As of September 19th, I'm completely off all medications for my kidney disease. Wow - it feels crazy amazing! It feels NORMAL. I mean, normal 31-year-olds don't take a million pills every day, right? Normal people don't have to stress about being immunocompromised. Normal people don't have cankles when they come home from eating out because there was too much sodium. I've been in remission for over 5 months now & that feels good.
I actually did have a tiny relapse in late August/early September. I think I did anyway. For a whole weekend, I swelled. It was devastating. So I buckled down on some of the more holistic & natural treatments I've been looking into. And it helped! By the time I did labs on September 16th, I was back in remission.
Just about every day I drink the juice from one cucumber, 6 celery stalks, 4-6 carrots, 2 apples & 1 lemon. Yum yum. I also started an essential oil regiment recommended for kidney health as well as vitamins from the oils company. I've always been pretty middle of the road when it comes to traditional & non-traditional medicine. Incorporating a little of both, combined with healthy eating & exercise, has always been a winning combination for me. So far so good!
It's been 3 weeks off of meds. Normally I would feel like I'm waiting for the other shoe to drop, but I actually feel really peaceful this time. The reality is that I won't be in remission forever. But for now, I'm enjoying my health. I'm enjoying feeling normal!
Wednesday, October 9, 2013
Sunday, August 11, 2013
Test Anxiety
I saw Dr. R on June 25th & since I was still doing well I was able to drop my Cyclosporine from 150mg 2x a day to 100mg 2x a day. He told me to retest in 4-6 weeks. With our trip to Utah, it ended up being 6 weeks. I went down to the med center & did labs this past Thursday...
To back things up, I relapsed last year (weaning off prednisone) during out trip to Utah. Before I even knew I had relapsed, I started having anxiety attacks again. I started putting together that my anxiety was worse when I was out of remission. ANYHOW, I started having a lot of anxiety again in Utah (this year), and especially when we got home. I had also gained weight & was too chicken to take a diuretic to figure out it if was water or fat. (I think it might possibly be the first time in history and woman was wishing the extra weight was fat & not water).
So I headed down to the med center lab on Thursday, gave a bazillion viles of blood, some pee & waited for my results to post on MyChart. Friday, I was a WRECK. I was so anxious I could barely see straight or function. I was prematurely devastated that I had relapsed & was going to have to start ALL OVER AGAIN!
So.... then I checked MyChart around 5pm. And... IT WAS GREAT NEWS! .1G (100mg) - which is in the "normal range." Albumin (3.7) is good. Still in remission. Freak out over. PHEW.
Hoping to talk to Dr. R tomorrow & reduce my dose further. Help me out & keep on - a - prayin!
To back things up, I relapsed last year (weaning off prednisone) during out trip to Utah. Before I even knew I had relapsed, I started having anxiety attacks again. I started putting together that my anxiety was worse when I was out of remission. ANYHOW, I started having a lot of anxiety again in Utah (this year), and especially when we got home. I had also gained weight & was too chicken to take a diuretic to figure out it if was water or fat. (I think it might possibly be the first time in history and woman was wishing the extra weight was fat & not water).
So I headed down to the med center lab on Thursday, gave a bazillion viles of blood, some pee & waited for my results to post on MyChart. Friday, I was a WRECK. I was so anxious I could barely see straight or function. I was prematurely devastated that I had relapsed & was going to have to start ALL OVER AGAIN!
So.... then I checked MyChart around 5pm. And... IT WAS GREAT NEWS! .1G (100mg) - which is in the "normal range." Albumin (3.7) is good. Still in remission. Freak out over. PHEW.
Hoping to talk to Dr. R tomorrow & reduce my dose further. Help me out & keep on - a - prayin!
Friday, June 14, 2013
I've been waiting for you
Zero.
Zero...
ZZEEERRRROOOOO!!!!!
Zero is just the most perfect, glorious number. Don't you think? Well you do if you have kidney disease & you're talkin amount of protein in the urine.
I've known I was in {at least} partial remission for over a month. I hit that *magic number* (whatever it is) in early May. I know this because the last diuretic pill I took was the night we flew in to California for our Disneyland trip. I walked around for 3 days, in warm weather, eating processed food, and I didn't swell. It was AMAZING!
