Showing posts with label FSGS. Show all posts
Showing posts with label FSGS. Show all posts
5.09.2011
FSGS Sucks
This blog started out as a way for me to document my pregnancy and Izzy's growth, and our family life in general. Along the way, I've documented some of the struggles with my kidney disease, but the purpose of this blog keeps me from being completely real about it. I mean the nitty gritty details. So in order for me to have an outlet, and to hopefully share my experience with others, I've created another blog to document my kidney disease. It's called FSGS Sucks (catchy right? :). I'll still document about the BIG things here, including my participation in the clinical trial, but I'll save the mundane and whiny details for my new blog (and there are PLENTY :) Warning....I share A LOT.
3.09.2011
More funky funk
I got my most recent test results back last Friday. Needless to say, they were surprisingly bad. My protein has shot up from 7.6 grams to 16.5, my albumin is around 2, and my creatinine is 1.06.
I've been mulling this over for days, and I've gotten nowhere. Don't know what to think....don't know what to do...don't know even what to say anymore when people ask. I say "I'm waiting for my kidney's to fail", and they look at me strangely. But it's true. That's what I'm waiting for at this point. This damn FSGS is PISSING ME OFF! I'm not sad (thank you Welbutrin and Lexapro)...but I'm PISSED at everything this disease has taken, and will take, from me.
I've stopped taking Prograf. It was preempted by the awful (yet completely unsurprising) experience with our new mail order pharmacy company that my insurance/work is shoving down my throat). I'm weaning off of prednisone still...have about another month or so to go.
The most ridiculous thing is that the doctor I saw at The Cleveland Clinic LAST NOVEMBER FINALLY called me...on Friday. He may be a fantastic nephrologist...top of his field, but his bedside manner could use an overhaul. Needless to say, after reading my biopsy samples, he agrees with everything that's been done so far, but would recommend me going back on prednisone. When I asked him why, after going on it already at 70mg/day for 6 months, did he think trying it at 125mg/every other day would yield different results, he said, "I don't know if it will. But why not give it a try. It's safe". He seems to be completely convinced that I will experience no side effects by taking it every other day. Here's the thing...he doesn't have one shred of data to back that up. There is absolutely NOTHING that can convince me that I won't experience those awful side effects.
I've spoken with my nephrologist at length on Friday and Monday, and I still have no answers. And I'm tired of it. Just tired. Every time I do labs I think, "This is it. Now I'll have an answer." And it NEVER EVER happens. There's always something else they (they being the medical establishment) throws out there. My neph is no different...I really like him as a doctor, so please don't miscontrue...he's just doing his job. He said, "What if it works?" And that's the kicker. That's what they keep throwing out there. And that makes people like me feel like fools if we don't try ONE MORE THING. And if my kidneys fail then it'll be all my fault because I didn't try this toxic medication ONE MORE TIME. I freakin' hate it. I've tried the drug, it didn't work, but I'd be CRAZY to not try it again...doesn't make a bit of sense. So what the hell am I supposed to do?
The only reason I'd even think about trying it again is if Joacim would agree to having another baby. That's the ONLY reason at this point. Remember earlier when I said that I just felt that I'd be OK through pregnancy? Well, that's shattered. Done. Gone. It would be irresponsible at this point to try to bring a healthy baby to term....LOTS of risks to a fetus...let alone me. And this drug would have to provide a miracle for me to even think about trying to conceive. It was different when I was spilling 5 grams, but 16.5 is a whole different level, and it's just not safe. So I'd have to take prednisone for 6 months (assuming it put me into remission, then wean off for another six months, and then wait another six months to see if I remain in remission. Do the math. I'd be pushing an age where I'm not sure I'd be comfortable having another little one. I know that physically it's possible, but maybe not for me. Kidney disease takes a lot out of me, and it's unlikely to get better.
So, again, what the hell am I supposed to do? I'm looking to anyone for some perspective...not ADVICE. What am I missing? How can I interpret this differently? Please understand how terribly grateful I am for Izzy...I cherish that little girl, but please also understand how I grieve for the brother or sister that Izzy will never have. That doesn't make me a bad person...that makes me human.
