Many blessings out of a disappointment--the rest of the story

Tuesday 2/17/15

Hello again!  Here's the rest of the story from January 24...

Our wait continued & it seemed like a really long time but the targeted 10am finally came.  However, nothing changed.  Bloodwork, chest XR & EKG were done & an IV was inserted but there was nothing indicating that I would soon go the Operating Room as planned.  The hospital staff kept checking with us to see if we needed anything--"yeah, either some food or a new kidney & liver, please!" :)   The last time that I had anything to eat or drink was about 6pm the night before.  

The hours slowly ticked by and even though we didn't openly discuss it, Todd & I were thinking the same thing:  something just didn't feel right.  The delay seemed to indicate to us that the surgery may not happen.  I remember reading in the book that I referenced earlier...sometimes we can't see God at work, but He isn't passive.  He's preparing...   I tried to remind myself of that.  Even though I had been on the waiting list since the fall of 2013, these hours in the hospital seemed to be a more difficult waiting process. 

Dr. Dagher came back & we talked some more.  He said he was still consulting with the other surgeon who was with the organs to be donated.  We discussed my medical situation in more depth & he showed us my CT scan & we took a tour through my body on film.  It was very interesting & helped me to understand why I feel like I do.  Meg sure has taken over & caused other parts to re-locate or be squished.  He said it's the opposite of being pregnant.  When a baby grows inside a woman's body, the baby starts low & then grows & pushes her other organs upward.  My liver started high (under my ribs) and has grown very large (into my pelvis).  This causes my organs & other parts to move downward.  My stomach is compressed & my intestines are relocated & not arranged like they used to be.  Therefore, it explains why I have to graze throughout the day & need to eat small quantities.  It also explains why many sitting, bending, twisting, & sleeping positions are uncomfortable for me.  I had been telling doctors for about 10 years how I had been feeling, but now it was portrayed on this CT scan.

He left us to further consult with the other surgeons & then around 2pm, he returned with a very sad demeanor.  He explained that the surgery was not going to take place. The donor had died suddenly & initially it was believed to be from an asthma attack.  However, when it was investigated further, the person had no history of asthma.  That was a "red flag" so more testing was done.  An unidentified virus was discovered so they didn't want to proceed with the donation.  They said that the donor was a perfect match so they felt it would have been a great transplant; however, I may have been left with a virus to deal with.  It wasn't worth the risk.  We were thankful for their wisdom & technology to make this decision & fully agreed.

Even though it wasn't the answer we preferred, it seemed like God was preparing us for this while we waited.  Again, that peace filled us.  We were disappointed, but found so many blessings through those 12 hours.  We gained more knowledge about the whole process so the next time will be a little more familiar.  

So, after reflecting over our hospital adventure, I'm thankful in many ways.  God always knows what we need.  As we left Johns Hopkins, the doctors & staff reminded me that I'm still at the top of the list & they will "see me soon".  I just hope that my "soon" and God's "soon" are the same.  Oh yeah, that Kairos time again!

With love & thankfulness for all of you traveling with us,

Belinda

  "Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus."
                                                                                               1 Thessalonians 5:18

Many blessings out of a disappointment--Part 2

Thursday 2/12/15

A friend arrived quickly to stay with Sara & Carly.  We're thankful for her father who drove her to our house because of the weather.  After some phone calls & final prep, we were on our way.  The road condition improved to heavy rain as we headed south.  So, it wasn't the most comfortable drive but we were safe.  Because of the family & friends supporting us, it felt like we had a car full of people traveling with us.  I never experienced a middle of the night drive to the hospital with a baby on the way, so I said this was my chance to see what that feels like.  The excitement/nervousness was definitely similar.

A friend had prayed with me over the phone before we left & I clung to that prayer.  I remember hearing her ask God for peace.  I texted & called people as we traveled.  God woke up a friend & she saw my text.  So, she stayed awake while we traveled & kept us smiling with texts sprinkled with scripture & humor.  It sure made the ride seem faster!  I was very calm, but as we made the last turn & I saw Johns Hopkins straight ahead, I could feel a nervous flutter.  I thought back to the prayer for peace & tried to breathe in some of that.

Upon arrival at the hospital, I called my transplant coordinator & she directed me to the correct place.  It was strange to walk through the hospital at 3:30am with empty hallways.  On other other visits, there was quite a lot of action.  The staff was waiting for me & directed us to the designated room.  (This hospital floor has only liver & kidney transplant patients.)  My nurse introduced herself, took some vital signs & then told us we could turn down the lights or watch tv...the scheduled time to take me to the Operating Room was 10am.  What?  6 hours later?  We had been functioning with such a sense of urgency, but all of a sudden it felt like time stood still.  

I asked her when it would be appropriate to ask my list of questions & she said "Go For It!"  So, I started my list:  which surgeon would be doing the surgery? how long would the surgery take? where were the organs at that time? where did they come from?  how long could the organs be held? what would happen between now & 10am?  etc. etc. etc.  

