Today was THE BIG day.....which meant I spent a lot of time with this.
This (for those of you that don't already know) is called a bonnet, and it sits conveniently over the toilet seat so you can easily collect your urine (which is WAY better than a using a dixie cup :)
It was a fasting appointment, so all I had this morning was this.....can't describe how terribly unsatisfying this glass o' water was.
I saw this posted on Facebook today and had to steal and share.....it's too funny not to.
Safe delivery of precious cargo is muy important!!!
Blood....always more blood.....
Also a random urine sample up arrival....
....tucked away neatly in a tiny little bag. They have specimen drop boxes all over the place. It's really amazing how it all manages to work and get the labs processed in time for my afternoon appointment :)
Here is the delicious treat I rewarded myself with after I had dropped off my specimen and gotten blood drawn. This is usually the highlight of my visits to Mayo :)
Okay, so, let's get down to the nitty gritty, yes?
Well, it didn't work.
In fact, according to the numbers, my kidneys are getting worse. And I've been blissfully unaware of my numbers since last November.
This could be a temporary blip, or the actual failure I've been waiting for, I'll never know.
I'm not surprised. I kept my expectations low. Yet I was still sad when Dr. F told me. I think he genuinely was too. He said he was sorry that he couldn't help me, and I believe every word of it. I'm a puzzle that can't be "solved".
So where do I go from here? Honestly, in this moment, I have no idea. I've spent 8 years looking forward to "something", never really knowing what it was, only that I had hope. And now I no longer have hope. So that's a pisser.
I'll discontinue the infusions now, and do a follow-up in 4 months to check-in. I'll start taking potassium supplements because I apparently can't eat my way into good numbers here (regardless of the amount of tomatoes and bananas that I consume).
For those that are interested in numbers, here they are:
Albumin: 1.7g/dL
BUN: 27mg/dL
Cholesterol: 306mg/dL (LDL 183, triglycerides 190)
Creatinine: 2.1mg/dL
Potassium: 3mmol/L
Creatinine Clearance: 31mL/min/BSA (this is my GFR......magic number for transplant listing is 20)
Total Protein: 16130 mg/24 hr
So now, I wait..........I don't really want to be cheered up. I want to whine and wallow for a bit. I'm allowed at least that.
Ignorance is definitely bliss! I go back to Mayo next week and can't figure out if why I feel crappy is meds or the disease or something else that is wrong. I appreciate your sense of humor - it helps me deal too :)
ReplyDeleteI think having the sense of humor that I do is one of the things that helps me pick myself back up again every time! I'm glad you enjoy it too....wishing you loads of luck @ Mayo next week!!!
Deletehey,
ReplyDeletehaven't followed your blog/history but as much as i can tell you: fsgs has become a playground of trial & errror for ambitious medicians. it gets diagnosed way too often (think about those days, when biopsy was not routinely performed and hence patients were not subject to aggressive pharmacological therapies) and consequently a lucrative branch of medical investigation has sprouted aiming on -sometimes stupid- trials on patients, who suffer from severe drug side effects and otherwise would have a favourable natural course WITHOUT pharmacological therapies (http://www.ncbi.nlm.nih.gov/pubmed/16301760). i am a relative of a patient who suffered from fsgs and who has achieved remission merely by ignoring his disease history, keeping mental health up and trusting in alternative medicine (a. o. herbal medicine e. g. curcuma and garlic with their antiinflammatory properties). give it a try and don't lose yourself in medical routine.
While I appreciate any comments, I certainly don't take medical advice from "anonymous" people. Ignore the disease? That's probably the single most ridiculous piece of advice I've ever received in regards to this disease, besides the "asparagus soup" and "a teaspoon of baking soda". Seriously....garlic is going to induce remission??? You're not even a patient....merely a relative of an FSGS patient, and your dishing out medical advice. That seems pretty risky...offering up medical advice. Quite honestly, I think what you're recommending is borderline irresponsible. I've lived with it for 9 years...I've researched it thoroughly. You do realize that the study you cited was from 2005.....9 years ago? And, if you actually had taken any time to read my blog and my history, you'd know that, according to the study you cited, I would've been excluded in the beginning as I've been severely nephrotic for over 5 years. I've gone extended periods of time without treatment, and the result is the same. So please, don't come to my blog preaching.