Now my neph is talking about putting me on blood thinners because my risk for clots is rising. This can't be good. I can't bring myself to look up the drug for fear. I just can't deal with it right now.
The depression is growing, but I'm aware of it. I'm going to start seeing my therapist again...try to make sense of it all. There's just so damn much to think about, and I need some help sorting it out and putting it in to perspective. So Judy, if you're reading this, expect a call very soon :)
And if anyone has some perspective...some sage words...some happy thoughts, please, comment here. I could use a rally :)
I've been mulling this over for days, and I've gotten nowhere. Don't know what to think....don't know what to do...don't know even what to say anymore when people ask. I say "I'm waiting for my kidney's to fail", and they look at me strangely. But it's true. That's what I'm waiting for at this point. This damn FSGS is PISSING ME OFF! I'm not sad (thank you Welbutrin and Lexapro)...but I'm PISSED at everything this disease has taken, and will take, from me.
I've stopped taking Prograf. It was preempted by the awful (yet completely unsurprising) experience with our new mail order pharmacy company that my insurance/work is shoving down my throat). I'm weaning off of prednisone still...have about another month or so to go.
The most ridiculous thing is that the doctor I saw at The Cleveland Clinic LAST NOVEMBER FINALLY called me...on Friday. He may be a fantastic nephrologist...top of his field, but his bedside manner could use an overhaul. Needless to say, after reading my biopsy samples, he agrees with everything that's been done so far, but would recommend me going back on prednisone. When I asked him why, after going on it already at 70mg/day for 6 months, did he think trying it at 125mg/every other day would yield different results, he said, "I don't know if it will. But why not give it a try. It's safe". He seems to be completely convinced that I will experience no side effects by taking it every other day. Here's the thing...he doesn't have one shred of data to back that up. There is absolutely NOTHING that can convince me that I won't experience those awful side effects.
I've spoken with my nephrologist at length on Friday and Monday, and I still have no answers. And I'm tired of it. Just tired. Every time I do labs I think, "This is it. Now I'll have an answer." And it NEVER EVER happens. There's always something else they (they being the medical establishment) throws out there. My neph is no different...I really like him as a doctor, so please don't miscontrue...he's just doing his job. He said, "What if it works?" And that's the kicker. That's what they keep throwing out there. And that makes people like me feel like fools if we don't try ONE MORE THING. And if my kidneys fail then it'll be all my fault because I didn't try this toxic medication ONE MORE TIME. I freakin' hate it. I've tried the drug, it didn't work, but I'd be CRAZY to not try it again...doesn't make a bit of sense. So what the hell am I supposed to do?
The only reason I'd even think about trying it again is if Joacim would agree to having another baby. That's the ONLY reason at this point. Remember earlier when I said that I just felt that I'd be OK through pregnancy? Well, that's shattered. Done. Gone. It would be irresponsible at this point to try to bring a healthy baby to term....LOTS of risks to a fetus...let alone me. And this drug would have to provide a miracle for me to even think about trying to conceive. It was different when I was spilling 5 grams, but 16.5 is a whole different level, and it's just not safe. So I'd have to take prednisone for 6 months (assuming it put me into remission, then wean off for another six months, and then wait another six months to see if I remain in remission. Do the math. I'd be pushing an age where I'm not sure I'd be comfortable having another little one. I know that physically it's possible, but maybe not for me. Kidney disease takes a lot out of me, and it's unlikely to get better.
So, again, what the hell am I supposed to do? I'm looking to anyone for some perspective...not ADVICE. What am I missing? How can I interpret this differently? Please understand how terribly grateful I am for Izzy...I cherish that little girl, but please also understand how I grieve for the brother or sister that Izzy will never have. That doesn't make me a bad person...that makes me human.
Now my neph is talking about putting me on blood thinners because my risk for clots is rising. This can't be good. I can't bring myself to look up the drug for fear. I just can't deal with it right now.
The depression is growing, but I'm aware of it. I'm going to start seeing my therapist again...try to make sense of it all. There's just so damn much to think about, and I need some help sorting it out and putting it in to perspective. So Judy, if you're reading this, expect a call very soon :)
And if anyone has some perspective...some sage words...some happy thoughts, please, comment here. I could use a rally :)
2.28.2011
And the funk continues.
