I'll be home for Christmas...

It's been busy since my last update and lots to catch you up on.  I had a wonderful Thanksgiving.  The food was all yummy and  very tasty.  I definitely ate my share and more.  But more than my stomach being full, my heart was bursting with gratitude for all the many blessings from God!!!  I have so much to be Thankful for!  I know I say it a lot on here, but I am beyond blessed!  This is nothing I've done, but God and all your prayers. To God be all the glory! 

We've made a few trips back and forth to Cleveland since my last post. Shane and I took off the Sunday before Thanksgiving when we had the bad snow storm that weekend. Not good!  We counted over 15 vehicles in ditches between Princeton and Morris.  Some people were still in the car waiting for a police officer to arrive but alright, other cars were sitting empty from what looked like a few hours prior.  After counting the 15th one, we watched from the opposite side of the interstate a car slide into the ditch and roll 2-3 times.  I was done after seeing that happen right before my eyes. I just cried and prayed and was ready to go back home.  Thankfully God protected us and the roads were clear from that point on and we were able to make it safely to Cleveland.  We returned back for another scope, biopsy, and doctors appointment the second week of December.  After the appointment we stayed for a dinner that they were serving to the liver and intestinal transplant patients.  We stayed over, and the next morning went to Life Banc,  an organ procurement center.  There I shared my story with the staff. There was probably 40-50 staff and not many dry eyes by the time I wrapped it up.  It was extra special having Shane and the children sitting in the front. As we were leaving this lady came running after us as we were backing up. She introduced herself and said,  "I'm Julie, the one who called you the day we had a match for you."  She was someone I hadn't met through my process and was it neat to finally meet her.  We made one more trip this past Tuesday for a scope, biopsy, and appointment.  We took thte kids with, because if I had to stay there we wanted to all be together for Christmas.  Turns out all was well and we were able to come home, just in time for Christmas.  We made it there at 1:30 am. We got to bed around 2 am, got up at 5 am and out the door and on the road by 6 am. I had labs at 7 am and then a scope and biopsy. Afterwards, a doctors appointment, a liter of fluid, a nap at the hotel and a text later that afternoon saying all is well, head home.  So, back on the road once again, but happy to be heading home.

I have still been having issues with a high creatinine and having to do IV fluids to help flush my kidneys.  For this reason I will be having my stoma reversed or taken down. They feel that it will help my creatinine level and allow me to absorb more.  They were looking at doing this in December, but I just couldn't put my family thru that around Christmas time.  I wanted to enjoy not having to be in the hospital or sick.  They were okay with that,  so we are juggling around the doctors schedules for a date. Not positive, but maybe looking at the 3rd week of January.  Excited to get the last thing finished and behind me, but not looking forward to another surgery & being gone around 2 weeks or so, but I know it needs done.  Other than that,  things continue to be going well besides the migraines, but hard to complain when looking back how my health was a year ago.   I am getting ready to go on my 7 months post transplant!  Thank the Lord for my Miracle!  Christmas was a little rough at times for me as I thought of my Donors Family grieving, my heart hurt for them.  My heart ached for them knowing they were missing one around the table or sitting in the living room. The first year without their loved one. All I knew to do was pray for them.  Yes, I  sent a letter and a few cards to them within the past 3 months.  I was really hoping to hear from the family by now, but it hasn't happened.  The way the process works is, I send my card unsealed to LifeBanc, they contact the family each time I send a card, the family decides yes or no to having it forwarded to them. They thankfully have said yes every time.  Then the process is the same if they send a card to me.   Live each day as a gift from God.

The children are doing good!! They are keeping busy with school.  They have been a wonderful help around the house with things. I think Matthew keeps growing about every couple weeks.  I'm so thankful for the 3 precious blessings God has given to us.  They each are a blessing in their own unique way. They all love God and have tender hearts.  I pray as they get older, that continues.  For Sunday School they did Random Acts of Kindness throughout the year.  I have tried putting that in them prior to the RAKS being done.  I just want them to be sensitive to others needs and help brighten others days regardless if they are rewarded for it or not.  We live in a self centered society and I want my children learning to give.  And that it doesn't have to be of finances, but maybe their time, or some of their abilities.  It pushed them to come out of their shells and let Gods love shine through them.  Our church choir did a Christmas musical and the girls were in it.  The songs were beautiful and the presence of the Lord was there!  I love our children and am so glad we are able to build memories with them. Time is flying by and they are growing fast.  

