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 

Not in God's Plan....today

1/24/15 2:10pm-- We just had a consultation with the Dr., unfortunately, the donor had some undisclosed medical concerns. The Transplant Team did not feel the organs were Class "A" organs and has just decided to wait for better organs for Belinda. So for now...the surgery is off and we will be heading home.

I had just prayed, about an hour earlier, that God's will be done and if this wasn't His timing to take it away. We are in awe at the works of our Amazing God.

Trusting Him, and thanking all of you for your prayers.  Peace to all.

still waiting

1/24/15 1:30 pm Just a quick update.  Thanks for all your prayers.  We are still waiting.  Belinda is doing well and is ready to go.  The medical Team still hasn't confirmed a match to the donor but we are proceeding as it is.  The surgeon was in about an hour ago and discussed the procedure.  This will be an 8-10 hour surgery.  Once we get the green light this will go well into the night. Please continue to pray for the medical Team, the donor family, and for Belinda.  We rest in God's hand and are at peace.

At Hopkins

1/24/15 8am- We made it to Johns Hopkins at 3:30 am, leaving York we had about 4" of fresh snow but the roads were in good shape. Once we passed Hunt Valley the snow was pretty much done.

Belinda has been admitted, lab work and xrays are now complete. We are told she will be headed to OR anywhere between 10-noon.  The surgery is very involved and may last 8-12 hours.

They are still testing and mapping the donor organs to make sure everything is a match; however, we are proceeding as it is. If everything moves on this schedule surgery should be wrapping up by 8 pm.

We are at peace and resting in the palm of God's Hand. Thanks for your prayers

It is time!!

This is the announcement we have all been in prayer for--We just got our call and are headed to Hopkins for Belinda's transplant! Please pray God's peace over the donor's family--Please pray for the Medical Team, for wisdom and endurance as this will be a very long procedure for them--Pray for Belinda, that her body will be strong and receptive to the new organs--Pray for Sara, Carly, & I that we can have peace and trust God in this journey.  Continually praise God as we all journey together.  He is good and has provided absolutely everything we have needed! We truly rest in His hands.  Proverbs 3:5-6 has been our foundation.

Merry Christmas from #2 !!!!

Merry Christmas!

I'm sure you can all guess what my Christmas gift request is.  It's the same as 2013, only it seems more likely this year.

I received a call this week from Johns Hopkins to see how I was feeling & to let me know that I'm #2 on the list in my blood type!!!  I could feel some anxious fluttering when I saw my transplant coordinator's name appear on my phone.  She always starts her conversation with "I'm just checking in--this isn't a critical call".  (I'm sure she knows the reaction to her calls from people who are on the transplant list.) 

Most of my job is bookkeeping & I was in the middle of payroll processing when I received the call.  It's good that our Director double checks everything.  My mind was a little preoccupied & I felt like I had ADD.  It can be an overwhelming feeling to think that the call could come at any time.  As I leave work each day, I look over my desk & wonder if there's anything that I should complete or leave a note with an explanation.  I know that someone else can do my job adequately--it's just that I don't want to leave loose ends & confuse my co-workers while I'm off.  Prioritizing is essential--I function each day with the mindset that I may not be available the following day.

Many of you have been asking how I'm feeling physically.  I'm doing OK but am definitely ready for the next step--a new body to start off 2015 would be wonderful!!  Some days are better than others for me.  It's almost always a good day/not so good day rotation.  So, this helps me to be thankful for the days when I'm feeling better & helps me deal with the not-so-good days.  Comfortable sleeping is quite often a challenge.  There simply aren't too many parts of my abdomen that aren't tender to lay against. To give you an example of how tender it is:  laying against wrinkles in my clothes or sheets is uncomfortable.  Sometimes, I feel like a hot dog on a rotisserie--I just keep turning until I'm done :)

 As we heard a testimony from a friend with ALS, I was reminded that God has me on this path for a reason.  I'm anxiously awaiting to see how He will be glorified through all of this.  I'm thankful that I get to see a close-up view of it all. 