After I stopped swelling, I stopped taking my Lisinopril (BP medicine). Dr. R had only put me on that to help the Cyclosporine since I wouldn't take Prednisone with it. It's been so lovely to just be down to taking my little thyroid pill & then my cyclosporine.
And here I am, down to complete, 100% remission. My dr. honestly didn't think I'd quite get here because all of the studies on Cyclosporine have it paired with a small dose of prednisone. But I'm so grateful that I didn't have to stay on that pill from Hell. And now I look forward to tapering off Cyclo, as **wonderful** as it has been.
And when I say, "look forward," I mean, "Have a sick, scared, terrified feeling in the pit of my stomach."
I'm super duper excited I'm in remission but am still going through a little bout of depression that comes with every round of labs. Up until this point, I knew what I was fighting for. Now everything is up in the air. Do I keep at my current dose for a while hoping that will help me stay in remission? Do I get off this drug ASAP? Because, lets be honest, its poisoning my body. How long will I get to feel normal & healthy? When will the other shoe drop? Am I going to have to start ALL over again?
I don't know. I don't know at all. All I can do is pray & be grateful for where I am now. Which I am. Happy. Grateful. Blessed.
Thank you for all of your continued prayers.
Zero...
ZZEEERRRROOOOO!!!!!
Zero is just the most perfect, glorious number. Don't you think? Well you do if you have kidney disease & you're talkin amount of protein in the urine.
I've known I was in {at least} partial remission for over a month. I hit that *magic number* (whatever it is) in early May. I know this because the last diuretic pill I took was the night we flew in to California for our Disneyland trip. I walked around for 3 days, in warm weather, eating processed food, and I didn't swell. It was AMAZING!
After I stopped swelling, I stopped taking my Lisinopril (BP medicine). Dr. R had only put me on that to help the Cyclosporine since I wouldn't take Prednisone with it. It's been so lovely to just be down to taking my little thyroid pill & then my cyclosporine.
And here I am, down to complete, 100% remission. My dr. honestly didn't think I'd quite get here because all of the studies on Cyclosporine have it paired with a small dose of prednisone. But I'm so grateful that I didn't have to stay on that pill from Hell. And now I look forward to tapering off Cyclo, as **wonderful** as it has been.
And when I say, "look forward," I mean, "Have a sick, scared, terrified feeling in the pit of my stomach."
I'm super duper excited I'm in remission but am still going through a little bout of depression that comes with every round of labs. Up until this point, I knew what I was fighting for. Now everything is up in the air. Do I keep at my current dose for a while hoping that will help me stay in remission? Do I get off this drug ASAP? Because, lets be honest, its poisoning my body. How long will I get to feel normal & healthy? When will the other shoe drop? Am I going to have to start ALL over again?
I don't know. I don't know at all. All I can do is pray & be grateful for where I am now. Which I am. Happy. Grateful. Blessed.
Thank you for all of your continued prayers.
Friday, March 22, 2013
Results Are In
Got my latest lab results in. Most of it was good news. My protein spill is down a wee bit more - to 550mg. So that is good. Most of my other numbers are still within normal range, although my GFR (filtration rate) is lowering & my creatinine is rising... still in normal range though. A really good surprise is that my white blood cell count is back within normal range. Considering I'm on an immunosupressant & its been really low, I'm happy to have it back to normal.
The only bad news is that my albumin (blood protein) dropped by kind of a lot. It doesn't really make sense because my protein spill is so low; my albumin should go up. My dr. is kind of baffled. So I'm adding some egg whites into my diet to see if that helps. We'll repeat labs in a few weeks.
If my albumin doesn't come up, we'll have to look into other causes... more tests... possibly more illness. Sounds fun. But I really don't think its anything else. And I feel good. I still swell just a bit & the Lasix doesn't work so well because my albumin is low. But I can't complain! Cyclo has been a lot better to me than Prednisone was!
