I had a

I had a

Which means I can't have

Which means I can't have a stress.test at 1 PM today. I didn't think of it until Sat when staff staff reminded me.

My diajysis schedule has been

My diajysis schedule has been changed to Mon-Wed-Sat this week. The clinic is closed on Thu, Thanksgiving. M-W-F is S-Tu-F.

In the 1st hour at

In the 1st hour at dialysis this morning my heart rate dropped to 46 Then 45

10:35 AM I am at

10:35 AM I am at my Thursday morning dialysis,

I have been up most

I have been up most of the night reading IF YOU LIVED HERE, I WOULD KNOW YOUR NAME by Heather Lende. A friend lent it to me.

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Vagaries of hospitalization, a patient's view

I am working on my post for my The Old Man "series" for The New York Times local blog, The Local, covering my hospital stays and what I have learned from them about navigating the vagaries of hospitalization from a patient's point of view.

10:30 AM At dialysis with

10:30 AM At dialysis with less than an hour left on my 3 Hour 45 minute session.

3:40 PM I signed my

3:40 PM I signed my discharge forms and 5 minutes later I am sitting in front of the hospital waiting for my ride home.

From the hospital - Sunday, November 16, 2009

Please note: I will be frank with the issues surrounding my medical care at St. Barnabas Medical Center (SBMC) and it may seem at times that the negatives outweigh the positives, but they do not. I choose SBMC as my hospital because I get superior care there. I discuss the problems to assist in making this an even better place for patients, and to give other patients an example of actively participating in one's own care. If a patient cannot actively participate by her or himself then I strongly suggest that the patient have a personal patient advocate to assist them in dealing with the issues that arise in the hospitalization of the patient.

It's 2:20 AM and I am sitting on the side of my bed typing on my laptop and waiting for one of my favorite night nurses to show up for her two o'clock rounds to take my vital signs: blood pressure, pulse, temperature, and oxygen level. I have just looked up the side effects of the inhaler drug, albuterol, and entered the information in yesterday's post.

My night nurse came by before 2:30 AM and said I was doing fine, and she had wanted to let me sleep a little longer. They have monitors at the nurses' station that show the heart waves from the monitor attached to my chestthe data transmitted wirelessly. I told her about this website and said I would give her the url after she indicated interest. I had clicked on The Old Man link (on the upper left side of this screen).

After she left I went to make a cup of tea. I had saved a lemon wedge from an earlier meal. The pantry with water, a microwave, a frig, and a drawer full of condiments and teabags is down the hall and patients are allowed to use it.

As I took my hot tea out of the microwave, I noticed blood around my IV access on my right wrist. I finished preparing my tea by squeezing the lemon wedge into it and then went to the nurses' station where I asked for my nurse and showed the nurse at the station the dried blood on my wrist. She checked with my nurse—they have a hi-tech communication system for talking to each other here—and learned she was on her break. There was no reason not to, so I decided to wait until she returns rather than request immediate attention from the nurse on duty ... and came back to my bedside to drink my tea and continue writing this post.

By 4:30 AM I had my IV replaced. Because I don't have good access veins in my right arm, and they can't use my left arm because of the dialysis access, getting any kind of a stick—the insertion of a needle for drawing blood or an IV—can be something of an adventure in minor pain. But this time the nurse who did it was competent and the discomfort was minor. It wasn't my night nurse. My night nurse cleaned me up and then asked for assistance from another nurse.

At the end of the procedure I realized that I should not have had the tea. The cardiologist on duty Sunday had ordered a procedure for Monday that required me to stop eating and drinking at midnight. I'll just have to tell them that I had three-quarters of a cup of tea between 2:30 and 3:30 AM.

I slept until 7:40 AM, then at 8 AM a tech came to draw blood. She had to get my nurse to shut off my Heparin drip. My night nurse came . . . nice! The tech left saying she would be back in a few. They have to let the Heparin clear out before they can draw my complete lab set.

Then at 8:15 AM a respiratory tech came by with an Albuterol treatment. My day nurse, who looks like another great one, met the tech at the door to the room. My nurse asked what the treatment was for. When she found out, she told the tech that I would refuse the treatment. I had told my new day nurse my Albuterol story. The tech was pleasant but she had to hear it from me. I told the tech I fit the patient described in the drug info as who shouldn't have Albuterol, and I could not understand why they were trying to give it to me. I am going to have this conversation with my doctors. The tech told me in an apologetic tone that if the order didn't change she would have to come back at 2 PM and listen to me again. Note: I am going out to the nurses' station and have them put Albuterol on my list of allergies.


