Tuesday, June 23, 2015

The transplant Journey....

On June 5, 2015 at 4pm,  I was offically listed nation wide.   What exciting news to hear!  I was told to leave my phone on at all times so that they could get ahold of me when needed.  We were moving around the hotel slowly Saturday June 6 and at 10:30 am...my phone rings.  I looked at Shane and told him it's a Cleveland number.  When I answered it I was excpecting them to say congratulations on being listed and run over leaving my phone on..etc, but that's not the way it went.  She said it looks like we have a match for you. The intestinal transplant Dr's have  looked over it all to this point and it looks like this is it.... could you be here by noon?  YES!  She closed by reminding me that it could be a dry run. It's a 50/50 chance till the team looks at the donors organs from inside.  We were so excited and moving quickly.  Thankfully, my bags were totally packed I just needed to get myself ready.  

I wasn't even on the list 24 hours and already had a phone call! Those 2 days were already the start of many miracles to come.  I was so excited along with all my family and friends!  Yet as I talked I reminded people not just to pray for me, but my donors family.  Someone was heatbroke, grieving, hurting, and having the worst day of their life. 

We made it to the hospital by noon and went to registration.  Afterwards we headed up to G101, the transplant floor.  By the time we got in the room and went through the admitting questions we did pre-op stuff so that when the time came I would be set and ready to go, it was already 4pm and the nurse came in and said that around 7pm they would be taking me down. I asked her if it was a for sure thing and she said it was still a 50/50 chance till they took me into OR.  By 8 pm, transport came to take me.  We said prayers and gave hugs and then Shane and the kids followed me to a certain part of the OR, they were allowed to scrub and gown up and wait with me, but we thought it was best to part there.  I was placed right outside my OR room.  There, one of the surgeons sat a few minutes with me, then we did an anesthetic huddle.  The surgeon was moving things along saying we needed to get in there and get started.  I was in the hall for maybe 10 minutes tops then being put in the OR room.  I asked to pray before they began getting things togther.  The surgeon knew I wanted to and promised me we would before I went out.  Well, before transfering to the OR table everyone came around me and I prayed.  Once I got transferred over to the operating table, my surgeon said hey we need a time out so she can pray.  Everyone started laughing and said she's already done it!  He spoke up and said, lets do it again.  I prayed God's hand upon every person that would be in the room and to guide the surgeons hands, be with my family, and for the donors family as I know today was a hard day for them.   I asked for all to go well and for a speedy recovery....in Jesus name... everyone ended with AMEN. A few more minutes went by and I was out.  

The surgery took 14 hours. I remember waking up in ICU.  I remember the breathing tube and remember not being able to breathe at one point.  Not a good feeling.  I had all the bells and whistles all going off.  The nurse came and pushed the tube down my throat and that made thngs even worse.  My eyes were big and alarms were going off like crazy, so I knocked my feet against the bed rail to get anyones attention.  My nurse said she was gonna remove the tube and was getting things for it.  Glory halelujiah!!!  She came right back and took it out!!  Ahh, to sleep I went.  I was in and out of sleep.  I remember Shane, my parents, my in-laws, my Pastor's wife and another young lady, and all 3 of my kids coming back at different times. I remember when the kids were seeing me and one started crying.  I took my hand and made a u shaped smile and held it up to her face.  She giggled which was music to my ears.   Lots of noise in ICU so it's hard to get true rest.  

By Monday, they moved me up to the transplant floor.  Each new day had a miracle added to it.  By Tuesday, I had a rough day.  They said that going through something that big I would have good days and bad.  So thankful the good days out-weighed the bad though.  By Tuesday afternon, our families along with our Pastor and Wife decided it would be best to head home.  That was hard because it meant kids were going back to Illinois and it would be a long long bit before seeing them again.    

I know I'm gonna miss putting stuff in here, but I wanna move ahead a few days.. by Friday evening I was moved to the best room there!  The room had 2 full sets of windows along the 2 walls and  you could watch helicopters flying right in fornt of my window.  Bigger room and better view! At night time it was gorgeous!   By Saturday, I was able to eat clear foods.  No NG tube down my nose, no GTube in stomach to drain it right out and I didn't throw up.  It was so yummy!!!! By Sunday, when the surgeon came in and said that my jackson pratt drain tubes in my abdomen were showing I had a chylous leak.  I was able to stay on clear liquids that day, and was doing wonderful.  By Monday when the team did rounds, they said they would advance my diet to a soft fat free diet. Thank you, Lord!!  I was brought a turkey sandwich and steamed spinach along with pears.  I took the bread off cause I didn't want to to get full on the bread.  We Facetimed the kids and we were crying tears of joy!  6 years with no food and able to eat a few bites and it was so yummy!  That nite I had a grilled chicken breast with green beans and a bite of angel food with a few peach bites!!  Again...tears of joy!!  

