Now we wait

Hey everyone,

This whole process has been kind of confusing for us - not knowing when tests need to be done, etc.  But, Greg finally had a chance to talk to the transplant coordinator this morning and we have a solid plan.  Unfortunately it means that we have to wait for 2 weeks to find out if his antibody mediated rejection is gone. 

He won't have a blood test this week.  According to the coordinator, it would be pointless to test his blood at this point because the Rituxan has not had enough time to take effect.  They want it to kill off his b-cells and then they need to give it time for his body to produce more b-cells (that hopefully don't remember that they ever recognized his heart as something foreign).  So his blood work will be done at the same time of his next biopsy which is Wednesday July 11th.

We're disappointed to have to wait to find out the results, but we're just going to move forward and hold our summer plans very loosely - hoping for, but not in, the best. 

On July 22nd, we're hoping to go to Hawaii to celebrate our 5th Wedding Anniversary (which was yesterday!).  We've been saving for 5 years to do be able to take a trip for our 5th Anniversary, and when Greg was in the hospital waiting for his transplant, some incredibly loving and generous friends, family, and even strangers, surprised us by helping to make this trip possible (the great part is that Hawaii has a transplant-capable hospital so if we had an emergency, we wouldn't be too far from medical assistance).  We've known all along that it's possible we won't be able to go because of Greg's health, but it has given us something fun to look forward to and hope for in the midst of a lot of really bad days.  We just really want to get away from Fairfax and hospitals for a while and spend some time having fun and making memories and celebrating that we made it to this anniversary (without Greg's new heart, we never would have)!

So we're praying for a good result on the 11th.  We'd love it if you would pray for that too.  But even more so, would you pray that we would keep holding Hawaii loosely?  Please pray that we don't set our hope on a vacation but that it would remain in Christ who gives us hope beyond this life.

Thanks so much,
Elise

Another good treatment!

Hey everyone!

Greg had what we hope was his last chemo treatment yesterday, and it went really well.  He didn't develop any headache, and other than being really tired and a little nauseous off and on he's been feeling okay.  We're so glad to be done with those treatments and even more thankful that he had two weekends without having to be hospitalized!

The next step in all of this is getting blood work again to see how effective the treatments have been at fixing the rejection.  We're waiting to get an appointment, but it seems like he'll be getting the blood work drawn sometime this week.  They need to give the Rituxan time to take affect before testing him.  He'll also be getting a biopsy in a couple weeks - it depends on when the doctor thinks it would be the right time (with the Rituxan fully in effect).

Greg had been developing really awful insomnia and some nights wasn't even able to fall asleep at all, so he's back on a sleep medication.  It has helped SO much for him to get a few nights of good sleep!!  He doesn't want to be on it long term, but we are just really glad that he has it right now when he really needs it.

We might not have any updates for a little while, but I'll let you know when we find out how the rejection's going. 

Greg is so encouraged to know that he is being prayed for by you - we are grateful for each one of you.

Love,
Elise

No Headache!!

Hey everyone!
I have great news to share!  With the three doses of steroid in him, Greg didn't have any headaches from his chemo this week!!  It's been well over 24 hours, so we feel confident that he's passed the point of possibly developing a headache.  This is a huge relief and makes his next chemo infusion (next Friday at 7:30am) a lot less scary!
Thank you for praying!
Elise

mid-week update

Hi everyone,

We are very much in need of your prayers.  Greg is doing well all in all (so much better than over the weekend!) but honestly, he feels pretty awful.  He is experiencing a lot of discomfort and just feels like his body is overloaded with chemicals and medicine.  Obviously he needs all of those medicines to protect his heart from rejection - but they have a huge impact on how he's feeling.  I don't know from personal experience how he's feeling at all, but he describes it as feeling "poisoned" or like he's just being squeezed all over his body.  He's felt this before when he's been on huge doses of various medicine so it's not a completely new experience - just a bad one.  I'm sure many of you who have undergone serious medical treatments understand what Greg is going through.

He is also understandably worried about his upcoming Rituxan infusion on Friday.  Would you please pray that the steroid (he takes it tomorrow, Friday, and Saturday) would be effective at completely eliminating the headaches?  Greg said he'd be content with dealing with headaches if they were minor and didn't require him to be hospitalized - he is so so tired of being in the hospital.  Each time he's there over night takes a toll on him.