Man, I'm just such a crabass right now. I woke up on the wrong side of the bed but I should've just stayed there. But today was the first Monday in 3 weeks that I didn't have a splitting headache, so I HAD to get up and go. I'm just sorry for anyone that had to be around me today...not pretty. This post is going to be more of me bitching...so if you're tired of hearing about it, stop reading here an wait for a happy post (which I DO hope to deliver this week)
I've not been a very good blogger lately. I walk around all the time, coming up with blog posts in my head, but they just never make it out. Most of the time it's because I've already worked through the whole thing in my head before I get a chance to sit down in front of the computer, and by that point, I no longer feel the need to write anything. Lately, it's just because of my seemingly never-ending funk.
I hate how surprised I am when I have a burst of energy. I mean, I'M ONLY 36 YEARS OLD!!! I should have bursts of energy ALL THE FREAKIN' TIME. But no. That's not my current reality, and I'm terrified that it's my "new normal" (btw...I hate that phrase, but struggled to find one more appropriate right now).
I feel like I have very few personal conversations that don't have something to do with, or don't eventually get around to, my health. I feel bad for my friends because that's ALL I seem to talk about, but that's me. That's my life right now. I'm praying it gets better...I really am.
I AM thankful that I don't have the physical pain I had when I was weaning off the meds the last time. That was horrible. But there isn't a day that's passed in my recent memory where I felt "normal". It's always something...headache, puffy eyes, exhaustion, freakishly swollen legs. I left work today to come home and prop my feet up because my calves had a muffin top over my socks by lunchtime. Laugh, because one must, but it's uncomfortable to have your skin stretched so tight. When it gets like that, the only way to make it go away is to elevate. My boss is going to see if the ergo people can come up with some way to help me elevate my feet when I need to. How about an adjustable Tempurpedic bed in my cubicle?????
Everytime something's off I wonder if it's because of one of the following: lack of sleep (from being so damn sweaty.....or a fidgety toddler sleepng in my bed), medications, kidney disease, depression, too much salt???? That's frustrated because I need SOMETHING to blame, but I want to be fair about where to place the blame. I'm hoping that the awful headaches go away now that I'm done with one of the medications. It seems as though my blood pressure has dropped a bit since stopping it, so that's great!
I'd love to tell everyone about my nightmare saga with mail-order pharmacies, but I'd just get all worked up again. I'm just going to TRY to keep focusing on the things I can control (HA...easier said that done, of course).
Man, I'm so FREAKING TIRED. And no, not a sleepy kind of tired, but a "holyfrickIthinkIcanbarelysupporttheweightofmybody" kind of tired. I know it's partly because I feel off the exercising wagon. I was doing SOOOO good, and then I got a sinus infection. That was almost a month ago. Yup, you guessed it...STILL not back to working out regularly. I did some yoga on Saturday...wanted to do some today but needed some more rest. I'm hopeful that I'll have some energy to try it tomorrow. That's the thing that seems so sinister sometimes. I want to work out to have more energy, but I need energy to work out. It's that whole chicken and the egg thing. Frustrating.
I've not been a very good blogger lately. I walk around all the time, coming up with blog posts in my head, but they just never make it out. Most of the time it's because I've already worked through the whole thing in my head before I get a chance to sit down in front of the computer, and by that point, I no longer feel the need to write anything. Lately, it's just because of my seemingly never-ending funk.
I hate how surprised I am when I have a burst of energy. I mean, I'M ONLY 36 YEARS OLD!!! I should have bursts of energy ALL THE FREAKIN' TIME. But no. That's not my current reality, and I'm terrified that it's my "new normal" (btw...I hate that phrase, but struggled to find one more appropriate right now).
I feel like I have very few personal conversations that don't have something to do with, or don't eventually get around to, my health. I feel bad for my friends because that's ALL I seem to talk about, but that's me. That's my life right now. I'm praying it gets better...I really am.
