04/28/09

As hopefully most of you know, Susan has been seriously ill since early October. She is currently off-work and has been for many months.

On 10/2/08, Susan presented with a fever - and no other symptoms (3 day admission for sepsis workup). About a week later she developed severe mouth ulcers that robbed her of her ability to speak and eat for about eight weeks. As soon as the oral ulcers resolved, she developed gastric ulcers.

In mid December, after a 12 day hospital stay, two large (> 2 cm) gastric ulcers were found. Unfortunately these ulcers were NOT due to a common and treatable cause like h. pylori. Time was the only cure.

Throughout this period, Susan had spikey fevers, often hitting 103 F and nearly passing out. Each of these fevers presented with no other symptoms, and all basic fever workups could not find the cause. Each fever generally lasted less than 24 hours.

In January, things worsened significantly in terms of pain with eating, and vomiting. The fevers became a daily affair, and nausea was relentless. Susan was seen by many teams, including Infectious Disease (docs like Dr. House). A complete Infectious Disease workup was unable to reveal the source of the fevers. They repeated the endoscopy near the end of this 18 day admission (now well into Feb) and found... cancer. It is a specific type of lymphoma called PTLD: Post Transplant Lymphoproliferative Disease. This type of cancer is caused by taking immunosuppressant medications. The cancer presented as over 40+ small gastric ulcers, and 4 giant gastric ulcers. IV nutrition was started at this time as bloodwork showed that Susan was malnourished.

The treatment for the cancer was to reduce immunosuppression, and use a cancer drug called Rituximab. The good news is that this treatment was successful, and unless we are surprised by a followup endoscopy, the cancer is gone.

The bad news is that approximately two weeks after reducing immunosuppression, Susan went into rejection (7 day admission). They were unable to treat the rejection aggressively, as that would make the cancer worse. Rejection was extremely painful as it caused acute pancreatitis. Finally after many weeks of hoping the pancreas would come around, it was removed in a major surgery on 4/2/09 (17 day admission).

During this surgery it was also discovered that Susan's gallbladder was gangrenous and it was also removed. The fevers sadly persisted. Several times Susan had to be packed in ice as her temperature reached dangerous levels.

We lost track of the total numbers of days spent inpatient at UCSF - we often had to go back for fever workups.

So we get to now, two months out from the wedding, 4/27/09. Susan sadly still has near daily fevers. Sometimes they are as high as 102, but in general they tend to stay between 100-101. She still has mouth ulcers, but note that they heal faster now that she is off immunosuppression. In addition, her GI tract needs work. Susan has been on IV nutrition (TPN) since the end of January for about 99% of her calories. She still fights nausea and vomiting.

We still visit many docs - oncology wants a followup PET scan "to be sure", GI needs a followup endoscopy (check ulcer progress as well as check for cancer), and ID (Infectious Disease) hopes to be able to at least name the virus wrecking this havoc. In addition, endocrinology is a close friend as IV nutrition complicates insulin requirements.

Most of the planning of the wedding has been left to Mom & Dad and Julian, for whom Susan is grateful. We also piggybacked on one of the MOH's own wedding plans, visiting the same vendors. We get many questions about whether the wedding is on. YES, it is! It is a great thing to look forward too - and we pray that Susan will have a fever-free, nausea-free day on 6/27/09.