The last couple days at NIH were more relaxed. I only had the gallium 68 scan scheduled on the 3rd day.
Before my scan I was able to eat as normal and had a meeting with my fellow and the principal investigator for my protocol. I was thrilled to meet the Principal Investigator and see how intelligent and compassionate she is.
My fellow (the doctor who had been in charge of my direct care) did a great job of reporting all of my medical history. I like how this was done in a meeting because with me there I could explain or elaborate or correct any information while it was being passed to the P.I.
We discussed results of some of my bloodwork. I also met with a gastroenterologist yesterday (busy day, I forgot so much!) And he said that I would need to be further investigated for Zollinger Ellinson syndrome when I return home, as this is a common thing with MEN1 patients that develop gastrinomas in the duodenum. These tumours tell the stomach to produce too much stomach acid and evidently before Proton pump inhibitors were approved, I was told that over half of MEN1 patients actually died because of stomach ulcers due to the acid eating holes in the stomach!
The last time I was at NIH, my roomate was an older woman who had had her stomach removed in her teens and now I know why!!
So my dislike of the PPIs has been lessened slightly, knowing that these can be lifesaving for people with ZE or the gastrinomas. I made sure to ask about the reports of PPIs causing tumours and was reassured that those are very rare, caused by taking extremely high doses of PPIs (like 8x what I take) and for decades. I also said that I was concerned about them feeding the tumors I already had and was told no that's not what happens. ZE runs in my family so it would not even be a surprise to me if I had it - especially with elevated gastrin levels and having heart burn all the time- even on a very clean diet. While I may have to continue on the PPIs, weighing the whole risk vs. benefits, I'm reassured knowing that I've brought my Vit B12 levels up significantly with the daily sublinguals and I continue to take high quality supplements to make sure that I'm not deficient in anything.
We also discussed my high PTH levels and very low vit D levels. Because my calcium levels have not been high lately, they've decided to bring my vitamin D levels up, in hopes that my calcium won't go up too much and that it may bring my PTH levels down.
It's a delicate balance... I've not had much luck taking vit D in the past as my calcium goes up causing me issues- but I'm willing to try again just because I'd love to have a normal vit D level (amazing health benefits) and moreso, if my PTH actually goes down then I can put off another parathyroid surgery!!
Speaking of parathyroid surgeries, I learned something interesting about the autotransplant. I was told the reason they transplant the parathyroids into the forearm is so that they can take a venous sample from above the gland and below it of the PTH level to determine if it's the autograft over producing the PTH or if they should look in the neck! Unfortunately that's not an option for me so if this vit D doesn't help that I may be able to have a 4D CT scan that should be able to locate the gland! Not knowing where that gland is can be a cause for concern especially when there is bone degradation in the spine - which is what my DEXA scan showed :(
We wrapped up the meeting with an understanding that the scans would all be reviewed on Thursday and I would receive a call on Friday with the final results.
When it was time for the long awaited Gallium 68 Dototate PET scan, I knew where I was going and walked myself downstairs to Nuclear medicine. My IV was still good from the scans yesterday so I was invited into the little room to have my injection. It was in a big metal container. I was reclined slightly and we briefly discussed any sensations I might notice. It was communicated that hardly anyone has a reaction and I was used to getting the octreotide injections over the last 12 years so I wasn't really prepared for what happened next:
Once the dototate was injected I felt a flush come over my face and neck and felt like I was about to pass out so asked to be reclined in the chair. I felt a heavy feeling on my throat - so strange- and the tech was a bit worried when he said that I was very red and had red blotches on my neck. He took my blood pressure - it was very high and he said my pulse was quite low at 33bpm according to the machine. He kept taking my BP over and over - I got tired of the machine squeezing my arm so much but was happy to hear things were starting to slowly return to normal.
Then I had a weird cold feeling in a band across my abdomen and then felt quite nauseated. It took the whole hour to feel better and after they called my Dr. down to see me I begged them to let me continue as I'd come this far!!
The actual test was very easy as I've done PET scans many times before, so I just laid still as they did the imaging- maybe 45 minutes passed and I was free to go! I noticed that I felt fine when I was finished.
So I had some last minute tests and a couple re-tests that kept me busy until I was discharged the following day. I was so relieved to be able to go home.
It was quite a long day, returning to Western Canada from Eastern USA where NIH is. (I included a picture of the sky that day as the air quality at home was quite bad from the forest fire smoke!) I was a bit sad that I didn't have time to visit Washington DC this time and do some sightseeing, but they've invited me back next year for some follow up testing and I will plan extra time to do something fun for myself then. :)
Seeing my family at the end of a long exhausting day was the best gift in the world!
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