I survived the lithotripsy.
All in all it was...eh. Honestly I found the BMB to be 100% more tolerable, but I do wonder if he have different tolerances for different types of pain. In my case, having needles stuck into my hip is far more preferable than being punched in the kidney a couple hundred times.
The anesthesia part went about as well as could be expected. Due to the nature of my masto, my urologist was adamant that the head of urologic anesthesia be the doctor to work with me. While he had never had a masto patient before, he'd worked with enough at risk groups in enough risky situations that he would be the best to be there if things went wrong. The only things that went wrong were that they were supposed to have IV Benadryl and IV Zantac has prophylactic pushes, however both ended up containing an unknown preservative, so they were moved to emergency pushes, along with steroids and epi.
For the procedure itself I was given a benzo (i forget which one) and a few micrograms of Fentanyl, which is generally tolerated ok by Mast Cell patients. Thankfully it was tolerated just fine by me, and while it was a teeny dose, it totally helped as I found the procedure to be really uncomfortable.
Post op was a fucking disaster, where some idiot resident wrote my post op scripts without reading my chart as every single one of them was on my list of drugs to be avoided. That meant I got to spend an additional 4-6 hours hanging around waiting for them to find someone who could write replacement scripts and to discharge me. My post op scripts ended up being Augmentin and Flomax (they were originally Cipro-which has caused long lasting tendon problems in me and Percocet - which i am allergic to)
1 day on the Flomax and I realized that was not for me. It helps you urinate (which I obviously need to do since I need to pass whatever was in my kidney) but it also lowers your blood pressure, which is something I did not feel comfortable with. Unless totally necessary, taking drugs that can markedly lower your BP aren't the best thing in the world since they can adversely effect epinephrine, should you need to administer it. Plus it made me woozy and cranky. The Augmentin is also making me feel pretty crummy, but I only have 1 more dose to go on that.
In 2 weeks I go for xrays and figure out if I need another procedure done or what. rad.
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Life with a chronic illness isn't all about spoons and complaining.
About Me
- Bridget
- I've been living with a rare neoplastic disease called Systemic Mastocytosis for a few years now. I want to use this space to detail my experiences with this illness, as well as to hopefully show other people suffering chronic illness that life does not have to be all about the "spoon theory" and limitations.
Links of Interest & More
- The Mastocytosis Society
- Mast Cell Disorders Forum
- Dr. Castells - My main Masto Dr.
- Patient Info
- My Mastocytosis Facebook Page
- National Organization of Rare Disorders - Mastocytosis
- Dr. T.C. Theoharides
- Kevin's Masto Blog
- Another Masto Blog - Great Links
- A Chronic Dose - A Chronic Ilness Blog
- Chronic Babe
- Low Histamine Diet - I Follow This
- Google Results on Mastocytosis
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5 comments:
Glad to hear you're ok. That usually happens...something seems to go wrong when your trying to leave the hospital;)
Hi!
Here's one with mastocytosis and urticaria pigmentosa. I found you via google, because i am desperatly seeking someone with this disease and tattoo :D Do you have a tattoo, because i am a little worried about possible consecuenses, if there is any.
Thank u for your answer and take care!
Piia, I have 3 tattoos, however I got them all years prior to my diagnosis. I totally want more but I have gotten conflicting answers as to whether it is safe. Because of this, I personally have not added to my skin art gallery yet, and can't honestly say for sure if I ever will.
I would suggest getting a tiny patch test if you wanted to go through it and see what happens. I'd also go to a salon where the artists will tell you what is in their ink. And premedicate since the pain of getting tattooed might set you off. And find a parlour close to a hospital in case things did go south.
I only just stumbled on this today, but to Pila -- my daughter turned 18 last week and got her first tattoo yesterday. She definitely had a reaction, and is still feeling a little "cruddy" today, but she is so, so glad she did it. She needed to have an Epipen ready, and upped her cyproheptadine all day yesterday and today, but she did do it.
I was recently diagnosed with mastocytosis by bone marrow biopsy, done through the masto clinic at Brigham & Women's in Boston... I wanted to leave a comment abut tattoos for other people with this question. I got a tattoo on my ankle a year ago now (my first and only), and the pins and needles feeling you have when you first get a tattoo have persisted, fluctuating up and down with other skin symptoms, like facial flushing. I don't have the cutaneous spots other people report. My first-hand experience, for what it's worth. It's a little uncomfortable, so while my tattoo s meaningful to me, I regret having it now because I'm afraid it may worsen over time, and for this reason, I would not get another one.
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