Thursday, March 31, 2011

Getting Better =)

Hey Everyone,
Good news tonight!  Today was a much better day for Greg!  He's been awake since 3pm and still has some energy left which is incredible - and he's in a lot less pain and hasn't had a headache!  It is amazing the change that's taken place in 24 hrs.  It definitely seems like the doctors were right about the Prograf level being a big player in him feeling so awful.  Tomorrow morning he gets a blood test so they can check the level and determine what to do with his Prograf over the weekend.  Then they'll check it again on Monday when he goes in for the biopsy.  If his WBCs are too low tomorrow they are going to wait on the shot to give him a break from all these side effects - in that case they'll just give him the shot Monday as well.
Thank you so much for praying for Greg.  It's so good to be able to write you with good news again!
Have a great night,

Possible explanation

Hey Everyone,

Greg's blood test this morning showed that the level of Prograf in his blood is more than 3 times the desired level.  The doctors think that this may explain a lot of his symptoms.  After a thorough examination they concluded that he isn't showing signs of any of the serious issues that people can develop, but he is possibly showing some other complications (more testing/examination needs to take place before anything is definitely diagnosed).For now their top priority is waiting for his liver to metabolize the excess Prograf in his blood and then see if any of the symptoms go away once he has an appropriate amount of Prograf.  He won't take any Prograf (which he takes 2x/day) until after his blood test Friday morning at which point they'll decide the next course of action regarding Prograf.  Despite all of this, his heart seems to be working really, really well!  Thank God!  It's so crazy that his transplanted heart is thriving, but everything they do to keep it that way is really taking a toll on the rest of Greg's body. 

I asked how it was possible for him to suddenly have such a high amount of Prograf in his blood all of a sudden when they didn't change the dose.  They explained that as they have changed the other medication's doses (trying to increase WBC production), it has changed the way the drugs are interacting with Prograf, thus changing the rate at which it is metabolized.  Also the increased pain medication Greg's needed, especially these past two weeks, can really slow down the way the liver processes Prograf.  So, there is a sensible explanation.  As they keep saying over and over: it's all a balancing act.

Now it's a matter of getting Greg through to Friday.  He is in terrible pain and barely able to stay awake for more than a couple hours at a time.  It's very frustrating for him.  Would you please pray for him these next two days?  Also please pray for me as I try to help Greg through this really hard time. 

On Monday morning he will have a biopsy to check for rejection.  We are really glad this is happening because all of the decreases in his medication have had us worried that he's developing rejection.  Thankfully, rejection is treatable even though it is scary to think about.

In all of these crazy details, we are relying on God's total control over all of them.  If you pray for us, please also pray that we would rely on Him more and more for the strength, peace, and healing that we need.

Thanks so much,

Tuesday, March 29, 2011


We just heard from Greg's coordinator.  She said that his Prograf (a transplant medication) level was very high when they tested it in the ER.  It wasn't tested at the right time (typically they test it before he has his first Prograf dose of the day) but she's wondering if it would show up as too high when tested at the right time.  If so, this could explain a lot of the pain he's feeling.  We'll be going in first thing tomorrow morning for them to get a more accurate Prograf number.  The other issue she is concerned about is how dehydrated he was in the ER.  Our goal for today is to keep him well hydrated as we wait for more results tomorrow. 

If the issue is just the Prograf and dehydration it will be easily fixed, which we are very thankful for!  I'll keep you updated when we get more information.

Thanks for praying!

Please pray

Hi Everyone,


We just spoke briefly with Greg and he (and Elise) have just gone through a tough couple of days.  He began getting severe migraines (complete with nausea and vomiting) about 48 hours ago.  It sounds like he has had 3-4 since Saturday night. Along with that, the pain that he is experiencing in his bones and muscles has continued to get much worse.  They called the transplant center "on call" coordinator yesterday and were instructed to go to the ER immediately where it sounds like they spent most of the day.  They did a TON of lab work, XRAYS and and CT scan of his brain and nothing definitive showed up.  They did say that his WBC count was "better" - though no definite level was given. Dr. Desai gave instructions that he was to be discharged, but that they were to call first thing this morning to set up a time to be seen in the transplant clinic.  They made calls requesting to be seen, but never got an answer back, which is extremely unusual for that clinic... and very disturbing when you're feeling so awful.  Greg said that it's just frustrating because since he's not running a fever, it seems like no one is really alarmed, but he feels worse and worse every single day.  In addition to all the pain, he is extremely fatigued - sleeping as much as 15 hours per day. There are SO many unanswered questions going through their minds (and ours) right now and it would just be a real blessing to have some clarity about what's going on - be reassured that nothing major is wrong - and oh so importantly allow him to have relief of this pain.


