On Steroids

 40 mg a day

Yesterday, walked to the Whitney Museum to see their Biennial. Then walked to the film forum to see the movie “Miracle”.  Then walked home.  12,679 steps.  And

The Museum

The Movie

On the street

And feeling good today   

Paradox … Enigma

I have an active disease and need medication to stay alive. The disease is ANCA Vasculitis  and the medications are prednisone, a steroid and Rituxan a cancer treatment medication.  The Vasculitis was first officially diagnosed in June 2021 after a kidney biopsy. December 2021 I went into remission possibly only due to medications, Prednisone and Rituxan. Doctors don’t know what caused the disease. They don’t know what brought it back. They know, profess to know, and or just accept that medications are the reason. I have to believe that too. It’s been my experience. So I’m back to this treatment plan Prednisone and if that’s not enough a 6 hour slow IV of Rituxan.  

But there are side effects:

PREDNISONE:

Fluid retention 

High Blood Pressure 

Problems with mood swings, memory, behavior, confusion, delirium 

Upset stomach 

Weight gain with fat deposits in your abdomen, face (moon face), and back of neck

Elevated pressure in your eyes (glaucoma)

Clouding of the lens of your eyes ( cataracts)

High Blood Sugar (diabetes)

Risk of infection 

Thinning bones

Suppressed adrenal gland hormone production that may result in a variety of signs and symptoms, including severe fatigue, loss of appetite, nausea, muscle weakness

Thin skin, bruising, slower wound healing

I’ve experienced fat deposits in neck and face and abdomen and need medically prescribed calcium and magnesium 

. . .

RITUXAN

Can result in serious, including fatal, infusion related reactions within 24 hours 

Severe mucocutaneous reactions, including fatal reactions

Progressive multi focal leukoencephalopathy (PML) including fatal PML

For god’s sake it’s enough, right.  Why go through it: just live with the consequences of the life you’ve chosen.  

Ah, yes. But there’s nothing like another day.

It’s back

 ANCA Vasculitis has resurfaced in my lungs with increased ground glass opacities and I’m on increased steroids, 40 mg. I feel like James Whale’s ‘Frankenstein’ :”Steroids … Good” ( if you don’t know who James Whale is check out the remarkable film ‘of Gods and Monsters’.

Steroids have got me moving again in more ways than one.  Got to check on the long term side effects of it cause I really like it. 

Had to get back to writing to expressing to catching the moment.

Jan 6th hearing seems to be having a moment that may impact for change.  They have tv not talking about Trump supporters but Fascists and the violence of Fascists. Very important distinction.

Got to run.  Literally not physically. Not there yet. 

Tired

 Not writing lately because of exhaustion.  Trying to push my self out of this.  Like going to the Museum of Natural History to see the exhibit on gems and minerals.  Went 3 times over two weeks to take it all in. I can tell you ice is a mineral and that minerals are necessary for our existence.  Think of salt. Ice is a mineral because it is naturally occurring, solid, crystalline and uniform in composition.  There are more than 5000 minerals on earth.  Then I went home to bed. 

Feel this is a little sloppy as a presentation.  Tired.  Above is part of a giant Geode.  

Around the Metropolitan Museum of Art

 

1. 

Lots of Rembrandt portraits

And precious artifacts 

Extraordinary wealth for such a small country.  

They were traders and among their cargo were slaves.

Anyway

 My brother, Jack, Jackie, John Patrick Joseph Dolan, passed away sometime during the night of Oct. 18th in his sleep.  He had type 2 diabetes.  Partially related to his franchise business with Pepperidge Farm.  I say partially because diabetes is an illness that can be managed with diet and exercise.  I see now I am already moving into judgements about my brother.  It's hard not to.  He's my brother and I love him but it wasn't always easy.  

Anyway, there is a lot of history, 77 years, painful at times.  Not least of all in the difficulty in communicating with him.  As an adult he seemed to want to be left alone.  Outside of a joke or a jibe I don't think I ever knew what he thought.  I could go into his story, our story, but I would be the one telling it and I have little understanding of it.

Anyway, his remains were cremated.  There will be no more of his braggadocio, his wonderful sense of humor, his company too seldom enjoyed. 

At one point in his life he had a sailboat and lived on an inlet to the ocean.  I have a photo in my bedroom of my nephew Michael alone on a sailboat.  Let me believe they are together now.  And.  In our last conversation Jack asked if 'it', an afterlife, was possible.  I said yes to him then.  

Anyway, what else did I have, to give to my dying brother.        

Doctored

The Primaries

Lally               Rheumatology

Oks                   Pulmonology

Gorodnitskiy     Cardiology

Holstead            Hematology

Rosenstock        Nephrology

Lebovics            ENT

Nagler                Urology

Let's take a look at Dr. Nagler, he is: 

Chair of the Sol and Margaret Berger Department of Urology of Mt. Sinai Beth Israel

President of Beth Israel Medical Center

Professor of Urology @ Icahn School of Medicine at Mt. Sinai

Recipient of Columbia University's Award of Excellence

ACMI Urology Award

First Prize for clinical research in the AUA prize essay contest

AFS Urology Prize

John K Lattimer Award

Russell Lavengood Award

President of the Society for the Study of Male Reproduction

President of the Society of Reproductive Surgeons

Coedited 4 books on Male fertility

There is more but certainly that is enough for a man that looks to be about 50.  He is thoughtful, attentive, responsive to questions and listens.  So when he suggested that I double the Flomax I had questions.  It caused dizziness initially and now it's doubled.  The side effect is here.  So I may go back to the walker.

When Doctor Rosenstock, kidney specialist, started me on Losartan for my blood pressure [high blood pressure causes damage to the kidneys not just the heart, so lowering the blood pressure is very important] there was dizziness which is a side effect and the dizziness was such that I fell 3 times [no damage done].  5 to 10 days was how long the side effect should last and it did.  It has abated.  My blood pressure was for the first time below 120/70.  At one point it was 112/58.  Really good!  

  I've picked myself up and now have gone on to the issue of Nocturia.  When I take the water pills for the edema I am up about 4 times a night to void.  So Dr Nadler wants me to double the flomax to relax the muscles of the prostate and aid in voiding the bladder so I won't have to get up as often and then won't feel so tired.  

But my issue about the tiredness has always been the anemia.  My blood count is at 8.  Nephrology, my kidney doctor, Dr. Rosenstock, thought it was caused by fluid in my lungs because I also have shortness of breath.  So he ordered an x ray.  That came back negative.  Thankfully he also gave me the name of an hematologist.  I saw Dr. Holstead [young guy; grew up in Nova Scotia; Canadians are reported to be very nice and he is].  That was Wednesday afternoon.  Dr. Nadler was Wednesday morning.  That's when I got the increase in the flomax from Urology for the prostate from Dr. Nadler for the nocturia not the anemia.  According to my chart I have about 18 diagnoses like nocturia, anemia, HTN, CHF, COPD, ANCA Vasculitis, Dyspnea, Acute Kidney injury [I think a number of these are duplicates or medical side effects].  

If you are having trouble keeping up.  I empathize. 

To continue

The hematologist, Dr. Holstead explained that the kidneys manufacture erythropoietin which prompts the bone marrow to make red blood cells.  He took 4 vials of blood [I should have kept a record of all the blood that has been taken since this started because it's unbelievable].  I'll meet with him next week and if erythropoietin is needed I will get it injected every week until my blood count is at 11.  If that is not the issue it's back to the general consensus' treatment option: 'it takes time'.   

Time, indeed.