Tuesday, June 5, 2007

June 4, 2007 - Monday

Today’s events were quite dramatic. I had the highest fever of my entire life – it was 104! It started to spike while I was getting an echo cardiogram and by the time the ½ hour test was done, I felt as if I was on fire so I called the nurse in and asked for Tylenol but it was already too late. After that, the nurse filled a huge bucket with ice and water and we completely soaked down my body from head to toe. We even had it dripping off my head – like with my hair. After ½ an hour we had to get a new set of towels, because my hair was coming out onto the wet towels (as it was supposed to) and we kept my entire body soaked from head to toe with ice cold water for about 45 min.

When my temp was rechecked – it went down to around 102.1 – what a great feeling to have that under control.

After that, I felt much better (compared to earlier in the day) – Joanne brought delicious crab cakes for dinner and apple pie with a side of ice cream for dessert. And before the temperature spike, Joanne and I walked 6 laps of the 4B unit (I am calling it my prison at this time) and 6 laps after dinner when we realized that my temp was down to 100.8.


I’m still taking this day by day and I hope that Dr. Brodsky will be back from Chicago and will be able to see me tomorrow (because just seeing him will make me feel better).

I had an absolutely horrible encounter with today's attending physician and his team of lower level doctors (resident, intern, fellow). He was so nasty and inappropriate with his bedside manner and he set an awful example for the doctors he was supposed to be teaching. It seemed that he had no idea what it feels like to be on the other side of the situation being a worried patient in a hospital bed. When I innocently said "what will it take for me to get discharged back to the IPOP?" meaning I felt like I was in prison, stuck in a tiny hospital room with no one telling me what was going on and at night when pressing the nurse call button often waiting an hour for just a glass of water. His answer was "you can leave right now but you could die out there. We don't know what your fevers are from." There would have been much better ways to say the same thing, without being so dramatic and possibly using more reassuring phrasing.

If Dr. Brodsky was in the room, I know that he would have said something completely different, because he is the HiCy expert who has seen it all. He would never try to scare me, he would make me feel safe. I signed on to do this HiCy protocol with complete confidence and faith, because I knew that Dr. Brodsky had incredible knowledge and experience from treating over 250 people this way. So, I desperately wanted to see his smiling face, then I'd feel better. The attending Physician, who was so mean, acted like he was personally insulted that I had made a call on my cell phone to Dr. Brodsky's assistant to ask if he could stop by to see me. What this man did not even consider when messing with me psychologically was that Dr. Brodsky had made it clear at my preadmission appointment that he would welcome any and all questions/concerns I had during my treatment at Johns Hopkins.

2 comments:

Marion DiStefano said...

Hi Joan, Not sure if I logged in correctly. This is the second time so you may be getting this twice in one day. Talked to Greg today and heard your temp was normal. Keep eating so you can keep up the strength. It seems like you have very attentive caregivers and are in very good hands. Thanks for keeping up the blog, it is very helpful to read so we can keep tabs on you!
Love,
Marion

creatingnormalcy said...

Joan: It was sooo good talking with you today! Wish I could be there the whole time through this journey. Bob and I truly enjoyed helping you this past week. Please read my blog of our experience. creatingnormalcy which is what we are endevouring to do for you, Gregg, Gordie, and Jessie. Look forward to seeing you again on Sunday! Marilyn