Thursday, October 3, 2019

A Medical Update

I have not written for a while.  I have been fighting a bad urinary tract infection that does not respond to antibiotics.  Finally it got to the point when my Infectious Disease doctor said he had done all that he could in terms of oral antibiotics (ABX) and now the time had come to admit me to the hospital and to give me intravenous ABX.  So last Saturday I went to the hospital and was admitted.  And then was treated with a hard hitting ABX...which got the current infection under control - but I was not optimistic because most of the ABX I'd been on, appeared to work at first but then the symptoms returned after a day or two off the meds. However the doctors, compelled by an impatient insurance company said that now that my labs looked better and my urine was once again clear==wrote the discharge order and I got home on Tuesday.  I still am on IV ABX administered by a homecare agency.

Of course.  My urine is once again cloudy and I have the beginning signs of a returning infection.  As my doctor had predicted, not much was accomplished by the admission.  One bright spot though was a visit by a urologist who suggested a procedure which showed promise--and my ID doc said that what the urologist had suggested may be of more importance than all the IV ABX they were using in the hospital.  So yesterday I called this urologist and made an appointment and am hoping that he can set this procedure up quickly. I have been battling these recurring infections now for  11 months and am heartily tired of them.

My suspicion is that the meds I have been taking for my autoimmune disease (RA/PsA) are the real problem.  I was on Xeljanz and had one infection after another  and finally went off of that to try a newer drug: Taltz.  and that too--I am quite sure--is behind all of the UTIs and the uselessness of the antibiotics. So far it has been of little or no use in reducing symptoms of the AI disease and it may actually be doing more harm than good.  I have one injection left (each injection lasts for a month).  My husband has a new insurance company and it is likely that we will have to do battle with them to keep me on biologics (the RA meds)...Maybe now is  a good time to throw in the towel. I have been on one med after another without significant benefit for years now. One disappointment after another with disease progressing regardless...like a steamroller from which I cannot escape.  I'm tired. I'm tired of fighting with insurance companies. I'm tired of a body that does not heal.  I have the feeling that to continue to pour in medications that cost thousands of dollars per dose, is just a waste of time and money.

Not only that, but my current rheumatologist whom I like very much is phasing out his practice in the town where I have been seeing him to a new office another half hour away from his last office - which means he will be an hour and a half hour away from my home.  Maybe it is time to let him go and just see him once a year. I don't know. I need to talk it over with him.

Where is God?
He is right here. In the midst of the fray.,,,giving me the strength minute by minute to keep on breathing and struggling.  And he is waiting to act on my behalf.  Waiting maybe for me to stop hoping for a cure or a remission.  I don't know.  I do know that I need to pray about it more than I have. I ask you to please pray for me also.  For guidance.  For strength  wisdom, healing. patience, endurance.

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