A full year of blessings

Praise God--I have reached my 1 year anniversary from my transplants!!!!

So many people have asked me if it feels like a year has passed.  I never have a simple answer for that.  Time is such an abstract concept for me.  Sometimes it feels like my surgery was longer than a year ago & sometimes it seems like just a few months have passed.  I'm feeling great physically so I'm really thankful!

When I started to write this post, I couldn't believe how much time had passed from my last one. When I wrote in January, I was feeling really foggy mentally since about October.  On Feb 14, my doctors ordered an MRI to rule out any brain issues.  The test came back normal, which didn't surprise them.  They felt it was just related to my body adjusting to the meds & still recovering from the major surgery. I felt relieved with the negative MRI, but the fogginess still was there.  

I was really frustrated because even normal daily activities were overwhelming.  However, I found comfort in knowing that there were many people praying for me during this tough time.  I didn't have anything new to say so that's why I didn't post here.  

Without any explanation, I woke up one morning in late March & felt clearer.  I actually felt like getting up & being productive.  Most other mornings, I had to drag myself out of bed.  For those of you who know me well, that is a drastic change for me. I usually wake around 5 or 5:30 & am ready to dive into the day.  My doctors couldn't explain it but said they had some other patients with the same symptoms & their fog also lifted without any treatment.  Nothing had changed for me...same meds, etc.  We attributed it to the power of prayer & just accepted it as something that I had to go through.    

So, I've been doing well since then.  My fogginess has returned a little in the past month but it isn't as severe as before.  I had another med change so perhaps it's due to that.  

As I titled this, this has been a year full of blessings...

...My doctors have been very pleased with my recovery so we're blessed that God provided a much quicker recovery than most other double organ transplant patients.  

...There have been no signs of rejection in this first critical year.

 ...My donor's family returned a letter to me.  I had written to them through a 3rd party.  The family wrote back to me and were thankful to hear from me.  We're still anonymous to each other, but it's a blessing to be able to express our thankfulness to them.  We hope it helps to ease the pain & adjustment to losing their father, son, husband...

...I have been discharged from my transplant physician.  I will now be followed by liver and kidney specialists. 

...Todd's work schedule has allowed him to attend all of my many medical appointments.  A second set of ears has been very helpful!  The medical world has always been fascinating to me & I worked in medical offices for many years.  Todd was not familiar with medical terminology but soon became an expert on my meds and a #1 nurse because of his desire to care for me.

...My number of pills have been decreased!  I'll own a pill box for the rest of my life.  However, some of the compartments are empty now. I was taking pills 4 times a day...now it's only twice!  I now take 3 different anti-rejection meds and 1 blood pressure pill.  (A huge difference from when I came home from the hospital.) 

..I started out with bloodwork 3 times per week.  It has gradually decreased & is now only every 6 weeks. 

...Through this year, we've met many people who have been covering us in prayer in addition to the numerous others who we knew were praying.  What a blessing it is to be reminded that we not alone on this adventure.  

Todd bought a kayak before my surgery & wanted me to get one also.  I physically wasn't able to join him because I couldn't bend my body to get into it.  Also, if I would have flipped it, I don't think I would have been able to properly maneuver to set it upright.  Now, my doctors have cleared me to be in lake waters and Todd thought I was ready so he bought a kayak for me.  It is a blessing to be able to enjoy something active with my family and my new body.

 

It has been a huge blessing to be a living, walking, kayaking example of God's miracles.  I still get asked about prayer requests.  In case you're wondering, they would include...

...my donor's family & whatever their needs may be

...helping my foggy brain & the way I can easily be overwhelmed

....my low energy level.  My doctor just started me on an iron supplement.  Hopefully that will help.

...I have such a story to tell (as we all do).  Pray that God would be glorified as my story is told so that others learn more about Him.

Once again, thanks for following God's work through a medical miracle and answer to prayers!

With love and thankfulness,
Belinda

My toughest night in the hospital--but God provided

I'll never forget my toughest night in the hospital & how God provided just what I needed...

I was transferred from the ICU to the next level of care--still close monitoring but not 2 nurses for each patient.  I sensed that my new nurse was very busy & had a full work load.  She cared for me well medically but didn't have a warm personality.  I was less than 24 hours after surgery ended so I couldn't do anything for myself.  Todd was there but he was functioning with no sleep since surgery started.  Plus, there were many things that only the nurses could do.  

She settled me in my new environment & then left to care for other patients.  Todd was starting to relax & attempt some overdue sleep.  It looked like a restful night was ahead of us.  That's when the Prednisone kicked in.  The normal protocol was to give me extremely high doses of Prednisone to fight my body's natural instinct to fight off foreign substances.  I had been told that before surgery, but nothing could have prepared me for the side effects.

I was exhausted but each time that I started to drift off to sleep I would hallucinate.  So, I was partially awake and able to have a 2-way conversation with Todd while I was seeing them.  At first he tried to convince me that they weren't real, but then he realized that he just needed to play along with it & try to keep me calm.  

Some of the hallucinations weren't terrible--I saw designs on the walls, each time a different design. I couldn't figure out how it kept changing.  Some were comical--I delivered Domino's Pizza.  I was dressed in a uniform & had a delivery sign on the top of our van.  I remember asking people what toppings they wanted.

Other times, they were frightening.  I walked outside the hospital in my gown & then tried to come back inside but the doors were locked.  I was banging on the doors to try to get in.  Nobody would help me.  Another scary one was when my favorite yellow lab, Ben, was lying on the floor beside me. He's a large dog & he takes up a lot of room on the floor.  I kept saying that someone was going to step on him.  I wanted someone to move him out of the way.  He was laying beside me right in the middle of my hospital room.  

