Date: January 5, 2012
January 2nd was the day that my gastroenterologist and I chose to review my progress. We had made a deal a few weeks ago – that if we agreed that the herbs were working at this point, then I would continue with them, but if I wanted to continue and he disagreed about the success of the herbs, then I would transfer care to Mass General Hospital (MGH) due to his discomfort with treating a patient who insists upon a method that hasn’t been medically proven.
Despite all of the improvements I spoke about in my last post, it wasn’t enough evidence for him. When he came in my hospital room two days ago, he began by saying that he’d like to do a hospital-to-hospital transfer to MGH, under the care of a doctor he recommended over there and who would be open to seeing me.
Although we had made an agreement several weeks ago, when it came down to the actual decision to go to MGH, I wasn’t okay with it. Here at Children’s, I have my own room, hence my own bathroom, and there’s a mini-fridge. None of this would be true at another hospital; I would only get my own room if I was contagious or had a serious psychological or medical issue. Stress about having someone else sharing the room isn’t considered a real concern. The mini-fridge is especially crucial for me since I’m bringing in my own food rather than ordering from the kitchen. And no hospital kitchen has millet, pomegranate seeds and pom juice, persimmons, and organic chicken and eggs. Also, the care wouldn’t be as personal; the nurse to patient ratio is higher here, and I know pretty much all the nurses and they definitely all know me, whether they’ve had me as a patient or have just heard about me.
And the thing is, they can’t make me leave Children’s. That would only be possible if I didn’t need any medical attention, and I’m still receiving IV nutrition. I felt somewhat pressured to leave, but in the end, after much thought and discussion with my family and my psychologist here, I decided I would stay, against the doctors’ recommendation. I was told multiple times by multiple doctors that they are uncomfortable with me continuing with the herbs, they’re stressed from this going on for weeks, and they want me to get another opinion at MGH. However, I know that MGH isn’t going to have any different ideas about what’s best for me. Maybe they would recommend a drug, but since I’m improving with herbs, I have no desire to try a new drug. All I want right now is the IV nutrition, and I’m getting that here. Besides, transferring would be a pain, and staying there would be stressful for me. And since I feel that I know what’s best for me, I am okay with the doctors feeling uncomfortable and stressed. I won’t let guilt about how I’m affecting them affect my wellness. It may be tense with them, but I’d rather have a little tension than transfer hospitals, meet a new set of doctors, and live in a room that doesn’t meet my needs.
Except for the stress of the doctors, everything is getting better – not just in the toilet but in the bloodwork too. Hematocrit is up, platelets are down, albumin is stable, electrolytes are stable, iron is up, and the CRP is down. The CRP, a marker of inflammation, is at 1.02, and normal is below 0.5, and yet a few weeks ago it was above 13. The last time it was this low was months ago, before the flare started.
Yet the doctors still say, “Yes, there’s some improvement, but you’re still very inflamed.” My doctor actually said that yes, there’s some improvement, but we don’t know if it’s from the herbs, the prednisone, or the PN (IV nutrition). And yet, he started tapering me off the prednisone weeks ago since he said he didn’t think it was making a difference, and as I’ve tapered, I’ve gotten better. And when asked whether the PN affects the inflammation in the colon, he said no, that it’s more for whole-body health. Which leaves credit for the improvement to…herbal medicine. This is out of their realm of knowledge and education, however, so I understand their doubt. It’s just really frustrating because I feel like they are being contradicting. I may have gone against the agreement my doctor and I made weeks ago about my transfer to MGH, but I feel that he went against the agreement in another way – at that time he had also said that if I was seeing 4 poops a day and the blood was gone, and if the bloodwork also indicated lower inflammation, then this would be enough for him to comfortably let me keep going with the herbs. Yet lately, I’ve seen 5 stools a day, there’s almost no blood, and the bloodwork is so much better, and he still won’t give credence to the herbs. So, we’ve both changed our minds. Although to be honest, I was never okay with transferring to MGH – I just needed to agree to the plan so that I could even get those three weeks with the herbs. Of course, he was obviously never open to the concept of the herbs working, so it seems like we both agreed outwardly and had different ideas in mind on the inside.
So the new plan is to give me a few more days on the PN to get a “running start” with weight and nutrition, and at the same time I’ll be absolutely downing water, pedialytes (an electrolyte drink), and food. Drinking more fluids makes a big difference in day-to-day weight, while eating more affects weight more slowly. I need both, and I have been keeping up with both. I had been off the PN for a couple nights a couple days ago and lost 1.87 pounds after the first night, but only 0.33 pounds after the second night, and that’s because I drank much more the second day of being off the PN. Since going back on the PN while at the same time drinking more fluids, I’ve gained 5.61 pounds over the course of two days. I know that both the PN and my own efforts with fluids made that happen. Yesterday, I drank over three liters of water, pedialytes, coconut water, pomegranate juice and tea, and the PN is two liters. So once I’m off of it, I should drink even more than three liters and keep trying to increase my food intake to make up for being off the PN. Either tomorrow night or Saturday night I’ll be on the PN at half-rate, and the next couple nights I’ll be off it completely, which is what we had tried several days ago. If I can keep gaining weight or at least keep it stable, then I’ll be able to go home. If not, then I guess I’ll be here a bit longer, but I don’t even want to think about that possibility! I WILL GAIN WEIGHT!
I can’t wait to be home, to see my dog, to be able to go outside (although I should do everything I can to avoid cold weather), to see rugs on hardwood floors and walls not painted white, to not get my vitals checked every four hours, to not have my output collected in hats, to….etc.
That’s all for now!