A Day in the Life of an outpatient at the NIH

Hello everyone:

Below is the details of our 3rd and last day at the NIH before coming home. There is no exageration going on. All events are actual...unbelievable, but actual. This day is very similar to EVERY day that we have gone to clinic since Jim has been an outpatient.

***We leave the hotel 20 minutes earlier than normal because of traffic. As we enter the garage, our car is searched for explosives. They do this every time. It's okay, particularly in spite of what happened at the Hollocaust Museum.

***I park the car and go and get the wheelchair. Wheel Jim into the hospital and get the parking ticket validated.

***The first stop is the voucher office. The NIH reimburses for hotel stays (to 50 dollars a night) and mileage for travel. It usually takes 3 to 4 stops at the voucher counter because they NEVER GET IT RIGHT the first or second time. I had gone to this office 3 times the day before and finally got all the info right. I bring them the "zero balance receipt" I am told I will need from the Hilton, but Tiffany tells me that it doesn't show how much we paid, so I need a different receipt. I will have to go and print one out.

***But first I wheel Jim to his dermatologist appt. It's in the old section of the hospital on the 2nd floor, about 1/4 mile into the hospital. I wheel him there.

***I leave and walk 1/4 mile back to the main part of the hospital to print my receipt for the voucher office. I go to the business center on the 1st floor. The security guard cannot find his keys. When he does, he allows me into the center. The printer says. "OUT OF ORDER." The others do not work either.

***I go up to the 7th floor to the library. They have computers and printers there. For some reason they are not open.

***I go down to the 3rd floor to the day hopital Jim goes to. There is a room there that has a computer and printer. I don't even ask. I go in, go print the receipt.

***I take the receipt to the 1st floor voucher counter.

***I go to the 2nd floor and walk 1/4 mile back to Jim. The docs come in, and once again they want to do a biopsy of Jim's skin to guarantee the GVHD. They want to do the chest, but they did the chest the last time and it came back inconclusive. Jim suggests a spot on his arm which is much better, and they proceed to do a biopsy, as well as look over Jim's whole body. They prescribe 3 separate creams.

***The pharmacy is a world of it's own. Sometimes it takes 2 hours to get meds. So, I walk 1/4 mile back to the main hopt, go down to the 1st floor to plug in Jim's name so that the wait is shorter for the meds.

***I walk back 1/4 mile to 2nd floor to Jim. The biopsy is done and we are ready to go. The doctor informs us that the PA wants to see Jim at the Day hospital.

***I push Jim 1/4 back to main hopt. We go to 3rd floor, and there isn't a room available and we have to wait and wait and wait. I go down to the 1st floor pharmacy. meds not ready.

***I stop at voucher office to check on status, and there is a problem. I walk to front of building to get a phone signal to call Judy at the voucher office, she will take care of it for me.

***I go back to voucher office and tell Tiffany. She says, okay. Come back at 12:00 p.m. I hold back scream, as I am used to this.

***I go back up to Jim. He's still waiting. Infectious Disease wants to see him because of something the Derma people saw. Finally the doc comes, and we have to go to the day hopt. because there is a room over there. So, I push Jim to the other side of the hopt. The doc examines him and makes all these changes, but it has to go through our PA. So, I push Jim back over to the day hopt.

***I go down to the pharmacy. The prescriptions are ready.

***I bring them up to Jim. Jim tells me the one for his face is the wrong prescription.

***Back down to the 1st floor and I tell the pharmacist. He says, I have to tell the derma people.

***I walk 1/4 mile back to 2nd floor to tell derma people. They change the prescription through the computer.

***I walk 1/4 mile back to 1st floor of main hopt. to pharmacy. I tell the pharmacist and give him the wrong meds back, and I have to sign in again....(I again, hold in my scream.)

***I go back up to the 3rd floor and Jim still hasn't seen the PA. She has "so many other patients she has to see yet."

***Jim spots the research nurse and asks the questions that we needed to ask. They changed Jim's immune supressant drug. I looked it up on the computer, and it causes numbing/tingling, (EXACTLY WHAT JIM DOESN'T NEED.) She says that it doesn't cause that.

***Also, the meds we received at the pharmacy the day before have no instructions on the label. I ask her and she says ask the pharmacy.

***Back to the pharmacy to find out that there are ALL KIND OF SPECIAL WAYS TO TAKE or not take these meds. SIGH.

***Back upstairs to 3rd floor to Jim. He nabs the PA in the hall and they iron out all kinds of other issues, and once again find them in error on several points. One of the points is bringing up the question about the new immune suppressing drug that the other nurse say won't cause more neuropathy. The PA says that is could, but Jim's out of choices for meds. Yippee.

***We leave, go to the pharmacy and get meds.

***Go to the voucher office and pick that up.

***Wheel Jim to the car and we're off.

***Now, I need to stop and get water, gas, food, go to the bank, and then drive all the way home. Then I have to unpack and get meds and give Jim a shot, etc. I got to bed around 2:00 a.m.

It was 1:00 when we got out of there that day. The 1st day was more of what I described, but we didn't get out of the hopt. until 8:30 p.m, after being there all day. And the following day, we were there all day as well, getting out about 7:30 p.m. And I wonder why I am tired.

Anyway, this is what it's like there. And I didn't go into all the snafu's either. Amazing, isn't it?

Today, Jim is exhausted, and I am very down. We hope that someday we can say "it was worth it."