We've had wonderful Christmas celebrations with family & friends & I'm very thankful for that.  One of my highlights was the 1st annual Little Family Carrom Tournament and that everyone was well enough to participate in it.  There was a lot of competitive love shared!  I pray that you felt and shared God's love during this celebration of the birth of His son.

Merry Christmas!
Belinda & Meg (hopefully, soon this will just be from me)

#7

Why #7?  Let me explain why that's my new favorite number (I never believed in lucky numbers but I favor this number right now)...

Because of the headaches that I mentioned in my last post, I had a neurology consult and the doctor prescribed a few options. Before proceeding, I wanted to get them approved by my transplant coordinator. While I talked with her, she said "since it's been a while since we've talked, let's check where you are on the transplant list."  

She told me that my MELD score is 29 (I thought it was 27 so I've been given extra points).  Also, she counted down the list to find my name & stopped at 7 & said "there you are!"

Wow--that number brings this whole process to a closer reality because my coordinator shared that there have been transplants done for patients below me on the list.  Mainly, that is because those donors had hepatitis & the recipients also have hepatitis so they were willing to accept those offers. Because there is no alternate process to compensate for liver failure (like dialysis does for kidney failure), some people on the waiting list need to accept whatever offers they get because they are so ill.  For me, the doctors are waiting for a "clean donor" without complications.  

My coordinator told me to "get ready--it could be soon".  Only God knows what "soon" means, but I asked her if there's anything that I should be doing to prepare.  She advised me to stay as healthy as I can.  I translated that to:  flu & pneumonia shots, plenty of rest, avoid crowds, wiping off grocery cart handles, etc.  I've never been frieked out by germs.  I know some germophobes whose families are frequently sick--I think you can overdo the anti-bacterial thing.  However, now I've been more conscious of trying to avoid germs or higher risks of getting sick.  I wouldn't want to get a transplant offer & be ill & not able to undergo surgery.  

So, this news has kicked some more planning into gear.  We've finalized a plan about who will help with Sara & Carly while we're at the hospital.  Todd plans to stay fulltime with me for the 1st few days--to be my advocate while I can't speak for myself.  

My husband has lovingly told me that the medical staff will be thankful once I'm under anesthesia because then the questions from me will stop.  I've always been full of questions & my parents can confirm this.  (I know it drives Todd crazy at times.)  This whole process fascinates me.  I've always been intrigued by how God designed our bodies & want to know everything that will be happening to me.  I would prefer to be reading about it in a book (instead of my own body), but I want to know what's going on.  These surgeons are world-renown.  They shouldn't mind me double checking a few things before I go to sleep, right?  :)   I know it won't shock some of you, but I have a list of questions & things that I don't want them to forget (2 hernia repairs that they promised me, take pictures of Meg, etc.).  They will probably give me the quick-acting anesthesia!  

Thanks for following along--we'll keep you posted!

Belinda

Blessings abound!

Long time...no post...

I hope you are all doing well & enjoying the beauty of fall!

I'm sorry that it's been so long since my last post. Since May, I've been dealing with almost constant headches and some difficulty with mental clarity so I haven't spent much time on the computer.  However, during this time of not feeling well, God has been reminding me of His presence by blessings around me.  Here are just a few:

It seems that when I'm feeling a little low, I get a text or card or someone reminds me that they're praying for us.  I'm amazed at how many prayer lists we're on--can't have too many of those!

One day, my parents got a call from a distant cousin of mine. He heard about my situation & felt that God was calling him to be a donor for me. He was extremely disappointed when I told him that I needed a deceased donor so I couldn't take his offer. Just the thought that he cared enough to call me was a lift to my spirit!

Others have offered to donate blood.  Not sure if that will be needed but their offer warms my heart. 