I AM thankful that I don't have the physical pain I had when I was weaning off the meds the last time. That was horrible. But there isn't a day that's passed in my recent memory where I felt "normal". It's always something...headache, puffy eyes, exhaustion, freakishly swollen legs. I left work today to come home and prop my feet up because my calves had a muffin top over my socks by lunchtime. Laugh, because one must, but it's uncomfortable to have your skin stretched so tight. When it gets like that, the only way to make it go away is to elevate. My boss is going to see if the ergo people can come up with some way to help me elevate my feet when I need to. How about an adjustable Tempurpedic bed in my cubicle?????
Everytime something's off I wonder if it's because of one of the following: lack of sleep (from being so damn sweaty.....or a fidgety toddler sleepng in my bed), medications, kidney disease, depression, too much salt???? That's frustrated because I need SOMETHING to blame, but I want to be fair about where to place the blame. I'm hoping that the awful headaches go away now that I'm done with one of the medications. It seems as though my blood pressure has dropped a bit since stopping it, so that's great!
I'd love to tell everyone about my nightmare saga with mail-order pharmacies, but I'd just get all worked up again. I'm just going to TRY to keep focusing on the things I can control (HA...easier said that done, of course).
Man, I'm so FREAKING TIRED. And no, not a sleepy kind of tired, but a "holyfrickIthinkIcanbarelysupporttheweightofmybody" kind of tired. I know it's partly because I feel off the exercising wagon. I was doing SOOOO good, and then I got a sinus infection. That was almost a month ago. Yup, you guessed it...STILL not back to working out regularly. I did some yoga on Saturday...wanted to do some today but needed some more rest. I'm hopeful that I'll have some energy to try it tomorrow. That's the thing that seems so sinister sometimes. I want to work out to have more energy, but I need energy to work out. It's that whole chicken and the egg thing. Frustrating.
5.06.2010
Not good news from my nephrologist
I had an appointment with my nephrologist (kidney doctor) today to get my test results form my 24-hr urine that I did this past Sunday, and the results aren't good. I'm at 5750 mg/24 hrs. This is after being on cyclosporine for 4 months. I expected progress...the thought that it wasn't working just didn't occur to me, so it was a HUGE blow for me today.
And when I look back at my previous results, I see that the number has actually gone UP from where I was after the last 24-hr test. Back in October of last year, I had gone down to 5100 mg from my original starting point of 5700 (OK, so it wasn't much, BUT IT WAS SOMETHING!!!).
I, at this point, don't know what to think. Or what to do. Or how to feel. Or how to process it all.
I'm a bit numb I think. I haven't cried because, seriously, I'm a pretty ugly crier :) I'm so very thankful that my doctor takes the time to explain things to me, and I can really see that he's sincere and frustrated as well. He expected results too.
At this point, we aren't going to change anything except for lower my dosage of cyclosporine. I've been having some nasty side effects from it (headaches, tingling skin, exhaustion) so I'm going to go back to the dosage I started at originally. He still thinks we'll see results, and when I asked him what made him think that when there was absolutely no evidence of this (and it's actually contrary to results) he said, "because I still have hope". I thought that was nice, honestly. But we're essentially keeping me on this drug based on nothing but hope. But hey, placebo's have worked before, right????
Next steps...well, let's see. I think he's going to refer me to some doctor's at Ohio State because he, at this point, wants a second opinion...to see if there's anything he's missing. I love the fact that he's not too proud to admit that he knows everything. Not sure when this is going to happen exactly though.
And as far as drugs...well, the shotgun is getting bigger (quoted from my neph). The next drug is cyclophosphamide. Here's a link to the Mayo Clinic website that gives some details, but here are the "highlights" (and yes, I'm being terribly terribly sarcastic):
1. Also, empty your bladder frequently, including at least once during the night (so this means that I have to set an alarm to wak me up in the middle of the night to PEE?????. As if sleep is something I have an overabundance of anyway..)
2. Cyclophosphamide often causes nausea, vomiting, and loss of appetite (geez..that sounds terribly appealing).
3. If you can, avoid people with infections. (vague, and impossible with a toddler at daycare)
4. Be careful when using a regular toothbrush, dental floss, or toothpick. (WHAT THE HELL????)
5. Be careful not to cut yourself when you are using sharp objects such as a safety razor or fingernail or toenail cutters. (ummmm...does anyone know how CLUMSY I am????? I'm going to have to wrap myself in bubble wrap).
