Tuesday, May 26, 2015

It's a long process!!

Okay, everyone...this is taking alot longer than I thought!  Wait.  Yes, I'm waiting and getting ready to do more waiting once I go on the list.  I didn't  update sooner than this due to not knowing really what was going on until today.  I know that a summary letter was done for the State of Ohio transplant board, but my transplant doctor left for this week without it being signed.   I took a breath and the lady said we can have one of the other transplant Doctors sign it once he's out of surgery tonight.  People, that is some good news to this girl.  If that gets in the mail and to them maybe Thursday or so...they have 5 days to respond(usually it takes less than that for them to respond) then ...maybe i can be listed next week.  I didn't realize that all of these steps take time.  Everything needs checked, checked again, and yes checked once more.  I realize the importance of making sure everything's in order, I'm just ready to get the ball rolling.  We have been here since April 2 and I know it'll be between 3-6 months post transplant before coming back home.  I'm learning quickly, very quickly, patience as a patient is the key. In reality, things to me seem like they are moving like molasses (lol), but I am very blessed to be already this far in the process.   

I have got to meet some special people in the past few weeks and keep in contact with them.  I've got to meet and talk with a sweet girl who has had the intestinal transplant. I got a chance to ask her some questions I had and got to hear her story.   A week later, I met another sweet girl who also is getting ready to face an intestinal transplant.  Then back at the end of April when I was being discharged from having the line infection, I was on the elevator and meet a Dad who is here from Mississippi with his son.  He gave me his business card to keep in contact with him.  I emailed him last Monday to see how things were going for him.  Thursday morning, i was in the breakfast room with the kids and the lady from the front desk said-hey i checked in someone whose family had an intestinal transplant!   She said I told them about you!  I said hum... I wonder if it was this guy's son?  She said if i see him, I'll be sure to introduce you two!  Afterwards, I came up to my hotel room and glanced for the morning through my emails and there was one from the father saying-"we are staying at the Marriott TownePlace Suites in Westlake.  The lady at the front desk talked about a girl that fits your description, I don't suppose that would be you, would it?"  They were discharging his son from the hospital and would be staying here.  I responded  back with a YES.  Thankfully they were able to help him without having to do the transplant, but needs to still stay for 2-3 weeks.  I haven't had the chance to meet him, but have meet with his parents and his wife.  They are so kind.  I am so thankful that God's allowed my path to cross with each of them.   What a blessing!!!

They have had some beautiful weather here! The kids have enjoyed having Shane take them to the metroparks and Lake Erie.  We have enjoyed the past 3 weeks or so watching baby gosslings on our way to and from the hotel. They are losing their baby fuzzy look and aren't as cute, but still fun watching them grow.  It was neat watching them try to jump on the curb to be with Mama.   They would try and miss and try and miss.  You just wanted to go and help lift them up into the grass, but no way that's gonna happen with Mama cranking her neck all over and hissing.  Eeks!   Now we are enjoying ducklings this week!  I'm waiting for one of the kids to have bath water in the tub and one floating around.   I have some kiddos that would try if they could!  We are enjoying being togther and the memories we are building together with time we have before the transplant.  Lots of precious memories with my precious family! God is so good to me and I AM A VERY BLESSED PERSON! 

I have been having my challenges and take it a day at a time.   I get worn out very fast.  Trying my best to be extra careful with my line also.  They gave me some extra ideas as safety measures just to help before the transplant. We were able to have some bone strengthener thru my central line which is benefical since I have issues with that already and post transplant could have more.  The transplant doctor was hoping I could my numbers up high enough to do the medication before the transplant.   We got it up there, so glad that's one thing thats behind me.  Bad thing... Side effects from this medication-nausea, vomitting, fever, flu like symptoms-body aches, muscle pain, bone pain, joint pain, and headache.  Sounds fun!  NOT!   And yes, it hit me.  When I called the on call endocrinologist to let them know I was still having the symptoms and she said oh... they could last up to 14 days.  Thankfully, they didn't last that long!  My In Home Care nurse came today and had an issue with my central line.   She had labs to draw for my TPN, and could't get blood to pull back.   I haven't had issues with my line.  It's flushed beautifully and been fine.   She called and I was told to go to the ER, at main campus.  That was an experience.  My purse was checked and I had to go through the metal detector, along with everyone else and then be patted down.   I wasn't the only one.   Every person entering through the ER had to.  No one can just go through the sliding doors to enter.  Not sure if that's something new or not, but it's a good precaution.  