Some have asked about my comment section.  You can not leave a comment on the blog, but I do have email.   My email is j-pennington@live.com    

I also had some ask if I'll be staying in the hospital the time we are there for the surgery in January.   I will be in for 4 days or so, but before and after we will be staying in the hotel we usually do.  The funding page is on my blog, for those of you who have asked about donating to it. It will be up as long as I'm kicking and breathing.  There will always be expenses between trips back and forth to Ohio, hotels, hospital bills, medications, and the list goes on...    God has been so good to us and blessed us time and time again whether its been a big or small donation-its all a huge blessing!  

I hope to update this by next week, but in the mean time I'll leave you with a quote I read at the end of my speech 

Life is like a camera 

You focus on what's important

Capture the good times

Develope from the negative 

And if things don't work out take another shot

No longer residing in Ohio :)

Wow!!! So much to catch up on!  Forgive me if I miss something, but so much has gone on.   I got the green light to go back home to Princeton in September.  We had lots of packing, and more packing and loading up of vehicles.  We weren't able to get everything in the two vehicles so we left some in Cleveland knowing we would be back in two weeks.  We were definitely loaded down no doubt!  We headed home September 11 after I finished a Dr. appointment.   

The trip went well besides me driving thru Chicago area.   Not my cup of tea people.  Thankfully, I have a very patient husband who was able to guide me on the phone.  The girls rode with me and still laugh about me talking about driving in Chicago.  It's not for this girl. Ha!  

Anyway...when I pulled into Princeton it felt GREAT TO BE HOME!  The following day I tried to surprise all I could by riding in the back of my Pastor and wife's Polaris.  It was all decorated up and I held a sign saying "A miracle is home from Cleveland Clinic".  It was so fun to see the shock in so many faces. Some were shocked, some just gave a little wave then recognized it was me and gave a really big wave then, some cried, and many had big smiles on their faces.  I had people yelling back or coming up to me and saying welcome home.  It was so much fun! What a neat way to let everyone know....I'm back home!   

I am so blessed! It was only 4 months post transplant and I was able to be home.   It felt good to be in my own bed, my own kitchen cooking, getting clothes out of my closet, use my own towels, have my ceiling fan running in my bedroom, cook in my kitchen, and sit at my dinning room table.  Feels good to eat at the local restaurants. Thank you for those of you who have blessed us with gift cards to eat out at some of them.  I've missed seeing family and friends while gone and being able to be back with them.  I've enjoyed being able to be in our church.  So thankful for a church to go to in Ohio and for them taking us under their wing, but nothing like being home again.  I stand in awe of God's goodness to me. 

I was able to come home if I promised my Dr's I would return every two weeks.  Quick trips, but well worth it to be able to home and not the hotel this whole time.  Things for the most part are going well. I still am fighting some little things going on like the headaches.  My labs about 2 1/2 weeks ago showed by Creatine and BUN were elevated enough they were concerned about it.  So, while waiting in a lobby to pass time before my Dr appointment with them I received a call saying I needed to be admitted as observation to get fluids. I had 4 bags of sodium bicarbonate and at least 2 bags of normal saline in less than 24 hours. I was discharged from the hospital, but has to stay local till Wednesday and then I could go home after my appointment.  By Wednesday I had 10 pounds of fluid on me! My face to my feet were swollen.  Even my eyelids.  I got home and since then I've had to do more fluids due to the creatine going up.   They gave me 2 kinds of IV medications to get rid of fluid which did help in just a few hours I lost all the fluid in my face and feet and the 10 pounds.   By Friday my labs were done again and I needed a bag and half of IV fluid to bring down the creatine again. They    asked if I'd have it rechecked on Saturday morning again to be on the safe side.  I got a phone call mid morning with news that my creatine only went down one point and that we needed to come to Cleveland to be admitted.  They wanted to make sure there was no rejection going on and try to flush me with more IV fluid.   When I got the call, I was in the middle of preparing food for an 8th grade graduation party for Kelsey.  I was having a family party for her at noon.   I explained what I was doing and asked if I could head for Ohio afterwards.   Thankfully they said yes that would be fine, but if needed I was ready to pack and head right then.  So, I packed very quickly and headed off to do her party.  Our car was packed so by 3ish we were on the road for Ohio.  My Physican Assistant called me that evening saying they had a bed held for me on transplant floor.  By 11:30 pm we arrived and around 2:30 am they had finished and was able to sleep for a lil bit. My biopsy Sunday came back as inflammation, but NO rejection! Praise the Lord!   Music to my ears!    

