Things are not looking great healthwise. I've been urinating blood on and off for the past few weeks...We had a bit of a red herring in that my partner came down with some sort of UTI-ish illness, and had assumed that they may have passed it to me. I did my three days of Cipro (never again) had a minor improvement in symptoms. Last week I had a cystoscopy performed (as bladder diseases are not uncommon with ISM) and it came back clear. My urologist was very impressed with how healthy my bladder looked.
Two days later and it was again with urine with gross blood (and when I say gross I mean visible, not OMG ICKY!) accompanied with some fabulous back and flank pain. Like, amazingly bad.
Back to the urologist who felt it might have been an infection caused by the cystoscopy, so I did another urine culture which came back negative.
So it means it's my kidney. I don't know if it's a cyst, polyp, disease, cancer, stone, or what. My urologist wants me to have a CT-scan with contrast.
For those of you really familiar with this illness, you know how exciting that option is for me.
Since I am sick with something, my mast cells are already out of control. I've been taking more Benadryl than I have in a year to stay stable, and because of that I am even more hesitant to go straight to the CT-scan with contrast. If I were feeling more stable, I'd be all for it. But my hr/bp has been all wacky, my fatigue is intense, and my pain levels are quite high. All of these factors make me less excited to go straight to a test where there is a very high risk of anaphylactic shock...because really, who wants to go there?
I've got an appointment to see my urologist this afternoon. I am hoping that we can see if we can use the CT scan as the last resort, since in my reading I've found that certain kidney problems can be found through various ultrasound techniques, regular x-rays, and CT-scans w/out contrast. Now, to be fair, if I'm going to have the CT-scan, I may as well go all the way and take it with the contrast since that is a -lot- of radiation for a body to handle...but yeah, in general it is not the ideal option for me.
So I've got a call into my Immunologists office to get a refill on my prednisone script (the bottle of pills I have is nearing its expiration date) and am a bit of a bundle of nerves.
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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
6 comments:
sorry for your "troubles" fyi i take 1 Diflucan a week which seems to be helpful for my bladder and other masto symptoms. not sure why it helps, as the blood work doesn't show a yeast overgrowth, or whatever. good luck....
i too have had trouble with my kidneys and bladder.i have to be extremely careful to make sure i take in enough fluids. i can tell a huge difference when i drink plenty of water. also drinks like gatoraid and pedialite seem to make me feel better. it is almost like somehow we can loose our electrolytes. any way i quit trying to understand it and just try to focus on what seems to improve things. try keeping a jopurnal of your daily activity and nutritional intake. look for things that might trigger these episodes.i know that is extremely generic advise but i have found the strangest things can cause the onset of an even stranger list of symptoms.for example pizza hut pizza sauce really makes me sick every time i eat it. through journaling i was able to realize that this was a trigger food in me. what ever you do remember that you are not crazy. what we have is just so complicated and even the docs dont understand it. i dont care what the experts say i know what i deal with each day and unless they are dealing with it too they cant possibly relate. whemn our mast cells are out of wack anything can go wrong. docs dont always get it . sometimes i feel like dr apointments cause me more stress than they do good . hold your head up girl. this is probably just a masto attack and things should improve with time. i know it is hard when you start having symptoms that seem like they could be the start of something deadly. i think that happens to me 3 or 4 times a month. i have had been in agressive phases and now ism . been dealing with this crap my whole life and am not dead yet, ha, ha. i am praying for you. it never gets easy but it does get easier for you to cope with it over time.
hydroxyzine im injections , for really bad days and zanex or ativan for ordinary days, really help me control the msat cell release of histamine. i even have reactions to good news. any kind of excessive emotion be it good or bad, and also exertion cause me to have flare ups. controling my nervs helps alot. when the pain gets to be to much to bare i take a hydroxyzine injection and a sleeping pill and try to sleep it off. rest is always the best medicine though.
anonymous, chould be the cheese on the pizza...i've cut cheese completely...that's probably my number one food trigger
at first i thought it was the cheesebut then i started ordering the pizza with no sauce and dont seem to have the problems. some other tomato sauces bother me also but not to the extreme that pizza hut sauce does. i am tolerating cheese well at this point. one of my main issues is the mast cell burden in my stomach and intestinal tract cause severe malabsorbtion. therefor i have to eat extremly high levels of protien every day. low fat cheeses are a good source of lean protien for me. hey thanks for the input. iam always open to new sugestions. i would love to exchange email addresses or phone numbers. i firmly believe that it is so important for us to lean on each other in our bad times, especially since it so often seems impossible to find people that can honestly relate to what we are dealing with. just recently found bridgets blog. i am so grateful to hear that i am not alone in all this. because so often we do get treated like we are hypochondriacs or even worse drug seekers. i have been treated so badly by so many docs that i have come near to death on more than one occasion because i knew the er would not know how to treat me or would just think i wanted narcotics. on one occasion i put off going to docs for so long that i became so malnurished that my hair fell out , my nails fell off, and i didnt even know my own name. at that time my family finally found a doc out of state that was at least willing to learn about masto. if it wasnt for him taking litteraly days of reviewing my records and reasearching mastocytosis, and then willing to perform an experimental surgery, i honestly dont believe that i would be alive today. by the way dr cem akin even though he isnt my doc was extremely helpful. he is at the university of michigan. if you are not familiar with him he has devoted his life to masto research. i consider him one of the best. you can read about his work on the um web site.
glad you got the help you needed. i also see dr. akin. it is a difficult disease to deal with, as you well know
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