Discouraged

Received the report from Mayo Clinic.  Not much  to report.  Their only recommendation at this point is to consult with surgeon regarding the intestinal looping that may be causing intermittent, temporary bowel obstructions.  I meet with primary doc to discuss next Friday.

After three iron infusions, my blood levels have increased ever so slightly.  Not enough to bring me to even the low end of normal.  Blood tests next Monday will most likely determine next procedures to figure out how to improve the numbers.  Meanwhile, I am still experiencing severe fatigue, etc.

On Tuesday, I had an appointment with clinical nutrition doc.  I feel like I am being almost bullied into replacing the TPN via IV with a j-tube (nutrition is pumped into intestine via tube in abdomen).  Doc used infection scare tactics and said they wouldn’t continue TPN much longer due to risk factors.  I am against the j-tube for two reasons.   One reason I am against j-tube is that it seems so permanent and I worry that once it is in place, the medical field will consider my situation “resolved” and that will be all – no further options.  The other reason is psychological – I DO NOT like the tube going into my abdomen and held in by stitches.  The wound never heals and will always seep “fluids” which can be resemble smelly pus.  The stitches can pull and tear the skin and will need to be redone periodically.  The six to eight inch tube that hangs out will need to be covered and taped to skin (adhesives will cause skin irritation).  The “wound” will need to be cleaned daily.  The pump will need to run 12 – 14 hours a day and will not be portable (it will be hooked to an IV pole).  My insurance doesn’t cover the cost of a more portable version.  The formula can result in chronic diarrhea.

The amount of bile produced will rise and I could be vomiting bile more often than I already am.  In addition to the liquid nutrition, I will need to build in pump time for fluids to avoid dehydration.

The j-tube is simply about nutrition.  Meanwhile, I still have the esophagus issues which makes consuming any fluids impossible.

The doc who I would be consulting with regarding the surgery for the j-tube is none other than “the specialist” mentioned in earlier blogs.  Either him or go to Mayo for the surgery.  Neither appeal to me.

Emotionally, I feel incredibly discouraged.  I can’t mentally grasp the fact that I am….I can’t even find the right words to describe my foreseeable future.  Oh, I know I should be happy that I am alive and that there is the means to keep me nutritionally provided for.   But, when I think about how limited my time/freedom (not to mention finances) will be…let’s just say that it seems a bitter pill to swallow.

As much as I have hated being in limbo, at least in limbo there was hope.  It is very hard for me to write about this and I sit here with tears streaming down my face.  I am not ready to give up, financially I can’t give up.  The current financial situation is too hard for it to be permanent.  If there isn’t hope to keep me afloat then where does that leave me?

Maybe acceptance will slowly seep in but, for now, I think I need to give myself permission to grieve for all that I have lost and will most likely never regain.   I have to figure out my new path in life…I have to find “meaning” and “purpose” and I honestly don’t know where to even begin.

Return to Mayo Clinic

I am currently scheduled to return to the Mayo Clinic on July 6th.  The purpose of this visit will be to consult with a surgeon regarding some intestinal looping.  My primary care doc and I are waiting for the records from the Mayo Clinic to review before deciding that this trip will be beneficial.  It’s a 7 hour drive up so I am not sure I am willing to drive 7 hours for a 1/2 consult and then drive 7 hours back unless the records indicate that there might be actually benefit and that there is indication that a surgical intervention will be helpful.

My recent blood labs did not show much improvement from the iron transfusion conducted at the Mayo Clinic.  I am scheduled for a 2nd iron transfusion on Friday and a 3rd transfusion next Friday.  The doc here wants to split the transfusion into two infusions.  Since I have the PICC line, I will be able to the transfusion from the comfort of my own home.

I hope that these iron transfusions help as I am very fatigued and weak.  I have so much less energy and strength than usual and it is really bothersome.  Tired but sleep is very elusive/restless.

Been practicing the deep breathing suggested by Mayo for nausea.  So far, it hasn’t helped much.  Doesn’t do anything for the bile vomit.  Do not seem to have any benefit regarding the esophagus issues either.

Nothing else to report on the medical front other than my finger joints are bothering more and more.  It is probably more related to the sarcoidosis than anything else.  If it doesn’t improve I will be discussing pain management options with doc at next appointment.