I spent a few days in the hospital recently. June 16 I was having so many problems with my oxygen levels that getting a glass of water downstairs walking 25 feet had me dropping. I had jumped also to 6 liters of oxygen for sleeping and showering & was really upset.
Something before had kind of felt off but I didn’t feel sick except for a day here or there. I just chalked it up to heat, humidity & bad breathing. There were days it was so bad I couldn’t even really talk much at all.
Yet Thursday had me scared. I went over to my ER. My lung doctor happened to be on call that night. She called my transplant doctor & they both agreed I should be immediately transferred. That “immediate” transfer took until about midnight to find a bed (they had been trying since at least 5 or 6 pm.) I wound up in an ambulance at 12:30 and then rested & settled in about 3 or 3:30AM at my center. I honestly didn’t know what was going to happen.
I knew someone would round in the morning regardless so I got about 2 hours sleep before the pokes and prods & all set in. They prefer to isolate pre transplant patients too but the bed shortage was such I did have a roommate. The light was on all night and that was story unto itself. I’ve had worse, but I was relieved when they did move me because then I could close the door and the curtain & actually managed to get more rest than what I would have.
I talked to my doctor on Friday. He was going on vacation but just wanted me to know and be sure I was settled before he left. I appreciated that. He asked me a few questions & I answered them, including asking how I felt about staying in the hospital until transplant & doing another heart cath if it came down to it. Some of my symptoms could definitely be related to developing pulmonary hypertension so if some of the other tests showed it or they couldn’t clearly rule it out, he wanted me to be prepared. I cringed & recounted my experience during my evaluation testing but I said I would do what we needed to do.
The first doctor covering & rounding & I got off on the wrong foot because she kept harping on why I didn’t have the CT that my local ER had given me. Now I joke about being a courier & my own EHR but this time I was so sick & fighting to breathe it was the last thing on my mind to ask for the films. She asked if anyone could bring them, this was after I told her, “Look it’s 60 plus miles, I’m not going to ask someone to go down & back for that. You’ll have to send for them.”
She knew about LAM (my lung disease) said she had LAM patients but I’m not sure if she ever dealt with TSC and I couldn’t get a word in edgewise to ask. I also tried to tell her a few other things that applied specifically to me, not in how to tell her how to do her job but it’s because it’s useful background. Sometimes she appeared to listen, other times she seemed a bit dismissive. I knew she had looked at my case because the nurses told me, but there was a huge disconnect.
Once I started responding to a steroid & antibiotic, she seemed to stop listening entirely. She started talking discharge, but I was pressing her for a plan and the possibility of doing rehab down there. She seemed to entirely veto the idea and poo poo it. In addition, I felt bad that I was doing better because she seemed to think that I was doing too well to need any services. I tried to tell her that before this whole mess unraveled my exercise tolerance and stamina had diminished greatly in just a few weeks. I also didn’t feel safe exercising in a place if they didn’t have oxygen there. I started getting frustrated and feeling helpless.
Here they were talking discharge and I didn’t have a plan and had no clue what was wrong. Eventually I got out of her they thought I had a respiratory infection, inflammation, & asthma flare that all contributed to this.
I was frustrated and angry because they cancelled half the tests I should have had due to equipment failures. She also seemed to like to tell me how my insurance was already questioning why I was down here. That didn’t help put me at ease.
My doctor the last two days was better & eventually before I went home he did review all my results with me and helped me get some kind of plan to get me through to my upcoming visit. But by that time too I was exhausted. I couldn’t even recover because I kept having to push and harp on things. I know my doctor was concerned about pulmonary hypertension before he left & wanted me tested….what did my test show? Would I need further testing? How does this affect my score? Can I at least talk with PT or someone here about the outpatient program here so they can send me info? What happens after the steroid taper if my breathing turns crappy again?
The last day was salvaged & I was glad I went but I felt a bit let down. It felt like what little care I received I could have received locally. I went from the possibility of thinking I might be in the hospital until transplant to not being able to be out of their hair fast enough.
All I wanted was help, a plan & some answers. At points I felt like I was being punished for fighting so hard & trying to remain as healthy and strong as I could while I wait.
I have to say that really hurt. Yet I know things would have been handled very differently if my doc hadn’t been on vacation. I don’t blame him for that. He’s always there & the fact that he called before he left just to check on me was enough to get me through.
I also know my local lung doc wanted me down there because she figured they could do more. She just made sure I didn’t have something that was immediate like a blood clot or lung collapse that would need to be stabilized beforehand. I know when I update her she’ll be less than pleased but I know she’ll give me some good guidance on some rehab choices & where I’m better off building up for the rest of the wait.
They adjusted my score some, but it didn’t move that much. Yet, I know my doc once he’s back will be pushing for me regardless & I hope those pushes yield something soon.