Thursday, July 8, 2010

Back Home


Thank you so much for all of your prayers and the encouraging words that you sent us!  We arrived back home around 6pm yesterday (Wednesday) evening and were so glad to be back.  Greg was dealing with some pain at the site of the catheter (they inserted it in his neck this time) especially when moving around and was exhausted so we took it easy and went to bed early last night.

Greg ended up receiving seven bags of IV potassium supplements during his stay which increased the level of potassium in his blood work to a much safer level.  They removed the PICC line (an IV that travels from the upper arm to the superior vena cava so that potent medications are distributed in the blood quickly) through which they were administering the potassium which is great because there was a chance he'd come home with it in and have restricted activity. 

The heart catheterization was very informative.  It showed that Greg's pressures are ok and that they have not gotten significantly worse since April (his last heart cath.).  Greg's heart output was low, but the doctors think it is due to one of the booster diuretics he is taking.  The booster is also probably the cause of such significant potassium loss.  With this new information the doctors made changes to Greg's diuretics that will hopefully increase cardiac output and maintain safe potassium levels.  We go to the hospital on Friday morning for a blood test to make sure Greg's potassium level is staying high.

While in the hospital we were given the results of the specialized echocardiogram that was done at Johns Hopkins last month.  According to the echo, Greg has right ventricular dysplasia that is consistent with what doctors see in people with ARVD (arrhythmogenic right ventricular dysplasia).  This doesn't change much about the course of treatment for Greg but its one more piece in the puzzle of determining whether or not Greg does in fact have ARVD.  We may be going up to Johns Hopkins again to have a cardiac MRI performed on Greg.  In the past this has been impossible because of Greg's defibrillator/pacemaker but Hopkins has found a way to safely perform MRI's on patients with cardiac implants.  Not only would this help in the diagnoses of ARVD but it would also help determine how much Greg's heart failure is progressing.

Overall, the doctors feel that Greg is fairly stable right now.  His heart failure has slowly gotten worse since it was discovered, but the treatment regimen he is on seems to be preventing is from accelerating dangerously.  They will continue to watch him very closely to make sure they know exactly how fast its progressing and do everything they can to slow it down.  We're really thankful that the doctors found and treated Greg's low potassium before he developed any serious ventricular arrhythmias.

Last night we were both struck by how we had gone into "emergency mode" and just got through everything that happened without really processing it.  We are definitely learning to take these types of hospital stays in stride- since they are part of waiting for a transplant, and we'll probably have many more of them- which is helpful and shows a lot of God's grace in our lives.  But as we were reflecting on it last night we were feeling the strain of living a life where you can be called into the hospital at a moments notice for a couple of pretty uncomfortable procedures.  And we were really fortunate because if Greg had been doing worse than he was, he would have had to stay indefinitely.  I guess what I'm trying to say is that the hospital stay went as well as we could have hoped, but it still took a toll on us emotionally.  Which is part of the reason we are so thankful for your prayers!  We continue to struggle in dealing with waiting for a transplant in so many ways and having your prayers, support, encouragement, etc. is an incredible blessing that really does carry us through.  Thank you for caring and for being there for us.  We appreciate you.

Greg and Elise

Wednesday, July 7, 2010

Greg is in the hospital


Yesterday was a pretty crazy day for Greg.  We arrived at the hospital around 9am for his bi-weekly heart transplant clinic appointment.  Every time Greg goes they draw blood to check a lot of numbers (such as electrolytes, liver function, etc.) so see how he's really doing (just looking at him or examining him from the outside doesn't give very clear information).  Greg also needed to have two samples of blood taken for various medical trials that he's agreed to participate in- they will hopefully help future heart failure patients to experience less organ-rejection and to diagnose ARVD easier.  Because of hospital protocols, it took a few extra hours to get all the blood drawn and we finished barely in time to grab something to eat at the heart healthy cafe upstairs before going to the transplant support group.

The support group was very informative but overwhelming.  The topic was medications and doctors visits post-transplant, and included a lot of information on living with immuno-suppression.  We have lots to remember and process from that time.
As we got home and were unlocking the door to our apartment, we received a phone call from the heart clinic.  They had the numbers back from Greg's blood test and his potassium level was dangerously low.  Because low potassium can contribute to dangerous arrhythmia's (and Greg's ventricular tachycardia has been more frequent lately) they wanted to admit him to the hospital overnight so that he could have IV potassium.  The doctors also decided it was best to have a heart catheterization performed on Wednesday (today).  Greg was due to have one some time this month, and they decided that while he was in the hospital they should go ahead with it.  The heart cath. is the best way to measure his heart function (how much blood is going out and in, how much pressure is building up in his lungs, etc.) and to determine how his heart failure has progressed since April (which is when he had his last heart cath.).

Its now Wednesday morning and Greg has had 4 IV bags of Potassium so far and will receive 2 more this morning.  Greg won't be allowed to go home until the potassium level in his blood is safe, and we're really hoping that these 6 doses will be enough.  The heart catheterization is scheduled for noon. 

Please pray for Greg.  Because he's had the procedure so many times, he has become less sensitive to some of the anesthesia they use during the cath. and is therefore fully awake during the procedure.  While it isn't very painful, it is scary and extremely uncomfortable for him.  Please pray that they'll be able to play the Christian music station for him (he says that's always calming when they can find it on the radio- he just focuses on the songs during the procedure and it helps him relax) and that the surgeon would do a good, quick, and safe job.  Please also pray for Greg to get some good rest while we're here.  He feels stir-crazy and really wishes that we were home where he could do his laps, swim in the pool to cool off, etc. but if he can sleep he might be able to catch up on some much needed rest!

Another thing that happened over the past few days is that we were rear-ended while driving on I-70E (a major road that connects to the DC beltway).  Our car has a bunch of scrapes on the bumper but no other visible problems.  However this happened before (our first week after moving to Northern Virginia!) and there was substantial damage that wasn't visible from the outside.  I haven't had a chance to call insurance yet but we did get a police report on the accident so we know that we'll be covered in case things are worse than they look.  Please pray that I (Elise) would be able to balance the things I need to do and prioritize them well.  Its easy to run myself into the ground when Greg's in the hospital and I'm trying to figure out a way to balance being with and taking care of him, checking on our cat, etc.  Also please pray for "Christy" (not her real name) who rear ended us.  She's going through a difficult time right now and is a single mother who is having a hard time making ends meet.  Our hearts really broke for her and I've been thinking and praying for her a lot since the accident.

Thanks for your continued prayers on our behalf.  We'll let you know what we find out from the heart catheterization as soon as we're able.

With love and gratitude,
Greg and Elise