I was able to meet a sweet young lady who is looking at having to go on the transplant list.  I was able to share some of my story with her.  Looking at her in bed reminded me of myself the past several years and my heart hurt for her.  I pray I was able to be a blessing to her.  

I'm back home again now and they are keeping a close eye on my labs.  If my creatine is still misbehaving on Monday, I'll be having to go back to Cleveland for another checkup, but if all is stable...I can wait another 2 weeks.  That would be wonderful!  Yesterday was my 5 month anniversary for my transplant. I'm so grateful that everything is going so well.  Yes, there's bumps along the way, but nothing like the bumps I've faced the past several year.  I feel so much better and I am so blessed! I am enjoying life and all that it brings.  

A big thank you for those who have donated to my fund through the website or by mail.  What a blessing with us having to make trips there every 2 weeks and the expense of hotel cost also.  It starts to add up quickly.  So thank you so much!!! Also thank you for all your continued prayers, cards, and emails.   It is all very much appreciated!  

The kids are so glad to be home and back into their own surroundings and routines.  School is going pretty good for them.  Kelsey is in 9th grade, Kailey is in 6th grade, and Mr. Matthew is in 5th grade.  Seems like just yesterday they were in preschool...what happened?  They are each unique and special in their own way.  What blessings they are to us! We are enjoying being a family and doing things together.  Building memories.   

Tomorrow is a special day for us.  We said I do...19 years ago! A commitment to each other for a lifetime.  To love each other in the good times and the bad, sickness and in health, rich or poor.   God has been so good to us!   He's brought us thru the mountain tops and valleys.  There's been hard times but together we have made it through with God's help.  So thankful for my husband!   He's been by my side thru the thick and thin.  In the day and age we are living in when a spouse is very ill for a lengthy time the marriage doesn't make it a lot of times.  So glad honey, that we are enjoying this amazing journey together.   I wouldn't want it with any but you! 19 years ago walking down the isle hand in hand as Mr. And Mrs. Pennington.  I love you more than I did that day.  

Here's a few pictures for you all enjoy.    

My first hamburger and zucchini.  DELICIOUS 

Cheesecake Factory....YUMMY

LIFE BANC 

I'm home!!!

KIDS, and TOMATOES, and STEAK...oh my!!!

It's not lions, and tigers, and bears, oh my!  Lots to update you on though.  First thing, my heart is full and dancing with my 3 precious kiddos being back here with us. All 3 of them have grown.  Their voices are music to my ears.  Lots of hugs and kisses, giggles and laughter, picnic, cookie making, hamburger eating, walking in the park, grocery shopping, going together as a family to church, ice cream cones, watching the sunset at the lake, prayer time, and the list continues to go on.   We are doing things as a FAMILY and it feels so wonderful.  It's so nice to be a part of the outings and do things not watching from the side lines or staying back because I'm too sick.  

The kids have started school  and are working hard.  I have full appointments still on Mondays so they don't do their offical school those days.  They keep themselves busy with reading  a book on a President or a State and then do a report on it.  We move through 4 different buildings, so if they did their actual school, by the time they got set up and logged in, it's time to move on to the next place.