At 8:25 AM a different tech came and drew my blood. She checked with my nurse on how long my heparin drip had been off. My nurse cleared me to have my blood drawn.


In full gear at my bedside on the morning of Monday, November 16, 2009.

It's 9:25 AM and my new day nurse is proving to be another good one, as my night nurse told me she would be when I came out on shift change this morning to check on the transition.

9:45 AM: I didn't have breakfast and my nurse doesn't know what is scheduled for me. I certainly don't know. What I do know is that I am not going to have stents put in my heart arteries without a long discussion. This is the first time I have been kept this deeply in the dark.

The lung specialist came by and I told that I was not pleased with having an Albuterol treatment prescribed.

My IV started leaking. I called my nurse and she came in and tightend the connection at the needle, cleaned me up, and said I was good to go.

10:05 AM: My backup nephrologist came by. I told him that I didn't want any lung related treatments until after the tests were complete and analyzed AND the results explained to me, the same as I told the lung specialist.

10:30 AM: My primary cardiologist came and is discharging me with a nitro prescription. He canceled my breathing test and will do it as an outpatient.

Then my nurse came by and gave me my medications to take. There were a couple of pills that I didn't know what they were for. My cardiologist explained one, a different name for Pepcid. I will have to ask my nurse about the other.

Then my backup nephrologist came by and told me that my potassium was high, 5.8. I remarked that I didn't know why that was, I had only been eating hospital food and they have me on a Renal diet. He ordered a medicine (Kayexalate) that pulls the potassium out of my body. He offered to give me a couple hours of dialysis, but I turned that down, opting for the medicine. Note: I have since read the literature on Kayexalate. I should have chosen dialysis. But I have had nothing but positive experiences with the medicine, and it what was always given me when I went to the ER with high potassium levels (5.0 +) before going on dialysis.

Now I just have to wait for the potassium medicine and then go through the final discharge process including taking the IV needle out of my right wrist and the monitor off my chest.


Sitting on the side of my bed midday Monday, waiting to begin the discharge process.

Before 3:00 I took monitor off my chest and laid it on my bed to turn in later.

The order of the medicine to pull the potassium out of my body was placed at 11 AM and it was given to me at 3 PM. My discharge is equally delayed. Note: This is an example of how understaffed hospitals are becoming. IMHO.

I signed my discharge forms at 3:40 PM and 5 minutes later I was sitting in front of the hospital waiting for my ride home.

From the hospital - Sunday, November 15, 2009

Please note: I will be frank with the issues surrounding my medical care at St. Barnabas Medical Center (SBMC) and it may seem at times that the negatives outweigh the positives, but they do not. I choose SBMC as my hospital because I get superior care there. I discuss the problems to assist in making this an even better place for patients, and to give other patients an example of actively participating in one's own care. If a patient cannot actively participate by her or himself then I strongly suggest that the patient have a personal patient advocate to assist them in dealing with the issues that arise in the hospitalization of the patient.

Here I am in full gear a little before 6 AM in my room in St. Barnabas Medical Center (SBMC). Taken in low light with my cellphone.

I woke up at 3 AM to urinate. I still pee a little over a liter a day.

Woke up for good around 4:30 AM. The nurse came and took my blood pressure (BP) at 4:45. It was 13?/80 Pulse 49.

At 4:55 AM there was a Code Blue.

There was a 2nd Code Blue at 5:20 AM, then a nurse said, "We've now had three." I was walking morning laps.

A cardiologist from my cardiology group came by around 6:30 AM and did a brief examination. It was the same doctor who saw me in the ER shortly after I got there Friday evening. He had also come by yesterday—Saturday—but before I was so heavily engaged in taking notes. I told him that since getting the nitro, I haven't had any pain in my chest. He said he was going to talk with the lead surgeon in the group tomorrow—Monday—about what can be done.

And I forgot to record the time they took my temperature ... it was normal, but I didn't write it down and now I have forgotten what it was. ... the vagaries of growing old.

"They" did an EKG around 8 AM.



Here I am in full gear around 8:15 AM in my room in St. Barnabas Medical Center (SBMC). Taken in better light with my cellphone. That's my IV dispenser on the pole.

