This is Greg's mom, writing from the hospital library after several days of frustrating attempts to gain wifi access with the laptop. You might want to get a cup of tea before starting to read this. It's been a long few days.
I just today read the last sent note from my husband on Thursday. You're all aware that Greg's chest was opened and closed when they viewed the FULL overall status of his heart. Many of my "medical friends" have asked or at least wondered (as we did too) WHY did they not know the status of his heart before opening his chest? We asked that same question and were told that although the biopsy performed during the recent catheterization showed healthy heart muscle, it was representative of only that specific area of muscle. The doctor said that it's like looking at a HUGE wall through a keyhole and that the overall picture can be much different than the rest of the heart. Although they had done significant amounts of pre-surgery testing (including echocardiograms and wall motions, etc), his condition had substantially deteriorated in the 10-14 days just prior to surgery and he had developed left heart failure in addition to the right heart failure that he had going on. My husband tells me that I get too "clinical" in these notes and that perhaps you don't understand what I'm saying, but some of you have real questions and I'm trying to answer them.
In a more basic statement, his condition moved from one of problems just with filling of the heart to one with contraction problems as well and in a very dramatic, fast way. They were EXTREMELY concerned about his situation in the operating room. Since that time, they have been managing some medications/ diuretics that have taken a lot of excess fluid out of his system.
He is currently in the CTSDU (cardiothoracic surgical step down unit). He is disconnected from all attachments, other than an IV for drug administration. God has been so gracious as to allow him to make remarkable steps in recovery from this particular surgery. His wound is healing well, he walked in the hall yesterday and even took a shower (while sitting of course). He is eating - not a lot but he is eating. His cardiac rhythms have been under control and all vitals signs are OK for now.
He received all this news from the surgeon on Thursday morning and was devastated, as we expected him to be. He wept and repeatedly apologized to Elise and us for causing us all this "trouble". It broke our hearts. Once again, God was kind and helped him to quickly recover from the news and by the time the transplant team arrived later in the day to discuss it all, he readily admitted that he has been feeling so very awful for months, and that he just can't go on living like this. He agreed to proceed with the process and hopes to receive a transplant ASAP.
Since then, there has been a flurry of evaluations from every discipline on the team who will support him (and Elise and our family) through the process. They have been exceptionally wonderful and the constant prayer for clinical excellence, care, kindness and compassion has been answered over and over again. We actually found out last night that their care coordinator, Carolyn, is a Christian and was able to explain to the team exactly what Greg's and Elise's campus ministry jobs are. Another answer to prayer that we would intersect with Christians who would be able to walk with Greg and all of us through this process. Carolyn is actually the "right hand" to the head of the transplant team, Dr. Desai. God is clearly meeting our needs.
Yesterday was a really tough, emotional day for us. A surprise visit from a couple who are some of Greg and Elise's closest friends from PSU made us all cry. They should not have been able to get through the "visitor checkpoint", since only immediate family is allowed in, but they did, and it was a real blessing for Greg and Elise. They are not allowed, nor are they able to handle any visitors at this emotionally, but Greg had just said to Elise the night before that he wished he could see Jeremiah and Brianna and they magically appeared. Another answer to prayer. Watching him hugging Jeremiah and crying brought back to us the real "human side" of all this, after an intense period of "managing" things clinically and although it was hard, I think it was good for us all to shed some tears.
Later in the day, Carolyn (the pre-transplant coordinator), came back to deliver the "nuts and bolts news" of what is planned for Greg's care. This is where you all come in (and anyone you'd like to share this email with that's praying for us).
Greg will be presented to the transplant review board from this hospital this Thursday. His case will be presented to a group consisting of surgeons, pulmonologists, cardiologists, electrophysiologists, nutritionists, psychiatrists, social workers, financial/insurance specialists, etc. They will request that he be listed as a 1B exception on the transplant list (I'll explain what that means in a minute). If they approve, I think his case will also be presented to a larger regional board and he will be "listed" on the waiting list for a new heart. The things that could delay that listing would be that they'd require further diagnostic tests, that he receive certain treatment "trials" or that his insurance delays things. We need prayers that NONE of those things happen and that he is accepted as a 1B exception.
Transplant recipients are classified as either:
Level 2 - for various reasons, not actually ready to accept a heart right now if it became available
Level 1B - being treated/ managed with oral medications (fairly stable)
Level 1A- being treated/ managed with IV medications, either in the hospital or at home (fairly stable) or being treated with an LVAD (left ventricular assist device). They don't feel optimistic about using IV drugs with Greg because those increase the chance of dangerous irregular heart rhythms and with his history, that's not a good thing. Since both sides of his heart are failing, the L VAD isn't going to be enough to help him.
Overall, I think Greg and Elise are doing extremely well under the circumstances. Your prayers and the care for us and our families has been overwhelming - thank you.
Many of you have been asking what you can DO to help us. I'd like to be forward to enough to share some real concerns and possible suggestions.
Emotional/ prayer support - PLEASE KEEP PRAYING! God is answering your prayers through all this and we will try to be faithful in sharing answers as they come.
If you feel like sending a card to Greg and Elise, I know they would really enjoy receiving your notes of encouragement. US mail is better since they feel badly not answering email. We're not sure how long he will be here, but I imagine they would forward their mail home at discharge.
Many of you desire to send them a monetary donation to help with their medical bills and that would be a huge blessing. However, I need to talk to them to determine how that should be accomplished within the guidelines of their ministry.
For those of you on their monthly support team, be assured that they are SO cognizant of the "job" that you've put them in Fairfax to do and they are continuing to do it even through this current situation. Students at George Mason gathered two nights this week to pray for Greg and Elise and they sent a huge banner to the hospital for them with all their notes and wishes. They are also witnessing through their walk this week and have had opportunities to talk to staff members about their faith. We believe that God has opened a whole new area of ministry for them in one of the most "vulnerable" places a person could find themselves.
If anyone reading this email is interested in joining their monthly support team (for any amount), that would be a HUGE blessing to them in these hard economic times, let alone dealing with their increased medical spending. We would be happy to put you in direct contact with them if you'd like to respond to this email address.
I'm finally done! And your tea is either gone or cold. Thank you for taking the time and caring to read this. In closing, we would like to ask you to pray for saving faith for the individual who is currently carrying Greg's new heart as they live the final days of their lives. We would also pray that their earthly relationships are healthy and sweet and we pray for the family who will lose them.
We love and appreciate you all more than you know. Greg's parents