Things are going well with me.  No signs of rejection, praise the Lord!  I still have rough days like fighting bad headaches from the prograff ( anti-rejection) medication.  Still with the things I am having issues with it's better than how things were before.  Thank the Lord!  I've been able to add more foods to my list to eat.  I've had a few tomatoe sandwiches which were yummy. I've also been able to add a few more fresh fruits to it also.  And a drum roll please....a juicy delicious New York Strip.  I savored every bite, with not one piece left behind.  I didn't feel nauseated nor did I get sick!!  Thank you LORD!!!

As of right now I'm still doing labs, scope and biopsy, and Dr. appointments every Monday.  That means up at 5 am and on the road by 6 get there for labs at 7 and end the day usually around 4-5 pm.  The kids experienced their first BIG day like that last week and handled it very well.   

Hard to believe it's already been 2 months and getting ready to go on my 3 month aninversary!  So blessed for every miracle God has given to me.  Without HIM and your prayers I wouldn't be this far!  I am greatful for your prayers, love and support.  A BIG thank you for each of you who have helped support us financially.  Each of you who have given through the funding page that's on my blog here on the right side or sent it in a card.  I understand times are tough so not everyne is able to help that way.  Whether it was great or small, I promise it's a huge blessing to us with us having a house and hotel to pay for along with a lot of added expenses.  Also thanks to those who have brightened my day with cards and letters.  It's one of the highlights in my the day to go down to the desk and get mail. To open and read a card and it not be a bill or something medical.  Just little things that make my day.  

I've been able to meet a few sweet fellow intestinal transplants patients and get their info to keep in touch with them.  Also got to catch up with my sweet roommate who had a liver transplant.  Our families went and had icecream together after her appointent.  So thankful that God has allowed  all our paths to cross and meet others.  I pray I can be a blessing to those around me.  

May you have a wonderful week!!

With love-

Jamie

A few steps back...but gaining ground again :)

I'll try to do my best to fill you in on what's gone on the past few weeks.   Back on July 12th, Shane left to head back home for the week to catch up on a few things around home and the shop.  His Mom and Aunt came to stay with me while he was gone.  He left the hotel around 5 am and at 5:30 I woke up to a low grade temp.   I took some tylenol and went back to bed, only to wake up around 7:30 to a fever of 102.3.  Not good! I immediately got on the phone and called my transplant coordinator.  Couldn't  reach her so I called the on call transplant coordinator.  She called the doctor and he wanted me to come as a direct admit to transplant floor.   So we got my bags and out the door to the hospital.  I was seen by the team that afternoon and evening.  They did a scope and biopsy to check for rejection and blood cultures along with more bloodwork to check on things.  That evening they came back and it was decided with me being on an immunosuppressant and weakened immune system that my central line must be pulled.  No waiting on it either, with the Dr's still in there deciding orders, a nurse had 2 IV's in my left arm and they getting ready to pull the line...at the bedside.  Not my cup of tea people.  I don't really wanna know when one of those are being placed in me or being pulled.  Sorry, but this girls been through enough!  Anyways, it was taken out and done.  I continued to shake, fever, and chill the next few days.  I couldn't think much, talk, walk... just was one pretty sick person.  I guess when you have a temperature of 105.0 all you can do is try to sleep it off between being packed it icepacks.  I was treated with 2 antibiotics for a line infection but when they scoped and biopsied on Tuesday it came back showing mild rejection which they used a big dose of IV steroid so that got me back on coarse.  I had a wonderful roommate that's super sweet! I got to go home Thursday afternoon, but had to be back for labs, biopsy, scope and doctor's appointment the next morning.  I felt like I had a big set back but knew I was doing better than before I came in, just needed to get my strength  back.   It was ruled out that it wasn't a line infection and was mild rejection, but since they treated it with the dose of IV steroid we are good.  My biopsy and scope since then has been fine.   Some have asked if it's rejection do I have to have the intestine taken out?  No, they start with the IV steroids and will step up to some chemo meds, and then there's "bigger guns" as they say, to use.   They have different options to use to keep tweaking it and absolute last resort would be removing it, but very rarely does it get to that point they said.  I'm just very thankful for God bringing me through it and for those of you who knew and prayed.  I am so blessed and glad that God's right by my side in the valleys and the mountains.  He's so good to me and so grateful for I am a MIRACLE!!

