Last night, I used this phase while talking to my dad to replace the rollercoaster. The up and down swings are way more minimal but we definitely are moving forward yet remain in a circle. That’s not to say that any of it is bad; we have waited this long, we can continue waiting until everything is optimal to go home. I did choose not to return to work full time which resulted in losing my job however I have peace with the decision. It is still an open door with the company in the future plus I feel so much relief without the looming pressure of returning to a salary life away from my family more than 50 hours a week. Also, I have also been working on a Master’s degree this entire time (past two years) so I can sit for a board certification (for the job I have already been doing for 13 years); my graduation will be delayed until the end of summer as I have some clinical time at the coroner’s office I still need to complete and that is alright. It is an experience I am looking forward to as I have worked in surgical pathology these 15 years and now will gain vital knowledge of forensic pathology (which is what my undergraduate degree actually was). I am looking forward to this opportunity when the time is right…

But this update was not meant to be about me. Alan was finally moved out of ICU late Saturday, for the first time in over 4 months. The merry-go-round:  Alan’s heart and kidneys are still pretty much at odds, or at least medical decisions for one seem to hinder the other. His heart – it is strong and great without any signs of rejection as of his 3rd biopsy this week. His underlying heart rate is still only in the 60s and they want him to be above 80 before they send him home. Transplanted hearts are more rigid so a lower rate actually makes them work harder per beat which can be detrimental over time. They have been using an external pacemaker to keep his heart up 110, then 100, and now 80. This obviously needs to be eliminated to go home but when they decrease his rate, his blood pressure also decreases. Other than heart rate, cardiac team is exceptionally happy and talking about possible discharge next week (either transplant house to get our barings or actually home.)    His kidney – the biopsy last week shows no rejection but it does show acute damage to the tubules (a part of the kidney responsible for electrolyte/fluid balance). We are told this is totally normal in kidneys post transplant and usually takes 4-6 weeks to heal but in some patients has taken 6 months. It is livable and managed with dialysis until it heals. The healing is markedly promoted though by, wait for it, a high heart rate and blood pressure. Ideally kidney would be happy with a blood pressure around 140/100 and his recent blood pressures as they have lowered his pace rate are more like 90/55. On top of that, his fluid is just pooring back on him. The main facet of being in stepdown is the type of dialysis they can use. Alan tolerated it Saturday before moving here as a test but when they took him on Monday, his blood pressure did not allow them to take much fluid off at all. They have added meds to increase both his heart rate and blood pressure but have not seen significant changes yet. The kidney team wanted to move Alan back to ICU as of yesterday because of dialysis choices. Trying diuretic meds and dialysis again today before they make any decisions.

So now I hope you see Merry-go-round. It feels like every step to push the heart forward is setting his kidney and fluid back so it very much feels cyclical. We also get mixed signals in other departments. The awesome part is Alan took a 500 foot walk yesterday without any assistance and physical therapy signed off that Alan can go straight home without rehab; then 4 hours later a different nurse comes in with an order for 12 weeks of outpatient rehab. Just a lot of mixed signals. Again, these conflicting events barely feel like anything in the scheme of things. We know we are so close and things are in our favor. Alan is open to having Reese up here while in step-down or transplant house, just not ICU or while he feels crumby, so we know we are close to getting our girl back too. We can wait. We have waited. We don’t want to rush anything to get home a few days earlier, we just want it right and for Alan to feel good while doing it. His kidney incision pain and fluid levels are still uncomfortable and we want him tip top before they talk about sending us out of here. Could be days, could be weeks.