Reflections on a weekly commute …

Each Thursday afternoon that I can, I catch the 3:43 PM NJ Transit Midtown Direct from Maplewood to NYC Penn Station to go to the Creative Expressions Group from 5 to 6 PM at the Urban Pathways “low threshold” program in the Travelers Hotel on the southwest corner of West 40th St. & 8th Ave.

Here are a set of photos, helping to “organize” my reflections on the weekly commute to West 40th St. & 8th Ave.

The 3:43 PM NJ Transit Midtown Direct to NYC Penn Station
arriving in Maplewood.

I come up into the NJ Transit section of NYC Penn Station when I arrive.

I stop for coffee — small, black, co cream, no sugar — at Seattle’s Best Coffee located in the NJ Transit section of NYC Penn Station.

I catch the C or E local subway trains from NYC Penn Station to the next stop at the Port Authority at West 42nd St.

Vendor on the northwest corner of West 40th St. & 8th Ave, across the street where I come up out of the subway at my destination. That’s the Port Authority Bus Terminal across 8th Ave. in the background.

I am in the Creative Expressions Group meeting, Thursday, May 7, 2009.

After the Creative Expression Group meeting, walking south on the west side of 8th Ave somewhere below West 40th St., heading back to NYC Penn Station to catch a Midtown Direct train back to Maplewood.

The New Yorker Hotel, 481 Eighth Avenue, New York, NY, 10001, near Madison Square Garden & NYC Penn Station, on my way back.

Looking down West 34th St from 8th Ave outside Madison Square Garden & NYC Penn Station.

Banner drapped on the northeast "corner" of Madison Square Garden at West 34th St & 8th Ave.

Hot dog vendor and disabled person outside Madison Square Garden & NYC Penn Station on the SW corner of West 34th St & 8th Ave.

Inside NYC Penn Station.

My volunteer efforts though minimal, are a main source of inspiration and motivation for me as I engage my world during this period of my life. My three main efforts are with the Creative Expressions Group, with friends for 2 hours a week on Monday afternoons at the Community Food Bank of New Jersey, and helping a friend with her work as a member of the Ethical Culture Society of Essex County. I mention these efforts to encourage others to also become active to whatever extent they can in the volunteer activities of their communities. I find it deeply rewarding.

Let’s clear THAT up!

I am staying at the Fresenius dialysis center in Union, NJ for my dialysis treatment. There are some incentives to thinking about switching … but I was so happy to see the staff — the nurses and PCT’s (Primary Care Technicians) — on my first day back. They know my quirks and we have long since worked out the kinks in my medical care there.

The staff at DaVita in Federal Way were professional, friendly, and accommodating … but there is something about a personal relationship like getting stuck with 2 large needles twice a week that builds a bond of trust … and I am not the person to break that off easily.

But I took away from DaVita a positive impression.

A quickie …

Went to Seattle/Federal Way, Washington, from April 29 to May 6 — yesterday — to visit my kids, grandkids, and great-grandkids. While I was there I had my dialysis at DaVita Federal Way Community Dialysis Center, 1015 S 348th St, Federal Way, WA 98003-7078. Phew! That was an eye-opener. They had chairside TV viewing screens with central DVD capability AND wifi for my laptop. Plus they recycle the dialyzer for the individual patient … a process I am going to research.

Here I am at the DaVita Dialysis Center:

Catching up on Wednesday, April 22nd

Monday, I rented a car at 9AM, went to see my new nephrologist at 10:15AM, then went to my second appointment with my vascular surgeon at 12PM, and was basically done for the day.

Tuesday, I went to dialysis from 7 to 11AM approximately … actually stayed until after 12 noon because I didn’t apply enough and I bled a little … so they redid the top bandage. Yes, Virginia, after they take out the two dialysis needles from the inside of my upper left arm, they apply bandages. I take the bandages off later that evening and then apply heat in the form of a hot water bottle wrapped in towels for an hour or so. I can do this because I can feel the heat. Ny nurses and PCT’s (Primary Care Technician) tell me this can be danerous for diabetics because they can’t feel the heat.

Tuesday afternoon and afternoon I laid around, recovering from dialysis. I think the only regular Manhattan adventure will be going to the Creative Expressions Group on Thursdays.

Today, Wednesday, I got up with good energy and began working on my blog. I added the twitter, flickr, and Steese Review feeds.

Diary entry for Sunday, April 19

Sunday, April 19th, was a fairly high energy day. This would be confirmed the next day when my new nephrologoist informed me that my hemoglobin count was back up above 11. This was to be expected. The aftermath of Saturday’s dialysis was not.

On Thursday, April 16th, I learned my Epogen dose had been increased to 6,000 units from 4,000 units. This was undoubtedly because my hemoglobin had dropped under 11 the week before.

Anyway, Sunday was a good day. I got up, did some household chores before going to Ethical Culture Society for the 11 AM program — arriving late and leaving early.

On the way home from ECS I drove around Maplewood taking photos of the trees in bloom, then posting them to my blog, the Steese Review.

