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