The Day I Didn’t Get a Blood Transfusion, Part Three

… in which I get an official, if brief, reprieve

Last time on The Day I Didn’t Get a Blood Transfusion, our hero changed her mind a bunch of times; annoyed Dr. Flatline; and went for a wheelchair ride during which she told Fabulous about a movie she hadn’t seen (20 Feet from Stardom), but which her friend Ann said was really good.

III.  Granted a Stay of Transfusion

Wednesday brought a 9am call from Flatline with news from the lab. To his surprise, my hematocrit was 33 – 3 points above “transfusion trigger.” He said he’d thought by my appearance that it was in the low-to-mid-20s. Also, the Vitamin K feasting was having an effect. Last Friday at the Coumadin Clinic, my INR was 2.6; now, thanks to leafy green goodness, it was 1.8. Well done, Buddhist! The doctor handled my previous insolence gracefully. With both of these bits of good news, Flatline officially granted me temporary clemency. He would talk to me again Friday.

I knew it was likely that I was going to end up getting a transfusion. I still hadn’t stopped bleeding and was getting weaker every day. Conceptually, the prospect kinda weirded me out, though. Having another person’s blood pumped into my veins seemed decidedly icky. I did have cadaver bone (!) placed in my jaw when I had that dreadful dental implant procedure a year or two ago, but I just try not to think about it.

On Thursday, I emailed my friend Erica, who I knew had a transfusion earlier in the year. Erica is amazing. She’s one of those people who had a major health issue (cancer), yet managed the whole time she was in treatment to be upbeat, witty, and downright inspirational. She taught Zumba and Body Pump classes while she was undergoing chemotherapy and radiation, for chrissakes. I think it has surprised no one that Erica has kicked cancer’s ass twice now. I wish I had her optimism and resiliency.

I asked Erica what getting a transfusion was like. She highly recommended it. She said I wouldn’t believe how much better I’d feel after having one. It made sense. Those fantastic, healthy red blood cells would carry oxygen to all my ailing parts. I imagined it would make it so every time I stood or tried to walk, I would no longer feel like I was in a headachey funhouse with slanty floors that moved. A transfusion started sounding pretty good.

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The Day I Didn’t Get a Blood Transfusion, Part Four

… in which I make another ingenius medical decision

IV. Stay of Transfusion Suspended

When Flatline called Friday, I didn’t even put up a fuss about going into the hospital. I had continued losing blood without any sign of slowing down all week and I was tired of feeling like a toy whose battery was almost out of power. Climbing the 7 stairs from my living room to the bathroom took so much energy, I needed a nap afterward. I ended up just staying on the second level of the house all the time so I didn’t have to face the stairs or take very many steps if I needed the bathroom, which I never did since all the moisture in my body was gone. I was listless and exhausted and I just wasn’t thinking right. I couldn’t follow conversations well and felt really dense and stupid.

Flatline explained the process. I would go to the hospital ER and they would have to put me on a saline drip for somewhere around 8 hours so I would be hydrated well enough to do another hematocrit test to confirm the need for a transfusion. With my symptoms, he felt certain my hematocrit was well under the transfusion trigger number of 30. Once the test was done, I’d get a few units of blood and start feeling better in no time. He said I’d probably have to spend the night because the hydration would take all day so it would be late when the transfusion started, but assured me my family could survive without me for one night.

Naturally, I didn’t go to the hospital on Friday. The Buddhist and I talked about it and seeing as it was already coming up on midday, I came up with an ingenius plan. Not going to the hospital earlier in the week in favor of stuffing my gob with kale chips had paid off, right? I was able to get enough Vitamin K in my body to reduce my INR from its blood thinner inflated number all the way down to a normal, healthy person level. Why not do the same thing with getting hydrated?

I figured I had a good 18 or 19 hours until morning. If I made camp in the bedroom pillow fort, stocked with gallons of Gatorade, I could surely hydrate myself to the same level I would get in 8 hours on intravenous saline. All without the hassle and expense of another overnight hospital stay! What could possibly go wrong? The Buddhist bought several gallons of Gatorade and I set my sights on hydration by morning.