She said that she didn't have any info on the donor or their organs.  Between now & surgery time, they would be doing routine tests:  EKG, chest XR, bloodwork.  There are 3 surgeons on the transplant team:  1 travels to procure the organs & travel with them.  He will communicate with the surgeon that is taking care of me.  So, this time allows them to get updated info on me & continue evaluating the organs to make sure they are match for me.  I told her that I had been praying for a specific surgeon--Dr. Cameron.  She said that he wasn't scheduled to be my surgeon; however, she felt sure that I would  really like Dr. Dagher.  

Now, that I knew a little more, I started to relax.  I was encouraged to sleep but that wasn't easy.  In between technicians & other physicians (kidney doctor, anesthesiologist, etc.) coming into the room, I may have slept 15 minutes.  Even though I was calm, I was too anxious to sleep. I figured that I would soon be having at least a 10-hour nap :) .  An assistant surgeon came to talk with us, but he had a strong foreign accent & was very difficult to understand.  I could feel my inner peace slipping away.  I was thankful that I was familiar with medical terminology because otherwise I think I would have understood about 25% of what he said.  He started describing variations to the whole process that were different than what we thought.  When we expressed our concern, he said that we would be meeting with Dr. Dagher & could talk with him about it.  

Finally, Dr. Dagher came into our room.  The nurse was correct--I liked him immediately.  He had a calm, warm personality & explained everything very clearly.  I, of course, had a few more questions for him & he explained the entire process to us.  This would likely be a 10-hour procedure.  There are various theories about removing old kidneys or leaving them in.  Some of the "optional" parts of this process would depend on how my body was functioning.  They would start on the right side & remove my liver & kidney.  If I was doing well & tolerating the lengthy surgery, they would remove both of my kidneys & liver & give me new ones.  If not, they may decide to leave in my left kidney.  He asked how we felt about all of his proposals.  We agreed with everything & trusted his wisdom.  All of a sudden, I could feel myself relaxing & God's peace washing over me again.

As we waited, we had contacts from many people & we drew strength from that.  We had several offers to clear our driveway, which was a blessing.  We were later told about a group of men from our church who shoveled our driveway & our neighbor's driveway but then huddled & prayed.  Wow--that really made us smile!!  Another great example of the group of people that God has given to surround us.

So, our wait continued...I'll finish the story later.

Thanks for listening!  It helps me to be thankful all over again!

Belinda (& Meg still hanging around)

Many blessings out of a disappointment--Part 1

Wednesday 2/4/15

Thanks for following along with our test-run adventure at Hopkins!  We never felt alone & could really sense the presence of our friends & family to support us & the Holy Spirit to calm & guide us.

Many people have expressed their sadness over the cancellation of my possible transplant on the 24th.  After some time to rest & process it all, I feel very fortunate to have experienced so many blessings through those 12 hours at the hospital.  Let me recap & explain...

About 6pm on Friday evening (Jan 23), I got a call from my transplant coordinator @ Johns Hopkins saying that there was a possible match for me.  She asked 2 questions:  "how are you feeling?" (any colds/infections, etc.)  I had just been thinking about how well I had felt for the few days prior to that.  Her 2nd question was "how long would it take for you to get here, considering the current weather & forecast?"  Thankfully, we live near I83 so we didn't feel the predicted weather would be a major deterrent for us.  The roads were dry at the time that she called, but snow was on its way.  

So, I said "what's next?"  She said "just wait until the surgeon prompts me to call you."  I, of course, tried to get more information:  "approximately how soon might that be...1 hour...1 day?"  She simply said that she didn't know.  Back to the waiting game...

We prayed as a family & then Sara & Carly went back to whatever they were doing before the call.  It wasn't that they didn't care...it was just that nothing was happening at the moment because we didn't know when we would be leaving.  Meanwhile, Todd & I started processing through the list that was compiled a long time ago in preparation for this day.  I prioritized what needed to be done & then my nervous evergy allowed me to do laundry, pay bills, cleaining & other things that weren't essential but filled my time & helped me in my "nesting mode."  As the girls felt our busyness, they joined in--Sara really helped by prompting me with questions about things we may need with us or things that they needed to know about staying at home.  Some of her questions we hadn't even thought about.  They were asking some questions that we didn't have answers to, so we all just needed to trust God with this one.

After we felt that things were prepared, Todd & the girls went to sleep.  Me--not so much.  I was thankful that Todd could sleep because it was snowing outside & he would be driving us to the hospital. I was definitely tired--just coming off of a non-restful night.  However, I just wasn't ready to sleep.  I tried to quietly work around the house & finally I decided to read a book that a friend had just given me-- "Waiting on God".  Seemed appropriate, don't you think?

That book by Charles Stanley has been helpful, even though I haven't read very far into it yet.  I've been having some problems with comprehension (we were told that could be a side effect of the liver problems) so I usually only read a few pages & then let them sink in.  The part I read that night was explaining how God is at work preparing the path for us.  We can't always see HIm at work.  I didn't know how that would surface & help me the following day.

I finally fell asleep a little after midnight & then we got another call from the transplant coordinator around 1:30am on Saturday morning.  She said "how soon can you get here?"  I told her that we needed to wait for someone to get here to stay with our girls.  She asked us to arrive between 3-4am.  

I'm going to stop here because I imagine it's getting long for you.  I'll tell the rest of the story soon...

Thanks for the love & prayers--God's still preparing!

Belinda & Meg