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.

Sunday, August 02, 2009

Three Years and About 3 Months (+1207)

It has been about 3 months since the last update. I don't do these very often because I doubt anyone reads them any more. But just in case there is someone out there still following I'll continue to update from time-to-time.

Over the past three months Jackie has continued to have a lot of ups and downs. Most of the problems have come from her GvHD. It continues to attack her skin and gut. To combat the problem she takes two-sessions-once-per-month of photopheresis at the Mayo Clinic. This seems to have helped her scleroderma symptoms with minor benefit to her GvHD skin issues. Her skin has become thinner and some of the splotchy patches have improved. It remains to be seen how long she will need to continue these treatments. She continues to have problems with small skin cancers and warts due to her weakened immune system. It seems that each month she needs some type of minor surgery to deal with these problems. It is amazing how fast something as simple as a wart will grow without a healthy immune system to keep it in check. Minor problems can become major problems in as little as one month.

Since the last update she was hospitalized for about one week due to a leakage from her stomach/gut into her bloodstream. This allowed e coli to pass into her bloodstream making her quite ill. Fortunately IV antibiotics put her on the road to recovery within about 24 hours. We were lucky we were able to get her to the doctor at the Mayo in short order. Within minutes of seeing her he diagnosed the problem and had her the antibiotics within the hour. I really think had we waited another 6-8 hours and the outcome might not have been good.

The latest hammer to drop has been a recent problem with shingles (Herpes zoster). About 6 weeks ago she was having an outbreak of GvHD. Without warning she began experiencing excruciating and debilitating pain. Of all the issues she has dealt with the shingles episode has been the most painful! The problem is slowly improving but there is still a lot of pain. It is not something to be taken lightly. The standard pain meds of Oxycontin and Oxycodone have little or no effect on the pain.

There continues to be no sign of the original disease; CLL. Her blood counts continue to be completely normal. Hopefully she will be able to decrease the steroid and anti rejection meds and still keep her GvHD under control. The big goal now is to get her on the smallest possible doses of immunosuppressive agents. The doctors say that over a period of five years GvHD usually improves naturally. At 3+ years post transplant we certainly this to be true. It continues to be a long road and a difficult journey.

Until Later,

Bruce and Jackie


Blogger Scleroderma Blog said...

I imagine there are many more folks then you think watching blogs related to scleroderma. I know if I don't post often I get a few folks emailing me to see if everything is ok.

9:43 AM

Anonymous Anonymous said...

I know that many, many people read this blog. The minute I saw it posted as an update on CLLForum, I logged in. Sounds like this has been a somewhat difficult journey, especially as the caregiver. You have shown the rest of us caregiver's how it should be done. I know this is hard for you. Thank you for giving us the priveledge of sharing in some of your journey.

May the days get better and better and remember.....take care of you!

Jenny Lou Park

4:32 PM

Blogger Elaine said...

Dear Bruce and Jackie,

I don't know if many read your blog or not, but you do have one more follower! I am trying to "catch-up" and have begun reading from the first.

Thank you! I am learning as I read. I also have CLL and I know that a transplant may be in my future somewhere down the road. I appreciate you sharing your journeys with me and others that might also have to walk that road.

Keeping you and Jackie in my thoughts and prayers!

7:49 PM

Anonymous Anonymous said...

Thanks for the update...sad I live within 30-45 mins of you and I still have no idea whats going on with you Jackie...Glad u r there and they are taking good care of u. Greg just finished 4 months of Lukeran...counts havent been this good since 2/08...YEAH!!!! He doesnt have to return until October.
Take care and we need to touch base in person sometime..
God Bless
Sherrie Osten

3:39 PM

Anonymous Dennis Pyritz, RN said...

Special invitation to leukemia bloggers. This month’s Book Club selection at is by leukemia and transplant survivor, Evan Handler. Handler is a noted Broadway and television actor best known as Charlotte’s boyfriend/husband in Sex and the City. He has also appeared in Lost, The West Wing, and Studio 60. This funny and poignant book covers his diagnosis with AML, his remission, relapse, and treatment with bone marrow transplant at John Hopkins and Memorial Sloan-Kettering. You can order a new or used copy of the book from my site. Discussion began today and will continue for the next three Mondays in September.
Take care, Dennis

9:44 PM

Blogger Fay said...

Hey Bruce and Jackie,

I am still reading your blog to get a constant update on your life after transplant. Since I should be getting one when my CLL comes back. I am quite scared actually. I hope by then technology will be so advanced, we all can live without any pain any more from GvHD.


12:03 AM


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