Wednesday, November 2, 2011

Asking the right questions

This has not been a good week for a variety of reasons that I won't go into completely due to privacy concerns. Suffice it to say, I have more stuff to keep me up at night.

At lunch the other day, Josh recounted a recent visit with the doctor who diagnosed him with a non-life threatening problem. A chill went through me as I have read about this situation and its implications that could greatly impact his quality of life. I asked if Dr. Useless made him aware of these and that he might need a consult with a specialist ASAP. No, nothing of the sort was mentioned. Well he has a consult next week no thanks to me scaring the begeesus out of him but it makes me mad the lack of advice given to him. He will be armed with some pointed questions.

This summer, a good friend had a very painful, quality of life ruining problem and sought  help from her primary. The primary was able to diagnose the problem, which had no immediate cure but the situation would resolve in a few months. The diagnosis seemed perfectly reasonable but to deal with the side effects, my friend had to see a specialist. Instead of just dealing with the side effect, the new specialist disagreed with the original diagnosis and went on a very expensive, painful witch hunt for a new diagnosis, which was never made though lots of scary suggestions were thrown her way. My big question was why didn't the specialist think the primary was right? My friend never asked, just endured more speculations and useless tests. Meanwhile, the primary left the area. A few months later, the situation did resolve per the primary's prediction.

Both my friend and son are highly educated, bright people but both did not ask the right questions. Part of it was who are you to question the experts. So, Sue, since you are so quick to criticize others for failing to cross examine and second guess their doctors, certainly you never would be guilty of this yourself? Well I am, once for my own concerns and worse, once concerning my daughter's health care.

With breast cancer, there is a small window to get chemo and to kill the rogue cancer cells that might be circulating through your body. This window is even smaller with TNBC as the cells are much more aggressive and once they form over. I had just finished my two surgeries to excise the tumor and the surrounding suspicious cells, it was time for chemo. The onc thought we could delay it a month to give me time to recover. I questioned whether this was wise as it just gave those cells which according to my staging, had a 50% chance of being there, a greater chance to gain a foothold. She replied that there were studies that showed that delaying chemo one or even two months made absolutely no difference in over all survival. The question I should have asked was whether these studies were done in TNBC patients or were they just applicable for BC patients in general. Some doctors for convenience sake seem to treat all BC the same. For instance, another TNBC patient on my blog was given a script for Tamoxifen after treatment because that is what most BC patients take. But it would not do any good for TNBC patients. This patient knew to question. Well I am still alive but I think I gambled unnecessarily.

When my daughter was ten, she needed to have both of her ureters re-implanted to prevent eventual kidney damage due to this condition known as reflux, which causes the urine to back-up under pressure into the kidneys. This now is a simple surgery but not back then. She did not recover as quickly as planned and all the pain killers made her ill. It was hell. On top of that, I was pregnant and Steve had to leave to deal with his dying father. I kept finding temporary homes for Josh, which upset him greatly. At one point, they thought she had recovered enough to come home though I would need to provide lots of care. For instance, her bladder was still being allowed to recover. Her urine was shunted into two bags, one from each kidney. She had surgical drains that needed to cleaned too. I noticed right before I was to take her home, that only one bag was filling up. Shouldn't the kidneys be doing equal work? Or maybe, did they find a way to reroute all this plumbing so only one bag was needed but then why did she have two bags? I told all my concerns to the nurse. She said she would check and soon came back and said this was fine, don't worry. What I should have done was ask the doctor myself instead of trusting this nurse. I hadn't much sleep in the past week, I was tired from early pregnancy (which I ended up losing) so I wasn't as thorough as I usually am. I took her home and throughout the day. she became sicker and sicker. She was on antibiotics to prevent infections but of course, she puked them up. The one bag was not filling at all. Perhaps there was a blockage. Meanwhile my daughter was not alert at all and only capable of moaning. I took her to the ER and it was hell trying to get her re-admitted. I was correct, there was a blockage and my daughter suffered unbelievable and unnecessary pain because of it. The next morning, Nurse Incompetent Liar was assigned again to her care. I told her to tell her supervisor that I find her personally responsible for pretending to seek answers and that she needs to be reassigned. I should have insisted that some disciplinary action be taken. But part of the fault was me...I should have spoken to the doctor myself and refused to take her home until my concern was addressed. Before all of this, she weighed 70 pounds. After this, she weighed 60 pounds and was almost 5 fee tall. She was a skeleton. Up to that point, her growth curve was almost identical to that of Naomi's later on, destined to be as tall as Naomi but she is 4 inches shorter.

Another positive example of asking the right questions: Naomi was about to be discharged with Maya from the hospital. At the last second, she asked whether they had typed Maya's blood and if Maya was Rh+, highly likely, when are they going to administer the Rhogam? It is scary that one needs to watch out for all these factors.
It is pretty out still but soon a mass of cold air will hit us so there will be no more running in shorts.
Today, I will go with Naomi for a further evaluation of Maya. The initial one yesterday indicated, indeed, something should be done but today will decided just how much.

1 comment:

krisa said...

Sue, your blog today, hits home. Having questions rolling around in my head but unable to process and vocalize...the little voice we all have, but unable to listen and then act. From the time I found a lump to when my treatment started-- two months.
I hope your son has his questions answered satisfactorily.


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