And overall, we're just both feeling very disappointed still about this summer.  We have been working so hard for months to move forward and set goals and believe that it is possible for us to make plans and be able to go through with them.  This summer represented a fresh start to us in our minds, so the impact of being stuck at home due to rejection and being hospitalized over and over again is pretty big.

And of course, being honest, this just brings up a lot of fears that we have about the future.  How will this impact his heart long-term?  Will he keep rejecting like this?  Will we ever get more than 6 months without a major medical problem?  I am working really hard to discipline my mind and not dwell on these worries, and God has certainly taught me a lot about only focusing on today - because today is all I can handle.  So I hesitated to share those worries here, but I need to be honest that this is not a cake-walk and we are struggling.

We would really appreciate your prayers for the remainder of the week.  I'll let you know how things go on Friday.

Thanks so much,
Elise

Home and doing well

I just realized that I never sent you an update on how Greg's been since Saturday!

Greg was able to come home on Sunday evening and he's been doing really well since.  He's sleeping a lot because he's so worn out from the whole ordeal he's been through, but he's also more alert and feeling better than he was last week in between treatments.

The doctors have determined that it was the Rituxan (the chemo med) that is causing his awful headaches.  They wrote him a prescription for the steroid that has helped stopped the headache both times he was in the hospital - and he'll take it the day before, the day of, and the day after his next two Rituxan treatments.  We are really thankful that they have a plan going into this week's treatment, and we're hoping that he'll get through it without having to be admitted to the hospital!

His treatment is at 6:30am Friday, and I know that he would appreciate your prayers that day.  The key time seems to be 10-12 hours after the treatment ends, because that is when the headaches developed after the last two treatments.  I will let you know how things go this weekend.

Thanks for walking through this with us!
Elise

Back in the hospital but doing OK

Hi everyone!

Some of you have already heard that Greg is back in the hospital.  His chemo treatment went really well yesterday and he was doing great until around 11pm.  By 7:30 this morning, he was calling his parents (who were staying at a hotel down the street) and asking them to drive him to the hospital because the pain was so bad.  If you know Greg well, you know that he hates going to the hospital (who can blame him) and the fact that he asked to go says a lot about how much he was hurting.

I was in State College and missed a few of Becky and Smitty's phone calls, but by 9:30am I knew what was going on and was on my way back to Fairfax.  It took a few hours to get the emergency room doctors/nurses to understand everything that had happened with Greg last week and he almost ended up going in for a spinal tap, but thankfully the neurologist showed up in time and decided that based on his history, it wasn't wise.

By 4pm, Greg had the steroid in him again that was effective last week in the hospital, and after a short nap (lots of meds!) he was already feeling much better!  He's now up in the Heart Institute, and has eaten and feels pretty good (no headache!)!  They have stopped the anti-seizure medication and started him on some new anti-headache meds in addition to the steroid that has helped so much.

I'm at home right now getting him some stuff for his overnight hospital stay real quick, and soon I'll be heading back to the hospital.  I wanted to thank everyone for praying today and I also wanted to assure you that Greg is doing well.  It seems like they doctors have decided that these headaches are definitely from the Rituxan (chemo) and now we're just hoping they'll come up with a good plan that will keep him headache free and out of the ER next weekend!

Thanks so much - and for all of the State College people who came to the celebration last night - it was so wonderful to see you and pray with you.  Thank you!
Love,
Elise

State College Ministry Team Party is on!

Hi everyone!

For a while it was looking like I might have to cancel the State College Ministry Team party but now that Greg is home and doing so much better, we are still having it!  Unfortunately, Greg won't be able to come, but I would love to see you there!  Greg's parents are visiting him for a few days at the end of this week and will be able to take him to the hospital on Friday for his second chemo infusion and will be there in case he needs someone to care for him afterward.

We are so thankful for your support of our ministry and I look forward to thanking you in person!
Elise

Tuesday

It's so nice to have Greg home!  He isn't feeling very well, but the headaches haven't returned which we are very thankful of!  He is mostly just worn out - sleeping a lot, feeling hot and cold at the same time, dealing with some stomach-related issues, etc.  Thankfully he hasn't had a fever, and all of the symptoms he has now are explained by the medications he is on and the huge ordeal he went through this week!

