a little more help with these last extra spots that are hanging around & are being truly stubborn!

So it may seem like nothing's really changed but a lot has changed... It's just been at a very slow pace... And again, please forgive me for my absence the past few months in not posting... I just got a little lazy & then dealing with these horrible welts, the holidays & so forth, things got away from me.

Thank you for keeping up with me still & continuing to keep me in your prayers & thoughts! I truly appreciate them, feel them & still need them, so keep them coming whenever your kind souls think of me. I can't thank you enough for them, the love & support!! My support team behind me truly is amazing & has rallied through the good, bad & ugly & my thank you's aren't enough! I love you guys so very much!!
When you're thinking about me & sending those prayers out for me, send out some extra prayers for some dear friends of mine as well, who are going through their own struggles as well: Lindsey, Tiffany, Riley, my moms friend from college, Julie, Robin, Leon, Mallory, & Amber ...just to name a few(please forgive me if I left your name out by accident.. You know I'm praying for you ALL!!)

                    Until next time... ‹3 T

3 musketeers having fun at Christmas!❅
Wouldn't have it any other way!! 

My best friend Alexis'engagement party
My very 1st outing since the big surgery!!

Trouble in paradise?

I wouldn't go THAT far as to say it's trouble in paradise but I guess I can say a mini bump..a crack in the glass..a slight dimness in my candle.. 

Another part to this recovery process that's one of the most difficult parts to it is keeping your mindfulness throughout the entire process. Staying positive each & every day; day in & day out. While I have no appetite what so ever, whenever I take a bite of whatever I've attempted to try & it has ZERO taste or I take a sip of something & I want to spit it across the room bc it tastes so repulsive & once I've forced myself to try the tiny handful of whatever & endured the pain it's given me as well as the nausea at this point, I'm at my breaking point.. But I keep my positive attitude as best as I can. I pray to my dear Lord to give me strength & get through this difficult recovery & time & these next months. He's done so much for me so far & has been such an amazing God.. He won't fail me now! It's just so incredibly difficult to see that light at the end of the tunnel when my mom is physically having to walk me up the stairs, bc I'm so nauseous I can't think straight, to put me to bed, to sleep off this pain & nausea state Ive been put into all due to a little bit of food: that in my mind should be nutritious to my body but instead I feel like is poisoning my body right now. Dear amazing Lord of mine, please get me through this difficult time with my nutrition & I know I'll eventually get to where I need to be. This is probably a tad worse than the pain im still experiencing & recovering from on a daily basis.. They're both bad on separate levels so they're hard to compare to one another but this situation definitely makes it to the top of the list.. 

My blood sugars are doing well, I'm not complaining, I promise I'm not complaining.. But I am having difficulties right now.. I've hit a bit of a road block these last few weeks. I've hit a bit of a, I don't know what, with my long acting insulin, where I'm experimenting a bit with it & I think I found a fix to that, although it's something I wasn't too happy with in the beginning honestly..I went up one unit on my Lantus as a trial to see how it would effect my blood sugars. They peaked & I couldn't understand why.. & the numbers game is the hardest of all with this surgery & recovery!! Especially when you're islet cells are suppose to be thriving & maturing & you have NO idea what their suppose to be, how their suppose to be etc.!  It makes me scared for my islet cells & that's a common fear with this surgery. The idea of going up in numbers terrifies me honestly! I guess bc I've been blessed up until this point with such good numbers, seeing them falter I can't handle it.. So the change worked.. 

I am having to do an "experiment " with my clinical trial I enrolled in before my surgery. This is required for your 75day & 365day work-up appointment, you have to log your blood sugars for 2weeks prior fasting, prior to your meals & after within 2hrs.. Let me tell you how much of a mind game THAT is! I don't ever check my sugars after I eat.. I typically check within 5-6hrs after so they've stabilized at that point.. Within the 2hr time frame, I'm having high sugars & having to correct them, something totally different from my routine I've done for 2 months! I'm not liking it.. I've learned my body is extremely sensitive to sweets, which is KILLING me. I was never a super sweet fanatic, don't get me wrong, but now that I'm unable to have them, makes me want them even more at times! (I never craved sweets before unless I was going into a pancreatic attack bc I was sufficient in a lot of things!) I have found alternatives to my "baby cravings" but honestly it isn't the same & truthfully I wasn't even eating enough of the real stuff to truly make my sugars go as high as they were in the first place! It just makes it SO not worth it! 

These are the things that are going through my head day in & day out the past few days & they just won't let go. I'm praying morning, noon & night & I know God is with me for better, worse & the inbetween but this is just difficult. Another part of the recovery that's showed it's true colors.. I have calmed a bit since talking to my trusty cousin who's been living with diabetes for years & he's been a big help to me & I can't thank him enough! It's always great to have this continued support & love from everyone & I'm truly blessed to have this support, encouragement & love!! 

