Wednesday, April 14, 2010

DAY +314: Still Working to Understand the Issue

Top Line: Internal bleeding (now resolved) has delayed plan

Susan and Bob went up to Dana Farber Monday, where they expected to meet with the gastroenterologist to get to the bottom of the ascites/liver issue. Susan was looking and feeling a bit peaked, though, and the blood work (which is always done first upon arrival) revealed a significantly depressed hematocrit, a sign of internal bleeding. Dealing with this put all other plans on hold.

An endoscopy was performed and it revealed bleeding ulcers, both esophogeal and gastric. Susan was hospitalized, put on Nexium intravenously, and given 4 units of blood. Today she was feeling much better -- nothing like a jolt of fresh blood to perk a body up -- and actually ate a good breakfast.

This afternoon they performed a needle biopsy to get a sample of the ascites fluid. The doctors are going to consider the results of the various samples they have taken and bring that information into an examination and consult on April 26th with the gastroenterologist being tasked to get to the bottom of Susan's condition. Paracentesis to drain the ascites fluid is also a likely treatment item when she returns on the 26th. As I write, she should be in the process of being released to return home to NYC, but with a number of adjusted and new medications.

Tune back in late on April 26th, when I expect to be blogging the results of Susan's next DFCI visit.

Tuesday, April 6, 2010

DAY +306: Working to Understand the Issue

Top Line: No alarming outcomes but the persistant ascites an issue

The good news is that there was no bad news resulting from Susan's visit to Dr. Soiffer on Monday. However, she continues to be something of a medical mystery. Ascites, the buildup and retention of fluid in the abdomen, is usually a byproduct of some kind of liver issue. Susan's ascites continues and seems to be associated with her maddening pattern of two or three good days followed by a bad day (remember "yech"?). So, what's the liver issue? What's going on gastrointestinally speaking? What's root cause? Nobody knows.

As Soiffer explained it, all the various tests she's had over the past several months -- endoscopy, MRI, liver ultrasound, et al. and ad infinitum -- seem to point in different, mutually exclusive directions. It's a puzzlement. He has enlisted his most preferred gastroenterologist, someone who was desired but not available in an earlier go-round on this matter, and this guy, we hope, will be able to figure it out. He has ordered an echocardiogram, to be done this week in NYC, and then a return visit to DFCI next Monday when Susan will undergo another paracentesis to remove excess fluid that's accumulated due to the ascites. Based on outcomes, combined with all previous data points, he will, we hope, have a better understanding of Susan's condition than has been hitherto achieved and will prescribe the appropriate course of action.

Meanwhile, let's keep this all in perspective. It's now more than 300 days since the procedure. The further out she gets, the better the prognosis for a lasting cure. While there's been some GVHD, which is the greatest threat to a transplant patient, it has not been particularly virulent. Over time, if the conflict hasn't escalated, the foreign and native armies just get worn out from fighting and decide to get along, intermingle, intermarry, until, ultimately, they can't tell themselves apart from each other.

Susan is experiencing more good days, days where she feels almost like a civilian, than bad. She's getting things done, getting out of the house (except on bad days). Let's see what this new doctor comes up with. I'll report back, via this blog, after her visit to him next week.