A good day!

Hey everyone,

Today was really good for Greg!  They finished up his IVIGs mid-morning and by mid-afternoon he was receiving his chemo.  He actually tolerated it really well and aside from feeling  a little "flu-ish" when they started administering it, he didn't have any negative symptoms!  He is really relieved that it went so well!  There's a chance that he'll be going home tomorrow, which would be amazing.  His brother Tim is staying with him through Friday night so he'll have some company until I get home Sat mid-day.  

The next step is to wait for Inova to send his blood up to Johns Hopkins to see if this treatment was effective.  If so, he'll be returning weekly for more chemo.  It not, they'll need to do more plasmapheresis too.

Thank you so much for praying for him all of this week!  God has been so gracious in getting him through this hospital stay without many problems.

Love,

Elise

Wednesday

Hey everyone,

I wanted to give you an update on how today went for Greg.

When I arrived at the hospital around 10am, Greg was already getting his second plasmapheresis treatment.  He slept through the whole thing - so exhausted from being up until nearly 5am Tues. night - it's not easy to sleep in a hospital!  They ran the procedure slowly to prevent his blood pressure from dropping or him feeling nauseous and everything went well. 

Next he had an EKG and ultrasound of his heart - just to make sure everything looked okay.  They aren't expecting any problems to show up on either of them, but just wanted to make sure they weren't missing anything. 

He slept for a good portion of the early afternoon and then his brother Tim arrived from PA.  Tim was definitely the highlight of the day and he kept us both laughing and really helped pass the time.

Around 5pm they started Greg's IVIG (immunoglobulin) drip, but after about 15 minutes he started having a burning and tingling sensation across his chest and arm, along with nausea that ended in him vomiting.  They stopped the IVIG treatment, gave him an injection to get rid of his nausea, and called the transplant doctor in.  After a lot of discussion, they decided to give Greg a few hours break from the IVIG and then to try again, but this time to administer the IVIG at a slower rate and to give him some benadryl and anti-nausea medication to help him handle the treatment.

Apparently IVIG can cause nausea in 25% of people, though vomiting is not typical.  However the doctors don't think it was an allergic reaction to the treatment, which is good because he really needs to be able to have it in order to protect his heart.  The doctor explained IVIG as a wide-spread attack on his immune system to knock out anything that is causing problems with his heart.

When I left the hospital tonight, Greg had already been back on the IVIG treatment for around 45 minutes and he wasn't having any problems with it.  Hopefully it'll continue that way all night!  He'll be on the drip for around 12 hours, and then the only thing left for this hospital stay is the chemo drug that attacks B cells.

Originally they thought he'd go home sometime on Friday, but because of the IVIG treatment having to be stopped and then administered more slowly, he might end up being in the hospital for an extra day.

We found out that by the time he leaves the hospital he will be as immunosuppressed as he was immediately following his transplant and he'll have to go back to the precautions he had at that time (no crowded places, mask out in public, etc.).  He'll be that way for at least 4 weeks afterward while he goes in for continued treatments with the chemo drug.

Hopefully all of that makes sense - I'm nearly falling asleep as I type so I might not be writing very clearly.

Please pray for Greg as he continues to get the IVIG treatment and especially for when he begins the chemo drug (which might be Thursday).  I leave for Pittsburgh tomorrow morning and Greg's brother, Tim, will be keeping him company in the hospital.  We're really grateful that there's someone here to be with him while I'm away for 2 nights.

Thanks for your prayers,
Elise

First treatment done

Today has gone pretty well over all!  Greg had his Quinton catheter put in his neck this morning about an hour after we arrived at the hospital.  The Quinton catheter is put in the same site that they use for his heart catherizations, but this catheter also sticks up all the way to his ear (with two different tubes coming out).  The anesthesia wasn't effective at making him sleepy during the procedure (he's built up quite a tolerance over the past few years) so he was very aware of everything they were doing - and that darn catheter has been giving him lots of pain ever since.  He had plasmapheresis done this afternoon for a few hours (they send his blood through a machine that cleans out the antibodies before sending his blood back into his body.  It wasn't a great experience, but he got through it okay and they handled the symptoms he felt during the procedure really quickly.

Greg finally (a couple minutes ago) got some pain medication to help with that some hopefully it'll kick in pretty soon.

Tomorrow he'll go through another treatment of plasmapheresis, and then he'll be started on the chemotherapy medication that will knock out his B-Cells.  Then he'll have a treatment of the immunoglobulins before he can go home (which they're saying will be Friday at the earliest).  After all of these treatments, they will send blood back up to Johns Hopkins to see if the treatments were effective, and that will determine what they do next.  He'll definitely be going back weekly for the chemo medication, but he might need additional plasmapheresis if this wasn't completely effective.