Please continue to pray for my important islet cells to be okay, continue to thrive & mature within my trusty liver & put my fears to rest in that department.
Pray for peace, comfort, willpower to continue on, strength & courage!! I know the good Lord is with me through this difficult journey & will give me everything I need, when he's ready. The extra prayers & support are always welcomed, felt & completely appreciated!!
I love you all so very much! «3

1 month post-op visit!

WOW! I can't believe (a) I've actually made it to my 1 month post-op visit lol & (b) Has time stood still or did the time fly by?!?!

Things have been so crazy on my end I don't even know where to begin.. Let me just say, as I've said before... When I was forewarned about this recovery being one of the hardest things I'll go through in my life.. BOY were those people RIGHT!! I don't mean to say that to scare you guys in any way (especially if you're considering this surgery) but it's the honest truth & doesn't need to be sugar coated.. When my doctors told me it would be a year for recovery, I can see why now! The thing that has truly gotten me through just these first 5 weeks is my AMAZING support system; my awesome parents & grandparents, family that have been able to come around, some very amazing & blessed friends, as well & my awesome, amazing God!! I wouldn't be where I am today without the good Lord!! I can not begin to say thank you enough for all of the beautiful flowers I've received so far, as well as the sweet "Get Well" cards... Those make my day brighter everytime I see them & I enjoy every single one!!! With this recovery, I haven't ever experienced pain, the nausea & just a plain uncomfortable feeling as I have since surgery. My pain is still unfortunately still pretty bad, & my nausea isn't letting up much either. On top of my abdominal / back pain, I'm still having that obnoxious shoulder pain every couple days.. I was told today at my appt that it's still referred pain from my diaphragm being irritated & inflammed from surgery & who's to know how long that could take. My appetite hasn't returned & as I wrote before, could take up to 6-8 months before making its appearance again.. So until then we're going full force with the Boost Glucose Control & whatever tiny bit of protein I can stomach(3/4 grilled nuggets) followed by horrible pain from my new digestive system & extreme nausea.
I'm slowly working on getting comfortable in my own bed, yes it's taken me 5+weeks to STILL find that comfortable spot.. We're still working on it! LOL

I get exhausted after pretty much every activity I do right now, also a nice side effect of the surgery & my slowly having to regain all of my strength back. It's very hard for me & frustrating at times(this is the one thing I'm having a hard time grasping just because I'm use to going whenever & now I totally can't!) I have to nap after I eat, shower, go for a mini walk(to the stop sign & back), have visitors.. Doing anything takes a lot out of you..
It's SO wonderful having visitors though.. That always brightens my afternoon or evening up so if you're contemplating wanting to come by, please do.. Just shoot mom or I a text & well be looking out for u! :-)
I THINK.. Yes, think, i have officially gotten rid of every piece of tape residue that was residing on my body.. Finally!! You guys don't realize just HOW MUCH tape residue you acquire from being in the ICU for 5.5 days & the floor for 1.5days..its insane & EVERYWHERE! hah

My 1st monthly post-op doctors appointment went fairly well! The nutritionist, PA & my surgeon all said I looked really good & were happy to see how I looked. The nutritionist isn't worried with how my appetite isn't there, & she reiterated to me the timing it could take before it's epic return.. Like I'm. Constantly. Reminded... It's a Slow Steady Recovery... A year before you'll be back to normal.. I was told that again today.. No one wants to hear that.. Everyone was pleased with my blood sugar levels! Woohoo GO ME! I'm working hard on keeping those levels stable right now... Remember everyone.. We still need prayers & more prayers for those growing, thriving islet cells that were transplanted into my liver!! They need to keep growing & thriving so they'll work properly!! No dying for my cells!!!
My surgeon's plan for the next month is to hopefully get my pain & nausea a bit more under control. We've changed & upped my pain meds just a bit, as well as put me on a scheduled dose for my nausea meds.. The more they're in my system, the better controlled it'll be.. Similar to the pain-or any other type of medicine for that matter. I also had a little mini procedure during my visit today; I've had some sutures sticking out of my neck ever since a RN took out my central line, but left some souvenirs lol.. My surgeon got some pick-ups & started, ever so delicately(NO joke.. I couldn't even feel her moving & one suture was WAY embedded in my skin) started dissecting it out. There's still a little suture left but nothing like before! Go Dr Morgan! :)

I head back down to Charleston next month for another monthly visit, my appointment with the endocrinologist, as well as a clinical trial study work-up appointment.. If this appointment didn't exhaust me, next months agenda definitely will!

Thank you guys again SO much for all of your love, support & encouragement!! I wouldn't be where I am at today without everyone & I truly appreciate, love & am so grateful for every single one of you guys!!
                     SO MUCH LOVE ‹3

My scar the day after surgery, a few days after & recently now that the staples are out

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