I can't say thank you enough for all of you who have been praying for us!! It is greatly appreciated along with all the emails, calls, and cards.   Also, big thank you to each of you who have helped us financially.  Things can add up quick with the hotel, food, gas, bills, and the list goes on.   No matter what you have given, each amount that we've recieved is a blessing!!! A huge blessing!   Thank you so much!   Some have asked if they can share my blog or funding page with others?  Yes- the more help, the better!  Thank you for of you who have shared it! 

So glad that God is with me each step I take.  If it weren't for Him, I would not be here today.   He is beside me and I don't ever want to lose my grip of having my hand in His.  I don't want to get too far behind Him or ahead of Him.   He is my strength and has brought me this far and will not leave me.   His love is far greater than I could ever love!   

Have a wonderful week! 

Friday, May 15, 2015

Quick Update :) I'm Moving Up :)

Between the past 2 weeks, I have gone through many tests and doctor appointments.  Some tests got bumped back and had to have them rescheduled which put me a bit behind schedule.  We were told it was looking like my selection committee meeting with all the doctors that I've seen along with those who will be taking part of my care after transplant would be moved from the 14th to the 21st.  I know its's only a week...but its a whole week of the waiting.   I'm ready to move this into fast forward a bit faster lol.   I got a phone call at 9:30 Tuesday night from my nurse transplant cordinator.   She was still at the office trying to get all my files together to be able to make it for the selection committe for the 14th.   We missed a cat scan that was needing done, so she was there early Wednesday to get me scheduled in for that.  With all of her hard work she was able to present me before the panel of doctors on the 14th 😊.   She called asking if I really wanted to know how things went....UM YES!!!   She said all went well and that it was decided that only the intestine would be transplanted.  I'm not sure the reason for keeping the stomach with it not functioning...but i know with the stomach being transplanted the pancreas would need to be also.  My pancrease is good , and the more I can keep of my own the better, with rejection.    The next step is approval through the state of Ohio transplant board.  It's a second panel of doctors who look over my case and make sure that this is the only option and best option for me.  They have 5 days to respond once they receive the letter amd it usually doesn't take that long for them to respond.   Also need cleared and approved by insurance, which I have got a call this morning on from the transplant financial department.  That is all approved and ready to go.  Not sure, but by the way things are going, maybe by the end of next week I can be on the transplant list.   I have to see the allergist again, due to a medication they give in the OR to transplant patients to make sure I don't have an allergy to it.  I'll update next week once we know more! 😊

Thank you once again to every donation that has been made! Each donation, is a blessing no matter the amount.   Feel free to share my blog or funding page with others! Also thank you for the support you've shown to us thru your love,prayers,cards, emails, and phone calls . 

I'm so thankful for God's strength day to day.  He knows my every need and if he cares about a sparrow, how much more does He care for me. He is my Great Physication, Peace, Strength...and so much more.   All my tomorrows have to pass by Him, before they come to me.   He is so good to me!


Monday, May 4, 2015

Things are moving forward!

Things are starting to move forward :)

I started an update that I thought was saved but wasn't so I'll do my best to back track and fill you in.  

Things are starting to pick up with the process of getting ready to go on the transplant list.  The Lord gave me a HUGE miracle regarding some paper work for insurance.  I was in tears thinking I was following all the steps and doing all that I needed to do on my part.  Not the case when I made a phone call one Friday mid-morning.  I got off the phone in tears feeling like everything I had done the past several weeks was all for nothing.  I talked with Shane and explained what was going on and we explained to the kids that we needed for God to help in the situation.  Nothing is too big or too little for God to step in and change things.  Another lady called me that afternoon and after explaining my situation to her, she asked if she could call me back in about 10 minutes.  When she called me back, things that were to take another week or two were done right then.  GOD is so GOOD!!  We rejoiced and cried tears of joy for the answered prayer.:)

