Sunday, June 5, 2016

Celebrating a Year

It's time to Celebrate!  Hard to believe it's been a year already! Doesn't seem possible that it's already here! We went to Cleveland on Tuesday of last week for appointments.  I had an appointment Wednesday at the Headache Clinic for my migraines.  I'm still having them and the Doctors feel that it is from the prograff which is my antirejection medication.  I never have had a migraine in my life before transplant and now that I have, I feel for those who fight them on a regular basis.  Mine hit about every 2 weeks and usually my level is high. The Doctor did change up my medication before seeing him so we are gonna just keep things the same for the time being. I'm thankful that with the new medication it's kept me from having to go to the ER with them.  On Thursday we got to the Clinic and did our routine labs.  Afterwards I usually have my scopes and biopsies in another building, but this time in as scheduled to be in the Crile Building where I have labs so we went up there and waited for awhile.   A good long while, but when they took me back they were ready for me so that was nice not having to wait even more.  By that time it was lunchtime and I was hungry so we headed to grab a quick bite at AuBon Pain.  While in there, I got a phone call to come to Clinic.  They were ready for me.  I had a cake (of course chocolate) for the Doctors and Staff.  The check up went well.  I was still tired from the scopes and was trying to think clearly.  They are very pleased at how good things look and are going.  We got promoted from every 2 months to every 3 months.  Yea!!!!  There are a few things that I need to do for my 1 year transplant which I'm able to schedule at home.  They want to check my hips to be on the safe side with my being on prednisone and having bone pain also then follow up with a bone strengthener.  After all of that, we got a few quick pics, cut the cake, and visited for a bit with those who could.  They had a card and gifts for me and then down the road we started.  But not without stopping in Little Italy to pick up a pizza from Mama Santas to eat on the way home. Yummy!! 

A year ago yesterday is the day I received the call!!  What memories and emotions flood through me.  Please keep my donor's family in your thoughts and prayers this week. I have heard from them by a card thru LifeBanc but we still haven't disclosed our information to each other.  I'm so thankful for them reaching out to me.  I can't begin to imagine the heartache their family has gone through this past year.  So while I celebrate my First Transplant Anniversary, there's a family broken hearted. Thank you for keeping them in prayer with me also.  

We have reminisced and gone thru pics on phones of today, June 6 & 7. The day was long, testing, prepping, phone calls, praying, tears, smiles, anxious, exciting, nausea, vomiting, anticipation,waiting, more praying, nervous, trying to remain calm for three precious kids crying....and yet through it all God surrounded me with His peace.  I am so thankful to God for what has taken place within a year.  I feel like I have my life back. I still have issues now and then pop up, but would rather have them than throwing up over 8 times a day and being on TPN still.  So grateful to God, my donor's family, my Transplant Team, my Family, my church family, friends, and a caring community.  I have not walked this alone but I have had many people praying all over the world for me. You have shown your love and support to me in so many ways through prayers, phone calls, emails, cards, texts, meals, gift cards, and my funding page.  My heart is overwhelmed by the support you've shown when I look at cards and emails just from last year!   God is so faithful and and good to me.   I feel so blessed, beyond blessed!!

Last year after the transplant, in ICU.

Celebrating at our local Steak House....Prime Quarter. YUMMMMM!

To God be the Glory!  What a Miracle in a year!

Saturday, April 2, 2016

April 2016...A year later

Time has gone by quickly! A year ago we were in Cleveland trying to unpack and get settled in the hotel and be there for an indefinite time. A lot of questions were in my mind with no answers.  How long will we be here? How does the transplant process work? How are we going to pay for a hotel and a house back home? And on and on...   But God is faithful and supplies our every need.  There's a peace that He gives to His children. I didn't have all the answers to my questions, but knew God was with me each day. So glad to be back home in Princeton, but am thankful for the many blessings He gave to us along the journey.  We have drawn closer to God through this, learned to have more patience, increased faith and hope and to trust Him more.  We have become a stronger family.  

Since my last post I've been to Cleveland for 2 appointments and have had labs, scopes, and biopsies.  Things are going well.  They have found some polyps in the esophagus, stomach, and intestine on the 2 times I've been scoped but thankfully they are benign.  They biopsy them first and  if they need to be removed then they will.   This last appointment I had, they decided that since things are going so well, we would move my appointment to every 2 months.  I will do my scope and biopsy locally.  My local GI Doctor will send the biopsy to my transplant doctors.  Then I have another month before having to go back for my usual there.  We've  come a long way with getting the appointments moved. After being discharged from having the transplant I've gone from appointments twice a week, once a week, every other week, once a month, and now...every 2 months. How exciting! When we left in September, we were going there every 2 weeks.  So thankful we still aren't having to make the trips that frequently.

