The best institutions are on top of the non handwashing, dirty long sleeves, and “I’m above all of that” attitude. I am in an ICU at a major medical center. We have hooks outside of the ICU unit and outside each sub-unit for those white coats which have seen tons of outside material. The rounding MDs are required to roll up their shirt sleeves to the elbows when they are in the unit, whether they are examining patients just now or not. All staff are expected to wear short sleeve scrubs (”our patients deserve bare arms” is the slogan). Hand washing audits are done every week by staff on this team and a percentage of MDs, xray, lab, and staff nursing handwashing before patient contact is published each month. RNs are asked to remind physicians and others to wash their hands before they touch the patient. Sanitizing foam cleanser is by each patient’s bedside.

Because I have been a hospital staff RN for a very long time, I can say that “our” worst fear is making a mistake that will harm a patient. Persons who make life-threatening mistakes in patient care are racked with guilt and many times suffer long-term depression. That said, I would also recommend that you have a personal advocate and information checker with you when in the hospital. Having someone with you like Serena is with Harvey helps both the patient and the staff.

My best wishes to Serena and Harvey for both healing and smoother days ahead.

Long time reader, first time poster. My husband Robert was diagnosed with CLL in the fall of 2005 and I have been following CLL topics since then. I want to thank you for the great site you have created. It is the most informative CLL website I have found, bar none. We both deeply appreciate the way you break things down and your writing style. Yours is the first site we go to when we have to look anything up. Robert will most likely be getting a transplant within the next year, so we are both following Harvey’s journal with a great deal of interest. Know that you are both in our prayers.

Kindly,
Hardip

For all of their impressive policies and procedures, medical professionals are still only human, and as you said, just doing their jobs. At night, while Serena and Harvey are pouring over their research and agonizing about the profound implications of a “flagged” unit of cord blood, those who ordered and performed the infusion are sitting at home on their sofas watching American Idol, eating pizza, and voting for contestant #3 on their cell phones.

I’m not trying to demean the commitment of medical practitioners, just suggesting that they are no different than the guy who services your car, and we (the consumers of medical care) are often guilty of placing too much confidence in them. This does neither us nor them any favors.

Serena and Harvey are, by far, the most motivated parties in this endeavor, and they need to allow their motivation to extend into their relationship with the practitioners who are treating Harvey. There is no better way to ensure that Harvey will receive all the great care that he was promised.

Best wishes, you guys. I am following your story with great admiration, hope and interest.

Regards,
Grant Davis

Hospitals can be intimidating places. As soon as they put that plastic ID bracelet on your wrist, the institution and their processes take over. Even with the best of intentions and in the best of institutions, it is easy for the lone patient voice to get lost. Especially if that patient is drugged up to the eyeballs. One obvious lesson learned: if at all possible, make sure there is a strong and involved family member or advocate present to speak up for the patient. Maybe once we are all done with Harvey’s transplant I should hang out my shingle as a professional patient advocate, ready to be hired by other CLL patients. Right. I can imagine various doctors cringing at the thought!

Looking over my post there is one thing I would like to change. My comments about nutritional supplementation is out of line. Often, patients undergoing extensive therapy suffer from mucositis - sore mouth and ulcers along the GI tract are common. And yet it is important to keep up the level of essential nutrition. There is absolutely nothing wrong about getting intravenous supplementation to keep things on an even keel. I apologize for the flip comment on that front. I have edited it out that bit, so that people reading this post in the future do not have to deal with my unjustified snippy comment on that front.

Whether you plucked that name out of the bag marked “Distilled Irony” or the bag marked “a’berah k’daberah” (what I speak I create), I do not know.

You and Harvey are surely the most knowledgeable CLL patient and patient-spouse most hematologists/oncologists have ever encountered. Yet I doubt that even you guys would have imagined that Harvey’s brave and calculated leap would provide such evidence that undergoing treatment for CLL and its cousins can be an extreme sport.

Your ability to write about this disturbing experience while it is so fresh and still reverberating in your entire being, and to do so with clarity and with thoughtful analysis — and without @#$!$^%@&* — is remarkable and inspiring to everyone. More important, Harvey benefits simply by knowing that such a person as you are near him, looking out for him, and caring for him. Everyone who knows about you two is pulling for Harvey and wishing you and him all that is conveyed by your name.
— Jon

Steve and Barb Grice