I am enjoying  eating and easing into it.  I'm doing 6 small meals a day and I've only gotten sick 1 time.  Sometimes a little nauseated but I take meds for it only as needed.  I have been doing so well, it was decided I could be discharged to the hotel. Usually patients are in for an intestinal transplant for about a month.  I am the 2 patient to have been disharged this early. I am off TPN and just doing one IV bag for hydration daily. We made it to the hotel Friday, and everythings going great!  We still will be here 3-6 months post transplant so they can keep an eye for signs of rejection and infection. God has done miracle after miracle daily for me and it's been so amazing.  I feel better post transplant now, then  I did back a month ago. 

I am so thankful to GOD, to Him be all the glory for all that he has done!  Thank you to each of you for all of your prayers!!!  At this time my Mondays and Thursdays consist of labs at 7 am, a scope and biopsy to make sure all is well since transplant and then a follow up visit with my post transplant coordinator, dietary/nutrionist and seeing one of the Dr's on the team.  

I am so greatful at how well my recovery is going!  God is so good and wonderful!!!! I want to give Him the praise and thank HIM! Thank you to all of you for all the prayers, calls, emails, cards, financial blessings, love, and support.  Continue to please keep me in your prayers.   We serve an Awesome God and I stand in amazement of His goodness!

Love- Jamie


















Wednesday, June 10, 2015

Update

Jamie was discharged from ICU on Monday afternoon and had a bit of trouble caused by the transport and the rough ride and bed transfer. 

Tuesday was a rough day for her, but those are to be expected. 

Today, though, has been a great day! Intestines are starting to liven up and the doc gave the okay for her first Popsicle! A couple walks to the hallway and about and hour and a half sitting in a chair. 

Thanks you, Lord!

Sunday, June 7, 2015

It's a success!!

This is Shane, again. Jamie went in for surgery at 10:30 last night and the surgeon called at 7:30 this morning to let us know that the transplant was a success. They're getting her set up in ICU right now and we're waiting to pay a visit shortly. 

Saturday, June 6, 2015

The call!

This is Shane bringing the good news! At 10:30 this morning, Jamie received the phone call that we were waiting for, but certainly not what we were expecting so soon. Cleveland Clinic had a match and requested that she be checked in before noon. We made the drive and went through all of the pre-op procedure and finally went down to OR at 8:30 tonight. Surgery started at 10:30 and things are going good. Thanks for all the prayers and support. 

Friday, June 5, 2015

It's Official!


It's official, everyone. I am on the transplant list!   The past week has been long.   I have been  waiting to hear if the Ohio Solid Organ Transplant Consortium had approved me to be on the list.   Last Friday, the Consortium had sent back 4 questions to my transplant team to answer, then turned around Monday with a page of  questions again for the transplant team to answer.   They got it all answered and we waited to hear their decision.... I had an appointment with the team yesterday and they hadn't heard anything so we left there still waiting.   This afternoon I received a call from my nurse transplant coordinator that the Consortium approved it and she would be putting me on the transplant list.   An hour later she called me back and said it's official! We went over a few things I needed to do now that I am listed. One of those being that I get a bag packed so I'm ready when the call comes.   I said I just finished getting it ready and set to go a week and half ago!  We both had a chuckle over it.  Now, I wait for a call saying they have a match for me.  I realize that a "dry run" can happen and just gotta know it was in my best interest that it didn't happen.  Thank you so much for all of your prayers for my family and I they are greatly appreciated! 

Thank you for all of you who have helped us with making donations to my funding page.  Each donation that comes in is a blessing to us and helps us immensely whether it is great or small.   Expenses add up quickly when you add up hotel, travels to and from appointments, food, medical and the list goes on.   God is so good and we are thankful for the help we have and will receive.  Thank you for all of you who are sharing my funding page with family and friends.  Some are not able to give, but have shared it with others who have been able to.  Some have chosen to not go thru the funding page and send checks and gift cards or help with hotel cost.   Thank you.   I'm trying to keep up with thank you notes and apologize if I miss anyone.  I know there's a few who have given to my funding page and I don't know them or where they live... Thank you!!!  Thank you from my heart for your support whether its  been your love, prayers, emails, texts, cards, phone calls, or financially.   God is so wonderful and I don't want to fail to give Him all the glory!!! 

Another quick thing, thank you for all of my 40th birthday wishes!   I am so blessed to be given another year! I didn't get to have a bite of steak or any birthday cake....but here in the soon future I plan to.   Even though that was my big birthday wish, I still had a wonderful birthday!  Thank you so much for making it an extra special day for me!

With love,
Jamie 

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! 
Love,
Jamie



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!

Love,
Jamie