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The Day I Didn’t Get a Blood Transfusion, Part Five

… in which I finally go to the hospital for the transfusion

V. Get Thee to a Hospital

We’d intended to get to the hospital early on Saturday. Early for us, anyway – maybe 7:00am. Predictably, if you know us, we actually arrived closer to 8:30 or 9:00am. We pulled up to the ER entrance and The Buddhist got me a wheelchair. I was happy to not have to attempt walking. We let the disinterested desk staff know why we were there and were told to wait. The waiting room was not busy, so I figured we’d be called pretty soon. An hour and a quarter later, I finally heard my name.

The Buddhist wheeled me up to the triage nook. The little office had a door too narrow for the wheelchair to fit through. Two nurses watched with no apparent concern as he struggled to get me from the wheelchair to the exam chair without propelling the former down the hallway into bystanders. I told them my story and had all my vitals taken. One of the nurses’ eyebrows raised when she saw my blood pressure and heard how long I had been losing blood, but she was not the one who was actually recording my data. That nurse performed her duties perfunctorily, not bothering to hide her complete indifference to my situation.

We were sent back to wait some more and were eventually invited to the ER exam rooms about an hour later. Nurse Perky introduced herself and got me hooked up to an IV. It didn’t take long to realize that my brilliant Gatorade plan had accomplished almost nothing. I was still going to have to be on a saline drip until I seemed hydrated enough to proceed. How disappointing.

By this time, it was nearly noon and The Buddhist and I were starving. We’d thought once I got settled, he could pop out to the Subway that was advertised in the waiting room and grab us a sandwich to share. Those plans were dashed when Nurse Perky noticed me drinking water from a bottle I’d brought and told me I was not allowed any food or drink. I whinged a bit and she clarified that she had told me what she was required to tell me; what I did when she was out of the room was my business. Thankfully, The Buddhist had some energy bars in his backpack and started sneaking me bites whenever we were alone. With my blood-deprived brain, I found it completely hilarious that he was smuggling Clif Bar contraband to me. It was hard to not giggle so loudly that someone would come in and bust us for the flagrant rule-breaking.

Nurse Perky did a number of tests on my blood and hooked me up to the heart monitor and the automatic blood pressure reader. The machine would beep every 30 minutes and the cuff, which remained on my right bicep all the time, would get tighter and tighter then report my blood pressure to the vitals readout over my bed. The cuff squeezed so tightly that in a short time I had a constellation of bruises encircling my arm.

Despite the IV, which was supposed to be helping regulate my blood pressure and get me hydrated enough to test and transfuse, my BP was extremely low. I asked to be unhooked from things for a moment so I could use the bathroom just down the hall from my exam room. Request denied. By that time, my BP was down to 67/41; Nurse Perky told me she didn’t know how I was even conscious (normal is in the neighborhood of 120/80). I was forbidden to stand up or walk altogether. They placed a line in my other arm and started a second saline IV. With two saline drips running simultaneously, I was hopeful that we’d be getting to the transfusion part soon.

Hours passed. I was so glad The Buddhist was there, keeping me company and keeping my spirits up. If I started getting grumpy or sad, I was as easily distracted as a kid. There was a TV in the room that ran nonstop video footage of baby animals in nature. Whenever The Buddhist would say something like “Ooh, look at those baby goats,” I knew what he was doing but nonetheless looked and was instantly diverted into a smiling, calm appreciation for their cute little chins.

Nurse Perky had me do a test where you have your blood pressure taken when you are laying down, sitting up, and standing up. At one point, Dr. Too Busy for Your Boring Bleeding to Death came in and looked at me for a minute. It was a very brief encounter. The only thing I really remember about it is that he had his face about an inch away from mine when looking at my eyes and that he obviously had curry for lunch. Several more hours passed.

The Buddhist and I looked at baby goats and baby horses, autumn leaves and statuesque mountains. A phlebotomist came and filled a surprisingly large number of vials with my blood, which she then left on the counter. It puzzled me since the whole reason I was there was that I didn’t have enough blood in my body to function properly.

I attempted several times to negotiate being allowed to walk, with an entourage, the 15 feet to the bathroom. Eventually, putting to use all the skills I learned in law school and 7 years of legal practice, I prevailed. Who knew that persuading someone to let you pee in private could be such a notable personal victory?

The ER had a shift change at 7:00pm. Nurse Perky was replaced by Nurse Weary. She took some of the vials of blood and gave them to someone for more tests. I didn’t see much of her again until suddenly, around 8:30pm, she came in and handed me a clipboard with a bunch of papers on it. She told me to sign to authorize the blood transfusion. I replied that I’d need a couple minutes to read it first. When she left, I gave the clipboard to The Buddhist. There was no way I was going to be able to focus enough to read; he read it aloud to me.

