Friday, July 22, 2011

A long overdue update

Hi everyone,

I have been meaning to write an update for weeks now but to be honest I've enjoyed the "normal" feeling of not writing updates.  In so many ways life feels more normal for us than it has in a very long time - we are both back doing ministry with students (including leading a Mason Cru summer Bible study which we love), we visited our families in Pennsylvania, and we even have been able to spend some time relaxing with dear friends.  They are all such normal things and yet it had been such a long time since we'd been able to enjoy them!  We also celebrated our 4th Anniversary on June 24th and we had a lot to celebrate!  Just being able to be together for another anniversary is a miracle and we are so thankful to God for giving Greg a new heart. 

Being busy with ministry and not finding the time to sit down to write a blog post has felt great - yet we appreciate your prayers and support so much and we do want to keep you more up to date on how Greg is doing than we have recently.

Overall Greg has been doing really well!  Greg's last heart biopsy came back as a zero on the rejection scale - he's gone almost 8 months without any rejection!  Praise God!  Today was his best "performance" at rehab yet - he spent nearly 40 minutes on cardio machines- but there are still ups and downs.  In fact Tuesday's rehab was his worst "performance" yet in rehab - only being able to spend around 15 minutes on cardio.  He only has a few more sessions of cardiac rehab left and then he'll be transitioning to keeping up the same exercise routine on his own at home.  Thankfully our apartment complex has a small workout facility with most of the machines he's accustomed to and some light weights.  We plan to do the workouts together 3x a week so that he's not alone during them.

Greg has had some issues with medication side effects recently.  A new medication that the doctors added (a blood pressure medication that they've found protects transplanted hearts from pre-mature arterial disease - which is a common problem) was making him extremely fatigued, causing a lot of back and shoulder pain, and giving him headaches.  Thankfully he was able to stop the medication and has had some relief from the symptoms.  He's still feeling very worn out though and has decided to scale back on his non-rehab activities for a while in order to give his body some much needed rest.  In fact he's asleep right now as I type this which is very atypical for him these days.

Another issue is that he seems to be putting on a lot of extra fluid again.  It has been a very frustrating process because the rehab facility and the transplant doctors are not in agreement about what desis causing the weight-gain.  Throughout Greg's transplant journey doctors have misdiagnosed his fluid retention as regular weight gain due to the fact that Greg tends to retain water around his organs instead of in his ankles and feet like most doctors assume.  We've had some pretty bad experiences with this misdiagnosis in the past so its been tough emotionally feeling like its happening again.  Thankfully, Greg was allowed to take one diuretic pill early this week and he dropped 7lbs so it seems pretty clear that there is some water retention happening.  Greg has an appointment at the clinic on Monday and we plan on discussing this at length with the doctor and coordinator.  There is a possibility that they will be running some more extensive tests to look for fluid in places less obvious than his ankles - which we're really hoping they will do.  We'd appreciate your prayers that they would be willing to look into the problem more carefully and that they'd find out what is causing the weight gain and not just make some guesses based on what they think "should" be happening.

I think that about sums up what's been going on lately.  I will try to do a better job keeping you up to date as we (hopefully) get some results! 


No comments:

Post a Comment