6. Also, because of the way these medicines act on the body, there is a chance that they might cause other unwanted effects that may not occur until months or years after the medicine is used. These may include certain types of cancer, such as leukemia or bladder cancer. Discuss these possible effects with your doctor. (don't even know what to say about this one)
7. Drum roll, please....SIDE EFFECTS
More common
And when I look back at my previous results, I see that the number has actually gone UP from where I was after the last 24-hr test. Back in October of last year, I had gone down to 5100 mg from my original starting point of 5700 (OK, so it wasn't much, BUT IT WAS SOMETHING!!!).
I, at this point, don't know what to think. Or what to do. Or how to feel. Or how to process it all.
I'm a bit numb I think. I haven't cried because, seriously, I'm a pretty ugly crier :) I'm so very thankful that my doctor takes the time to explain things to me, and I can really see that he's sincere and frustrated as well. He expected results too.
At this point, we aren't going to change anything except for lower my dosage of cyclosporine. I've been having some nasty side effects from it (headaches, tingling skin, exhaustion) so I'm going to go back to the dosage I started at originally. He still thinks we'll see results, and when I asked him what made him think that when there was absolutely no evidence of this (and it's actually contrary to results) he said, "because I still have hope". I thought that was nice, honestly. But we're essentially keeping me on this drug based on nothing but hope. But hey, placebo's have worked before, right????
Next steps...well, let's see. I think he's going to refer me to some doctor's at Ohio State because he, at this point, wants a second opinion...to see if there's anything he's missing. I love the fact that he's not too proud to admit that he knows everything. Not sure when this is going to happen exactly though.
And as far as drugs...well, the shotgun is getting bigger (quoted from my neph). The next drug is cyclophosphamide. Here's a link to the Mayo Clinic website that gives some details, but here are the "highlights" (and yes, I'm being terribly terribly sarcastic):
1. Also, empty your bladder frequently, including at least once during the night (so this means that I have to set an alarm to wak me up in the middle of the night to PEE?????. As if sleep is something I have an overabundance of anyway..)
2. Cyclophosphamide often causes nausea, vomiting, and loss of appetite (geez..that sounds terribly appealing).
3. If you can, avoid people with infections. (vague, and impossible with a toddler at daycare)
4. Be careful when using a regular toothbrush, dental floss, or toothpick. (WHAT THE HELL????)
5. Be careful not to cut yourself when you are using sharp objects such as a safety razor or fingernail or toenail cutters. (ummmm...does anyone know how CLUMSY I am????? I'm going to have to wrap myself in bubble wrap).
6. Also, because of the way these medicines act on the body, there is a chance that they might cause other unwanted effects that may not occur until months or years after the medicine is used. These may include certain types of cancer, such as leukemia or bladder cancer. Discuss these possible effects with your doctor. (don't even know what to say about this one)
7. Drum roll, please....SIDE EFFECTS
More common
- Darkening of skin and fingernails
- Loss of appetite
- Nausea or vomiting
- Diarrhea or stomach pain
- Flushing or redness of face
- Headache
- Increased sweating
- Skin rash, hives, or itching
- Swollen lips
Oh, and here's another good one...
"Cyclophosphamide may cause a temporary loss of hair in some people. After treatment has ended, normal hair growth should return, although the new hair may be a slightly different color or texture."
Ok, people. This is a CHEMOTHERAPY DRUG. There's just no way that I can take this. Seriously..they better come up with something.
THIS. SUCKS.
11.15.2009
Steroid update...not such good news...
I had an appointment with my nephrologist on Friday. I knew the news wouldn't be so good because I had my lab results already.
When I started this journey again, my 24-hr protein was ~5800 mg. After 17 weeks of being on steroids, it's only dropped to ~4700 mg. Not stellar progess when you consider that I wanna be below 500 mg. Soooo, what does all this mean? Well, I'm not totally sure right now. It's possible that my initial diagnosis of Minimal Change Disease may not be correct. I knew this to be a possibility from the get-go...but since I responded to steroids so well the last time (according to my doctor) we thought that was it. Now, since I'm not responding this time, we're not so sure. See, when they did the kidney biopsy originally, it's possible that I had a different kidney disease then, but the biopsy needle didn't hit the right spot, so they diagnosed me with MCD. The other kidney disease (and the one I might have now) is called FSGS, or Focal Segmental Glomerulosclerosis. Here is a link to some more information about it.