In the next 15 minutes, my breakfast tray came, "they" drew blood for labs, and my day nurse came around.

My day nurse left a little before 8:30 AM saying she would bring back my meds. 8:35 and she is back with them. She is one of my favorites from my previous stay, so all should go well today.

By the way, one of my favorite night nurses from the previous stay was working our section last night. It was good to see her and talk with her a little.

OK, the story of my morning meds. I take a phosphorus binder which can also affect my other medicines, limiting their getting into my body from my digestive system if the binder is present. So the rule is, I have to wait one hour to take the binder after I have taken other medicines, and I have to wait three hours after taking the binder to take other meds. This makes for a relatively complex schedule that I have learned that I must monitor because no one else does. It is a constant hassle until it straightens out ... which usually happens when a nurse works with me for more than one day.

So my breakfast is here and my morning meds have not been straightened out. When I explained to my day nurse ... well, as I am writing this she came back with the news that I can take my morning meds (which affect my blood pressure and heart rate, and because my heart rate is hovering around 50, I wanted her to check with the cardiologist, who then approved it). I took the medicine a couple of minutes before 9 AM. I will be able to eat and take my phosphorous binder a little before 10. The important point—for me— is that I had to be actively participating in this discussion to get the sequence right.

Between 10:30 & 11:00 AM my primary nephrologist came by. We talked about my case and he affirmed that the cardiologists are in charge. I mentioned to him that my cardiologist had referred me to a lung doctor, and he immediately referred me to another specialist who was in fact in the hospital at the time.

The lung doctor came by and briefly interviewed me. He said he would check out my xrays. I now have a lung doctor whom I will have to see once I am discharged.

A little after 11 AM the cleaning person came by to do a "thorough" cleanup including dry and then wet mopping our floor. She apologized for not being able to come by yesterday because "it was so busy." I hadn't noticed.

It's 11:30 AM and I am going to get cleaned up.

My IV dispenser started beeping as I was finishing cleaning up in the bathroom. It was due to a low battery. I had left it unplugged too long. I didn't figure it out, when I should have, but my day nurse did and we plugged it back in. I unplug it to take it with me when I walk away from my bed because I need a continuous IV of Heparin solution.

Lunch and my midday meds came a little before 12:30 PM. My pulse was 55 so I took the medicine to help control my heart beat and ate part of my meal. I will finish my meal and take my phosphorous binder a little after 1 PM. Planning and monitoring some kind of consistency in taking my meds is primary to my health care.

I finished my lunch and took my phosphorous binder at 1:20 PM.

My day nurse came in and informed that I would going to nuclear medicine for imaging of my lungs that afternoon.

Around 2:40 PM the transport person came and got me and took me on a transport "stretcher" to nuclear medicine. I was there until approximately 3:45 PM when another transport person brought me back to my room.

While in nuclear medicine I had two scans, ventilation and perfusion. The first image scanning process—ventilation— involved breathing a radioactive "gas" into my lungs for approximately 5 minutes, and then having them imaged over 20 minutes. The second image scanning process—perfusion—involved having a liquid radioactive solution injected in me through my IV in my right arm, and then having my lungs imaged for 10 minutes. (See Radionuclide lung imaging.)

Dinner went well and I had eaten and taken my phosphorous binder by 6:45 PM.

Around 8:30 PM my night nurse came in and she was that favorite of mine that was working in the section the night before. (See above) That was a most pleasant surprise, and we bantered a bit about my care. She took my vitals: blood pressure, pulse,temperature, and oxygen level. All were normal ... for me.

Then around 9 PM a technician came in and said she was there to give me a breathing treatment with an inhaler. This was a surprise for me because I had not discussed it with my new lung specialist. I asked her what drugs she would be administering and she told me there were two, and one of them was albuterol, the drug which I think was the most likely cause of my heart racing and my second trip to the ER from dialysis on Saturday, October 31, my birthday.

Here's what Drugs.com says in part about albuterol:

Before using albuterol

You should not use this medication if you are allergic to albuterol.

If you have certain conditions, you may need a dose adjustment or special tests to safely use this medication.

