Hope everyone is having a great weekend.
WARNING– this blogpost has way TMI (Too much information) and might be pretty boring, so feel free to skip it if you want. But then again, you wouldn’t be here if you weren’t curious.
Being sent to see an oncologist last week has had me more than a little anxious, so….here’s the story so far:
At the end of January, I had an appointment to see a new primary care doctor. I had to ditch my old primary care doctor (Dr. Kuo) after 15 years, well, because I’m literally afraid of him. After he called me and screamed at me a few months ago, and that was my clue that it was time to move on. I decided it was time to move to the big city doctors at California Pacific Medical Center, if only to consolidate all of my doctors at one place – my liver doctor is there.
The new doctor asked me some questions about how I felt – what a can of worms he opened! To his credit, he took my symptoms seriously and decided to run a whole bunch of different blood tests, looking for some specific syndromes, thinking that I might be anemic. What he found was quite the opposite, abnormally high levels of iron. Because of that, he ordered another set of iron tests to make sure it wasn’t a fluke, as well as some genetic tests. Just FYI – iron tests aren’t usually performed on patients anymore, because Medicare no longer pays for it. It was only the 2nd time I’ve ever had an iron level checked.
All I have to say is that their sophisticated electronic medical records system that the patient can access is both a blessing and a curse. While some of the test results are pretty quick, some take much longer, no matter how many times I hit the “refresh” button!
Last week I returned to the doctor to get the genetic results and what do you know, not only did I test positive for one mutant chromosome for Hereditary Hemochromatosis, I had 2. The official term is a Compound Heterozygote – C282Y:H63D. Boy, do I wish I paid attention during the genetics chapter of science class!
What I found out is that this is very prevalent in those with Northern European ancestry, especially Irish. It’s sometimes called the Celtic Curse. (Apparently the Jewish last name has thrown a few doctors off track?) What this means is that I have a genetic tendency in the way my body metabolizes iron to get thrown off track, and my body has started to store iron. Well, hoard iron, more like it. When that happens, it can cause all kinds of problems – in the pancreas, heart, liver and joints. All of a sudden, a lot of the fatigue, joint problems, aches and pains, and whining I’ve been doing to doctors start to fall into place.
Untreated, it will cause cirrhosis, liver cancer, diabetes, and all kinds of other scary things. So, what’s the treatment, you ask? Well, it’s fairly easy, (or not). Bleeding. Lots of it, at regular intervals. Where are the leeches when you need them?
Here’s how it works: If you take a pint of blood from your body, your body will make a pint to replace it. When it makes blood, it needs iron, which it will draw from the iron that’s been stockpiled. (It’s called phlebotomy) It’s a long process – about a pint a week for a year or two, and then once my iron levels normalize, just 3 or 4 times a year. Simple, no?
Well, we’ll see. My primary care doctor gave me a name of a Medical Oncologist to go see. I always thought that oncologists only treat cancer, but most of them are also hematologists (blood specialists) as well. That doctor’s office called me before I even got home from the appointment last Friday, and set up an appointment for last Monday. Whew – that was fast!
So I go to see Dr. Knopf and all I can say if I was that late, that unprepared and that clueless about my job as he was about his, I would be unemployed. He couldn’t even pronounce Hemochromatosis! (He didn’t appreciate me correcting him twice). I did end up getting my first phlebotomy, though. After all the pokes I’ve had over the years, I’m completely okay with needles and bloodwork. The nurse here was the only saving grace of Dr. Knopf’s practice – she knew her stuff, and pulled 500 ml of blood out of me in no time flat. I was amazed at how much it is – if you’ve ever donated blood, it’s the same amount, about the size of a jar of mayonnaise.
“Be careful when you stand up.” The nurse said.
“Oh, I’m okay.” Silly me.
I only got as far as the front desk, and then had to be taken back to the exam room to lie down, drink some water and eat some nice salty potato chips that they keep on hand for people like me who turn white and clammy and start to wobble. The nurse kept taking my blood pressure, which at one point was non-existent, until she pronounced that I had recovered enough to make it back to my car on my own. Did I mention that my car was parked in the hospital parking garage next door? On Level 10? And there’s no elevator? I kid you not. I eventually made it up to my car safely, but what a challenge that was!
So – one phlebotomy down, about 99 more to go.
In a month, I have an appointment with my liver doctor who also specializes in hemochromatosis. I emailed him my lab tests, and now he’s busy doing all sorts of tests, including tracking down the liver biopsy I had 4 ½ years ago and doing more tests on it. What that will tell him or me, I couldn’t even begin to guess. I did decide though that I wasn’t going back to that hematologist/oncologist. I didn’t like him, and didn’t feel that he really had a clue, or cared. Add that to the prospect of having to hike Mt. McKinley to get back to my car after each phlebotomy, and I knew I couldn’t go there 100 more times. It’s creepy enough to be sitting in a waiting room full of brochures about cancer. So I fired him on Wednesday. That was fun.
So, Difficult Patient that I am, I have an appointment coming up with another Hematologist/Oncologist in a few weeks. Hopefully, we’ll get along better and this can proceed as it should.
All in all, I’m actually okay will most of this (except for part about dealing with clueless doctors).
Oh, by the way – since this is genetic, my brother, sister and the boys will be getting genetic tests as well. I have my suspicions as to who will show these genes as well, but that’s for them to tell (or not.)
I hope I haven’t grossed you out too much – but want you to be in “the loop,” since I’m not sure how it’s going to affect me. It may be a while before I’m past all of this. Feel free to let me know if you have questions or comments..