In the meantime I have fought some low grade temperatures so I called my doctor...and was told to go to the ER.  In flushing my central line, the line broke.  Not good.  The ER doctor did some blood cultures and lab work and then called my doctor to update him.  Since my counts for infection were within normal range, I was sent home to watch the temps and come back if they got worse.  They would be keeping an eye on the blood cultures, knowing that it would take 24 hours for the results and would call me if anything was growing.  I got a phone call the next morning saying I needed to go to the hospital and be admitted for a line infection.  I had to have the line removed and wait for the cultures to come back negative before placing a new line.  The doctor there decided that it would help me to just have 1 line, however my own doctors were not made aware of the change.  I woke up to my nurse flushing my line back in my room, noticing then I only had one line.  The lipids for my TPN are not compatible with one of my IV nausea medications. It took me a few days of waiting to get the line placed already so I wasn't interested in camping out there a few more days. They made it work for the time being and this Tuesday I have to go back in to have it replaced as 2 lines since I'll need it that way for the transplant also.  Even if they would have been able to switch it out the next day, my body wasn't ready to do the change out.  It takes about a week for the soreness to work its way out.  Also glad it happened now before being on the transplant list, because things would have to be placed on hold for that to clear up before having the transplant done.

While I was in the hospital walking the halls I came across a girl crying, with a box of tissues in her hand.  Talk about break your heart.  I didn't want to come across as nosey, but I couldn't just pass by and leave her alone.  She told me through her tears that her Mom was here to have a stent placed in her liver.  She had a liver transplant in the past and wasn't doing well from having the stent placed due to some lung issues and being on the ventilator.  After praying for her and her Mom, I told her if she needed me, to just come to my room.  I told her my name and said she could just ask my room number at the desk.  That evening I heard a code called for the area where her Mom was.  A few hours passed and I went on my walk for the night and the room was empty.  I'm not sure what happened and have still had her come to my mind, and continue to pray for them.  I don't know what the outcome was...BUT GOD does and even tho I don't know her name He knows all the details.  I just don't want to miss any chance that I have to be the willing vessel that He has called me to be.  I want to have a sensitive heart.

I got to meet a new "friend" thru sharing a room.  She was sweet and we talked, laughed, and yes shared some recipes!!  I now have a new recipe for homemade cornbread-no more jiffy!  Can't wait to not just make it, but enjoy eating it also!  Oh, and can't forget to add butter to the top of it!! YUMMMMY  

It's a full week of testing, doctor appointments, more testing and pre-op appointments too.  After this week I still have a few more to add to the list but this is the fullest part of the schedule of events.  It started with 25 vials of blood for well over 25 tests ordered. Yes even though I only have 1 line, I am glad that I at least have a central line to draw the blood.

It looks like May 14th I will have my case presented before the board of all the doctors involved with the pretesting and any doctor involved with the transplant. I will keep the blog updated before then and update you once I hear that things move to the next step for going on the list.  

So thankful that we are able to go to church while we are here. The kids have other friends their age which is nice.  The church understands the reason why we are here and have all been so kind.  They also have began praying for my family and me.  God is so wonderful in allowing me to have people all over the place to call out me and my family in prayer. Not just from Illinois and Ohio, but throughout the world.  I am so thankful that we are not having to face this alone.

While I was in the hospital Shane needed to go home a few days so his Dad and Mom came, stayed the night.  His Mom stayed and his Dad, Kelsey, and Shane took off to go to Princeton.  He came back 2 days later with Kelsey, bringing more things for me from home.  I hope by the time we go home to Illinois I'm not needing a UHAUL!  LOL !  It was nice to have his mom here to help, with me being in the hospital.  While Shane was meeting his dad to take his Mom back, the girls and I had some Mom and Daughter time.  It was way past due and much needed.  I am thankful that I have been blessed with two beautiful young ladies. They are just growing too quickly and time needs to slow down just a bit.  They had noticed that a bookstore was hosting a book signing with Jim Brickman.  Saturday we had the chance to go to it and hear him play a few songs, take a few questions and do a book signing.  We were in line to see if we could get a picture with him and the lady behind me turned to ask if I had purchased the book.  I told her no ma'am and she placed her book on my lap.  Once she got back in line from getting herself another book she handed me a CD also.  I sat there with tears saying thank you.

Thank you so much to all of you who have helped us financially.   There are some who have made donations thru the National Foundation for Transplant that I don't even know.  Thank you!  Every bit helps.  What a blessing! 

Thank you for all the love and support you have shown to us through prayers, emails, cards...!  A huge thank you from all of us!  

Thankful that God cares and knows our every need and that each step I take HE is right there.  I am so grateful for His love for me.   He knows my name.  Without Him, I wouldn't be here today.   He guides my footsteps and wipes my tears, gives me peace in the midst of each storm, and everlasting joy.  We serve a Great Big Wonderful GOD! 

Have a wonderful day!