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So I Went, And So It Goes

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So after my last post about how I needed to go to the ER, I did, in fact, go. Believe it or not! No, seriously, ask Lynn. She’ll tell you. I was a good girl. It was an interesting experiencing too. After all the hell UTMB put me through, to see how a real hospital is supposed to handle ER services was interesting. I have this experience with hospitals back home that was not stellar but wasn’t bad, as far as hospital ERs go, and I’ve been to a few ERs in Dallas when I lived there, mostly with my son when he was tiny, and they always treat you differently with a baby, so it’s harder to judge. But I realize now I should have known something was wrong with UTMB.

First, there were the three bad procedures, two of them failed. (PICC line insertion and right-heart cath–remember these for later. They’re important)

Then there were the ER visits where they simply looked at each other and said, “We don’t know what else to do for you while you’re throwing clots as pulmonary embolisms, because you’re already anticoagulated (I wasn’t, but that was just one of their other failure), have an IVC filter in, and so you’re fine–go home.” I wasn’t fine. I wouldn’t have gone into the ER if I was ‘fine’. They literally sent me home three times with active clots, just for me to turn around again and throw more clots. This continued until someone finally realized I have something called Warfarin Failure Syndrome. Glad they figured it out before my lungs filled up with clots completely.

Then there was the time my doctor AT UTMB sent me to the ER with orders–ORDERS, mind you–to give me a blood transfusion. I was bleeding from my mouth, nose, belly button and urinary tract, and my PT/INR was super high (4.8 if any of you know the numbers–you can understand better), and my hemoglobin was around 7.6. They refused to give me a transfusion. Instead, gave me a bag of iron and sent me home less than 12 hours later. I felt miserable still, and was still bleeding from all over. My doctor was upset, so she went around them and sent me to the infusion center. I felt nearly immediately better after leaving there and getting that transfusion!

These are just some of the minor things that might not have been so minor, that happened to me when I went to the ER at UTMB-things I haven’t really talked about, because of the whole trauma that was UTMB for me. There WERE good things there-some of the support staff was amazing, the buildings at the clinic was gorgeous and the location was super convenient, just five minutes away from our house. None of that is worth the trauma I experienced though. None of that is worth my life.

Now, enter Methodist Hospital…

I go to the ER. They greet us the moment we walk in and let us know they’ll be right with us. There’s one person standing in a line ahead of us in a small, very clean and cute waiting room. It’s dim, but not dark, really a nice environment for a waiting room where people might not feel well. No harsh lighting. It smells clean and not clinical. It’s got some color to it. I’m feeling confident. After waiting a short while, she calls us up to the computer area and gets my info from me, finds me in the computer, so I don’t need to give her any other information. She takes a picture of me and has me sit back in the small waiting room.

After a while, a tech comes to take my blood pressure (it was super high–but I was super nervous too), and then they escort us to a second waiting room. This one has recliners and a big screen HD television with cable, some regular chairs, a coffee pot, fresh water, and then a doctor who would come by and check on people every now and then to make sure everyone was still okay while waiting. Then around 7pm or so, they came by and took orders for sandwiches for everyone. We got chicken salad or turkey sandwiches, with a bag of baby carrots, a whole pear, and some juice. It was nice, actually. The techs brought out warm blankets for patients who wanted one. I had a cup of coffee–probably shouldn’t have, with the BP being high, but if I keeled over, I figured I’d get in the back faster that way.

Finally, one nurse came to get me and they were going to do an EKG. This is a really fast test, takes just a few minutes to hook up, sort of like a snapshot, then they take the leads off and you’re done. When he said Lynn couldn’t come with me and I hesitated, he didn’t really balk at all, just said, ‘Come on…” to both of us, and then warned the room was small. At UTMB, we’d have had to have fought tooth and nail to get them to let her in a test room with me. What a relief!

Then it was back to the waiting room again. I found this interesting. In a way, the waiting room WAS more comfortable than an exam room, and I could move around, go to the bathroom, eat, watch TV, etc… so some of the patients were called to get blood work done, then come back to the waiting room. I’ve never seen a hospital do it like this, but I kind of like it.

They finally called me back to an exam room not long after this, and while I was hooked up to the machines, she recorded my blood pressure and it was really, really high now. Then they had to do all sorts of blood work on me and had trouble sticking me straight out of the gate. I don’t blame them for that, because, really, *I* am the hard stick and I’ve had really good lab techs with lots of experience miss me before. I’ve been home from the hospital for a week now, and I have bruises dark and deep all over my arms. I look like someone beat me. The doctor came in, quiet and gentle speaking, asked a bunch of questions, and then asked who my doctor was. He left and then came back. He said, “Okay, well, looks like we’re going to be keeping you here overnight at least for observation.”

And ‘overnight for observation’ turned into 9 days and an ongoing quest for a cardiac MRI….

But I’m getting ahead of myself.

While in the hospital, the director of the lung center came to see me. She was a tall, statuesque and gorgeous older woman with a dynamic personality and a wit and sharpness to her that I admire. She’s blunt. Not rude. Not abrupt even. Just blunt. I respect that, most of the time (and you’ll see why I preface it with ‘most of the time’ before I go on)…she breezes in, like a woman who never stops moving, never sits still for long, and even if her body isn’t doing something, you can just see that her brain is going miles per minute. She instantly impresses me.