Aside from being in a lot of pain, Greg is handling this really well.  Please pray that he would be able to get good sleep tonight and that he would not experience a lot of bad side-effects tomorrow.

Thanks,
Elise

Procedures start on Tuesday

Hey everyone,

Thank you for all of the encouraging phone calls and emails.  We are so blessed by your prayers and love.  We're adjusting to this news a bit better each day - please keep praying for us in the midst of the disappointment. 

I wanted you to know that Greg's procedures start at 10:30 Tuesday morning.  I'm sure he'd appreciate prayers during that time as he gets some testing, and they put the port in and begin to get rid of those B cells.

We are really grateful for your love and support this week!
Elise

The upcoming Ministry Partner Team parties are still on!

Hi everyone,

This is Greg writing - Lise usually handles the blog these days, and its really good to be communicating directly with you after such along break. I think we recently shared some particularly defeating news: I've developed something called antibody-mediated rejection, and I've got some unpleasant medical stuff coming up.

Part of the reason that this news is so wearying is that it really felt like we were moving on from all of this over the last couple months. We were so excited to be heading up to Pennsylvania for visits to our hometowns, and then moving on to Florida for our summer placement of taking seminary classes.

Because of the hospital stay I have coming up (I'll be getting something called a "port" in my chest so they can do some special plasma treatments and B-cell removal), I won't be able to come to PA. I really, really was looking forward to giving many of you a hug and hearing about your lives and thanking you for everything you've done in ours - you are all like precious family to us, and it would have been so good to see you face to face.

After the port treatments, I start 4 weeks of a special type of chemotherapy that targets B-cells instead of T-cells. For that reason, both Lise and I can't attend our classes in Florida. Its a little bewildering how much a 5-minute phone call can screw things up.

A huge part of what I've been learning and growing in this spring is seeing Jesus and His plan and mercy even in troubled times - and I have to say that even though Elise and I feel like we got knocked down again right now, there are a lot of really precious mercies wound up in this circumstance. First and foremost, there's no immediate threat on my life - they found it and are treating it quickly enough that I should be able to avoid any terminal fears involved. Its not going to be fun, but fortunately its one of those things where you just grin and bare it and then, in all likelihood, get up and get back on track again.

Secondly, we are still very much going ahead with the Ministry Partner Team parties. I won't be able to attend (I'll physically be in the hospital during both the Zelienople and State College gatherings), but Elise will still be there, and we would still love and be blessed by your company. So if you were planning on coming, do still please know that you're welcome at Harmony-Zelienople United Methodist Church, and/or Dan and Rosemary's family ranch in State College.

In addition to food and spending time together, we would also like to add an element of a prayer gathering to each celebration. There will be some centerpieces out to help you know what to pray for, and it would mean the world to us if you would consider joining with some fellow team members to pray that God would either fix this quickly or give us the faith to get back up again. This may be a familiar prayer by now, but it continues to be a much-needed one ; )

Finally, Elise and I are putting together some really nice packets that we'll have at the dinner, and we would ask you to pray over whether God is leading you to take one as you go (they'll just be sitting out, so please don't feel compelled to take them if you don't want to). The packets will have a bunch of information in them regarding our ministry - we want to ask you if you would be willing to refer us and our ministry to a friend or loved one who might be interested in joining with us as a Ministry Partner. Many of you will recall us needing to build a team of ministry partners before we were allowed to report to assignment here at Mason - this would be the same process, and we promise to exercise the same respect and care as we always do when asking someone to consider joining our team.  

The reason we find ourselves needing to raise support at this time revolves around the government's new healthcare legislation, which dictates that the members of our organization can now only reimburse $10,000 of medical expenses/year. While this works for most families, it doesn't even come close for me. In the past, through your extraordinary generosity, Elise and I have been able to remain on staff and able to afford the medical care I need. We now find ourselves in a situation where we need to raise $2,000/month in new monthly ministry partner donations (which we can then arrange to access as "additional salary" for specific medical expenses - it's heavily taxed, but we can still access it, which is the key). The parties in Zelienople and State College are NOT about our financial needs - rather, they are a celebration of all that God has done through you here in Northern Virginia. I just wanted to ask if you would grab a packet or two and pray over them - and I wouldn't ask unless the need to get started on reaching this goal wasn't great. Both Elise and I love you so much and don't want to presume upon you - please know and believe that.

