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.

Saturday, May 27, 2006

Saturday +45 (5:00 PM)

I hope everyone is enjoying the Memorial Day weekend!

Jackie has been really tired again today. Her counts continue to be constant, but with her RBC (Hgl) low her energy level is also low. The doctors still compliment her on doing well and think she is well ahead of normal at this stage of the process. All-in-all she feels well today with no nausea or major complaints. Her back is still bothering he some, but not as bad in past days. So far she has been able to do without her Scopolamine transdermal patch and Compazine for nausea. Hopefully these are a thing of the past.

As I mentioned, her counts are relatively constant. Her RBC (Hgl) is unchanged from yesterday's 9.4. Her WBC count is also unchanged at 2.5. Her platelets continue to improve slightly to 112 from yesterday's 106. I think the only thing new is they think she has oral thrush. I thought THRUSH was the evil empire in 1960s TV show, "The Man From Uncle". It turns out it is a fungal infection and very common when high doses of antibiotics are taken. I don't think it is too serious, but they treat it with an oral mouthwash. Jackie says it doesn't taste great....but it's not too bad. She rinses 4 times per day.

We ate at a new restaurant today. Mac's is the name of the place. They are actually just below our apartment and maybe only 100 yards from the front door of the building. They are always busy, so that is one reason we've never been there before. Mac, it seems, is Greek so they offer lots of Greek specialties. Today I had a Gyro with fries. It is easy to see why the Greeks never were successful in fast food. Although good, it was like eating an Arby's roast beef sandwich in a Taco Bell taco shell. Really messy! Jackie had fried chicken strips. Her appetite still isn't back to normal. She wasn't able to eat a lot. She still continues to lose weight slowly. I did a quick calculation and her weight has fluctuated 33 2/3 pounds since we began the transplant. Of course this is based upon her "fluid retention" period. Overall, she is down about 20 pounds from where she began the transplant. As she often says, "If you could bottle this process, Weight Watchers would be out of business."

I may make a few changes to the blog. It seems that I was asked if another CLL site could link to this one. I also posted a copy of the blog link to a CLL forum site. There is very little written about the actual transplant process. A great deal of information exists with regard to diagnosis, treatment, etc. but nothing outlining what it is like to go through the process one day at a time. I also thought it might be nice for others who might be venturing to Rochester to know a little more about what goes on both at the Clinic and within the town itself. So, from this point forward it will likely be more than just family and friends reading this blog. I thought it might be interesting to post a few more photos and maybe even some videos. For example, at several places inside the Clinic you will find volunteers playing Grand pianos most of the day. You also see some amazing artwork. In the hallways they have a full set of Andy Warhol paintings, a Joan Miro, Tiffany lamps, etc. They also have some unique glassworks and sculptures.

Well until later,

Bruce and Jackie
From Rochester, MN

2 Comments:

Anonymous Anonymous said...

We still read and pray for you daily. Its good to hear your counts are staying steady. That HAS to be good. Its hot,hot, hot here. Gotta love Oklahoma

Mouse

8:26 PM

 
Anonymous Anonymous said...

Nantucket says Hi and hope you continue to progress in a positive manner. It's nice here and all the FAGAWI people are enjoying their paradise island. Prayers are with you always.

12:56 PM

 

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