We have had meals donated.  Some have been frozen for later use, but some have been used to lighten our burden on tougher days.  One less thing to think about when rest is really what I want :)

The month of August was the worst time for my headaches & mental fogginess.  Even something as simple as playing a game, following a recipe, or going to the grocery store was frustrating for me.  I felt exhausted all of the time. I called my transplant coordinator to see what I should do & she said that it would be a good idea for me to be re-evaluated by the transplant doctors since it was almost 1 year since my last full evaluation. 

So, in mid August my liver doctor re-evaluated me & ordered an MRI to rule out an aneurysm or cysts on my brain that could be causing these headaches & other symptoms.  Thankfully, the MRI did not show any of the suspected things. However, my doctor did not know any other causes & referred me to a neurologist.  The 1st available appointment was October. They told me that I should feel fortunate--usually, the wait is longer. 

Now, here's when another blessing happened:  after my August appointment & MRI, I was very discouraged because daily functions were becoming more difficult & I would have to wait 2 months to see another doctor for any possible treatment.  At the height of my difficult days, 2 separate groups of friends met for their weekly gatherings where prayer is the focus.  That Tuesday, both groups prayed specifically for my symptoms and within 2 hours of their prayers, I felt the fogginess lift from me. It wasn't anything gradual--I felt a sudden change in my mental clarity.  The headaches & fatigue have continued but the fogginess hasn't returned in that severity!  Praise God!!!

It's easy to get discouraged while waiting. Our faithful God often shows me that He is still present & He has used many of you for those reminders.  We are so blessed by the community around us!

With weariness, but hope,

Belinda

"Trust in the Lord with all your heart and do not lean on your own understanding" ~~Proverbs 3:5-6

Just a waitin'.....

Yes, that's me--just a waitin'...  Nothing new to report...

Some days, when I'm feeling ok, this whole transplant process feels like a dream & doesn't seem real.  I have to remind myself that my life could change with 1 phone call.  But, in reality, that is true for all of us...

On other days, when Meg is acting up & is painful or taking up more than her fair share of space, I am totally ready to proceed with surgery.  My energy level seems to be decreasing.  I have really limited my quantity of food after lunch.  If I eat too much food late in the day, then I'm too uncomfortable to sleep.  A dear friend gave me a book of 100 smoothies.  So, I'm learning to drink my nutrients with less bulk.  Seems to be helping--yay!!!  Carly is always willing to be my taste tester so it's fun to share them with her! 

I have a friend who is in the final weeks of her 1st pregnancy & is very anxious to deliver because of being uncomfortable.  When I look at her, and know what lies ahead, I remember how much easier my pregnancy was compared to the fatigue & journey through the 1st few months of parenthood.

So, I am encouraged by watching pregnant women.  (There's lots of them at our church, so they're easy to find.)  When my fatigue gets me discouraged, I tell myself to push forward because this is the easy part.  The process during and after surgery will have plenty of "opportunities for adjustment".  Doesn't that sound positive?  To be honest, there are parts of it that I'm not looking forward to, but just like with childbirth, there are some things that we need to go through to get a better end result.

I receive a daily email scripture.  I read each one but some of them "sink in" more than others.  This one came this week & encouraged me:  I hope it encourages you with whatever your life includes right now: 

^"Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus."    ~1 Thessalonians 5:16-18

Love to all,
~~Meg & Belinda

Woo hoo--27 points!!

Happy Spring!!

Wow--another month has gone by since my last update. I actually lost track of time and just realized that 3 months have gone by since I was given a score of 25.  My doctors can re-apply every 90 days & I just found out that I've been moved up to a score of 27!  That doesn't give us any more info about the timing for a transplant, but now they are saying that I have a "high score".  They will re-apply in June for 29 points, unless God provides a donor before that time.

I'm so amazed at how many people have shared that they are praying for our family.  It's very encouraging & gives us strength.  I've been asked what specific prayer requests I have so I thought I would share some...

~~for my donor's family. It saddens me to know that someone else will be grieving over a death while I'm receiving such a wonderful gift.  I pray that they know Jesus & can have peace in their time of sorrow.