Afterward I hung a new ceiling lamp in the kitchen.

Then after dinner we watched a movie downloaded from Netflix about the horros of the Spanish Inquisiton perpetrated on the local Jews.

Dialysis, Saturday, April 18

Today — Saturday, April 18 — was another bummer in post-dialysis.

I weighed in for my dialysis session at 77.1 kilos (kilograms) around 7:10 AM, and, after being assigned Machine No. 0, I arranged with my PCT (Primary Care Technician) to take off 2.4 liters — liters having a one-to-one equivalency with kilograms because it would be bascially water that was being removed … plus the impurities, but those are inconsequential in monitoring my weight for the dialysis process … from my pov.

To give you some background, my “dry weight” is currently 75.0 kilos. That is my dialysis body weight target. On Thursday I ended the session right on 75.0, so when I came in today at 77.1 kilos, it meant that I had put on 2.1 kilos .. liquid weight I would try to get back off. But I wouldn’t be shooting for 2.1 because during the dialysis session they would be adding — “they” say — approximately one-half kilo in intravenously as a saline solution … and I probably would have another 8 ounces of liquid by mouth … and I was familiar with the way Machine No. 0 operated.

For example on Thursday, I weighed in at 76.9 kilos and, after being assigned Machine No. 0, I arranged with my PCT (Primary Care Technician) to take off 2.2 liters. This is the 1.9 above my dry weight (76.9 – 75.0 = 1.9) plus 0.3 to “adjust” for the way Machine No. 0 processes the “extra” fluids. And when I weighed out I had hit my dry weight target exactly at 75.0 kilos.

Back to today: Everything was going along smoothly until I came to the end of my dialysis session and my PCT sat me up. I immediately knew I was having trouble from my blood pressure dropping. During the session I recline in the chair and even sleep. It is when they sit me back up that my blood pressure drops — if it is going to — and I feel the adverse effect. I get light headed, a headache starts, and I feel dizzy … as if I would keel over if I stood up.

This has been happening all too frequently since early March — the time when I was later to find out, my hemoglobin was dropping below 10.0 to 9.7 and 9.4 in the first two test of the month. 11.0 to 12.0 is the target range. It is the main reason I am changing nephrologists and even seeking another — which would be a third — opinion. Just to up the ante, I am on both Plavix and 81 mg. low-dosage aspirin. I have found out on my own that a drop in the hemoglobin count could signal internal bleeding for patients on those drugs — especially older patients like myself. I confirmed this with my Primary Care Physician. Needless to say, this is a matter of some concern for me.

Continuing with today: After experiencing low blood pressure at the end of my dialysis session past the removal of my two dialysis needles — so if I wanted intravenous saline solution, I would have to be stuck again — I asked for an 8 oz cup of chicken soup mix. My clinic nurses and PCT’s had taught me that this soup would restore some salts to my body and boost my blood pressure. What is more, just before coming off dialysis, I asked for a cup of ice cubes because my mouth was dry. Now, with ice cubes I was aware that I could alter my calculations for hitting my end body weight target … and with the 8 oz cup of soup adding about 225 grams … or 0.225 kilograms.

Some more background: I had started my 4 hour dialysis session at approximately 7:15 AM. My session ended at approximately 11:15 AM. The PCT sat me up from my reclining position, and then when I complained about the effect of an obvious drop in blood pressure, the PCT laid me back again and confirmed that my blood pressure was indeed in the 90′s over 50-something. She then took out the dialysis needles and let me rest. I had experienced basically the same thing at the end of the session on Thursday, but then I was able to rest a little and walk out to the car when my blood pressure went above 100-something over 50-something.

Today when my blood pressure didn’t improve and actually dropped into the 80′s over 40′s, I asked for the 8 oz cup of chicken soup mix. This was around 11:40 AM.

Finally a little after 12 noon I felt — and my blood pressure confirmed — strong enough to ride in a wheelchair over to the scale … where my end weight was 75.3 kilograms … just about perfect for for Machine No. 0 calculations, plus a couple of ice cubes, plus 225 grams of soup.

I then had to be pushed in the wheelchair out to the car for my friend to drive me home. At home I spent the entire afternoon on the couch in the living room, slowing regaining my energy. It’s 10:50 PM as I finish this, and I am finally feeling halfway decent.

I will have a lot to talk about with my new nephrologist on Monday morning.

I’ll get back to you.

