written on October 27, 2014
Friday (October 24) was day 7 post-transplant.
It started out pretty decent. Unfortunately me and my parents had to get up at 6 am to be at clinic by 6:30. I had a few moments where I needed to lie down before we left (a little shortness of breath, a little too much bending over) and we got there about 7.
Transplant Clinic is the follow-up care after you’ve gone through a transplant surgery (mostly kidney, but some pancreas and liver transplants too). It’s a first-come, first-serve free-for-all where they do your lab work, wait for the results, then you get to meet with your follow-up care team (nurses, nephrologists, surgeons).
By the time we got there, I was handed number 22. We got there at 7 am and 21 people were already there, waiting ahead of me. How crazy is that? Guess we need to get there earlier next time!
Around 7:45 they called me in, took my blood, had me pee in a cup and then took my vitals. My blood pressure was a little high – 143/92, but not too bad. I wasn’t allowed to take any medication until after the blood draw, so I went ahead and took my pills. I was feeling tired, but okay. The sitting up was starting to bother me (I had mostly been laying down since the surgery).
Around 9:30 I decided to finally eat something (I can’t eat for at least an hour after I take my anti-rejection medications, which I took around 8:20). My dad had picked up an old-fashioned donut from Starbucks, which tasted pretty good. I inhaled it – I was crazy hungry! Then about 10 am I started feeling a little short of breath. My wife called to see how it was going. I told her we were still waiting. It could still be another couple of hours at that point, I wasn’t sure. I kept feeling the shortness of breath coming on, and with it, this stitch in my right side that wouldn’t go away (my incision is on the right side, so trying to stretch my ribcage on the right side to get rid of the stitch was causing my incision to hurt). We hurried off the phone. I sat down, trying to get comfortable and hoping I’d be able to catch my breath. No such luck.
I went up to the desk and asked if I could see a nurse. In a few minutes one walked me into the back and asked what was wrong. I asked if there was a bed I could lie down on for a few minutes – I told her I was feeling short of breath. She immediately sat me down and put the oxygen thing on my finger, to check the oxygen level of my blood. The first time she tested it, it started around 79 and then slowly started climbing. She didn’t think that was right, so she reset the machine and tried again. This time it started at 69 and slowly started climbing. The oxygen level in my blood was 69% - really low. She was surprised I wasn’t turning blue. She went to talk to the doctor, to ask what they should do with me. And the answer was – send me to ER.
By this point it’s about 10:45 and I heard them just call number 17 (I was number 22). So part of me wanted to just stay put and get through clinic and then go to the ER. Nope. They called the transportation guy to take me over there (the transplant center is in a new building about a half mile down the street from Cedars main campus). He told my parents to just follow him and he wheeled me into his van. Then we went to the ER.
Now this is the 5th time I’ve been to the ER since May. Granted, the first four times I went to Encino Hospital (it’s only a few miles from where we live) and the waiting time at that ER is almost non-existent (like 10 minutes). I hoped because I was a recent transplant patient they would just rush me in and treat me. No such luck.
We were in the waiting room for almost an hour. They took my vitals about 20 minutes after we got there and my blood oxygen level was at 98%, my BP was normal, temperature fine. My shortness of breath was gone at this point – I was breathing normally again.
As we were waiting, I started getting hungry again. My mom had brought some Sara Lee blueberry bagels along, just in case any of us needed a little snack. Not the healthiest option, I know, but it was there. So I inhaled one of those. And a few minutes later, my shortness of breath came back. This time it only lasted about 20 or 30 minutes, all while I’m waiting in the waiting room. By the time they finally had a bed ready for me, everything was normal again.
It took a while for a doctor to show up and ask how I was doing. I told her I was feeling fine, but explained to her the morning’s happenings. I told her I thought it might have something to do with what I had eaten – maybe a sugar intolerance? Or gluten? (I’ve never had a problem with either of those things before, but they seemed to be the only common link between the two foods.) She ignored my suggestion. She ordered a chest x-ray, which went pretty fast. When I came back from that, the nurse came in and inserted an IV (this one hurt… a lot. The 27 pounds I’ve lost since the surgery leaves me with absolutely zero padding in my arms – so when that needle goes in my vein, I feel it). He drew some blood – to do the same blood tests I just had done that morning. Sigh.
Then we waited.
Cedars ER only allows one visitor at a time with a patient, so my mom and dad kept switching off between my room and the waiting room. I felt really bad for both of them. And to make it bad for me, my phone had died on the way to the ER, so I had no way of contacting my wife or reading a book or playing a game or anything. Laying in a bed in the ER, with absolutely nothing to do. Not my first idea of fun.
Finally around 3:30, the doctor came in to say the x-ray looked normal. Next thing I know two of the doctors from the transplant clinic showed up to talk to me about my lab results. Creatinine was 1.3 in the morning, but in the afternoon it was now 1.1. My potassium had been 5.4 in the morning, but now it was 5.7 (which everyone was worried about – too high, they kept saying (5.5 or below is normal), but I kept telling them I had been living with a potassium level over 9 for several months before my kidneys failed. 5.7 wasn’t a problem for me. They said everything else looked great – no infection, no high blood pressure, no record that I had blood oxygen problems (the nurse never entered those numbers into my chart). They ordered a couple more tests for me and said to come to clinic on Monday morning. Okay, great.
The two tests they ordered were a VQ scan of my lungs (ventilation profusion – a nuclear scan where they inject radioactive particles into your lungs – one with a ventilator, to check airflow in the lungs, and one through an IV, to check blood flow (they wanted to rule out a pulmonary embolism (blood clot))). Then it was time for an ultrasound of my legs, to check for clots there. Both tests came back normal – no clots.
We finally walked out of there just after 8:45, made it home by 9. And I was famished. I hadn’t eaten anything all day – I was afraid the shortness of breath would return. I hadn’t been drinking water because every time I asked a nurse for it, it either wouldn’t show up or it would take like 45 minutes to arrive. I also hadn’t been doing much walking. All the progress I had made with alleviating the pain when I peed from Thursday was gone. Now it was hurting to pee again.
I went home and ate pizza (yummy!) and drank two bottles of water. Did a little walking. Went to bed and slept over 8 hours that night (in three shifts – still have to get up and pee in the night!).
Saturday morning I was feeling so much better. A little mad at Cedars again, but getting over it. Managed to sneak out and visit my wife for a little while Saturday afternoon (some friends took the kids for an overnight at their house – nice!).
After all those hours in the ER, I had nothing to show for it. No new and exciting piece of information. Nothing to shed light on what had happened to me, or why. And I learned that the ER at Cedars is a horrible emergency room - because I wasn’t in a life-threatening situation and they really didn’t pay attention to me at all. There were times when I really felt like the nurses were going out of their way to avoid me.
Let me tell you – if you don’t want to deal with me because I’m not a high priority patient, that’s fine. Then send me on my way. I don’t need to have a battery of tests run to tell me what I already know – which is that I’m fine. And since not one of the nurses or doctors wanted to even pay attention to my suggestion that it could be food-related, I found the entire day to be a total waste of time. For everyone involved.
In the last ten days I’ve had a lot of great interactions with some of the most amazing doctors and nurses and surgeons I’ve ever met. But not one of them works in the ER at Cedars. That disappoints me. I was hoping the standard of care would be the same throughout the entire hospital. But the ER is a different animal, cut off from the rest of the hospital, dealing with trauma and personal injuries that can’t wait.
So the next time I have to go to the ER (and I seriously hope there isn’t a next time), I’ll make sure to NOT go to Cedars ER.
At least I’m not having shortness of breath any longer. And let me tell you what a breath of relief that is.