I've had the chance to meet some new transplant patients at my appointments and catch up with some I've known. My heart aches for some very sweet people that are still struggling with issues after their transplant.   Keeping them all in prayer along with their families. We all have our own story and each is so different, but we are all fighters. 

Catching up on the kids...Kailey has finished early on 6th grade and starting on 7th grade.  I'm going to have her take a break from it in the summer time though.  Matthew is trying to get caught up in English and Math so he's not in doing any school in June or July. He has completely finished Science and History for the year. Kelsey is working ahead and trying to finish hers a little early.  She keeps telling the other 2 that her studies are a lot harder than theirs.  We have taken some recesses by walking. They have enjoyed it and so have I. One day one of them had a hard time staying up with me and we got to laughing. One evening it was so beautiful that we walked as a family up to Main Street up to the CourtHouse to Pizza Cellar and back home. That was a first in over 6 years.  We've been taking advantage of the nice weather and going to the park also. 

Kelsey made her first Apple pie, crust and all.  It started off as something for both girls, but Kailey lost interest as we began peeling apples.  She went to trying to make apple juice with the cores and peeling.  She quickly realized that wasn't doing anything but make her a sticky mess and quit.  Kelsey did a good job on the pie!! I'll have to keep working with Kailey on it๐Ÿ˜‰.  Although she does enjoy baking and cooking.  They both are big helpers in the kitchen. It's just hard for me to let my kitchen go to them, but I need to let them start. 

I celebrated another first....Easter dinner.  It was delicious! Spiral ham, mashed taters, green beans, deviled eggs, rolls, ambrosia salad, and coconut cream and chocolate pies.  Yummy!  More than that,I am so grateful for the blood Jesus shed at Calvary. That His blood covers all my sins and washes me white as snow.  He has risen and alive forever more!! So thankful for His love for me.  There's no greater love than His! 

Kelsey celebrated her 15th birthday!! I'm proud of the young lady she's become. She's a hard worker, has a big heart, and loves God with all her heart.  My prayer is God uses her at a young age as His vessel. My, does time fly! Seems like yesterday we were walking into the hospital to Labor and Delivery and were so excited to hear we weren't leaving till we had a baby in our arms.  We didn't know if she was a boy or girl till I had her.  What a blessing she is!  

Thank you for taking time to read my blog.   Also for all your prayers, love, and support you show to us!

Valentine Banquet 

Kelsey's first apple pie.  She cut out an A & apple for the middle.
A walk at the park.
Easter pictures

Tuesday, February 2, 2016

Back home

I'm  For those of you who missed it, I have a few posts that I did while in the hospital.   I left off on Saturday, the day after my surgery, so I'll pick up on Sunday.  It ended up a little rough with a bloated belly and getting sick to my stomach.  The Doctors slowed down my full liquids to nothing by mouth. They wanted to be sure everything was okay. I was on no pain meds besides regular Tylenol. By Monday morning doctors allowed me to have a soft GI diet.  I am having to be careful and have some restrictions for right now. Within 4-6 weeks things I'll be able to lift most if not all of my restriction according to my dietician.  By Tuesday I had to get a unit of blood and 4 bags of albumin (a blood product). On Wednesday they were thinking of discharging me but the doctor changed his mind after he was finishing rounding on me and said lets wait one more day and push more fluids in you and send you off to the hotel on Thursday. So that we did.

It felt wonderful to be out of the hospital and at the hotel Thursday afternoon.  The trick was trying to get comfy in a hotel bed that doesn't have controls for the head or feet. It didn't have side rails either to help me get up or lay down. Thank goodness for Nurse Shane.  The World's Best Nurse.  It felt wonderful not having my roommate calling my name through the night to ask when she last had her pain meds or  nausea meds.  She would wake me up and ask if I had gone to surgery yet.  One night I barely got sleep due to her pulling out her picc line, another 45 minutes to an hour she had her NG tube pulled out so once again more bright lights and lots of commotion and then she decided to get up on her own to the side of the bed and she had an Interjugular IV which scared me she was gonna pull it out and then bleed to death.  If I heard her moving I was asking her what she was up to so I knew what she was doing.   I could have written a book! On my last 2 days they offered to move me but I was getting use to her routine and like they told me, you don't know who you'll be put with. You  
really don't get too much rest in the hospital anyways between nurses and aides checking in on you at night.  Along with the sounds of IV machines beeping in the room and hallways a lot of the night.  There was peace and quiet in the hotel with the instrumental music of Jim Brickman playing in the background.  

We had a wonderful weekend together exploring "Little Italy" sharing a pizza together and another restaurant sharing an Italian entree. The pizza was yummy and the entree was okay but Verucchi's had them beat. The pastry shops looked yummy. Lots of goodies that looked scrumptious.

Monday's appointment wentwell.  Things are going good so the doctor let us come home.  We have to return again for an appointment the week of the 22 of February.