The only bad news is that my albumin (blood protein) dropped by kind of a lot. It doesn't really make sense because my protein spill is so low; my albumin should go up. My dr. is kind of baffled. So I'm adding some egg whites into my diet to see if that helps. We'll repeat labs in a few weeks.
If my albumin doesn't come up, we'll have to look into other causes... more tests... possibly more illness. Sounds fun. But I really don't think its anything else. And I feel good. I still swell just a bit & the Lasix doesn't work so well because my albumin is low. But I can't complain! Cyclo has been a lot better to me than Prednisone was!
Wednesday, February 20, 2013
Damn Immunosuppressants
Excuse the language but I'm a bit pissed off. Especially these days, I don't get too angry about my illness. I've dealt with it. But I'm allowing myself to be just a little ticked right now.
I'm getting sick- as in a cold - as in no matter what the heck I do, it will turn into a sinus infection.
Please don't give me advice on how to avoid that. I know it all. And it used to work for me... BEFORE I was on these damn immunosuppressants. My white blood cell count is too low. Like WAY too low.
I guess I should "count my blessings" or whatever that it hasn't been worse. I mean, theoretically I could end up hospitalized with some infection because of my lack of immune system.
But instead of counting my blessings, I'm just going to give myself some angry time. I really don't have time or space in my life to be sick (who does??). It doesn't fit in my plans.
Damn immunosuppressants.
I'm getting sick- as in a cold - as in no matter what the heck I do, it will turn into a sinus infection.
Please don't give me advice on how to avoid that. I know it all. And it used to work for me... BEFORE I was on these damn immunosuppressants. My white blood cell count is too low. Like WAY too low.
I guess I should "count my blessings" or whatever that it hasn't been worse. I mean, theoretically I could end up hospitalized with some infection because of my lack of immune system.
But instead of counting my blessings, I'm just going to give myself some angry time. I really don't have time or space in my life to be sick (who does??). It doesn't fit in my plans.
Damn immunosuppressants.
Tuesday, January 29, 2013
In the right direction
I had a GREAT appointment with my nephrologist today. I got the results of my labs & my protein is down to .8 grams. I was actually kind of suprised because, although I have been feeling really good, I still swell A LOT.
Dr. R wanted me to go back on 5-10mg of prednisone in November. I asked him to give me a couple of months to loose the weight. He said I had until now to either be below 1g of protein or I had to go back on. So .8g isn't super great but its under 1g! So NO PREDNISONE! Yay!
The only puzzling thing about my labs is that my Albumin (blood protein) isn't going up. That is contributing to my swelling. So I have to repeat my labs in mid-March to see if it goes up. My white blood cell count is pretty low too but, even with everything going around, I have been pretty healthy. I got that cold over Christmas that turned into a sinus infection, but who didn't? So he said he wouldn't worry about that too much.
We talked a lot about the what ifs... what if I don't get better or get worse... well he's totally on board for a new treatment called Rituxan. But I'd have to have a biopsy first to make sure its worth it. Rituxan has been really successful for a lot of people but it increases your risk of getting Lymphoma later in life. So he wants to be sure I really need it.
We also talked about what happens if I continue to get better - how soon can I start trying to get off Cyclo. He said if I'm under .5g in March, we can lower my dose & see what happens. That'd be nice!
He also wants me to do a bone scan because I was on Prednisone for longer than 6 mo. But I'm going to wait on that because my insurance BLOWS. I want to see if I need a biopsy and then Rituxan so if I need them, I can do all 3 in the same year & only pay 1 deductible for all.
Anyway, sorry - super boring - but that's the update & I'm happy! I REALLY love my doctor. He & his nurses are good to me. And I'm EXTREMELY happy that I don't have to go back on Prednisone. I hate that stuff.
Dr. R wanted me to go back on 5-10mg of prednisone in November. I asked him to give me a couple of months to loose the weight. He said I had until now to either be below 1g of protein or I had to go back on. So .8g isn't super great but its under 1g! So NO PREDNISONE! Yay!
