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. 

 

Rheumatology

 Had my first visit with Dr Lally a rheumatologist.  

Main points: 

my disease was caught early and my treatment at Lenox Hill has been the best.  So my prognosis is good. For my diet she recommends the Mediterranean diet and exercise.  My fatigue is partially the disease and partially the anemia and in time both will correct themselves and I will improve.  There may be lapses but generally I will get better.

Blood tests and Urine tests were done yesterday and some of the results are now available.  

The main issues: 

BUN is 31 [blood urea nitrogen should be between 5 and 25 if kidneys are working well],  Creatinine is 1.8 [another kidney waste product that should be between .4 and 1.2], and hemoglobin is 8.6 and should be 13.3 to 17.2 [a sign of anemia].

The results show the impact of my kidney disease.  Not a lot of change from the last test of a month ago.  It is going to take time and what I am feeling today, the dull ache and being out of breath with a little exertion is all a part of this disease and they will get better.  One marker, 'C Reactive Protein', which shows the prevalence of inflammation and the chances of a heart attack is .7 and the normal range is 00 to 1.0 so that's a good sign.

Next week I have visits with ENT and Nephrology and I need to see about going to the dentist for a cleaning.

Listening to my body is the key to wellness

 That is the title of an article at ancavasculitisnews.com.  A woman who has been dealing with this disease for 17 years [yeah 17 years ... surprised me and got me interested] writes about her fatigue, the dull ache and difficulty getting out of bed.  

'I must listen to what my body tells me.  If it sends signals of being tired or achy, I shouldn't overextend myself that day.'  

During her illness she has been able to do some extraordinary things like hiking 10 miles through the Ozarks.  So when her body is achy she takes a day off knowing tomorrow may be better.  She also states that she needs 10 hours of sleep a night.  17 year success story definitely worth listening to.  

I would like to get 7 hours of uninterrupted sleep but with this prostate that's unlikely.  

Going forward, gently.

Frail, tired, under assault

 'I'm 77' I said to Bruce who I had just met over the phone.  

It started with an organization called The Vasculitis Association that I discovered on line.  I emailed them and a Shannon Morgan emailed me back with websites to visit and information on the association and a 'resource' located in Brooklyn namely Bruce, who has and is going through ANCA Vasculitis just as I am.  Though he likes to call it Wegener's Disease after the man who discovered it or should we say uncovered it.  His name, Wegener, has been removed because he was a Nazi doctor who Bruce said was Mengele's boss.  Bruce knows this because his wife is a twin and the nazi doctors experimented on twins to learn how they could grow the 'master race' quickly.  His wife's twin sister did not survive.

He is very much a New York, Brooklyn character over the phone.  Rapid fire delivery, New York accent and a very blunt direct chatter.  He hates doctors.  They all suck.  He temporarily lost vision in one eye because of them.  So he hates all doctors except Dr. Lolly.  She is a Rheumatologist at the Hospital for Special Surgery.  He went on and on about how wonderful she is and that I need to be seen by a rheumatologist.  I got an appointment for Wednesday.

But today it's about my energy level.  When I mentioned to Bruce how tired I was all the time and that I was 77 he responded that my low energy was related to my age.  That I have to consider my frailty.  Maybe but this tiredness is deeper than muscles.  I walk but tire after a few blocks.  If I push myself for another half hour I feel better and have been able to do 9000 steps without feeling like I will collapse on the sidewalk.  

It doesn't seem like it's tiredness as I've know it in the past.  There is a feeling throughout my body that is very different than anything I've felt before.  It's similar to a throbbing you might get when you've overworked a muscle but I feel it all over my body.  That too goes away after a while.  

I get that I have a disease that is attacking my vital organs and there will be consequences but how strange this is.  'It' attacks.  I'm 'frail'.  I'm tired.  I fight and it subsides.  I'm being challenged to push myself.  Is this my treatment, my treatment plan to: fight my frailty, fight my age, fight my tiredness, fight my tingling muscles, fight this disease and push. 