~~for peace for my family & for them leaning on the knowledge of who is really in control.  God will provide our every need, in His perfect timing.  He has already provided a community that surrounds us & is walking beside us.

~~for continued peace & patience for me. I have had a deep peace, that only comes from God. I pray that it continues despite my growing belly & the days when my discomfort is greater & I have difficulty sleeping. 

~~for learning how to adjust my eating habits in order to minimize the discomfort after eating. 

~~for learning how to be patiently on the receiving end of serving.  We have had so many offers for help during my hospitalization (approx 2 weeks) & recovery.  What a blessing!  I believe, however, that I may have difficulty watching others do the things that I usually do.  It's not that they won't do it to my satisfaction--I just like being in motion & being independent. 

If you are a prayer partner--thanks!!

Every day is part of the journey that God has planned for us.  It's easy to focus on a future event & think of the days in between as just waiting time.  Our "tunnel vision" could put us at risk for missing blessings and opportunities along the path while we wait.

So, I encourage you to take time to stop & thank God for your blessings every day!  Look and listen for the opportunities that He has ready & waiting for you! 

With peace & love,

Belinda & Meg

John 14:27 records Jesus' words~ “I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid."

Happy Birthday to me!

Hi everyone!  

My birthday was a few days ago. I had submitted a birthday gift request. (If you have been following this blog, you can guess what that wish was.) However, I guess God didn't think it was time for that gift yet...

I haven't forgotten about this journal--it simply hasn't been anything new to write & I didn't want to blah, blah, blah...

Honestly, I think I'm adjusting to my "new norm".  That translates to feeling about 4-5 months pregnant when I behave & eat small amounts of food, or 8 months pregnant when I eat more (like I really want to). Since my medical testing is over for now (only monthly bloodwork), this transplant process isn't always in the forefront anymore. 

I'm always full of questions...I had a few more answered recently by my transplant coordinator:

~How many liver transplants are done at Johns Hopkins per week?  They said about 80 were done in 2013 so that averages to a little more than 1 per week.  That doesn't give any more info about my situation...I was just curious. 

~How much time will I have to get to Hopkins after I get the call that a donor has been picked for me? I've always imagined a very brief time & a strong feeling of urgency after we get that call. So, we made a list of items to put in a grab bag so that we can quickly depart & make a quick trip to Baltimore.  We also have people prepared to help with Sara & Carly on short notice, especially if the call comes during the night. 

Now,  I've learned that most likely it won't need to feel rushed.  They have patients that live 6 hours from Baltimore (we're blessed to be within 1 hour).  I was told that quite often they can give recipients a day's notice. That didn't make sense to me until they explained that quite often donors (that I will receive from) are on life support. Therefore, there are certain indications & procedures that allow the transplant team to notify the recipient 24 hours in advance. Even so, I don't imagine that it will be a calm 24 hours for me--I'm sure my brain & emotions will be on overload!  

I continue to be amazed at the support that we are given during this waiting period.  Prayers & offers of help continue.  What more could I ask?  It's soooo comforting to know that God has given us a community of family & friends to surround us--thanks!!!

"I can do everything through Christ, who gives me strength." Philippians 4:13

 

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance."  James 1:2-3

With love & growing patience, 
Belinda &Meg

In case you were wondering...

A favorite teenager of mine told me that this blog is quite boring. I guess it isn't too action packed in the eyes of a teenager, but my main purpose was to keep people informed & answer questions that many people have (& some are hesitant to ask).  I guess the action will come when the transplants happen!  So, here are some common questions...in case you were wondering...

Am I on kidney dialysis?~No, although my kidneys are failing, they haven't reached a point where I need dialysis.  My nephrologist has always told me that the ideal situation would be for me to never go on dialysis--he hoped for a transplant before that time. So, since my liver situation warrants a transplant, my surgeon wants to be proactive by removing my diseased kidneys & give me 1 new one at the same time of the liver transplant. 

