I am going to rant a bit:
I have been frustrated with the health system. I go for chemo every Thursday, so I have blood work taken every Wednesday. They check to make sure my white and red cells are good and that I can tolerate treatment. This chemo that I am on is not a bugger on the white cells so I am always good to go. Once a month I have additional test that checks my blood protein levels...my IGG (Immunoglobulin type Gamma) this will tell them how well the chemo is working. My levels were just under 30 when I started and we want them to be under 5 for the stem cell transplant process to begin in April/May.
When I went for my one month check up (over 2 weeks ago) the IGG levels were not reported on my monthly test results. Doc thought they may be late..some tests have to be referred to other labs. The following week I forgot to ask for the results and the clinic was really, really busy. I got a copy this past week. The lab did not run the IGG levels. How the hell does my Doctor know if my chemo is working if he does not have this info?? Why did he not follow-up and request that when I went for my weekly test over the following 2 weeks, that they add this to my regimen?? Because your health care system doesn't follow-up!
I called the lab myself and they pulled all their records and the original requisition and they claim the IGG/IGM/IGA tests were not on the monthly requisition. I call Bull-shit! The only difference on the weekly and monthly were these protein tests. That's why there are two different requisitions! I had planned to make copies of the requisitions before I took them to the lab, but I forgot...so I can't prove they messed up. And even if I could, what difference does it make now?? So...I called the cancer clinic and reported my findings and now the oncologist has faxed new requisitions for next week. I will hopefully know then at what pace my cancer is receding on Thursday.
I am not worried about it...it will be working...I am just frustrated with the level of involvement patients must take in all aspects of their health care.
A similar situation arose with the doctors not moving quickly on getting my treatment started. I did not have symptoms of anemia or kidney damage so they really did not get into a tailspin about getting me started on treatment. They even offered for me to take a couple months to go on a trip or get through Christmas, etc. I kept saying that I had already done the trip and just wanted to get started....before I developed anemia and kidney damage.
When my MRI results came in they sure changed their tune. Although my x-rays only showed a few small lytic lesions (punched out holes in my bones from the multiple myeloma) in my skull, the MRI showed a different picture. I won't get into too much detail, but suffice it to say, I have lesions of varying degrees throughout my spine. Three of them are fairly significant -- at least I think they are -- at 9 mm. 1.0 cm and 1.1 cm across in the cervical, thoracic and lumbar regions...so I've got all areas covered. I am told that your vertebrae are very strong and I should not worry, but just don't exercise vigorously, or fall, or stand on your head....LOL! BTW - I am a klutz...I fall all the time!!
On another note...the MRI also showed that the neck pain I was seeing the physiotherapist for several months for - that my doctor told me was arthritis and not a disk issue -- was the result of 2 herniated disks (in addition to the lytic lesions). With a less serious bulging disk in my lower back to add to the fun. So...this should give you an indication of my pain tolerance levels, and that we know when our bodies are out of sync and something needs to be done. We just know! Don't ignore it. Act on it and push your doctor to keep looking for the problem!! They told me if the lytic lesions were causing me pain they could do low-dose radiation. Hell, if I can live with two herniated disks in my neck for 10 months, I think I'll pass on the radiation.
Anyway -- 2 messages in this blog post....First: and Second: if you don't feel well, go to your doctor, don't accept the answer that it is nothing or we'll wait and see - push for answers and a diagnosis and a treatment plan. We all deserve to live a long, healthy, painfree life.
1 comment:
You are so very true .. I have seen it over and over .. my good friend had a doctor, who after an ultrasound, said she had gall bladder stones and wanted to do other testing .. my friend ended up in emergency, having emergency surgery to remove he gall bladder even before the next test was scheduled. Unfortunately, I have a doctor who won't listen to me and will only address one thing at a time per appointment .. if he won't look at multiple things happening at a given time at a single appointment, how can he diagnose ???
You must advocate for yourself and push the medical profession at every step. It shouldn't be this hard!!!
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