After reciting a litany of blood-borne diseases and my chances of contracting them if I accepted the transfusion, there was a signature line. Above the signature line were the words, “Having spoken with a doctor who has answered all my questions about blood transfusions and my other treatment options, I consent to the transfusion procedure.” The Buddhist and I looked at each other quizzically. I hadn’t spoken to a doctor about anything, certainly not transfusions or my other treatment options.

He and I are very particular about signing acknowledgments. Much to our children’s dismay, at the start of every school year when they bring home the student handbooks and science lab guidelines, etc. for signature, we actually insist on reviewing the documents with them – even though they do not change, at all, year to year. Sadly for the kids, the papers state above the parent signature line, “I have reviewed this document with my child.” A bit dogmatic, I suppose, but we have a strict “no lying, even when it’s super convenient or gets you what you want” policy. If we don’t follow it, how can we expect them to?

I have, on occasion, changed the above-the-signature-line statements on forms from school. Last year my son had a weekly form that required signature, but the affirmation was impossible to achieve. It wanted me to certify that my son had read a chapter of a book that they keep at school and the kids can’t take home. I had no way of knowing if that was true or not, so I would change the statement to things I could actually verify.

“I understand my son will receive a zero on his homework if I do not sign below.”

“We had pasta with vegetarian sausage and broccoli for dinner.”

“This paper is green.”

No one ever commented, to me or to my son, about my revisions.

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The Day I Didn’t Get a Blood Transfusion, Part Six

… in which I get angry with an asshat in a labcoat

VI. It’s Called INFORMED Consent

When Nurse Weary returned a few minutes later, I told her I needed to speak with the doctor before I could sign anything. I had questions about the procedure. While we were waiting, I typed our questions into my phone so I wouldn’t forget anything. After losing blood for 11 days and having nothing to eat or drink for 24 hours except a contraband Clif Bar and a few sips of water, my brain was as fuzzy as one of those baby goat’s chins.

My questions were brief and straightforward:

1. What is my hematocrit level?
2. What is my hemoglobin level?
3. How many units of blood will I be given?
4. How long with the procedure take?
5. How soon will I feel better?
6. What is the alternative treatment?

Dr. Too Busy for Your Boring Bleeding to Death and Nurse Weary came into the exam room. Dr. Busy instantly reached out his hand for the clipboard. I told him I hadn’t signed yet as I had questions. He sighed like an eye-rolling teenager. I asked my first 2 questions about the status of my blood. He didn’t know the answers; he hadn’t looked at my blood test results. He left the room and returned a few minutes later. My hematocrit was 26 (normal is 38-46 and 30 is, according to Dr. Flatline – and the whole of the interwebs, “transfusion trigger.”) My hemoglobin was 8 (normal is 12-16). Okay, so these numbers certainly seemed to indicate the transfusion Dr. Flatline had been pushing for all week was a good idea.

I opened my mouth to start to ask my other questions and Busy testily cut me off, saying, “If it were me, I wouldn’t do it.”

Surely, I was not getting his meaning right. I asked him to clarify. “Excuse me?”

“If it were me, I’d refuse the transfusion”

Wait, what?

I asked him why he would refuse the treatment my cardiologist had been advising for days. He said transfusions have risks of blood-borne disease. Simple as that. He’d decline. I asked what the alternate treatment plan was. “Iron,” he replied, his irritation with me clearly growing. Hmm, no one had mentioned that iron could do the trick. I asked how long the iron IV would take. He shook his head. He didn’t mean an IV or any kind of hospital procedure. He meant iron tablets. From the vitamin aisle of Walgreen’s. Huh.

“How long would it take for my red blood count to get better if I went with the iron option?”

“A week.”

“And with the transfusion?”

“Immediately.” Right. That made sense.

I started to ask my other questions and Busy went from being cross to being straight-up rude.

“Listen, I have other patients,” he noted sharply. “This is the ER. It’s not like in a private doctor’s office where you can sit and ask questions all day.” He moved toward the door.

Rather shocked and offended, I told him I understood and asked him to come back to answer the rest of my questions after he’d checked on his other patients. I could wait. Apparently, acting like he was going to leave was just a ruse to try to get me to give up and sign. Great, not only did he have a lousy bedside manner, he was a bully.

