Getting used to alternative plumbing

This is the dressing.  Nurse Dereka has gotten very good at it and thank goodness we didn't know in November that it would still be operative in January!




This is the basic plumbing set-up.  Two kidneys, two ureters, one bladder.  John's left ureter is blocked.  I added this because Eliza was unable to picture this piece of innards.


When I blogged two weeks ago, I mentioned that we expected some follow-up from the physician leading the charge with John's case.  We got a call the very next day and were bidden to return to Boston on the 2lst.

  Our doctor is the elegant and splendidly named Aria Olumi and we like him very much.  This despite the fact that he is quite guarded about what might be going on with John.  He suggests that the ureter problem is probably not connected to the bladder problem, being very close to the kidney and relatively speaking very far away from the bladder.  He showed us the pictures from the most recent contrast study.  It does not look to him like cancer but it might be (his words).

So, the next step, to take place on 5 February, is to return to Boston.  On that visit they will remove the stent from the ureter and examine the flow using constrast.   If by some miracle the ureter works properly both stent and tube will be gone.   If the ureter is still constricted they will replace the nephrosomy tube but not the stent.  In that case, the kidney will simply be drained by the nephrostomy tube.  Without the stent, Dr. Olumi will be able to take a better look-- not with dye but with a scope.

We questioned him about possible alternative scenarios but he skillfully avoided saying anything speculative.  He simply told us that future steps would depend upon what he sees with the scope.  We also questioned him about the delay with the BCG chemo for the original cancer and he was reassuring that we are well within the parameters of effective treatment.

 It was a very civilized trip compared to some of the others-- an appointment at 10:15, no procedures, out by 11:30 and home before 2:00.  One might question why we had to drive to Boston at all for a consult that could have taken place by phone but then one remembers that physicians cannot bill for phone consults.  And, he did show us pictures.

In a Rut

John has become a suspender man.

Here are the opening words of one of John's recent health summaries.  "Mr. Langhans is a thin elderly gentleman"... what?  who?  Bring me the modern equivalent of smelling salts!  (that would probably be a gin and tonic) Thin, I grant you but elderly?

I last wrote on November 18th after our fourth trip to Mass General.  There the nephrostomy tube that was placed on November 3rd was not removed as we expected but replaced with a more sophisticated version.  On December 10th we returned to MGH in the expectation that the tube would be removed but when John awoke from anesthesia the tube was still in place.  So a month has passed with daily dressings and maintenance of the charmingly titled "leg bag".  Again today, with high hopes, we were at MGH and still he has the tube!  This time, at least, the Irish radiologist who did the procedure had repeated phone conversations with our urologist, doctor Olumi, who is a bigwig and the lead man on the case.  While John could not hear the discussions, the radiologist finally told John that Dr. Olumi was "going to reach out to him".

Talk about learning to be one's own health advocate!  John and I need a lot of assertiveness training before we will get anywhere with MGH.  The promise of being "reached out to" felt like a victory.   MGH gets high marks all around for medical care but each visit is a ride on a conveyor belt where the patient gets questioned, poked, prodded, medicated, anesthestized, monitored and finally spit out at the other end, knowing little more than at the beginning of the ride.  The procedures are invariably done by a radiologist and a fellow or some kind of lesser deity and they are not willing or able to discuss the details of the case.

Today we were told to arrive at 9 for a procedure at 10.  As always we took our places in the overheated and overcrowded room waiting room where the victims (I mean patients) have changed into hospital gowns and are too nervous to do anything and the"family members" stare at their various devices.  Eventually, and this can be at a time that bears no relation to the supposed time of the procedure, one is called away.  John was gowned early today and the iv put right in so we foolishly thought that the conveyor belt would move more quickly but in fact he was not actually "taken" until noon.  The only good thing is that the same procedure that twice before has required general anesthesia followed by a two hour observation period, this time required only a local so he was done by one and we were outta there!

So to sum up, there is really no change since the last time I wrote.  We do know, having read lab results online, that there is no "mitosis" going on and remembering a little bit of high school science, I think this is a good thing.  We are frustrated first of all because we don't really know what is going on or have any idea about the long range plan.  Secondly, until this situation is resolved, they cannot begin the chemo treatments for the bladder cancer that was the starting point of this whole thing.  And finally, because it is annoying for John to have endless weeks with a leg bag.  On the other hand, there are lots of people who would trade for our problems so I will quit whining and be grateful for the many blessings we have.