Why can't I have a living donor?~Living liver donors (that's a tongue twister) are becoming more common; however, a donor cannot donate both a kidney & liver.  If I had 2 separate donors for the 2 organs that I need, that would increase the chance for rejection. So, the best choice for my situation is a deceased donor. 

Am I taking lots of meds right now?~I have been fortunate to only need 2 blood pressure meds. The medical staff always is amazed at that. I guess the typical transplant candidate has quite a long list. However, I'll be the proud owner of a pill box after surgery :)

Where am I located on the waiting list?~When a person needs a kidney, they go on a waiting list & accrue time to "earn your way" to the top of the list.  This system works because dialysis can keep people alive when their kidneys aren't doing the job adequately.  When someone waits for a liver,  it is different because there is no treatment like dialysis to perform the liver function & keep the patient healthy.

Therefore, a system has been established to rank people on the liver waiting list according to their health.  They are listed in order by something called a Model End-stage Liver Disease score (MELD).  Three blood tests (liver function, kidney function, and clotting factor) are done & calculated to give a MELD score, which can range from 6 (less ill) to 40 (gravely ill).

My MELD score calculates to around a 15.  That very low score is because my liver is functioning fine & my kidneys aren't too bad yet.  At a 15, I wouldn't get a transplant for a very long time.  My surgeon said that in cases like mine, they sometimes take into consideration the other factors affecting my health.  The size of my liver is causing other problems, which don't show on the MELD score lab work.  Therefore, he applied to the National Board that determines transplant issues & tried to get me more points to move up the list.

What a blessing--on September 12, I was granted more MELD score points & moved up to a 22 and then on December 6, Dr. Cameron re-applied & I was moved up to a 25--woo hoo!  Sometimes patients are transplanted at those scores, so I'm getting closer!

When a liver becomes available, UNOS (United Network for Organ Sharing) starts at the top of the list and keeps working down the list through patients until they see a match by blood & then tissue type and other factors.  So, to answer how many people are ahead of me--there's no way of telling that because I could be the first person to match the donor, even though I'm not at the top of the list. 

As a dear friend at church keeps reminding me: God has the perfect match picked out for me.  I just need be patient until He's ready for me to receive that gift. No need to worry--He's got this covered!

With love and hopefulness,
Belinda

Philippians 4:6-7   "Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."

Want to be notified for new posts?

Merry Christmas !!

Many people have asked to be notified when I have my transplant.  Since I have no idea when that will be, and I don't know how much prior notice I will have, I've found a way for you to know when we get the call from Hopkins.

I've added something new to my blog.   It will tell you when I publish a new post.  I know that many of you aren't comfortable with blogs, so I've tried to make it easy for you.

Here's how:


Go to the bottom of my blog & you'll see a box labeled "Follow by Email".
Type in your email address & click "submit"
Follow the steps (not many) to complete it.
You should receive an email to confirm it.

This won't sign you up for anything else--it's just a way for you to be notified of new information so you don't have to keep checking the blog.  Hopefully, I'll have some good news soon!


With love,
Belinda

How Meg got her name

Over the past 10 years, my kidney function has been very slowly declining but a kidney transplant still looked far in the future.  My kidney doctor kept close watch on me & my liver still functioned fine.  

However, during the past 2 years, I have felt my liver getting larger. It feels like my ribs are being pushed from inside & seems like I'm running out of room. This brings back memories of being about 8 months pregnant--depending on the day and meal :). 

I heard of a new procedure to drain the liver cysts & then inject them with alcohol to stunt the cysts from regenerating.  Upon consultation with a doctor in Harrisburg, I discovered that I was not a candidate for this procedure because my cysts were too numerous.  He said that there was a small chance that he could give me a few months of relief--wasn't worth the risks. He also said that he had no other treatment options for me.  Again, I was disappointed but thought--just live with it.

