Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.

Wednesday, April 26, 2006

Wednesday +14 (9:30 PM)

Jackie had a sinus CT scan late this afternoon to check for possible infection. As of this writing there was no results from the test. The docs don't think there will be a problem. They said that the CT imaging people usually contact them immediately if there is a problem. If they hear nothing the test is usually negative. In preparation for this possibility that she has no infection and due to the fact that she is having some reactions to IV antibiotics they have elected to remove her from all IV antibiotics. She is now on oral antibiotics only.

I feel certain they would discharge her, but she continues to have problems with minor fevers. She has to remain below 101.3 (38.5 C) for a period of time to be discharged. The probable reason she is spiking fevers is due to cytokine production. Cytokines are the second responders to infection and microbial invasion. The first responders are white blood cells (T-cells). During this stage, our immunity functions properly, and T-cells attack the microbes so they do not get too strong a foothold.

However, the mere presence of T-cells clustered at one site, especially the lungs, alerts other T-cells that a full-scale war has started. In the second stage, even more T-cells, (the cytokines) flood the lungs. This propagates a Cytokine storm where far too many immune cells are caught in an endless loop of calling even more. The cytokine storm ends up inflaming the tissue of the lungs and crowding air passages, causing breathing difficulties. This is probably what was happening when Jackie was having difficulty breathing - a cytokine storm. Of course her breathing is much better, but some excess cytokine production is probably still taking place and that results in a fever. As the excess cytokine production drops the fevers will drop. Again, this all happens as blood counts improve. At least this is the latest thinking.

An interesting side note is that Jackie has a fresh-start immune system. This means she has no immunity to any type of flues, colds, chicken pox, mumps, measles, etc. etc. etc. About a year from now she will have to undergo childhood disease shots. These are the same ones your kids get when they start school! Most people don't realize in a stem cell transplant this takes place. Now you can see why she will so easily get sick if exposed to new germs.

As people go through life they contract various and sundry coughs, colds, flues, etc. Over a lifetime you develop immunities to these so when you are exposed a second time you don't get sick. That is why kids are always sick. It is the first time they've been exposed to the new "bug" at school. The kids get sick but mom and dad stay healthy. In Jackie's case she will get sick...just like the kids. So, she will need to be very careful. Kids are young and resilient and bounce back from the various ailments. Older people do not. So, when she gets back home if you even think you've been exposed to something stay home.

I just rode the elevator down and walked with a man whose wife just completed her 53rd surgery! She has a rare form of arthritis. I mentioned to him what I posted yesterday regarding my conversations with the docs and the use of stem cell transplants to cure autoimmune diseases such as arthritis. He found it interesting and said he would talk to their doctor about the process. I doubt the docs would consider such a move since the surgery is not life-threatening. Certainly the stem cell transplant would be. He said after 53 surgeries she might want to take the chance. He was from Illinois and said the docs there had no idea why her arthritis was so severe. It was here at the Mayo they discovered she had an extremely rare form of the disease. It seems the 53 surgeries have taken place over quite a few years. As I've said before, I fully believe if you came here with a complaint of "constant sneezing while climbing ladders on Fiji" they could find a doctor that was a world-renowned expert on that disease.

Until Later,

Bruce and Jackie
From Rochester, MN


Anonymous Anonymous said...

We read :) Love you,Jackie! We're still praying and we're happy things are getting better.
Love ya & miss ya

Laura & Emily

11:44 PM

Anonymous Anonymous said...

"Victory is won not in miles but in inches. Win a little now, hold your ground, and later, win a little more."
Louis L'Amour

I love this quote. It helps me through every day.

Tyler Flann Harris

6:55 AM

Blogger Tami said...

Glad to hear that your breathing is getting better. You are doing great. Keep hanging in there and fighting. Love ya and praying for you..xoxox

9:11 AM


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