Well, was back in the hospital on Monday, and they kept me for a while. They did blood work and then more blood work and then more blood work. My hemoglobin was dropping and I was laughing at them, telling them if they’d quit taking blood from me, I might actually see my hemoglobin increase! One of the doctors apparently doesn’t have a sense of humor, ’cause they tried to explain to me how that wasn’t the reason and all, but it’s like–joking, people! Just joking.

Usually, I’m quite eager to get out of the hospital. I am usually chomping to get home as fast as possible. This time, however, I was questioning why they were sending me home. My hemoglobin was in the 7s and it was still dropping the day they released me. I was still bleeding too, which means my hemoglobin will continue to drop–the anemia is pretty bad… and they were sending me home. They hadn’t figured out why I was bleeding yet. They hadn’t even really confirmed where I was bleeding from and yet they were sending me home. I was still weak. I was still shaky. I was still dizzy. I was still soooo tired. And they are sending me home.

WHY NO BLOOD?

I’m mostly really confused about why they weren’t doing a blood transfusion. My old PCP had told me that they would transfuse if I ever got below 10. So when I tested at 9.1, I assumed I’d be getting a transfusion. Then, a couple of months later, when I was 9.1, they said, “Oh, no, we don’t transfuse until you’re in the 8s.” Okay, so go home, and wait and retest in a month. Retested on Friday, and my doc (my new PCP, whom I really like a lot) and she’s concerned when I test at 9 again. She says to come back on Monday and retest and lets see if I’m dropping. Come back on Monday, and I test at 8.7. She sends me to the ER. In fact, the nurse at the access center told me to take an ambulance. He didn’t want me going in someone’s car. He was concerned about my hemoglobin being so low and me passing out on the way to the ER.

So I get to the ER, and they are acting like, “Why are you here?”

I tell them my PCP sent me, explain the hemoglobin stuff, and they take me to a room and I wait. They ask for a urine sample. Uhm, okay. Not sure what they has to do with my hemoglobin dropping, but okay. Turns out, they were testing me to see if I’m pregnant. Are you fucking kidding me? Did they even bother to read my chart? I swear if I weren’t covered by Medicare, I’d be fighting paying for that test. There was absolutely zero reason to do that test. They didn’t even TALK to me before they did the urine test. No one saw me, nothing–they put me in a room and said, “We need a urine sample before you change…” and that was it.

So we’re in the room waiting and the doc comes in and he’s acting really disinterested. He asks all the ordinary questions but he looks really bored and he obviously isn’t paying really close attention to anything I say, because I have to repeat myself a few times on some things too.

Then he asks me, “What are you on the oxygen for?”

I said, “Pulmonary hypertension.”

He said, “I just read through your chart and I don’t see pulmonary hypertension anywhere in there.”

I said, “Well, it’s like the primary thing I’m dealing with–CTEPH?” And then I explained to him about the PEs and stuff.

He shook his head like he didn’t believe me. He asked, “What are they doing to treat the pulmonary hypertension?”

I said, “Uhm, the oxygen…?” Like, uh, wasn’t that how this conversation started? I then told him about my meds and stuff, and then told him to consult with pulmonology. See, here’s the thing–ALL my medical information is with the same entity. They are different departments of the same place–UTMB (University of Texas Medical Branch) They have an electronic charting system–it’s ALL in there.

I see pulmonology at least once per month on a stable month and about once per week when I’m not stable. My diagnosis and all my pulmonary function tests are in there. Just four months ago, I had a fourth V/Q scan that confirmed the CTEPH and it is the PRIMARY condition I’m being treated for–but he says he can’t see it anywhere in my chart?

I don’t understand that.

So I have a hemoglobin issue because of the pulmonary hypertension. My regular hemoglobin oxygen saturation at 20-minutes room are is 88. Anything below 92 can cause organ damage, so the goal is to keep the oxygen level above 90 as much as possible. That’s why I’m on oxygen. I take medication that slows my heart rate, because when I get more active, the body demands higher oxygen/blood saturation, and with the CTEPH, the pressure of the blocked pulmonary artery and such pushes blood back on the heart (congestive heart failure) and causes the heart to work harder and beat faster than it should. Slow the heart rate, and the breathing is a little easier. Slow the breathing and the heart rate is a little easier. So I take meds that helps the heart rate and that makes it a bit easier to breathe when I’m active.

But since the anemia has worsened–I’m having trouble breathing when I exert myself. Just walking to the bathroom and back is de-satting me to the high 70s, when it’s usually the high 80s. My heart rate, which is usually about 110 when I walk a little ways is now running about 160 when I walk to the bathroom and back. This has severely limited my ability to DO anything. Around the house, I usually walk on my own–outside the house, I use a wheelchair. Recently, even just sitting in the wheelchair to go out to a doc appointment, my heart rate is tachy at 130 or so. That’s not normal for me.

The only thing that’s changed is my anemia has worsened.

The hospital released me with a hemoglobin of 7.6…

I was told they would transfuse at 10. So I get to 10 and they say, no, 9. then I get to 9 and they say, no, 8. Then I get to 8 and they say, no, LOW 7s. Now I’m at mid-7s, and I’m weak, shaky, dizzy, tachycardia, exhausted/tired, headache, blurred vision, foggy/fuzzy vision, difficulty concentrating, I’m still bleeding, and they can’t tell me why and they won’t do anything to fix it.

They didn’t give me blood, which I’ve been told by more than one person would make me feel better almost immediately. They gave me iron, but they then told me I probably will need 2-3 more iron infusions before I have enough iron stores for it to help me feel any better and it will take several months for me to start making more hemoglobin enough to make a difference in how I feel.

But they won’t give me any blood, which will make me feel better right away.

I don’t understand?

My PT/INR was super high, so giving me blood would have actually reduced my PT/INR. So my hemoglobin would get better, my iron would increase some, my PT/INR would improve, and then if I kept bleeding between now and the appointment on Friday to follow up, I would have a little ‘extra’ to lose–everything pointed to giving me blood.

Why would they not give me blood? If anyone out there is a doc or a nurse and you know why they are refusing to give me blood… I’d really like to know. The only explanation they gave me when I asked was, and I’m quoting here: “There are issues with blood, like antibodies and stuff, that we just want to avoid.”

They wouldn’t tell me anything else.

So here I lie in bed, dizzy, weak, shaky… tired. So very, very tired, and a little scared, ’cause I still don’t know why I’m bleeding or how my hemoglobin is doing and I’ve got to make it through two more days until I go to the doc to find out if the iron is helping any, and I don’t FEEL good.

That’s what I told the doctor before they released me too—I said, “Everyone keeps talking about numbers and blood work and appointments, but nobody is concerned about doing anything to make me FEEL better!”

But these last two hospital stays ruined my streak. I had over a year without an overnight hospital stay. I was hoping that was a sign of good things to come, so this sort of feels like a set back.

Le sigh….

But I’m alive and still kicking. I want to think everyone who prayed, sent well wishes, shared FB statuses and sent me love and friendship. Reading your comments when I’m on my Kindle at the hospital is something that helps me get through all the crap there. I love you all and I need you all and I appreciate you all so much. For that, i am so grateful to have you as my friends. (HUGS TO ALL)

Love and stuff,

Michy