This past Spring, I participated in a Redemption Bible study @ our church. We discussed all parts of our life and anything that we feel that we need to release to God (instead of trying to control or be anxious about them). I really didn't feel that I was worried about my health, but I prayed to totally surrender everything to Him.  About 1 month later, God revealed His plan to me:

During a routine check-up with my kidney doctor, I shared my feelings about my liver size & how it has gradually affected my life more--especially with digestion & some physical limitations.  He said that on physical exam, it had grown to a size where he couldn't feel my right kidney anymore. He suggested that I return to see Dr. Mezey @ Johns Hopkins again. 

So, in June I saw Dr. Mezey & he reviewed everything over the past 10 years since I saw him.  I carried copies of all my CT scans.  It was humorous to see how technology had changed--10 years ago the numerous sheets of CT films were in a heavy, large folder.  The latest ones were on 1 CD!  He didn't have any recommendations for treatment options but referred me to Dr. Cameron, a kidney/liver transplant surgeon, so that I would be established with him when it was time for a  kidney transplant. 

Then 2 weeks later,  we went to Dr. Cameron's office.  First, the transplant nurse and social worker interviewed me.  I was really confused--it seemed like they were starting a complete transplant evaluation.  I said "I think you're confused--I'm only here for a consult".  They said, "okay, we'll stop with this paperwork & bring in Dr. Cameron."

We immediately felt a connection with Dr. Cameron.  He showed me my CT scan & explained that I only had about 10% of good liver tissue that didn't contain cysts.  He also said that the location of my intestines was being altered because the liver was intruding into places that it isn't designed to be in. He was focusing on my liver & said "you don't need to live this way". I was a little slow to understand the meaning of that but soon realized that I was the one who was confused (his staff knew what he was thinking).  He was going to recommend a liver transplant to me.  He said that he has had other patients with PLD & they have had great success with liver transplants.  One lady's liver was so large that people frequently asked her when her baby was due.   

So, he said "I can give you a Mercedes".  Now, I was really confused.  I have never wished for a Mercedes--my mini van suits me fine.  However, he was referring to the incision that I would have with a transplant--it would be shaped like the Mercedes symbol.  This whole thing seemed unbelievable.  I had been prepared for yet another doctor to tell me to just live with my liver situation. But, this doctor was telling me that he could do something to help me.  He explained more about it & then Todd asked how soon he would recommend proceeding with a transplant.  Dr. Cameron's response was "why wait?"  He felt that I was on my way to a kidney transplant anyway. He recommended removing all the bad parts (liver & both kidneys) and give me new ones.  Interior decorating with new parts--woo hoo!  He also said that there are many advantages to not waiting until my kidneys fail more & I risk developing more problems with my intestines or other things.

I said that I would need some time to think & pray about it, so he said "call me".  After he left, I could tell that Todd had made up his mind. I asked God "why not?" and had complete peace about everything.  I rarely make quick decisions (you'd understand if you saw me with a restaurant menu).  However, that peace that feels deep within told me that this was the route for me. So, we called the staff back in & started the transplant process. 

My liver had reached such a size that I thought it deserved its own name.  In medical terms, the suffix "megaly" means large.  Through my medical records & visits, I have heard megaly attached to my kidney & liver.  So, I figured that "Meg" would be a fitting name for my liver.

Thanks for listening--this was a really long post.

Love,
Belinda & Meg

~~By the way,  I chose the background for this blog because it reminded me of the ultrasound pictures that I've seen of my kidneys & liver (have to find humor in this somehow)!

Do I win a prize?

For about 18 years, my only treatment had been BP meds & I was feeling fine.  Then, I started noticing discomfort & swelling in my abdomen. I thought it was just my new "post-baby body". However, things just didn't feel right to me--I thought it was more than that. I was passed through several tests & specialists until it was confirmed that I had cysts on my liver also (polycystic liver disease).  