I'm so enjoying everyday!  The little things like going on walks with Shane and holding his hand.  Not having him push me in a wheelchair and be behind me but walking side by side and hand in hand.  We've gone to the park and had supper together, we've shared a monte cristo sandwich together.  Yummy!!! I am enjoying trying new foods. I got to add a few fresh fruits to my menu. Peaches and plums with no skin and avacado and mango.   If all is tolerated they said maybe next week they'll add some fresh veggies.   To sink my teeth in some crunchy veggies ...yum!  I told them I'm hungry for a tomato sandwich.  All of you tomato lovers understand that it's the season for them.   I don't want my first tomato to be a store bought one. Ha! For now, I'm enjoying each bite of my "new foods".  It's the simple little things!  By the way, I'm holding everything down and it's not coming back up.  

Once again thank you to all of you who have prayed, called, sent emails, cards, and monetary donations.   Each has been a blessing and helped, whether it's been great or small, it is a blessing.  Especially with us being here and having the house in Princeton.  God is so good and is our provider.  Thank you for all your love and support.  At the beginning of August, we'll have the kids here and I am  very much ready to have them back! Missing them like crazy and can't wait to give them all a HUGE squeeze and sit down and eat with them as a family!  Don't take the little things in life for granted.  

With love-Jamie 

One Month

Monday, July 6th was my one month for my transplant.  Time has gone fast in someways!!  I am so thankful that God has given me a speedy recovery!!  I feel so much better.  I am enjoying living!! Being able to walk in a grocery store and not be in a motorized cart or being pushed in a wheelchair.  I'm walking a 1/2 -1 mile a day.  Don't worry, it's not all at once.  

I am enjoying being able to eat more foods!  So far some new things have been enjoying...raviolli with spagetti sauce, frozen cheese pizza, and the best one... 2 kiddie cheeseburgers with really grilled well zuchinni!!  All of that has stayed down and tasted wonderful!!  I still have some things I'm restricted from eating, but that's alright, I'm enjoying what I'm allowed to eat at this point. 

I have been fighting a headache off and on which they feel is from the antirejection mediction.  I was wanting to do the post last week, but my head was hurting too bad to even try. My appointments are all going well.  Still checking my bloodwork on a few things to get adjusted.  I'm doing  IV bags of fluid 1 time a day for 3 hours which helps kep things in balance.  It's not that I'm not eating and drinking enough, it's just a matter of my body adjusting to all of this too.  My scopes and biopsies are all looking good.  They are going to cut back to 1 scope and biopsy per week unless they see the need to change it.  At this point we are still here for 3-6 months to be monitored for any rejection.  If I get home and it happens, I was told it would be a helicopter flight back here... that would be no fun.  I think I'll be patient and wait it out.  

I feel so blessed by the prayers, love, cards, emails, phone calls, and donations!!!  God is so awesome and I give Him the thanks!!  Thank you to all of you of.  Some have told me that they are having issues leaving comments under my blog post, but I chose not to have them posted on there.  If you want to contact me, my email is on the right side.:) I can't thank you all for the many prayers!  We serve a Great and Mighty God!!!  

There's some little people in my life I'm really missing... My kids!!  It's been a month and as time goes by it doesn't get easier!  We are hopping to get them back here the first week of August.  It has sure been different walking past their empty room, hearing giggling going on or someone saying, "Mom would you tell..."  Big bear hugs from a lil man, sweet kisses on my cheeks from from sweet girls.  We facetime, talk on the phone and send pictures back and forth.  I am so proud of them! They have had to go thru alot and are doing well.  We explained that it won't be long before they ae back here with us and will miss being in Princeton, so enjoy the time you have there now.  In the meantime, we'll get a few more date nights in before the kiddos come back.  Thank you for continuing to keep my family and I in prayer.  I'll try to keep this updated :)

To God be all the glory

With Love and many Thanks-

Jamie                                                                                                                        

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

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!