Each time a hallucination would start, I would hyperventilate & then my heart & oxygen rates would go crazy.  That would set off alarms & my nurse would come to my room.  The first time she calmly told me that I needed to take deep breaths.  Then I would relax & settle down.  As soon as I drifted off to sleep, the cycle would start again:  hallucinations, hyperventilate, alarms, nurse.  Each time, she was a little less patient with me.  She told me that if I didn't take deep breaths, I was risking pneumonia & other problems.  I'm sure that I needed to hear that; however, it gave me more fear in the way that it was delivered.

I was uncomfortable because I was sweating & sticking to the bed.  I was really frightened because I couldn't move myself at all--not even lift my head.  Todd & the nurse needed to move me.  What a helpless feeling!

This process continued through the long night.  Todd tried to sleep between episodes while leaning over my bed to soothe me.  Finally, the 7am shift change occurred.  I wasn't aware of the time & barely opened my eyes all night.  My room was dark but I heard a new voice introducing herself.  She said her name was Sophia & her calm voice was exactly what I needed.  God sent her that morning to show me that He was taking care of me.  She helped me breathe properly & stayed with me in my anxious times.  

Later that morning, a resident doctor gave me goals of trying to advance my eating, getting up & walking, and a few more.  I was overwhelmed to tears because I couldn't process all of that while battling the hallucinations & other Prednisone effects.  Once again, Sophia came to my rescue.  She had me focus on 1 goal at a time.  She said that it didn't need to be all done at once.  I was still less than 48 hours post op.  Todd was a great support, but he wasn't experienced with this to be able to know whether to push me or not.

Then, my other great encourager came in--Dr. Cameron, my surgeon.  I explained my frustrations & he explained that I was doing extremely well & way ahead of the recovery schedule.  I really needed to hear that because I couldn't think clearly & wasn't sure if I was doing well.  

Throughout the next few days Dr. Cameron & Sophia kept me realistic & focused on taking 1 day at a time.  I had difficulty eating because of nausea but they convinced me that my bloodwork showed that I was doing great & my IV was giving me the proper nutrition.  They said just do whatever your body is telling you.  Those 2 angels really made a difference in my recovery process. 

God's timing was perfect!  It was shown in so many ways throughout my hospital stay & recovery.  I'm so grateful for all He has done & provided through so many people.  Thanks for following on my journey.  It's a huge blessing to know that I'm not alone.  

Now, I'm anxiously awaiting how He will utilize this foggy brain to show his sovereignty again.  I'll keep you posted.  This is all in His plan.  I just need to try to rest in that.

Thanks for following & praying!

Belinda

            

God is in charge!

I woke this morning & felt compelled to write.  (As you can see from the infrequency of my posts, that doesn't happen often.)  As I write this, we are in the middle of a beautiful snow storm.  I am admiring the beauty of this white covering and I'm struck by the fact that God is in charge.  I watched a few weather reports yesterday.  There were lots of meteorologists predicting how this snow storm would behave. Lots of time & energy was spent trying to prepare us for what was coming.

This morning I am acknowledging that only God knew what was going to happen in detail.  Despite the knowledge that God has allowed weather forecasters to obtain, He is still the only forecaster that always gets it correct!  I have been leaning on Jeremiah 29:11 to remind me that He knows the plans that He has for me.  Let me catch you up on my recent struggles before proceeding with my transplant journey...

I have had regular checks at Hopkins & my liver & kidney doctors are really pleased with the functions of my new organs.  God coordinated the perfect match & my body is pleased with the new additions so I'm very thankful that physically I'm feeling great!  For the past few months, however, I've been experiencing increasing cognitive problems.  My brain is having difficulty with clear thinking & it seems like I float from day to day in a fog.  Even small tasks that require a lot of thinking, like meal planning, are a real chore for me.  It seems like it's getting worse, but perhaps I'm just getting more frustrated by it.  I'm a detail-oriented person & this drives me crazy.  

At my December visit, my kidney doctor witnessed my teary frustration & said "you didn't go through all of this to feel this way".  That pretty much summed up my feelings.  At my September visit with her, I didn't have these complaints.  Actually, I felt clearer the 1st few months after surgery than I do now.  She outlined a path to investigate this further.  Yes, I'm taking a lot of meds; however, she wasn't sure that we should keep attributing my mental complaints to that.  So, I'll hopefully soon be checked by a neurolgist/psychologist to see if there's something causing my brain to not think clearly.  Some people have been asking how to continue to pray--there it is.

Another way that I witnessed God in charge is my most recent "bump in the road"--shingles.  I'm just about recovered from what turned out to be a short-lived case.  After being diagnosed, I heard stories of many shingles cases that lingered for months or even years.  I witnessed how painful the blistered rash can be.  Thankfully, I was started on medication quickly & the duration was only weeks.  I was thankful that I didn't need the pain med for too long because it made me very drowsy.  Drowsy + foggy is not a good combination.  So, God blessed me by healing me quickly.

As frustrated as I am right now & have difficulty reading with comprehension, I'm thankful for God's word like Jeremiah 29:11 "For I know the plans I have for you," says the Lord.  "They are plans for good and not for disaster, to give you a future and a hope."  Even though I'd like to be doing more in-depth reading, His word is all I need to cling to.

With a foggy brain, but clear thankfulness,

Belinda