I have been extremely busy taking care of Greg since he came home on Friday and this is my first chance to write an update! Greg is doing OK. He had a great first night and day home on Friday night and Saturday but pushed it too hard and ended up completely exhausted by Saturday evening.
From Sunday through this morning Greg has experienced increased swelling (concentrated in his legs and abdomen), difficulty breathing, pain, fatigue, and incision pain/redness/oozing. Last night was a really tough night for Greg and by this morning it was clear that we needed to call the transplant team and tell them what was going on.
This whole experience has been such a steep learning curve for both of us - we were pretty accustomed to dealing with the heart failure related symptoms he had and monitoring them to make sure he didn't go downhill quickly without the doctors being aware. But this is completely different. Not only are we looking for very different symptoms but we're also adjusting to a new heart that has changed the way a lot of his body systems and other organs function. We're also having to keep track of all the signs of rejection and infection which require immediate medical attention- but can be subtle and hard to recognize. All in all we've both felt very confused this week at home and unsure of what we're doing and how he's doing.
Last night Greg and I were discussing how different this experience is from his sternotomy last year (when they opened up his chest with the plan of removing the pericardium around his heart but closed him up instead, realizing he needed a transplant not the removal of his pericardium). Last year's recovery was hard - this is so much harder. He is significantly weaker, having MUCH more pain, unable to go from sitting to standing without help, having trouble breathing, etc. But on top of all that he's also dealing with the side effects of his medications - and is very confused, sees and hears things that aren't there, doesn't know where he is when he wakes up, and a bunch of other unpleasant, unsettling things. These are classic side effects of his medications, but knowing that doesn't make them any easier to deal with. Please pray for him as the mental confusion is in many ways even harder to deal with than the pain.
This morning the transplant doctors decided Greg needed to come to the hospital to be seen by them. Wow, was that an ordeal. He had to tackle going down the stairs for the first time, go out into the cold which made it really hard to breathe, and then get into a wheelchair at the hospital - after which a volunteer promptly dropped him because she wasn't properly trained on helping to lift someone out of a wheelchair. Greg had terrible pain and a big scare during that ordeal but thankfully we were already in the transplant clinic and the wonderful women who work at the front desk came running over and helped us get him back in the wheelchair.
After a lot of blood work and a long exam and discussion with the doctors, we felt much better about everything. They changed his medications so that he's on diuretics to get rid of the 20+ lbs of fluid in his legs and abdomen, on a new pain-management schedule to help control the pain so that he's better able to move, cough, and breathe, and on additional doses of his transplant meds to help fight off an infection that he has. They checked his incision and don't think that it is infected - though it is possible that an infection is in the beginning stages. They did some blood work to check for infection - we don't have the results yet. They also did an xray to check his lungs and make sure they don't have too much fluid on them (we're waiting for results), and they examined his chest for instability in the sternum.
The doctors considered checking Greg into a rehabilitation facility but Greg asked to be sent home instead and to see if the new medications will enable him to recuperate enough to stay out of rehab. Assuming his test results come back okay, tomorrow a nurse and the occupational therapist will be coming to check on him and then we'll be back at the hospital on Thursday morning for Greg's weekly transplant clinic appointment. The nurse will likely come back on Thursday and Friday as well, and on Friday Greg is getting another chest x-ray - this time for his follow-up appointment with the surgeon who did his transplant. With the home nursing, PT, and OT, Greg has very demanding days and the extra trip to the hospital and next Monday's surgeon visit are probably going to wear him out. Please pray for strength, healing, and any infections or complications to stay away.
In the midst of all of this, we have been so blessed by our wonderful friends - they have been helping out since our families both went back home last week. I would be totally stuck without them and am so grateful for their help! Greg is not at a point where I can leave him alone for more than a walk to the mailbox, so they are filling prescriptions, picking up groceries, etc. - what a blessing! It is comforting to know that I'm not alone and that there are many people around who are willing to help in any way possible.
Getting Greg back home today would have been impossible without help - and I am grateful for friends who have servants' hearts!! When we got back from the hospital this afternoon there was a large package at our door and it turned out to be a care package from a wonderful group of ladies in my home town. This care package made Greg's day. After watching him experience so much pain, frustration, and disappointment over the past few days and especially this morning, it was great to see a little bit of a spark in his eyes. We both felt unbelievably loved and supported - and as I sit here typing this I'm once again struck by how much all of you care about us. Thank you for being a part of all of the ups and downs he's going through. There will surely be many more of them to come but we are blessed to have a new heart, great medical care, and your love and support.
Thanks so much for praying for us,