A gastroenterologist in York evaluated me & said that there was nothing he could do for my liver situation. He also said that mine was the largest liver that he has ever felt.  Do I win a prize?  I suppose that it could be fun to hold a record for something; however, an award-winning liver is not what I would choose.  It was a blessing, however, to connect with him because he referred me to his mentor at Johns Hopkins.

To help you understand what my "prize liver" is like--God designed our liver to be positioned under our right rib cage. By this time, my liver had extended down below my waist & across to my belly button. 

So, it was about 10 years ago that I first saw Dr. Mezey, a hepatologist (liver specialist).  His experience was comforting--he wasn't alarmed at the size of my liver because he had seen many livers and many were much larger than mine. Some of his med students were amazed at its size but he discussed it very calmly & confidently.  He explained that even though my liver is large, very rarely do the liver cysts affect its function (unlike the kidney cysts do).  He said the only possible treatment  would be to aspirate the fluid from the cysts but the risk of infection is great vs the chance for any relief.  Basically, he said "live with it--there's nothing we do for livers like yours."

I was a little disappointed that there was nothing that could be done but then told myself that this is God's plan for me--just try to learn the best way to be comfortable & don't dwell on it.  I learned to eat smaller meals & elastic pants became a dear friend--those were my remedies!

"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."                                                Jeremiah 29:11

~Belinda

Most commonly asked question...

"You look fine--why do you need a transplant?"  That's the most common response I hear when someone discovers that I'm on a kidney/liver transplant list.  Let me explain by taking you back to 1983...

While in college studying to be a medical assistant, our class was learning how to take each other's blood pressure the old fashioned way.  My classmate thought she was failing this lesson because she kept getting really high BP readings on me.  Our instructor confirmed that she was getting accurate readings & explained to the class that these were the BP numbers that should have medical attention. (I always liked show & tell--guess I tried to do it in college, too!)  So, after some doctor visits & tests, it was confirmed that I had PKD (polycystic kidney disease).

PKD is a condition where fluid-fillled cysts grow on kidneys & can effect their function.  I was familiar with PKD because some members of my family have it. At the time of my diagnosis, my kidneys were functioning fine, so BP meds & monitoring were all that was needed.  However, I knew that it was likely that my future contained a kidney transplant.

I can't say that I was looking forward to a kidney transplant.  However, it's a familiar process to me-- my mother & brother have had kidney transplants with great success. They are an inspiration to me!

So, what about the liver? Stay tuned...

~Belinda

(It's amazing that none of this was a surprise to God--"I knew you before I formed you in your mother's womb" - Jeremiah 1:5)

Kairos--A journey on God's time!

Welcome to my blog!  I'm thankful that God has provided family & friends to walk on this journey with Todd, Sara, Carly & I.  Thanks for being here!!

To explain the blog title--let me teach you some Greek and take you back in time...

The Greek words, chronos & kairos, literally mean "time".  Contrasting with chronos, meaning ordinary or chronological time, kairos (ki-ros)  means holy or God-given time. 
 
As some of you know, Todd & I lived & traveled aboard a sailboat from 1997-2001.  When we resigned our jobs in '97, we weren't sure how long we would be gone.  We figured it was up to God.  Thus, we thought the appropriate name for our sailboat should be "Kairos".

The name held true for our boat.  We traveled throughout the US East Coast & Bahamas and, quite often, our direction was determined by weather and/or places where we could serve--both initiated by God.  Also, in His time, God revealed when we should stop sailing & return to land when Sara celebrated her 1st birthday in 2001.

And now, this journey toward a new liver & kidney is also in God's hands.  So, as I was thinking about names for this blog, I had lots of ideas in my head.  However,  Kairos just seemed to fit again.  When I heard the doctor's recommendation for a transplant, one of my first thoughts was "God will have lots of opportunities to teach me through this process".  You see, I'm a detail-oriented person who likes to plan.  As I explain this transplant process in later posts, you'll see why this can challenge me.

Welcome to my journey on Kairos time!

With love & gratefulness,
Belinda