Marylin's Life From the Year 2000

I realized I was spending much too much time documenting Marylin's life instead of living it with her. You'll find this summary much shorter than the other two. It's better this way. If you have questions, or think I was too brief, write to Marylin. She'll answer you in her own words.

2000

Throughout this year, Marylin continued to have her bile duct progressively dilated by Dr. Kandallu. Every three months, she would have her biliary drain upsized by 2 French. She began at 8 French, moved up to 10F, then 12, and finally 14F. Each successive move up resulted in more pain, but Marylin felt this was her only choice to be rid of the tube, so she continued.

Overall, her health and spirits were good.

2001

Marylin was upsized in January to a 16F tube. This is about the size of my little finger in thickness. This one was tough, but Marylin did well with it. In April, it was removed and a small 5F catheter was placed to see if Marylin's bile duct would remain open on its own. Marylin had a lot of bile drainage at the site. This wasn't too surprising since a catheter of one size or another had been there for over three years.

After a week, the 5F catheter fell out. Dr. Kandallu decided to see how Marylin would do, as this was the overall plan; it just happened sooner than expected. Marylin did very well with it. It took several months for the hole to completely close, but it did. It left a scar, like a small bullet hole, just a little reminder for Marylin so she wouldn't forget what she went through.

Marylin continued to do well throughout the year. She was able to shower again and actually swim in our pool instead of floating. Her spirits and weight slowly went up.

2002

Overall, this was a very good year. Marylin needed a hysterectomy due to fibroids. She did very well and healed normally. She had a CT prior to her surgery and it showed her bile ducts were still dilated, for her a very good thing. Her spirits and health slowly continued to improve.

Marylin began to be interested in her ancestry and has become quite involved in genealogy. She hopes to have that web site up and running in a few months.

2003

Marylin had a bone density test and it showed some potentially severe bone loss. She was placed on a new injectable drug called Forteo. She is doing well with it. She remains tube-free. I encouraged her to start bike riding with me again. In the summer, we would ride usually only on Sundays, slowly increasing the distance. She got up to 40 miles in one day before the cold weather brought bike riding to a stop. Her previous record was 36 miles pre-transplant, so 40 miles proved to be quite a feat for her.

Marylin attempted and succeeded to get the team leader position she wanted. She has enough energy that she works full time now, although I think she wouldn't mind part time again. She feels good and looks good.

2004

Marylin continues to do well without her tube. She is still working full time. Bike riding has begun in earnest and we hope to do 40 miles tomorrow.

Marylin did several 40 mile rides this year, 0ne 60 mile ride and even one 70 mile ride. I'm very proud of her.

2005

Marylin continues to do well with no biliary drain. Her kidneys have been damaged by almost 12 years of transplant medications. She really has to watch her fluid intake. She has not let this slow her down in any way. Marylin continues to work full time plus. She is looking forward to the upcoming bicycle season.

Marylin's labs are acceptable for kidney and excellent for liver. Bicycle season has been slowed by the colder than normal weather. We'll be riding in the Tour de Cure on Lake Shore Drive later this month.

The Tour was a really nice ride. We did a total of 36 miles with few incidents other than some soreness. Marylin did very well.

July 14, 2005

Marylin is doing well. Her weight remains in the mid 80's. She still works full time and is relatively active. We just returned from Halifax, Nova Scotia where the three of us had a great time.

November 14, 2005

Bicycle season was a bust this year. It was a very hot summer and we spent a lot of time out at the pool. Several weeks ago, we joined a health club and Marylin has been going three times a week. She is doing quite well with it.

February 15, 2006

Marylin is doing well. She continues at the health club three times a week. She is toning up well. She will be doing the Hancock Hustle later this month. Hers will be a 52 story climb up the stairs at the John Hancock building in Chicago. Marylin is looking forward to the warm weather.

April 16, 2006

Marylin did the 52 floor Hancock Hustle in 14:36! I was surprised and impressed. She continues to work out, but more like twice a week now. We're both looking forward to bicycle season.

June 17, 2006

Marylin is having trouble with her cervical spine. She has been having pain for some time now and will receive an injection directly into her spine this week. Otherwise, she is doing okay.

November 17, 2006

Marylin has had two epidural injections into her cervical spine. The pain is lessened, but continues. Otherwise, Marylin has done well. Her creatinine levels are down and she continues to work out at the gym. Her weight is constant.

January 14, 2007

Marylin is doing well with liver labs and creatinine; her creatinine is actually better than it has been. She suffered a work related accident late last year. A tendon snaped while performing a routine duty. She has had surgery and is recovering well. She is very frustrated at her inability to perform many simple tasks one-handed.

May 14, 2007

It took Marylin three months to recover from the tendon injury, but she is better now. We are both getting interested in bicycling again, and we have gone 60 miles on the tandem so far this year.

October 14, 2007

Marylin hurt her leg in an odd bicycle accident, so she did little riding. She did do a 12 mile ride for breast cancer yesterday.

February 15, 2008

Marylin had a few small skin cancers. These were treated by outpatient surgery and were successfully removed. Her liver doctor decided to remove CellCept from her list of medications. The concern was that CellCept was primarily responsible for the skin cancer occurence. After a few months, her liver function tests began to elevate. She was put back on the CellCept and prednisone was added. She responded well and her liver function tests are normal again. She is being weaned off the prednisone.

April 15, 2008

The scars from Marylin's minor surgeries have healed well. Her liver function tests continue to be normal. It has been a rough winter here and Spring seems as if it's still struggling to arrive. Marylin is exercising again and looking forward to riding her bike. She now weighs about 92 lbs.