If you would please pray for those things and for protection over his new heart- that no rejection would be occurring! - we would be so very grateful.  Also please pray for peace for Greg and Elise - that fear would be kept away and they would feel the Lord's presence. Thanks for always interceding on their behalf - we are all so blessed by your presence in our lives.


I hope and pray that you and those you love are well -- again thank you.




Monday, March 21, 2011

No WBC Improvement

Greg had another blood test today and it showed that there was no improvement in his WBCs despite the changes that were made in his medications and the most recent injection.  He'll be going back tomorrow to get another injection, and then it'll be back for more blood work a day or so after.  In hopes that something will change, the transplant team has instructed Greg to take no Cellcept tonight.  This is in addition to no Valcyte - so they are leaving him with very little defense against rejection.  We don't feel like we really understand all the adjustments that they are making, but we're both worried that all of these medication decreases are going to end up in rejection at his next biopsy (we don't have an appointment yet but it should be some tie next week).  Greg specifically asked me to ask you to pray that his heart would be protected against rejection.  If the rejection was significant he'd probably have to be in the hospital for a few days and he's so tired of going to the hospital that it would be even more of a discouragement.  Would you also pray for his WBCs to improve?  That his body would respond to the shots and just make a whole ton of them?  We know that God is in control of all these details and when medicine doesn't work like it should it reminds us that He's the one we need to be relying on.

While he's still feeling incredible bone-soreness, his energy level has significantly improved since early last week which we are very grateful for!  Tomorrow's injection could bring that back but we are praying that it won't. 

Thank you for continuing to pray for us!

Thursday, March 17, 2011

Slight WBC Improvement

Hi everyone!

Yesterday Greg returned to the hospital for another injection to help improve his white blood cell count.  There has been a slight improvement since the doctors decreased Cellcept (one of his transplant meds) but it wasn't the improvement they were hoping for.  At this point decreasing the Cellcept even more is not a viable option because it would put Greg at too great a risk for rejection. 

Since something needs to be done, the doctors decided to try eliminating Valcyte - one of his other medications.  Valcyte protects Greg against CMV - a virus that 80% of the population (at least where we live) has been exposed to.  Like chickenpox/shingles, CMV is a virus that stays in your body once you have it and when you become immunosuppressed the symptoms can pop back up.  For most people CMV causes flu like symptoms, but for Greg and other immunosuppressed individuals, it can be far worse.  Interestingly, Greg is part of the 20% of the population that has not had CMV, but his donor was part of the 80% that had CMV.  So Greg never had CMV, but his heart did!  How odd!  Typically in cases like this, the transplant recipient would remain on Valcyte for 6 months.  However, having such low WBCs leaves Greg susceptible to a whole host of infections, so they've decided to stop the Valcyte (at approx. 3 1/2 months) because Valcyte can decrease WBC production.

Greg will continue getting weekly blood tests to check his WBC count and to see if he is developing CMV.  If he develops a low-grade temperature and abdominal discomfort we are supposed to call immediately because that might indicate CMV.  The hope is that they'll be able to catch it early enough and knock it out by putting him back on Valcyte if he doesn't start to develop CMV.  But the real hope is that his WBCs improve and he doesn't develop CMV at all!  In the meantime he needs to be extra-cautious to not be around anyone who is sick and to wash his hands frequently, etc.

Greg is really glad that there will be less injections because they have caused incredible soreness - aches in his bones - and lots of fatigue.  He slept 18 hours straight on Sunday and most of the day Monday and Tuesday as well!  This is typical for someone receiving the injections - which is part of the reason they want to try stopping the Valcyte.

Would you please pray for Greg?  That God would protect him from CMV and that his WBCs would improve?  He ended up at the hospital 4 times last week and twice this week already and is feeling really discouraged by that - I know he would really appreciate your prayers in that area as well.  I've also been feeling pretty down this week.  Please pray that this verse would be true of me, "You keep him in perfect peace whose mind is stayed on You, because he trusts in You" (Isaiah 26:3) - it's easy to feel despair looking at all that is happening in the world, but if I focus on Christ and who he is and what he's doing, he promises peace.  What an amazing promise!

