Thursday, January 15, 2009

Life in the 'big house'

This is a nice hotel, which is a good thing because I’ve been here three weeks and may not go home until after my new transplant, which is now scheduled for Jan. 30.

I wake up at least twice a night drenched in sweat, and help is only a buzzer away. A PCA (personal care assistant) comes in with a new hospital gown, and I sit in a chair while she changes the sheets. It’s just sweat, but I told her the other night, “I feel like a little kid.” When she is three-quarters done making the bed, I climb back in and she puts a clean sheet and new blanket on me and tucks me in.

Bright and early, a nurse comes in with my pills.
“Your pills, madam.”
Well, more like, “Good morning, I have your morning pills, how was your night?"

The list:
Labetalol (for my blood pressure, which rose when I came into the hospital), Prilosec (antacid), Levofloxacin (antibiotic), Tricor (for high cholesterol, also new for me), Valcyte (anti-viral to treat and prevent CMV), Voriconozole (anti fungal for the pneumonia), Lexapro (anti-depressant), folic acid, multivitamin and sometimes magnesium.

Then a nurse or the unit coordinator brings me coffee, mustachioed Steve drops off the New York Times, and I lounge half the morning and then go do my 20 laps.

I get platelets or blood every few days or so, and, as needed Ativan or cough syrup with codeine. Sometimes I feel like I’m being held together with tape. On some days I thought I would write but I could barely find the keys, and my hands shook. I get Benadryl with every transfusion, and I’ve also had some Demerol when a fever was coming and I had the shakes. But my fevers have decreased, and they discontinued the Demerol in favor of warm blankets, which are really comforting.

The other night there were workmen in my bathroom after midnight doing battle with a leaky faucet. I said I didn’t mind the drip that much, and suggested they return the next day. They kept at it for a while and then did come back the next day, I think around 8 a.m. A woman came in to do another EKG, and I said, “There are men in my bathroom.”

She eyed me as though she thought I was delirious, but as if to humor me, she went over and knocked on the bathroom door. Sure enough, two workmen were squeezed in there. She told them not to come out until she finished the EKG.

The pneunomia is continuing to clear up. I can take a full breath without coughing, and the oxygen saturation that they check with my vital signs is nearing normal again. A week ago I couldn’t get past about 85 percent, and I went on oxygen for a little while one night. Now I’m back up around 98 percent.

A hairdresser from the Friends Boutique at Dana-Farber is coming to give me a haircut this afternoon. I hope that’s as exciting as the day gets.


CLL Spouse said...

Congrats on the 98% and I love that a haircut is in the offing. May you soon feel you are being held together by something more than tape!

Becca said...

I've been lurking for a while. I hope all the meds they are putting into you start to make you feel better soon. Best thoughts from the windy north

Mary said...

Hi Ronni,

Glad to hear you have a date scheduled for the transplant and that you're breathing a little easier now.

By the wya, you're way ahead in the Blog voting...almost 100 more votes than No. 2 place.


Ann said...

There's something about the luxurious plastic/rubber mattresses in hospitals that causes me to sweat effusively. I had the same problem as you the last time I was in for transplant and it makes for some pretty miserable nights. Unfortunately, my night CNA was a talker, so I had to weigh my discomfort against my need for quiet.
I'm happy to hear that you have a firm date. It's right around the corner, which means home becomes that much closer.

Susan C said...

Ronni, Glad to hear you're still doing your laps, in spite of everything. You continue to amaze and inspire me.

Could you post (or email me) your hospital address? I have a silly something to send you.

Ronni Gordon said...

Hi Susan,

It's Brigham and Women's Hospital, 75 Francis St., Boston, Mass., 02115. 6C, Room 54


Hey Ann, I never thought it might be the mattress. That makes me feel a little better because I haven't been able to figure it out.

PJ said...

I used to sleep on a towel so only I needed to change, not the bed.

How's your new 'do?

susiegb said...

So glad to hear from you again Ronni, and that the pneumonia is slowly clearing up. My mother had pneumonia a couple of months ago and that was the first time I realised how long it takes to get rid of. You are certainly in the best place to be looked after and to build your strength up again ... :)

30th January isn't that far away - 2 weeks in fact. And then you'll be counting down the days till you get home ... (along with all of us!)

kORBY said...


Nelle said...

This may sound crazy but I feel very secure when I am hospitalized. I had nightsweats so bad after my spleenectomy and it was wonderful to get some warm blankets afterwards. When my son was hospitalized for nearly five months I was scared to leave and take him home. People think it's strange but the hospital we were both treated at feels like my home away from home. Glad to hear you are moving towards the new transplant date. Progress, one small step at a time but progress, none the less. Way to go Ronni!

Anonymous said...


As usual you find the humor and irony in all of this. Hmm, I am NOT hospitalized and take an ativan EVEVY NIGHT (might have to do with the 60Mg of prednisone too:)!

You are doing great- and from the outside Jan 30th is not far away. But when you are inside it seems like a long long time. It sounds like good timing as you are regaining strength and some much needed oxygen!!!

Carl said...

Hope it goes very, very well, Ronni.


donna said...

You are SO funny! "There are men in the bathroom", and the nurse thinks you're delirious. And then she looks and there they are. So precious! The blog race is looking good but, even more important you're feeling better! A friend once said that breathing oxygen was like breathing velvet. Even though that sounds nice, I bet it feels great to breathe just plain old air well. Goodbye pneumonia! Stay strong, friend. You are incredible. Love you and miss you!

pam said...

Dearest Ronni,

who knows which men will appear tomorrow in the bathroom? So glad the breathing is easier now, --

soon enough, come Spring, you will feel the wind behind you, and have the road rise up...with a wonderful horizon!
You are a true winner, a rare and magnificent being beyond the confines of cliches of inspiration, etc.
to quote Molly, "Yes!" i have finally written...

Michele A said...

You are truly inspirational ...stay strong and keep up the good fight! 98% is perfect!

Carolyn said...

sorry you're stuck in the hospital until the transplant, but hey, you said it's a nice hotel. And you're a great guest (patient). You constantly amaze and inspire us. Looking forward to seeing you soon. It's bitter cold out, but spring is around the corner, thank goodness. Love Carolyn