DeleteHi Jenn,
ReplyDeleteI follow your blog for over a year now. I also have FSGS (diagnosed 2012), have also swallowed everything under the sun, have been a few times very short in remission but right now my protein is at 3.5g/L again. Blood levels rather ok but anyway, what do they mean if I am on 60mg Prednison right now. Once I lower that dose the fun starts again. But I have - same as you - a very good sense of humour. :)
Keep fighting Jenn, life is worth it. :)
Regards,
Manuel
Hi Manuel! Thanks for taking the time to read my blog. I'm so sorry that you suffer from this dreadful disease too, but a wicked sense of humor is immensely helpful. I'm not sure if I understand the question you asked, but just by reading it, I'm guessing that they think there's a chance your steroid resistant???? If you're on 60mg prednisone and still spilling 3.5g/L, then that's what I'm GUESSING they mean, but you really really need to go ask your doctor. Let me know what they say, k? Good luck and keep reading! I'm sure I'll have plenty o' snarky things to say as this progresses ;)
DeleteHi Jenn!
ReplyDeleteI got my new results today, 24h protein still 3.2g/L, Creatinin 1.49, GFR 92,...., I know, the blood levels are not too dramatic but that's also because of the high prednison. If I go below 30mg the levels raise again. You are right, there is a good
chance that I am steroid resistant but i was talking to my doc about that already and he wanted to try this high prednison dose for a few month. Well, didn't work. Last year I had prednison in combination with cyclosporine, did work for some time but once I reached 20mg prednosion the swelling started again. I just sent my doc the blood results, will phone him tomorrow and see what he says.
Jenn, what's your experience with this Immunesuppressive medication? I have tried Cyclosporine for a few month but had basically no side effect. But I read constantly this warnings that you can get cancer, die from pneumonia and all sorts of funny things. Is it really worth the risk? I mean ok, you safe your kidneys but maybe all other organs crash. Or maybe I think too logic. Reading your blog, it is just impressive what you have tried, I mean all this medications. It is a long journey. :)
i just got my fsgs diagnosis. all i can say is: bleh
ReplyDeleteCompletely agreed that you should wallow if you need to. The 'be brave' has to come on its own time, yes? I am always inspired by how well you have been dealing with this... I honestly find it really tough.
ReplyDeleteI am wondering how you are dealing with what you call 'no longer having hope'.
I have been reading your blog for a while now and probably commented as Anon a couple of times.
Was diagnosed in 2006 and mostly was treated with ACE inhibitors due to the early catch.
Been taking treatment for a past year and a half with pred and MMF, no results :( Doctors say cyclo etc cannot be used due to existing damage, so I am fast reaching the leave it to progress state. Sigh.
I am sorry your kidney function is worsening. I'm glad you believe your doc. Those of us who allow ourselves to feel, truly carry the disappoints of each and every one. I think you can only fake not feeling.
ReplyDeleteI've been reading your blog for about a year and a half, and I am so disappointed for you. Came tonight because I'm looking at my fat swollen feet, feeling tired and just off and your post always make me laugh..because this disease..it truly sucks. My last Dr. visit 2 months ago was a good visit, I don't know what could have changed in 2 months. But, I'm praying for you and rooting for you. -Marquetta
ReplyDeleteI've been following your blog since my husband was diagnosed with FSGS last month. Kudos to you for keeping a sense of humor through all this - its not easy. In starting my journey to educate myself on this condition, I've come across numerous (and sometimes contradictory) sources of information that only highlight my belief that FSGS is a spectrum disorder and every person truly is different. I came upon this recent article (Nov 2013) from Massachusetts General Hospital and I thought I would pass it along to you. In a nutshell, it seems there may be potential that abatacept which is usually used in the treatment of rheumatoid arthritis, may be beneficial to those with treatment-resistant FSGS. If this is something you haven't tried yet, and you are inclined to give it a go, perhaps it might be useful to speak to your doctor about it. I wish you improved health and happiness.
ReplyDeletehttp://www.massgeneral.org/about/pressrelease.aspx?id=1640
And I am a jackass. How did I miss your entire entry on abatacept infusions? Sorry about that. Apparently my ignorance comes from not reading properly. In any event, I thank you for sharing your experience and I sincerely wish you improved health- I am cheering you on, despite my lack of insight :)
Deletehi i was just hoping you are doing well...
ReplyDelete