PCI-32765 monotherapy Clinical Trial cycle 3 a rock and a HEART place, lessons part - 4

[Guest guest]

When my heart issues sent me to the ER it was naturally on a

Sat. Being in a Clinical Trial on an experimental drug

(PCI-32765) taken every day that has close heart monitoring

the lesson is, to make sure you have a good channel of

communication to your CTU team so that any procedures that

you may need are going to be coordinated between the Trial

Oncologist and your ER Doctors.

When I was moved from the ER to a telemetry floor in the

hospital I was put in a room with another patient who had a

bandaged foot. We shared a bathroom and sink. He told me

that he had his big toe amputated as I was settling in and

getting to know my neighbor. After my wife left and

conversation resumed he related to my curiosity that the

amputation was due to systemic MRSA (Methicillin Resistant

Staphylococcus Aureus). I quickly brought my immune

compromised status to the attention of the station nurse. I

was promptly moved to another room. The lesson is to ask

ahead of time what your hospital neighbor is in for.

When my red cell count appeared to be crashing I asked the

nurse if the hospital had irradiated blood on hand in case I

needed a transfusion. They did not and it would have to be

shipped in. I forgot to inform the hospital that I would

require irradiated blood even though I did inform them that

I had been previously treated with Fludarabine. The lesson

is, if you have been treated with Fludara (and maybe other

chemos) don't assume the staff will know you need irradiated

blood and ask if it is on hand. Make the ER staff and the

floor staff know of your needs.

I was frequently blood drawn to monitor for anticoagulation

concerns and daily CBCs. It was carried out by 10 different

" Clinical Assistants " and two different nurses. Two of the

Clinical Assistants did not follow hygienic protocol which

is: 1) find the vein with finger 2) alcohol swab area 3)

allow time to air dry 4) do the " stick " . Technicians in a

hurry will often dry swab over the alcohol swab to get the

job done faster. One gal put an ungloved finger on the vein

after the alcohol swabbing. The lesson is - make'm do it

right!

My 8 day hospitalization gave me an appreciation for the

demanding job of hospital staff. We had one death on my ward

and two medical emergencies. Life is not perfect and

mistakes or oversights will occur. You can be a main player

by being vigilant and an advocate for your own best care.

Some things you are just not going to know like the improper

Lovenox injection technique that was pointed out to me by

one of Dr. Byrd's nurses who spotted my rather large

" bruise " at the injection site. I got her to give me a copy

of the proper technique to educate the NY hospital where it

was administered.

Some things are easy to overlook and could make a big

difference.

WWW

[Guest guest]

Wayne, how right you are! Ralph got MRSA while in the

hospital at U Penn because a nurse was in a bad mood and in

a hurry.

We all need to be vigilent as to what's happening. There

are honest mistakes made, after all these people are human,

but if we keep a watch on our own care there will be less

mistakes.

Thank you for the reminder. I've copied this post and sent

it to Ralph for his reading.