The only puzzling thing about my labs is that my Albumin (blood protein) isn't going up. That is contributing to my swelling. So I have to repeat my labs in mid-March to see if it goes up. My white blood cell count is pretty low too but, even with everything going around, I have been pretty healthy. I got that cold over Christmas that turned into a sinus infection, but who didn't? So he said he wouldn't worry about that too much.
We talked a lot about the what ifs... what if I don't get better or get worse... well he's totally on board for a new treatment called Rituxan. But I'd have to have a biopsy first to make sure its worth it. Rituxan has been really successful for a lot of people but it increases your risk of getting Lymphoma later in life. So he wants to be sure I really need it.
We also talked about what happens if I continue to get better - how soon can I start trying to get off Cyclo. He said if I'm under .5g in March, we can lower my dose & see what happens. That'd be nice!
He also wants me to do a bone scan because I was on Prednisone for longer than 6 mo. But I'm going to wait on that because my insurance BLOWS. I want to see if I need a biopsy and then Rituxan so if I need them, I can do all 3 in the same year & only pay 1 deductible for all.
Anyway, sorry - super boring - but that's the update & I'm happy! I REALLY love my doctor. He & his nurses are good to me. And I'm EXTREMELY happy that I don't have to go back on Prednisone. I hate that stuff.
Monday, January 7, 2013
Why I Blog
My heart is full this morning as I checked my comments on the last post & saw the one from Michelle in New Zealand. I know its not everyone's choice to be an open book with illnesses or other trials in life & I honestly understand & respect that. But, much to my mother's dismay, I've always been more than an open book. Its just who I am. And I've learned over the years that it can make people uncomfortable but it can also help people. And that's why I do it.
When I got pregnant with my first baby, I told no one. But then when I miscarried at 10 weeks & had to have a D&C, I told everyone. Why? Because I didn't want to be the crazy lady crying in church & no one knew why. Because people knew what had happened, they were able to love & support me instead of question & whisper. I also learned at that point that it allowed others who had experienced miscarriages & kept it private to talk to me because they knew I would understand. It also helped my friends who had miscarriages after me for the same reason. The same went for the infertility issues I had before I got pregnant with my twins. I've never regretted being so open about my health issues. Sure, I get some weird/inconsiderate comments. But those are easy to brush off when you know others have been helped.
I am grateful for the internet & blogging. I love my FSGS group ladies with all of my heart. I pray for them & think about them & I know they are concerned for me too. I love how it connects us from all over the world. Comments like Michelle's make all of the hard stuff worth it. So Michelle, if you read this-- THANK YOU! And please email me so we can be friends! (saoldroyd@gmail.com)
When I got pregnant with my first baby, I told no one. But then when I miscarried at 10 weeks & had to have a D&C, I told everyone. Why? Because I didn't want to be the crazy lady crying in church & no one knew why. Because people knew what had happened, they were able to love & support me instead of question & whisper. I also learned at that point that it allowed others who had experienced miscarriages & kept it private to talk to me because they knew I would understand. It also helped my friends who had miscarriages after me for the same reason. The same went for the infertility issues I had before I got pregnant with my twins. I've never regretted being so open about my health issues. Sure, I get some weird/inconsiderate comments. But those are easy to brush off when you know others have been helped.
I am grateful for the internet & blogging. I love my FSGS group ladies with all of my heart. I pray for them & think about them & I know they are concerned for me too. I love how it connects us from all over the world. Comments like Michelle's make all of the hard stuff worth it. So Michelle, if you read this-- THANK YOU! And please email me so we can be friends! (saoldroyd@gmail.com)
Monday, December 31, 2012
Goodbye 2012
I'm feeling really emotional today, the last day of 2012. What a whirlwind of a year its been. This time last year is when I started to put on the water weight - gaining about 16 lbs in 2 1/2 weeks. I found out I had kidney disease in mid-January, had a biopsy January 31st, diagnosed with FSGS a few weeks later & started Prednisone March 6th. I was in complete remission by early June, relapsed in late July, started Cyclosporine September 12th & was done with Prednisone on October 18th. I gained 16 lbs on Prednisone & found out in November that I should not have more children.
That is why I haven't blogged. All I've ever wanted to be in life was a mom. Never, at any point, did I think I was done having children. I knew the instant that I heard Max cry for the first time that I had to do it again.