He stepped back in and impatiently told me to go ahead. I asked another question. He answered, then asked if I was going to sign. He was really starting to infuriate me. In what for me is the functional equivalent of shouting (I virtually never actually raise my voice), I spat, “How can you call it informed consent if you won’t answer my questions!?!”

I asked my remaining questions, which he begrudgingly answered. He also informed me that I “hadn’t lost that much blood” and implied I was being a bit of a pansy about the whole thing. I reminded him that my hematocrit was 26 and he shrugged it off, saying the number was probably wrong anyway since I was diluting my blood with the saline all day. Okay, dude. Whatever. Call me next time you’ve been losing a cup and a half of blood daily for upwards of 2 weeks and we’ll talk.

He pushed me to sign one more time. I told him I didn’t have any more questions, but needed to talk to my husband and weigh the options. He stormed out, closing the door behind him. I said aloud to the closed door, “I am going to say such mean things about you in my blog!”

And so I have.

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The Day I Didn’t Get a Blood Transfusion, Conclusion

… in which I make the wrong choice

VII. A Bad Decision… and Some Attempted Robbery

The Buddhist and I talked about the options. Flatline really seemed to want me to get a transfusion and the test results seemed to recommend it, as well – at least as I understood them. But how do you get a procedure that the doctor who would be administering it advises against? Having heard his opposition, it felt almost impossible to consent.

Nurse Weary came back in and apologized about Dr. Busy being such a jerk. She asked if I’d made a decision yet. I asked if she had an opinion on the matter. She said she wouldn’t get the transfusion, then proceeded to tell me a very long and tragic tale of woe about her own medical challenges. After she’d finished her story, I told her I was going to just go with the iron pills. Even as I said it, I knew it was the wrong decision. I just couldn’t bring myself to go with the transfusion after the attending physician – and the nurse – said they wouldn’t do it if they were me.

Weary told Busy my decision and he came in and told me he thought I made the right choice. He said he’d order me a dose of iron and then I could be discharged. He never actually did order the iron, but I was ready to get the hell out of there anyway. My entire day had been spent being prepared for a transfusion I wasn’t going to get and I was leaving the hospital, still in a wheelchair, still bleeding uncontrollably, not one step closer to feeling better. A wasted day for which I would later be charged a couple thousand dollars. Great.

While getting ready to go, I noticed that they didn’t use all that blood they took from me earlier in the day. There was still a little bottle of it laying on the counter. Naturally, I took it. I mean it’s mine right? I started looking around for anything else that might be interesting.

Being in a thieving mood, I started frantically looking for those little slipper socks they give you when you get checked in. My friend Erica, who also frequents hospitals, is in the habit of stealing little slipper socks. I desperately wanted to add a pair to her collection. Sadly there were no slipper socks to be found. Every unlocked cabinet in the entire room had no slipper socks. There was one locked cabinet that was lost to me, but why would they lock up slipper socks, anyway? Perhaps Erica had come to this ER before? I briefly considered liberating a gown for her, but Erica is a fashionable girl. Everyone knows hospital gown chic is so 2004.

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The Day I Didn’t Get a Blood Transfusion, Epilogue

I had a pre-existing appointment set with Flatline for the following Friday. I’d been taking iron supplements for a week by the time I saw him, but I still required help walking and got dizzy and lightheaded a lot. Flatline was not amused that I didn’t end up getting the transfusion. He questioned me about the doctor who advised against it. He also did some tests; my vitals were better than when I was in the ER, but I still had a long way to go. My blood pressure had raised to 90/70. My hematocrit, from 26 to 28. Flatline estimated it would be another 6-8 weeks until my blood was back to normal. My bone marrow was clearly on the task of making more red blood cells, but it wasn’t an instant relief like, say, a transfusion would have been.

It’s now been almost 3 months since the ER visit. I eventually did stop bleeding; we still don’t know exactly what happened there – I’m going to be seeing a specialist about that soon. My follow up with Flatline is next week, but I can tell my blood is much, much healthier. Generally, I feel about the same as I did pre-setback. I still am not as strong as I was pre-heart attack; I still get exhausted from mild exertion; and I still struggle with forgetfulness, maintaining focus and remembering words for everyday things.

But I can totally stand up without falling down. Like a boss.