All that aside, please come and eat delicious food, talk with my lovely wife, and see some of the slides and displays Elise is making to showcase what Jesus has done through you here at George Mason University. You all truly are God's hands and feet.

All my love, Greg

Big Disappointment

Well, we got the results from Greg's blood work this evening. He has
Asymptomatic Antibody Mediated Rejection, which means that his body is
producing antibodies against his donor heart. This is a different
type of rejection than the acute rejection he had in December where
white blood cells were attacking his heart as a foreign object. The
good news is that they caught it early enough that his heart hasn't
been damaged at all (his biopsy results were fantastic aside from
this) and it isn't something that is life threatening. But, if it
goes unchecked it can cause coronary artery disease- and that's not
something that we want to deal with.

Greg will be in the hospital for 5 days next week being treated -
they'll use a dialysis-like machine to remove the B-cells and then
they'll administer a B-cell attacking medicine - all of which will
hopefully stop the rejection. After he leaves the hospital from his
first treatment, he'll be going back every 7 days for at least 4 weeks
for additional treatments of the medication. Since this is a medicine
that is used in chemotherapy, he might be feeling pretty bad and stay
overnight during the additional treatments, but he also might react to
it well and be able to go home the same day.

It's a pretty complicated ordeal, but only within the last few years
have they really understood the implications of antibody production in
heart transplant recipients and so we are very blessed that they know
what to do and that they are able to prevent long-term problems from
this type of rejection.

The biggest disappointment is that we've had to cancel taking our
seminary courses for Cru in Florida this summer. We were really
looking forward to it and after months of not getting our hopes up
that we'd really be able to go, were finally getting excited. This is
also impacting the trips we were taking to PA at the end of this month
to see family and our ministry team. We are re-working some plans so
that I can hopefully go for a couple days, though Greg won't be able
to go. Of course this is another big disappointment for both of us.

Right now we're just both feeling extremely disappointed. We'd
appreciate prayers for us as we emotionally process this and try to
rearrange our summer arrangements, and also prayers for Greg as he
begins his treatments. We don't know exactly when he'll be at the
hospital next week yet, but I'll keep you updated on how he's doing
when things get started.

Thank you for your prayers,
Elise

No news yet

Hey everyone,
You haven't heard from me with any results from Greg's blood work yet,
because we haven't heard anything. They sent his blood to Johns
Hopkins because the test that they needed to perform can't be done at
INOVA Fairfax. We'll definitely let you know as soon as we hear any
news.
Thanks,
Elise

Pretty good news!

Greg's transplant coordinator just called to let us know his biopsy
was a 1 - which means he doesn't have to be treated for rejection and
they don't have to make any changes to his anti-rejection medications.
Something else did show up on his blood work that is concerning, so
he'll be going in on Monday to have more blood work done.

I only have a very vague understanding of the issue with the blood
work and I don't want to say anything that isn't true (or do research
on the internet because that always is full of worst-case scenarios!),
but the coordinator is not panicked at all, and she didn't tell Greg
to come back from his camping trip that he's on (his annual trip to
Cook Forest with his dad), so those are all good signs.

When we get some more answers, I'll let you know. In the meantime
please pray that God would give me a sense of peace throughout the
weekend and that I would be diligent in not letting my mind stray or
worry about things I don't understand and can't control. Also, please
pray that whatever is showing up on his blood work would miraculously
resolve or have a simple medical solution.

Greg is feeling great and he looks great - so those are great signs!

Thanks so much,
Elise

Biopsy today - so far so good!

Hey everyone,

Wow, its been a while since I last wrote an update! Things have been
going very well lately. Greg has been doing great physically, and at
his appointment this morning the transplant team said he looked great!
His heart pressures were "perfect" according to Dr. Desai, and the
nurse coordinator was really pleased by everything else. We'll find
out if there's any rejection tomorrow when they get the biopsy
results, but with everything else looking so good it is unlikely.

We've been able to be focused on ministry and other life stuff lately
and have barely had to think about Greg's health at all (aside from
the normal post-biopsy stuff that is pretty routine for us at this
point). A few people have asked me lately if it seems like Greg's
transplant was a long time ago or just yesterday, and it made me
realize that it's not something that I think about that often now.
I'm sure it's very different for Greg, but for me it seems like a
really long time ago in some ways - almost like a surreal other
lifetime. And that blows me away, because there was a long time when
we couldn't picture there ever being a time in the future when we
weren't totally consumed by Greg's heart. I am so thankful for how
the Lord has carried us through all of this, and amazed at how he is a
healer of not just our physical hearts, but our spiritual hearts too.

I'll let you know what we find out tomorrow about the biopsy!

Elise