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. 

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. 

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 

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

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 

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!

Love-

Jamie

We are here in Ohio

WOW! My head spins trying to go back since December and fill you in. I apologize for not keeping up on the blog better than I have and hope to do a better job from here on out. I'll just back up to just a few weeks ago and let you in on bit of my new journey I'm on-but not alone!:) I am now residing for some time here in Ohio. I received a phone call March 20 that we needed to be here in Ohio to get the ball rolling to be placed on the transplant list. Since my surgery in November there has been some things that have improved, but some things that haven't. Between my transplant surgeon, transplant nurse, and transplant social worker, they decided this is the next step we need to enter into. With much prayer and consideration of a lot of other things,we have made the tough decision to make the move. I am not on the list at the present time, but will be going on it soon. There's a few things we need to do before going on the list and once that's done, then a handful of doctors and a few test to clear me for the transplant list. That gave me 2 weeks to get some of my house packed up and ready to put on the market to sell. To pack ALL of my medical "stuff". I hope to leave some of that here in Cleveland once I get to come home again. To decide what clothes to take for spring and summer. I am a girl and 5 outfits are not enough for me to make it through a week:) NO more needs to be said on that.:) Getting important documents together. Helping 3 kids pack some clothes and their school things, fix a few meals and throw them in the freezer to have for while we are in Ohio so I didn't have to bring my kitchen with me. By the time I got my "things" all together I realized I had too much! So then, I had to go back thru and condense a few boxes together and decide what I could leave behind for a bit. It was a BUSY 2 weeks that went by too fast! We decided that Shane would bring Kelsey and I on out to Ohio first, so on April 2 we left and made it from Princeton Illinois to Westlake Ohio. Lots of loading up a car and unloading of a car in one day! He headed back to Princeton on the 4th to get the younger two and they came back to Ohio on the 8th. Kelsey and I were able to get the room unpacked and things put away before the rest of the family got back. I enjoyed the time that we had together, but I sure did miss being a complete family. The Marriott TownePlace Suites have a 2 bedroom apartment and we felt that would be our best option. It has a little kitchen with a small stove/oven, fridge, dishwasher.... There is a transplant house, but we have 3 children that will be with us off and on. We are doing some family things together while we have the time and chance too. We have done an art gallery and nature museum. Shane has taken the kids on walks to Lake Erie and a few parks to give me some time to catch some rest. We are enjoying our time that we have together:)We were able to go to church on Sunday morning then came back to the room that afternoon to rest. The kids are troopers, and are handling it well. We keep reminding each other in rough moments that this is only temporary. Since we have been here I have been fighting a little bit of sinus issues and doing better but it seems like my energy level has been zapped. Also with adjusting to the time change-Ohio is an hour ahead of us. Yes, I know it's an hour but it makes a difference.:) I have people asking what they can do to help. I have a page on the National Foundation for Transplants set up. I do have a link for it on the right side bar that you can go to if you would like to make a donation. I have had many people already donate which we are very thankful for. Any amount is greatly appreciated- especially when you consider all the cost involved. I realize not everyone is in the position of being able to donate financially, but please keep our family in your prayers. Also please pass this along to your family and friends. I was touched because my very first donation on my page was someone who doesn't even know myself or my family. My page was shared with them from one of my family members and they made the donation. I am so thankful that I am not walking this alone, but He is with me every step I take. So glad that He is always here and will not leave or forsake me. I am so grateful for everything He has done and is doing in my life. I can't do this without Him!! If it wasn't for Him, I would not be here. HE's so faithful!! He has seen me through each storm I have faced! He's my strength,my peace,my joy,my rock,my healer,my hope. I have such a peace from Him- what benefits He blesses me with a His child. So thankful for His precious Word that I can not just read, but memorize and put in my heart. I am so thankful for all of you who have held my family and I up in prayer. Thank you so much for all the love and support you give to me through prayers, meals, cards, phone calls, emails, and blessing us with your giving!!! I'll try to do my best to update the blog as this move along. :) With love and thanks- Jamie