I had shared some wrong information due to confusion on my part: Greg's 2nd round of Rituxan (the chemo medication) is this Friday at 6am.  Greg's parents will be visiting for a couple days and will be with him for that procedure.  It should take around 6 hours for the infusion to complete.  If the doctors were right and the headaches were a reaction to the IVIG, Greg should have no problems.  However, there is a chance that he was reacting to the Rituxan, and if so it will become really obvious this time around.  Thankfully he's on the steroid and anti-seizure drug to prevent headaches from forming and to decrease any inflammation in his head so even if he does have the headaches they should be able to keep them under control.

The other thing that I misunderstood is that they will send Greg's blood to Johns Hopkins after all 4 of his Rituxan treatments are complete to determine if they have been effective.  So we won't know for another month if this is working.  It would be so much easier to know right away but we'll just have to take this a day at a time and trust that God is in control and that he knows exactly what is going on inside of Greg's body.

We probably won't have much news this week, but I will let you know how his infusion goes on Friday.

Thanks!
Elise

HOME!

Greg is home!!!

He was discharged from the hospital this evening after a headache-free day!  The steroid and seizure drug have worked wonders!  He'll be on them for a while still, but since they were changed from IV to pill form, he is fine to be on them at home.

He's scheduled to go back to the hospital for his second infusion of the chemo on Sat. morning and we are supposed to follow-up with the transplant team and neurology department within the week.

Mostly, we are just so grateful that he is home and doing so much better!  Thank you everyone who prayed for him this week!  We definitely needed your prayers, and they were answered with a big "yes"!

Love,
Elise

late night progress

Around 10pm last night (Sun), Greg woke up from a long
benedryl-induced nap and was a little hungry! He ate a roll, drank
some gingerale, and we had the most normal, lucid, conversation we've
had in days! He also walked around his room a bit and even sent his
parents a short email before the screen bothered his eyes too much. I
was so encouraged to see him feeling so much more normal! It seems
like God is working through some of these new pain medications!!

I just got back to the hospital and he's in a pretty deep sleep - he
woke up for a minute when I came in but is holding his head and didn't
seem to want to talk out loud - just mouthed some words to me. I'm
not sure how his night went but hopefully things continued to go well.

I'm looking forward to talking with the doctors later today. I'll
keep you posted.

Thanks for praying,
Elise

Sunday

Hey everyone,

Today went better than yesterday.  Greg got some sleep last night, and though he did wake up with a bad headache and also vomit at one point, in general the pain medications are keeping things better under control.  Since it is the weekend, not a lot happened today but his doctors did stop by.  Dr. May thinks that this is probably aseptic meningitis from the IVIG but he doesn't want to do a spinal tap to diagnose it since they can't treat it even if they do get a positive diagnosis (and there are lots of risks involved with a spinal tap).  The neurologist on the other hand thinks a spinal tap could be a good idea, though he doesn't think that this is bacterial meningitis and acknowledges that they couldn't treat it if they did have a positive diagnosis - but he is looking for answers.  I'm sure Dr. May, being on the transplant team, will have much more sway than the neurologist.

The neurologist's nurse practitioner told us that it is probably not a migraine, based on the fact that Greg hasn't had migraines in the past and it would be odd for him to start having them in this manner. 

The doctors are continuing the steroid that they put him on yesterday and have also added another medication that is typically used for seizures, but can have good results for any brain-related issues.  He'll be on the steroid and the new medication (by IV) for a few days).  They also started him on IV lasix to pull some of the water off of him because he is swelling and retaining water.

Tomorrow, he will probably get a chest x-ray because they are concerned about his low blood-oxygen levels (though it was 89% tonight, which is the highest it's been so far).  Hopefully we'll start seeing the effect of some of these medications tomorrow and his headaches will lessen in severity. 

I did find out that they are trying to wean him off of the Dilauded (which is the only thing that has controlled his headaches so far) because it is very strong and highly addictive.  Please pray that they would be wise in deciding how to balance weaning him off it it with controlling his pain.  The hope is that the steroid and IV med will begin to kick in and control the pain instead.