Before using albuterol, tell your doctor if you have:

* heart disease, high blood pressure, or congestive heart failure;
* a heart rhythm disorder;

My Note as I write: This is the first time I have read this level of detail about albuterol, and it really, really makes me wonder what is going on! I need to find out why they prescribed albuterol to me in the first place without testing me—when I am obvioulsy a heart patient—and THEN why my new lung specialist repeated the mistake. Now, they might have a rational reason, but I have yet to hear it, and this series of events clearly demonstrates the need for us patients to be active participants in our medical care.

Needless to say I refused the inhaler treatment until I had a chance to discuss it with my doctors.

My night nurse came in and agreed that I should not be taking the treatment in this situation. She then tucked me in and said she would be back at 2 AM.

From the hospital - Saturday, November 14, 2009

Please note: I will be frank with the issues surrounding my medical care at St. Barnabas Medical Center (SBMC) and it may seem at times that the negatives outweigh the positives, but they do not. I choose SBMC as my hospital because I get superior care there. I discuss the problems to assist in making this an even better place for patients, and to give other patients an example of actively participating in one's own care. If a patient cannot actively participate by her or himself then I strongly suggest that the patient have a personal patient advocate to assist them in dealing with the issues that arise in the hospitalization of the patient.

I am in the St. Barnabas Medical Center (SBMC), a hospital with heart issues complicated by my kidney failure and dialysis. I am texting here using my cell phone.

I don't use my cell phone for the complete message, just as a diary note that I can then go back and edit, as I am doing know.

I had been talking with a friend of mine about using various video and camera functions of my laptop and cell phone to maintain an electronic diary-type journal, and blogspot.com makes it easy.

Here are some notes from today:

I had to ask for breakfast and lunch today, my first full day on the floor. I got here around 6AM from the ER. Room 2315A. I had a minor altercation with my day nurse over not getting breakfast. Her first response was to blame my admitting doctor for not writing the order. I jumped all over her because I had asked the night nurse as soon as I got on the floor to check on getting breakfast and she said she would. If the night nurse had come back and come back and said their were no orders from the doctor, I could have called him myself.

Before starting breakfast I called and asked about my medicine that I take with my meals, a phosphorous binder to help manage answering the phosphorous level in my body for healthy bones. The person answering said something like "OK." By now I should have known to follow up, because when I finished breakfast and the medicine still hadn't arrived, I went out to the nurses station and learned it hadn't even been ordered yet. I reminded my day nurse that the medicine didn't do much good if it wasn't taken with the meal. She, ov course, agreed.

Lesson learned: Not getting fed can be a downer in a hospital at meal time and not getting your meds properly can be harmful to one's health. So always check on your food and medicine orders as soon as possible when arriving in a new nursing section of the hospital.

The relationship with my day nurse—to her credit%mdash;began to improve immediately after our run in over breakfast.

I went to dialysis for three-and-a-half hours from 11:35 AM to 3:05 PM plus transit time. I weighed 74.4 at the start. My dry weight is 73.5. They set the dialyzer to take off 1 liter. These are all things I have to pay attention to, and each session go over the treatment process with my primary care technician. At SBMC they are all Registered Nurses (RN).

My day nurse said she would hold my lunch for me so I would have it when I got back from dialysis. But when I did get back, my lunch wasn't there. My day nurse explained that she had called down to dietary to say I was going to dialysis and dietary had taken me out of their computer. By the time she figured out what had happened lunch preparation was closed. Dietary was going to send me an early dinner, which they did—getting here just before regular dinner time. I also asked for and got a second dinner that was delivered a little after regular dinner time.

I was beginning to wish I had requested in the ER to be sent to the section with 2302 where I had been the last time I was here. It was as good as it gets, from my exoperience—which is mounting.

Later ...

Around 9:20 PM I have turned off my cellphone keypad sound so I wouldn't disturb my roommate as I texted ... but I forgot to turn off my alarms and the 6 AM alarm went off the next morning as my roommate slept. I did the appropriate thing and cursed softly.

The "blood person" came in a few minutes after midnight and drew some blood. It was a very good stick. "Stick" refers to having a needle stuck in your body for some medical purpose. There is a wide range of talent in the art of sticking patients. This person drawing my blood told me she had 15 years experience after I told her I thought she was very good at it.

It's 20 minutes after midnight and I can't sleep. I am having too much fun texting to this blog from my cellphone.

I seen to be doing OK. They are adjusting my meds. They gave me two doses of sublingual nitro and put a nitro patch on my chest in the ER yesterday to increase the blood flow to the heart. Now they change the patch twice a day.