Thank you for your prayers,

Thursday, March 10, 2011

WBCs still too low

Just a quick update:

Greg had his blood test today to see if decreasing his medication would help him produce more white blood cells (WBCs).  Unfortunately it didn't work, so he'll be going to the hospital tomorrow and either Monday or Tuesday for injections to hopefully stimulate his WBC production.  We still don't know what would happen if that doesn't work - we're just taking it one day and one blood test at a time.

Hopefully you'll hear back from me with some good WBC news early next week!

Tuesday, March 8, 2011

Biopsy result and some answers

Hi Everyone!

It's been a while since I last wrote an update, so I have a lot to catch you up on!

This past month has been pretty tough for Greg - and a bit discouraging.  In many ways he feels like he hit a plateau in his recovery - he seemed to be doing better and better for a while but started to have less energy and stamina.  Even walking up the 8 stairs to our apartment became pretty difficult for him, leaving him winded.  He also seemed to be getting sick over and over again with the same sore throat, achy muscles, stomach aches and other cold/flu symptoms.  But most alarming was the fact that he was experiencing so much dizziness and had actually fallen down 5 times in one week.

On Feb. 28th he had a cardiopulmonary stress test and was also able to talk at length to Dr. Desai about how he's been feeling.  Dr. Desai was pleased with how the stress test went - and though there is no "good" or "bad" result (they are just finding a base-line to use for his cardiac rehab) it was exciting to see the difference in how he did this year vs. almost exactly 1 year ago (which happened to be the day that Dr. Desai first mentioned the ARVD diagnosis and suggested we go to Johns Hopkins - a significant day for sure!).  Dr. Desai suggested that Greg see an ear/nose/throat specialist because the dizziness issue sounded like a problem with his inner ear.  Thankfully none of the problems he's experienced are heart-related issues.  The first available appointment is April 7th.  He also explained that the decreased energy and stamina could be coming from the decreased Prednisone and pain killers.  Greg has been on such high doses of both for so long that they have masked how much of a toll the surgery had on his body.  Apparently it's common for patients to feel totally wiped out when the Prednisone doses decrease since it is a steroid and gives people extra energy and alertness. 

Yesterday, Greg had another biopsy and more blood work.  He also had his first Allomap blood test.  It's pretty complicated to explain, but transplant doctors are trying to reduce the number of biopsies patients need to have due to the associated risks and pain experienced (Greg doesn't get any pain medication or sedatives during his biopsies - ugh!).  They've decreased the number of post-transplant biopsies over the years, but a recent development is the Allomap blood test.  It doesn't give a clear yes or no for rejection like a biopsy does, but it gives a % likelihood that the patient is experiencing rejection.  If there is a high likelihood of rejection, a biopsy is performed.  If there is a low likelihood of rejection, the biopsy is skipped!  Yesterday's Allomap test was done to give the doctors a baseline for Greg so that they are better able to interpret his numbers.  Hopefully throughout the year he'll have more Allomap's and less biopsies!

His biopsy came back with a level 1 rejection, which means his doses of Prednisone will decrease again!  However, his blood tests came back with him having a low white blood cell count.  This is probably due to high doses of one of his transplant meds, so they are decreasing the amount Greg takes in hopes that it will restore his WBCs.  On Thursday he has to go back to the hospital for another blood test to check to see if there's any improvement in his WBCs.  If not, he'll return to the hospital a few hours after the test to get a shot of a medication that should stimulate WBC production.  We're unsure what they will do if his WBC count doesn't improve at that point, but we are hopeful that it will.

His low WBC count is likely the cause of why he keeps getting sick over and over again.  It's nice to finally have an answer!  Greg's transplant coordinator is hoping that his stomach aches will go away in the next few days with the decrease in medication, and that once his WBC count improves, his immune system will be working better and will keep him healthier.  As they increase his WBC count there is an increased likelihood that his healthier immune system will try to fight his new heart - so please pray that he doesn't experience rejection.

We are in the process of setting up Greg's first cardiac rehab appointment so that should begin in the next week or two.  It's an exciting, but intimidating, step back toward normalcy.

So that's a really long and detailed update, but now you are officially caught up!  As Greg faces a lot of new steps in his recovery, we both are grateful for your continued prayers - thank you!