She tells me what her thoughts are. She tells me what she wants to do. I tell her why I can’t do it. She nods and agrees and then says, “Okay, you need to get another left and right heart cath.”

I said, “Okay, I can do that.”

She seemed surprised I’d agreed so easily, but what she might not know is that Methodist did so much to heal me from the terror caused by UTMB, that I knew the doctors here would be good. I just knew the procedure would go fine. And I knew they could be done together at the same time, so it would be like getting one procedure. I could do it. I was tough.

She breezed out the door, but not before letting us know she would be gone the weekend but her partner would be stopping by to see me in the meantime. He did. He was a quiet mine, soft spoken, but there was a fire in his eyes when he talked about his work. He loves his job. He feels passionate about healing people and working in particular with lung patients. I don’t know his story. I don’t know why lungs interest him. Maybe he has a parent who died from a lung disease? Maybe something else, I don’t know, but there is such a fire in his eyes about what he does that I instantly like and trust this doctor to take my life into his hands. He is eager to learn more about my history. He answers my questions and tells me WHY he wants to do things instead of just telling me what he’s going to do.

I like this doctor. I want him to be MY pulmonologist.

Cardiac transplant team comes in. I love this team. They work together doing some serious-ass surgeries. I mean, come on: heart/lung transplants? That’s crazy! I mean, think about trying to change your radiator and oil pan on your car while the car is running without letting the car die, and don’t make a mess while doing it. That’s what these guys do, only with people! This is an amazing team, and they have seen me both times I’ve come to Methodist. They will be doing my heart caths, and they just wanted to come by and introduce themselves–though two of them remember me from last time and two of them are new to me–and answer any questions I had about the procedures. This is a complete 180 from UTMB, who told me I was getting an IVC filter and then 20 minutes later came to get me for it. I had no time to research or read or even understand what an IVC filter was. They got pissed at me for telling them I would make my decision later, with one of the nurses even telling me I could die if I waited. You know, it wasn’t even what she said, but rather, how she said it that made it nasty.

The procedure went so well. Now, remember when I told you I had two failed procedures at UTMB that I would come back to? This is one of them. Really, it’s two, but UTMB  was only trying to do one. The right heart cath. This is where a doctor makes a small incision or puncture into the neck or chest area, finds a vein, and then inserts a catheter into that vein to thread a sensor through and into the heart, where that sensor can take a look at what’s going on in there, measure the pressures and refill of the heart, and more. It gives them a LOT of information. Well, UTMB was never able to do the right heart cath. To this day, we still don’t really understand why or what that doctor (and I use that term loosely here) did to me.

For example, this is a picture of my neck and chest area when I finished with the procedure at Methodist:

chestneck1And this was the day after they did it! Not only did he get it in the first time, but the time I had it done before they did too, with no problems.

And they were able to complete the test and get all the measurements they needed, and I was on a minimal amount of medication for the entire thing, so I was able to talk and remember everything.

Start to finish, from getting me from my room to recovery, was less than an hour total–I spent over an hour just on the table at UTMB.

 

 

By contrast let me show you what happened at UTMB, with a procedure that failed:

20141001_134237 665489

These bruises showed up within moments of being wheeled out of the operating room. My mother was the one who pointed them out to me. Her husband pointed them out to the nurse on my floor, who said that it was not normal.

No one could tell me why the bruising was there. No one could tell me what went wrong in the procedure. He had to be blowing through my veins in my chest, I guess? I don’t know. There were also multiple puncture wounds on my neck.

And then, to top it all off, the doctor BLAMED ME for the procedure failing, saying I was too tense and it made it too hard to do anything.

Whatever. I was just as tense, if not moreso, at Methodist because of the past stuff, and they had no problems. Twice! They had no problems, twice!

Something wasn’t right there…

Oh, and we talked about the PICC line. Yeah, they tried with 9 punctures at UTMB to do a PICC on me. I have the video and the images of that one too to prove it, and they were unable to advance the line. Then they hit a nerve and I had to make them stop. It was just awful. Never did get the PICC inserted. Later when we picked up the medical reports, it falsely said they had only tried 3 times to insert the PICC. I have proof otherwise. I don’t know what to do about that.

Went to get the PICC done at Methodist and they got it first try, no problems. They also don’t do it in an OR like UTMB does, but in a small curtained area, and they let Lynn stay in the room and hold my hand as long as she put a mask and head cover on. That always makes it easier for me, because she talks to me and keeps me calmer. She will tell me what they are doing to me when I can’t see–they think it’s odd I like to know, but I’m one of those quirky people who does better when I’m aware of what’s going on.

So I think Methodist has done a lot to heal me… little steps that make it better each time I have a new experience. The nurses are the best. The support staff are really professional and kind and some of them are great fun! (We had gurney races and went up to the fancy rich people’s floor–shhh, don’t tell). I’m actually a lot of fun in the hospital. No sense being boring and bored at the same time. The nurses and tech usually love our room–and we welcome them in with open arms, sometimes literally. This is appreciated at Methodist. We were looked at strangely at UTMB. Every test that goes well. Every procedure that improves me. Every good nurse, good doctor, and good meal (okay, fair meal, but still better than UTMB)… and I heal a little bit from the damage that was done.

Until a tall statuesque intelligent doctor I respect breezes into my room again a few days later and says something that triggers my PTSD and puts me right back lying on that operating procedure table again, trembling in fear.

But I’ll tell you that tomorrow.

For tonight, I leave you with this:

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