Yesterday and today (so far) have been fairly emotional for me. Yesterday, a pastor and a member of a church of which we don't belong came to visit and pray with us. To drive to New Orleans for people they don't know is such an expression of God's love and I am humbled and overwhelmed!
When Danny had the LVAD, we had direct contact (direct phone numbers) to the doctors and nurses on call. Both Danny and I were in the clinic on a regular basis and the staff was very involved with how he was doing and feeling. They also placed a lot of emphasis on the role of the caregiver and therefore included me in all discussions and visits. A large emphasis was put in the area of social work because the pressure on an LVAD patient and his/her caregiver is enormous. The social workers were incredible and both Danny and I truly appreciated the wonderful conversations we had. She cared about how Danny was doing, but also cared about me. We were spoiled...The team of doctors is the same now that Danny has had a transplant, but the nurses and coordinators are different ladies. Danny was discharged from the hospital (to the Brent House Hotel connected to Ochsner) on 12/31. If I'm not mistaken, he has been seen in the clinic one time since then…and that's when we called because fluid was squirting our of his chest incision. The nurse that is assigned to Danny's case while he's here in New Orleans does call him at least every couple of days--and sometimes daily to check on him. He does routine blood work in the lab at Ochsner, which the doctors and pharmacists follow closely and then the nurse calls to change medicines as needed.(which is often) We were told before being discharged about specific problems to call immediately for--to include if he feels anything that's not the same or just feels weird…He body can (and will according to them) reject at any point and any tiny change can indicate rejection. The nurses told me to be very aware of how he is acting/feeling because I will probably notice changes that he doesn't that may be an indicator of rejection.
Again, totally spoiled. I've only met the nurse the one time he was in clinic. Danny has had pitting edema in his ankles and feet for a couple of days now and his blood pressure has been running higher than it should be. These are issues that would have been caught already when he had the LVAD because they spoke with both of us often and returned calls immediately The truth is that the patient doesn't always give completely accurate information for whatever reason…which is why it's important to have the care giver present. Danny didn't call about the edema two days ago because even though he knew I was concerned, he wasn't. I had a minor melt down last night because his legs and feet were close to the same width from his knees to his toes--which is a LOT of fluid retention for Danny…he's a skinny man!! In his effort to "fix" my "meltdown", he paged the doctor on call (who was happy to hear from him.) She wasn't pleased with his edema and told him to call the clinic first thing this morning. He has left two messages from the nurse so far, and it's 11:31 and she still hasn't called back. I'm not feeling happy! Honestly, if it is so vital that we stay within 30 minutes of Ochsner for 6-8 weeks after transplant, why aren't we able to talk to the nurse when we feel there is a problem?
If I'm honest, I'm feeling sad because I'm not intentionally included in his health care…by that I mean the nurse just talks to him on the phone (on her terms apparently) and doesn't see him in clinic when I would be with him. I"m sure that's because he is doing wonderfully (overall) and they don't need to see him. So I feel like maybe I'm feeling sorry for myself because I'm not included…shame on those LVAD people for making us both feel so special!!! :) Anyway, it's hard and I know it seems selfish, unimportant, etc… Also, LVAD's are meant to be a bridge to transplant meaning the idea is to only have an LVAD for months-a couple of years at most while waiting for transplant. A transplanted heart has a life span of longer than that so it makes sense that the level and type of care we receive would not be as intense and "special" as it was for an LVAD. It would be super hard for the staff to give that kind of attention to patients and their caregiver for a long term thing. Still…I'm sad!
While I'm typing this, the nurse has called and Danny has asked many good questions. I'm excited for him to get off the phone and fill me in with the details.
Swollen legs and ankles: He is okay as long as in the morning when he wakes up the swelling is down some. If he wakes up and they are just as swollen, it's a negative and dangerous indicator that one of the immunosuppressants is not as a correct dosage. If the swelling persists over night, it indicates that blood vessels are bursting in his legs. But…that's not happening, so he's okay.
She said to remember that he's been through two major surgeries in the last four months and his body is all out of whack. The fluid will figure out were it's supposed to be at some point.
Blood pressure: The high BP is a result of a medicine that they were changing the doses for frequently…it takes a while to determine the best dose for each patient. According to blood work, they feel like they've found the best dose for Danny and therefore his BP should stabilize over the next couple of weeks. They may go ahead and give him a short term BP medicine to help him feel better quickly…they haven't decided yet.
Going home plan: Depending on the biopsy next Tuesday and labs, we may be able to go home next week! They won't have all results back in until Thursday probably, so I wouldn't think he could leave New Orleans until Thursday or Friday at the earliest. Again…that is completely dependent on good results!! yaaaaaayy and scaaaary!! We know from experience that it's hard to leave the safety and comfort of being in the hospital.
So, my concerns have been addressed and I feel better about that. And, it's okay (and good) that I have to lean on the Lord for my comfort when I'm scared and lonely--who needs nurses and social workers!!!!