Taking rational control of my medical care …

I received this message from a friend … just when I needed it:

Hope day by day you will be feeling a little better all along the way!  So, you’ve had developing anemia for months now and nobody told you.  In my experience, this kind of thing has happened quite often.  I got Hodgkins Disease when I was 29 years old, again at 31 and again at 36.  Dealing with doctors alone, I lived, but, alot of rough going.  Since then, I’ve been through severe osteoarthritis, a total knee replacement and heart condition.  Each time, I knew I needed someone with me to act as representative to the doctors.  I found the doctors regarded me as their patient who should just do what the staff wanted me to do. The patient is not supposed to have an opinion, or come up with any of their own treatments.  There is hell to pay when they do.  UNLESS the patient has family or friends (even rotating) to come do the talking on an as needed basis – to tactfully present the problems and ask the questions on the patient’s behalf. To courteously put the medical staff on notice that you have a representative who is watching.  To collect the blood test and other test results.  Very good idea to take them home with you – you get to look things over.  They become accountable.  I can’t describe exactly how proprietary doc’s are with patients.  Then, factor in the money equation, and you’ve got a real dilemma.  The friend/relative needs to come right into the examining room with you and to be there for each conference.  Now that ___ does that for me, I feel better.  I know for certain that some rather dangerous procedures have been prevented because, really, they weren’t necessary and with a witness there, the doctors don’t push so hard.  Believe it or not, this note wasn’t about ME!  Even though it WAS all about ME.  I pray for you daily and certainly wish a return to vigor for you.

I am getting a new nephrologist (kidney doctor) to manage my End Stage Renal Disease (ESRD) and dialysis. I had come to an impasse with my current nephrologist — current until on or before May 7 — over getting the information I felt I needed to maximize my quality of life.

The second time I learned that I had reached a nadir (low point) in my hemoglobin (HGB) cycle weeks after its occurrence, I confronted my nephrologist with it. His response was that he couldn’t remember the first time. Now … let me tell you … that did not heighten my confidence in him. The first time had been back in August (2008) and my HGB had dropped to 8.5. I knew something was going on because I couldn’t walk very far, and climbing even a few steps tired me out. When I got the HGB test results back well after the fact, I had a heated discussion with the good doctor requesting that I get my bloodwork results in a timely fashion. He assured me I would upon my request, and even called the Clinic Administrator over to emphasis the guarantee. For him to now say — in April, 2009 — that he didn’t recall that event, gave me good reason to not only seek a second opinion but another nephrologist to manage my care.

The HGB test reflects the red cell content of the patient’s blood. The lower the HGB the worse the anemia. The treatment “protocol” prescribed by my current nephrologist caused a hemoglobin/Epogen roller coaster of a cycle. Epogen is administered until HGB is something above 12.0, then stopped until it dips below 11.0. I assume the idea is to reduce the highs and lows as much as possible to stay as close to the 11.0 to 12.0 range. The important aspect from my — the patient’s — pov is to know when the curve reverses direction — especially when it heads down — and — whenever it is below 11.0 — which direction it is headed, up or down. Because — for example — if it is below 10.5 and still headed down, I do not want to be planning any heavy duty activities.

And now that I am writing about the hemoglobin/Epogen cycle, and researching it, I am learning what appears to be some important information, information that is new to me. For example, “Epogen is made from human plasma (part of the blood) and may contain viruses and other infectious agents that can cause disease. Although donated human plasma is screened, tested, and treated to reduce the risk of it containing anything that could cause disease, there is still a small possibility it could transmit disease.” -http://www.drugs.com/epogen.html

Another example from the same website: “Before using Epogen, tell your doctor if you have:

…

* cancer;

…

If you have any of the conditions listed above, you may need a dose adjustment or special tests to safely use Epogen.“

I have prostate cancer. We’ve never talked about how Epogen affects my cancer. Maybe my current nephrologist has that factored in. It would be reassuring to know.

Another thing, my current neprologist is also the Medical Director of my dialysis clinic. I never though about it before, but doesn’t that have a built-in conflict of interest? What if the staff at the clinic have questions about the medical care provided my nephrologist? With whom would they raise questions? Does the Medical Director have input to the staff’s performance evaluations?

You know, I was seemingly going along comfortably from August — and after having the discussion on getting timely information — when I started on the up-swing of the hemoglobin/Epogin cycle. It wasn’t until I had already passed through the NEXT nadir — the zenith, or high point, of HGB 14.3 was reached on January 21 (Epogen had been stopped by this time), then 13.6 on January 28, 12.1 on February 4 (after which Epogen wass restarted)  11.4 on February 12, 11.0 on February 19, 10.8 on February 26, AND 9.7 on March 5, 9.4 on March 12, then back on the upswing 10.6 on March 19, 10.6 on March 26 … that I was given the results of the March 5th and 12th tests on March 31 — more thatn 3 weeks after the 9.7 result, and more than 2 weeks after the 9.4 result … and then only after I got into an argument with the section nurse when he was administering Epogen because I didn’t understand why I was getting the dose amount he was administering, and I asked for a printed cumulative report of my bloodwork results dating back to January 1st … which when I saw the 9.7 and 9.4 results, led to a heated discussion with my curent nephrologist regarding the need for a second opinion … which in turn led to his response of deep hurt after sensing my mistrust in his care.

I don’t think it is asking too much to expect that my physician would be proactive in discussing my prospects as my body chemistry changed course. I think it would help me make the most out of my life, as well as help avoid problems … like planning to go to the city for a late night event when I have just gone below HGB 10.5. And yes, I had been proactive in asking every week for the results of my bloodwork testing … never getting a report of HGB below 10.5. Note: 10.5 seems to be my “fatique limit”.