I cried the day I had my appointment with Dr. A (my MFM dr) but really have felt a lot of peace since. I've had my sad moments but I'm doing ok.
Since I found out, I have put a lot of energy into clearing out all of the baby stuff (the space feels good!) & taking control of my life & health. I cut out sugar, I work out like a crazy person & I've lost 11 lbs & am back in my old clothes. I found out about my new job with BYU-I right after the other news & felt the Spirit whisper that the timing was no coincidence; this is just one way my Heavenly Father is taking care of my heart.
I have big plans for 2013. 2012 brought me a lot of trials & more hard days than I ever want to have again. But it also brought me a lot of blessings. I have a wonderful husband, 3 gorgeous, healthy, smart, loving children, I have the Gospel, I have fantastic friends, a supportive family & I have the drive to be as healthy as I can be for as long as I can be. I am in control of my life. Its going to be a great year.
Sayonara 2012! Bring it on 2013!
Sunday, October 28, 2012
Down week
I should have been posting more but I've just had a down week... I'll start with the good news though-- I'm off Prednisone! Its been about 10 days & I'm finally starting to feel like myself again. I've been SOOO TIIIRRREEEDDDD. I had a seriously bad head ache on Sunday but haven't had any since. Like I said, the fatigue is starting to get better but I'm sleeping a lot still so that's helping. I'm still getting some joint pain. I haven't been able to loose weight yet and... my hair is still falling out. IN CHUNKS. Its noticeably thinner. Hope that stops soon or I'm going to start to have bald spots!
I did labs last Monday & finally got the results this week. They weren't super fantastic so I was kind of depressed about that. Then there was a thread going on my FSGS group talking about... well, I don't really remember what it was talking about but there is one girl who is on dialysis right now waiting for a kidney. She said he kidneys were stable for SIX YEARS before she had a baby & then she was in kidney failure 14 months after delivery. That definitely gave me pause. I'm absolutely sure she will never regret that decision because it allowed her to become a mother to a beautiful little girl. But me? I'm already a mother. What if me having a fourth child compromised my ability to take care of the three I already have? Now, that's a big WHAT IF. But its definitely something to think about as we prayerfully make our decision. In the past, I had been focused on getting stable & whether I could bring a healthy baby into this world. I hadn't really given much thought to my health afterward.
I was pretty discouraged for a few days; its such a battle between heart & head.
I spoke with Dr. R (my neph) on Thursday & he wasn't as discouraged about the results as I was. We also talked about the dangers post-pregnancy to my body & he said he's given lectures on that topic. So his homework over the next week or so is to look up some of the studies regarding that topic and send them to me & Dr. A (my MFM doc) so we can talk about them at my appointment on the 8th.
I often get impatient & want to know right now what's going to happen but I keep being reminded to be patient... things will work themselves out.
I did labs last Monday & finally got the results this week. They weren't super fantastic so I was kind of depressed about that. Then there was a thread going on my FSGS group talking about... well, I don't really remember what it was talking about but there is one girl who is on dialysis right now waiting for a kidney. She said he kidneys were stable for SIX YEARS before she had a baby & then she was in kidney failure 14 months after delivery. That definitely gave me pause. I'm absolutely sure she will never regret that decision because it allowed her to become a mother to a beautiful little girl. But me? I'm already a mother. What if me having a fourth child compromised my ability to take care of the three I already have? Now, that's a big WHAT IF. But its definitely something to think about as we prayerfully make our decision. In the past, I had been focused on getting stable & whether I could bring a healthy baby into this world. I hadn't really given much thought to my health afterward.
I was pretty discouraged for a few days; its such a battle between heart & head.
I spoke with Dr. R (my neph) on Thursday & he wasn't as discouraged about the results as I was. We also talked about the dangers post-pregnancy to my body & he said he's given lectures on that topic. So his homework over the next week or so is to look up some of the studies regarding that topic and send them to me & Dr. A (my MFM doc) so we can talk about them at my appointment on the 8th.
I often get impatient & want to know right now what's going to happen but I keep being reminded to be patient... things will work themselves out.