Thank you for all you love, prayers, and support along the way and helping make it easier.  To God be the glory for the miracle He has given me! 

Have a great week! 

A picture of my board showing the date of my surgery

Saturday, January 23, 2016

Closing of a chapter...

It is official! As the stoma is now closed, so is the chapter of the past 6 years of artificial "help" in plugs, wires, tubing, pumps, bags, devices, ...!! The surgery was a great success and I am FREE!! God has led me down a long road and though the journey is far from over, it is at a time of jubilee and rejoicing!

Yesterday was a long day for waiting for the call to surgery, but the call finally came around 2:30pm and off I went. I met the surgical team in the OR and was able to share my story with the few that hadn't heard already and was even sharing some recipes! Before going down for surgery, I had written a short poem and had taped it to my colostomy bag for the OR team to read. It read as follows,....

"It's time to put it down beneath. 
My stoma is being closed up, you see.

Since my transplant, it has been good to me,
But now the time has come to be. 

Please don't weep, but rejoice,
For this for me, is a better choice."

Laughter is like medicine, I believe! And I sure wanted a surgical team feeling their best while I was under.

After surgery, I was in recovery until pain was under control with my array of allergies to so many medications. Once managed, I was back in my room upstairs for a good nights rest. Zzzzzzzz

Today has been another great day! A few walks down the hall and easing back into my normal diet has been the goal. Liquid food ("full liquid") diet has been good to me for today. Tomorrow maybe something to chew!

Thursday, January 21, 2016

Another quick update

My levels have come down a little more, thank the Lord! The ultrasound of the kidneys went well. So they now have me on clear liquids and have surgery tomorrow.  I'm not going to get my hopes too high, just in case I get bumped to do an emergency.  It's hard being in the hospital when you're feeling well! There's no way they'd let me go home and come back because I needed the IV fluids.   Thank you for all the prayers and I'll keep this updated.   

Wednesday, January 20, 2016

No surgery, yet...

I haven't had my surgery yet!  My labs Monday showed my creatinine was too high, so they admitted me to get my flushed with fluids, fluids, and more fluids.  I was wheeled down to surgery Tuesday morning and half way down there the transport got a page.   He took the call and said something was high and was to bring me back to my room. They weren't able to do it Tuesday due to the creatinine still too high for surgery.  As of this am it's still coming down,  it's still coming down, but very slowly.  If they do the surgery with it being high, it can cause me to have kidney issues.  I don't need to have any other problems, so in the mean time we camp out here and try to wait it out here in the hospital. No promises, but maybe Friday or Saturday will be surgery.  

Friday, January 15, 2016

In Cleveland we are!

Happy New Year to all of you!! So Thankful for 2015 and looking forward to what God has planned for this year! We ended the year with a church service and fellowship and food  afterwards.  I can't think of another way I'd want it to be! Giving God the glory for what He's done and what He's going to do! BLESSED!!

We are here in Ohio at our friendly hotel (home away from home) in Westlake.  The drive wasn't bad at all.  The sun was shining and roads were totally clear, besides salt on the road. We got in Thursday evening.  I had testing and a Dr's appointment today.  Monday is jam packed with testings and appointments and pre op stuff.  On Tuesday, I'll be having the stoma reversed.  The kids are with us till a day or so after surgery then heading back home.  

Friday evening, after our Dr's appointment, we went for pizza to celebrate someone's BIRTHDAY!  Happy Birthday to my wonderful, caring, patient, and loving husband!!! Afterwards, we went to the store and he picked out some icecream to eat at the hotel. We played Phase 10, but only got to phase 5 and will finish the rest up tomorrow.   

As I was packing for the trip I started cleaning out my last drawer of medical supplies.   It felt so good.  It looks nice not having my bedroom look like a hospital supply room.  In the past several years thats what its become with my G-tube, J-tube,  Ostomy supplies, and everything for my TPN supplies.   I told Shane on the way here I get in a panic thinking I forgot to get my TPN out of the fridge to hook up or bring with me.  It feels wonderful not having to hook up anymore. 

What an intestinal transplant means to me? Being able to go to Church as a Family.  Walking hand in hand with my husband, and him not having to push me in the wheelchair. Having energy to do picnics and go site seeing as a family, and not sitting on a bench alone waiting for them to return.  Not having surprising hospital visits, and missing the kids events.  Going into shops that are small, and not worrying about a wheelchair fitting thru. Being able to be out and about more as a family, and not confined to bed.  Being able to enjoy each day! 

Some are asking about my funding page.  My funding page is on the right side, National Foundations for Transplants.  What a blessing it has been.  Thank you for so much for all who have given.  Whether its been great or small it all helps!  Also thank you for your support with the gift cards, emails, texts, calls, cards, love, and most of all prayers.  Thank you! 

I'll update next week or have Shane.  Have a great weekend!