From ABBA:

'Like a roller in the ocean    life is motion    move on

Like a wind that's always blowing    life is flowing    move on

like a sunrise in the morning    life is dawning     move on

And somewhere lies the answer to all the questions why what really makes the difference between all dead and living things, the will to stay alive.' 

trite, simplistic, true

When your body attacks itself

 That is the title of an article in the latest issue of AARP.  It's about autoimmune diseases.  

Some quotes: for 'reasons that researchers don't understand cases seem to be rising precipitously, especially among persons 50 plus.' with 'more than 100 conditions' like psoriasis which I had for years before the vasculitis.  '23.5 million people in the U.S. have an autoimmune disorder' such has type 1 diabetes, MS, Crohn's disease, rheumatoid arthritis, celiac disease etc.

Work is being done to address this issue but it is difficult when there is still no idea of the cause.  

'In the past 30 years we have had more than 80,000 chemicals approved for use in this country.  We have a totally different diet with processed foods, additives and fast foods.  We're more sedentary.  There's an obesity epidemic.  We have a different pattern of infectious agents, even pre-COVID-19 with more emerging yearly.  The environment is noisier and there are more stressors.'

I also wonder what is going on in our bodies as we reach our 50's.  Does that make us vulnerable?  

https://www.hopkinsmedicine.org/health/conditions-and-diseases/hormones-and-the-endocrine-system

That's a website to Johns Hopkins research on hormones. What stands out for me is the Adrenal glands production of corticosteroids which are important in fighting inflammation.  The production of those hormones reduce with age.  Less available in our bodies to fight the effects of inflammation.  So our immune system is weakened and we become susceptible to autoimmune diseases.  Then we get steroids to fight the effects which may or may not work but may cause complications like diabetes and infections.

  And so:

'we beat on, boats against the current, borne back ceaselessly', endlessly fighting our mortality.     

ANCA Vasculitis

 What the hell!  

Why not get back to writing about what's happening in my life.  Hence the title, that is what's happening in my life ... kidney disease, which may have been caused by inflammation or may have been the cause of inflammation.  At least that's what 2 of my doctors have told me.  The disease attacked my kidneys and my lungs.  My kidney doctor says inflammation caused it and my pulmonary doctor says the disease, idiopathic [ unknown origin ] caused inflammation.  And that's the biggest problem I have right now in dealing with this disease the conflicts surrounding origins and treatments.

Let's look at inflammation.  According to the www. 'inflammation is the body's way of signaling to the immune system to begin repairing or getting rid of damaged tissue, as well as a way of defending the body against harmful invaders such as bacteria and viruses.  It does this by increasing its white blood cell count and surrounding the area.'

That does sound a bit like what happened.  Except the white blood cells attacked healthy tissue and couldn't stop.  If that's what happened what was the bacteria or virus that it is defending my body from?

On the other hand the vasculitis could have triggered the inflammation but that response has not been helpful to my kidneys or lungs.  

This is a new disease.  It is still being studied for causes and treatments.  Right now the treatment is steroids to reduce inflammation with antibiotics and Vit. D and antacids to counteract the steroids.  Plus IV infusions of rituxan.  Rituxan reduces 'b' cells which produce ANCA which triggers the immune system to start attacking the blood cells.

Medications are beyond my area of expertise and hence out of my control.  The other and equally vital treatment is to control my blood pressure to strengthen the organs under attack, kidneys and lungs.  I'm taking an inhaler, 'Anoro', for my lungs and they are doing very well.  I use an oximeter every day and my O2 stats are never below 97 which is very good.  My pulmonologist says the lungs are clearing up.  There is still some signs of the damage that has been done but that may improve.  I also take my blood pressure every day and that has varied between 120/60 and 145/75.  Not consistent and not healthy.  i have medications for the blood pressure.  Other factors such as environment, mental and emotional functioning,  my actions and responses are in my control and need to be addressed more fully and consistently.  Not as easy as it sounds.  My interactions with my medical support is problematic because of inconsistencies and conflicting information.

Anyway

Enough for now.  I'm in a place here where I feel like I'm swimming to nowhere.  Work on my treatment plan for this next issue.