He has slept a lot today (which is great!) thanks in part to the bendaryl knocking him out.  He did get a shower today which was great!  He felt pretty awful during it, but was really glad to be clean.  He tried eating a bite of a grilled cheese sandwich earlier, but it made him nauseous.  Before I go home tonight I'm hoping to at least get a cracker in him, but we'll see.  He has no interest in food and gets nauseous easily.

So.. that's a lot of details, but I know that many of you like to pray for specifics, and I appreciate that! 

I'm pretty exhausted, but I'm hanging in there - and trying to nap when he naps.

 I spent most of today finishing reading "When God Weeps" by Joni Eareckson Tada and Steven Estes, and I just have to take a moment to recommend it to you.  It is by far THE BEST book on suffering I've read (closely followed by Affliction by Edith Schaeffer) and I can't recommend it more highly.  You may be familiar with Joni Eareckson Tada's story - she became a quadriplegic as a teenager due to a diving accident and has experienced immense suffering since then.  She has asked God the hard questions and walked through dark times - and this books is full of incredible truth that she has learned the hard way.  There's something about learning about suffering from someone who has really suffered that makes it all so much easier to swallow.

Anyway... enough of my book recommendation.  I'll let you know how tomorrow goes.  Thank you for praying for Greg.  He was really encouraged when I told him how many people are rallying around him in prayer.

Love,
Elise

Sunday AM

Greg's still having bad headaches this morning.  They aren't escalating the way they were Fri and Sat, but the pain meds only seem to be keeping them at bay instead of getting rid of them (his pain is staying around a level 5-6, not peaking to a 10, but not going down to a 2-3 either).  They are going to start him on 6 days of steroids to see if that will help.

hard 2 days

Thank you so much to everyone who's been praying for Greg over the past two days.  I didn't have a chance to write an update, but I know some people kept up to date via some emails and Becky's facebook.  I'll try to fill you in a bit here.

Things seemed to be going great Thursday and Greg had a really good night with his brother Tim and everything was on track for leaving the hospital Friday.  But, Greg woke up around 5am vomiting and suffering from a horrendous headache.  That started a whole day of Greg having run-away headaches that were indescribably awful, with chills, vomiting, and a short-term fever.  Despite trying a variety of pain killers (including morphine), the doctors couldn't get Greg's pain under control.  They ended up doing a CT scan to check his brain and sinuses to make sure that there wasn't anything going on that they weren't aware of in his head.  Thankfully, the CT scan was completely clear.  But Greg had a horrible 24 hours dealing with the pain.

This morning (Sat) they finally realized that the vomiting was caused by one of the pain killers, so he won't be getting that anymore.  After a terrible headache around noon, Greg's nurse and doctors found a combination of medications that are keeping his head-ache at bay.

A neurologist stopped by to examine Greg and give the doctors some ideas on how to manage his headaches.  They may try some steroids tomorrow and there are a few tests that they might run on Greg, dependent upon his transplant doctors' permission, to try to determine the cause of these headaches.

At this point, they think that they are likely a side-effect from the IVIG.  At first, it seemed like it was from the chemo, but for a variety of reasons they now think it might be from the IVIG.  The difficulty is that they can't seem to get ride of them and are only managing the pain on incredibly high levels of pain medicine.

There is also a possibility that Greg has aseptic meningitis (not bacterial) but if that's the case, they can't do anything but keep him comfortable as he deals with the pain.  There is also a possibility of inflammation between his brain and head (it's too dark in the room right now for me to see the notes that Tim wrote about that) - they think that based on the location of his headache.

Greg ate 4 saltines and a few bites of chicken noodle soup tonight - his first food in 2 days.  I was encouraged to see him do fairly well and actually take a nap for about 2 hours this afternoon when his pain was under control.  Right now we're waiting for his medication to kick in and stop a headache that was developing.

It seems unlikely that he'll be going home tomorrow (Sunday) because they still need to figure out why his headaches are so severe and how to keep them under control.  I'll keep you posted as I'm able to.

Last night we had a ministry team party in Greg's hometown and I was so encouraged by the love and support that so many people gave us.  It was a true blessing to be surrounded by the body of Christ and to pray for Greg together.  Words can't describe how grateful we are to every single person who prays for us.

Thanks so much,
Elise