Thursday (the 21st), I woke up and took the first of three syringes filled with contrast for my CT scan. I can't say it was pleasant but it wasn't the most awful thing I've drank, either. The little side effect of diarrhea was unfortunately one of the ones I had. Sweet.
I finished my last one around 12:20 p.m. and headed out for the test. I met my husband at BMC and he went in w/me for a bit. They started the IV, put me into the scanner, took a pic, pulled me out and injected the contrast. The gal warned me I would get very hot very fast. What they didn't tell me was that it usually starts in your crotch. When it felt like my hooha was on fire I thought, "That's interesting," and just relaxed and waited for the heat to rush over me. Suddenly my heart started racing and it felt like there was a huge weight on my chest. I didn't panic--thought maybe it was normal side effects--but when the recorded message told me to "take a breath" I had a very tough time doing so. Nevertheless, I was determined to finish the scan. One of the techs came back in to check on me and I told her about my heart racing. She said it was normal. I then told her about the weight on my chest. At first she tried to say it was normal as well...like a panic attack, yet I knew better. After living w/panic attacks and anxiety for a year and overcoming them, I could definitely tell the difference. For one, I wasn't scared--hadn't been scared at all--and even though panic attacks do make you feel like you are dying, my chest NEVER felt as if someone was sitting on it. Needless to say, the tech got the doctor and a flurry of activity began. I had the pulse ox on me, the doc was taking my heart rate, and there were several people watching and waiting. Throughout it all I remained calm despite being a tad nervous. Eventually the weight lifted and I told them I definitely wanted to finish, so they slid me back in and took the last image.
Afterwards I had to stay for about 20 mins. to be sure I was okay. The more time passed, the better I felt. The doctor did say I had a moderate reaction to the contrast yet felt it would be okay for me to have it again in the future. Can't say that I agree w/him on that one. While I did my best to stay calm it was not fun and not something I want to experience again. Especially knowing that allergic reactions usually get worse the more you are exposed to the thing that caused the reaction in the first place.
Dr. B's PA called that morning as well and prescribed me Gabapentin (Neurontin) to try. No pain meds, though. I was put on 100 mgs. a day for one week w/instructions to increase the dosage by 100 mgs. every week until I hit 900 mgs. At first that seemed fine until I started thinking that it would be probably 6-9 wks. before I noticed any improvement in pain. That sucked. DH picked it up for me that night and I took my first one before bed, as per the instructions, and woke up the next morning feeling very tired. I also had residual "d" from the contrast and possibly from the Gabapentin. Yeah.
As Fri. wore on I became more and more uncomfortable both under my ribs on the right side as well as in my joints and muscles. I tried picking up my results for the liver CT but they hadn't been transcribed yet. Like a good little patient, I waited to hear from Dr. B as long as I could. When the pain got very bad I gave in and called. No one there on Fridays. So I called my GP--she wasn't in that day. Neither was my ortho, but I asked if they could at least give me some pain meds to tide me over. The lady who took my call said she'd look into it and then never called back.
By the time DH got home (3'ish) I was hurting big time. I finally gave in and went to the Urgent Care center. The doc checked out my CT and found out that my liver was very enlarged...much bigger than the CT done for my gallbladder back in Feb. of last year showed. There were no signs of cancer, a tumor, or blockages--yeah! Again he palpitated my abdomen and I was incredibly tender, so the doc ordered more bloodwork as well as a urine test. Then I waited. DH and the kids came down. An hour passed and everything was back. We were taken into a room and told that everything but one liver enzyme came back normal. Which was good...and yet doesn't explain why my liver is so big. He highly recommended that I not wait to see Dr. B until the middle of July and that if Dr. B wouldn't see me to get into my GP right away. The pain is most likely from the "bag" surrounding the liver. When the liver is inflammed it can cause tenderness and fullness, both of which I'm definitely dealing with. Despite his initial misgivings of prescribing me pain pills due to the nature of my illness, the doc agreed once he knew I had been on 1 a day for awhile. I was so relieved because I honestly didn't know what I was going to do if he hadn't given me any. My legs and thighs felt like someone had run over them w/a truck.
In light of all of this I am now almost convinced I have the Alpha-1 deficiency (and quite possibly the G6PD deficiency as well) and will be highly pissed if that is indeed the case, and the reason why my liver is enlarging, since Dr. B completely dismissed it. I have spoken w/another local person dealing w/liver issues and she recommended a doctor here and one in Portland. I will be calling the local one on Mon.
Mentally I'm hanging in there but it's tough. Knowing for sure that there is something indeed very wrong w/my liver and yet no reason as to why (and thus no way to know how to fix it--at least for now) freaks me the hell out. Mostly I am calm, reading as much as I can so I know what to ask now and making me feel somewhat in control, yet at times I cry because I have a gut feeling that this is the beginning of a new path for me. I have been misdiagnosed so many times, dealt w/each diagnosis the same way (reading and waiting), accepting it to a degree, and trying to learn accept life w/the new possibilities of what lie ahead. But, there was never any true concrete proof. The AS thing was the closest to being a real diagnosis, yet I was HLA-B27 negative. There is still the slim chance I have it...or at least have some sort of joint/tendon/muscle issue in the SI joints (well, that is a given w/all of the issues I have there). Yet now when you put together the Alpha-1 bloodtests being routinely low, my liver enzymes being elevated, and now the liver enlarging you have to wonder if there's something to this. I also have many other symptoms that I've had since childhood which can be linked to the symptoms of A1 deficiency.
Things that make you go "hmmmm..." I guess we'll see what tomorrow holds.
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