Sooo, the plan is to start weaning me off of steroids immediately, as in today. I'll drop by 10 mg for 2 weeks, then another 10 mg, then we'll slow the taper to 5 mg every 2-3 weeks to prevent steroid withdrawal. Once I'm down to a low level (5-10mg) I'll start on a drug called cyclosporine. I'm still researching all of this, so I don't have a lot of answers right now, but I do know that the whole moon face/buffalo hump/apple belly/diabetes crap should subside (but I'll still have to work like hell to get the weight off). However, hair growth is a side effect (sounds great, right :). Guess there's a trade-off for everything, and I'll take this one at this point. Personally, I know this doesn't sound like good news, and it isn't, but it's good news for me to get off these steroids. I hate them...I hate ever single waking minute that I'm aware that I'm on them, and I won't miss feeling "thick".
I'm also going to get another kidney biopsy in December. I'm trying to get it scheduled for the week before the week before Christmas (December 16, 17 or 18). That way, I have PLENTY of time to recover from it. I WAYYYY underestimated how painful it would be and overestimated how quickly I would recover! Not this time....my friend. The really bad thing is that I will have to spend the night in the hospital, and this will be my first official night away from Izzy (which I hate...I wanted that decision to be on my terms...not because of something like this). Guess I gotta cut that invisible umbilical cord at some point.
So, that's what I know. I can't jump to too many conclusions until I have the biopsy results back. And I know that this swelling won't go away until next year, but I know it'll go away, and that's positive for me.
When I started this journey again, my 24-hr protein was ~5800 mg. After 17 weeks of being on steroids, it's only dropped to ~4700 mg. Not stellar progess when you consider that I wanna be below 500 mg. Soooo, what does all this mean? Well, I'm not totally sure right now. It's possible that my initial diagnosis of Minimal Change Disease may not be correct. I knew this to be a possibility from the get-go...but since I responded to steroids so well the last time (according to my doctor) we thought that was it. Now, since I'm not responding this time, we're not so sure. See, when they did the kidney biopsy originally, it's possible that I had a different kidney disease then, but the biopsy needle didn't hit the right spot, so they diagnosed me with MCD. The other kidney disease (and the one I might have now) is called FSGS, or Focal Segmental Glomerulosclerosis. Here is a link to some more information about it.
Sooo, the plan is to start weaning me off of steroids immediately, as in today. I'll drop by 10 mg for 2 weeks, then another 10 mg, then we'll slow the taper to 5 mg every 2-3 weeks to prevent steroid withdrawal. Once I'm down to a low level (5-10mg) I'll start on a drug called cyclosporine. I'm still researching all of this, so I don't have a lot of answers right now, but I do know that the whole moon face/buffalo hump/apple belly/diabetes crap should subside (but I'll still have to work like hell to get the weight off). However, hair growth is a side effect (sounds great, right :). Guess there's a trade-off for everything, and I'll take this one at this point. Personally, I know this doesn't sound like good news, and it isn't, but it's good news for me to get off these steroids. I hate them...I hate ever single waking minute that I'm aware that I'm on them, and I won't miss feeling "thick".
I'm also going to get another kidney biopsy in December. I'm trying to get it scheduled for the week before the week before Christmas (December 16, 17 or 18). That way, I have PLENTY of time to recover from it. I WAYYYY underestimated how painful it would be and overestimated how quickly I would recover! Not this time....my friend. The really bad thing is that I will have to spend the night in the hospital, and this will be my first official night away from Izzy (which I hate...I wanted that decision to be on my terms...not because of something like this). Guess I gotta cut that invisible umbilical cord at some point.
So, that's what I know. I can't jump to too many conclusions until I have the biopsy results back. And I know that this swelling won't go away until next year, but I know it'll go away, and that's positive for me.
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