Saturday, October 6, 2012
Not for the faint of heart
Everything with the Cyclosporine is going well so far. Haven't gotten sick. Haven't grown super bushy eyebrows. I might have a little more hair on my face but luckily its blond.
It's the prednisone weaning that's giving me problems. (Wow, that's putting it mildly) The withdrawls are ROUGH! Going from 20mg to 10mg... I thought I was dieing. I change doses on Wednesday. By that Thursday night I couldn't even move. I felt like I had the flu. I was having head aches almost every day as well. I can't take Advil or anything so I usually just drink a Diet Dr. Pepper for the caffeine. But I don't like drinking soda too often.
So I emailed Dr. R & of course he was fantastic & wrote right back. He told me to try splitting my dose; half in the morning, half in the evening. It has REALLY helped with the head aches. But then I was having problems going to sleep because I was taking some of the steriod at night. So I've started taking Melatonin which has helped.
A new, fun side effect of the taper is that I'm loosing chunks of hair. I luckily have a lot so I'm hoping it won't cause too many problems. But I'll probably have to cut it so the regrowth isn't weird. I guess it'll depend on how much I loose.
This Wednesday & Thursday (going from 7.5mg to 5mg) didn't go so bad. I was tired on Wednesday but felt good on Thursday. Thought I skipped the rough part. No sir... it came with a vengeance yesterday. I was so tired I napped when the kids napped. After being asleep for a while, I could hear that the big kids were up but I literally could not wake up. Finally I heard the baby calling for me so I got up. But it was really hard & I could barely get him out of the crib. I spent the next 2 hours on the couch. I didn't have the strength to stand. I felt a little better this morning & now I feel good.
I know I can taper slower but I feel like I'll still have some of the symptoms & it'll just prolong it. I know I have a rough couple of weeks coming but really can't wait to be off this crap.
As far as the FSGS, I don't really know where I stand. I think I'm spilling less protein but my test strips expired so I think they're not working right (they still say I'm spilling a lot). I'll do my cyclo bloodwork next week. I feel like I won't have a good grasp on how I'm doing until I'm off the pred.
So there it is... my super boring update. But that's what's up.
It's the prednisone weaning that's giving me problems. (Wow, that's putting it mildly) The withdrawls are ROUGH! Going from 20mg to 10mg... I thought I was dieing. I change doses on Wednesday. By that Thursday night I couldn't even move. I felt like I had the flu. I was having head aches almost every day as well. I can't take Advil or anything so I usually just drink a Diet Dr. Pepper for the caffeine. But I don't like drinking soda too often.
So I emailed Dr. R & of course he was fantastic & wrote right back. He told me to try splitting my dose; half in the morning, half in the evening. It has REALLY helped with the head aches. But then I was having problems going to sleep because I was taking some of the steriod at night. So I've started taking Melatonin which has helped.
A new, fun side effect of the taper is that I'm loosing chunks of hair. I luckily have a lot so I'm hoping it won't cause too many problems. But I'll probably have to cut it so the regrowth isn't weird. I guess it'll depend on how much I loose.
This Wednesday & Thursday (going from 7.5mg to 5mg) didn't go so bad. I was tired on Wednesday but felt good on Thursday. Thought I skipped the rough part. No sir... it came with a vengeance yesterday. I was so tired I napped when the kids napped. After being asleep for a while, I could hear that the big kids were up but I literally could not wake up. Finally I heard the baby calling for me so I got up. But it was really hard & I could barely get him out of the crib. I spent the next 2 hours on the couch. I didn't have the strength to stand. I felt a little better this morning & now I feel good.
I know I can taper slower but I feel like I'll still have some of the symptoms & it'll just prolong it. I know I have a rough couple of weeks coming but really can't wait to be off this crap.
As far as the FSGS, I don't really know where I stand. I think I'm spilling less protein but my test strips expired so I think they're not working right (they still say I'm spilling a lot). I'll do my cyclo bloodwork next week. I feel like I won't have a good grasp on how I'm doing until I'm off the pred.
So there it is... my super boring update. But that's what's up.
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