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:
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”.