Tag Archives: kidney disease

February 18, 2018

Finally Answers, Five Years Later

By terraluft

Last November marked five years since my pulmonary embolism which led to the discovery of my kidney disease: Idiopathic Membranous Nephropathy. The idiopathic part, which literally means unknown cause, is the part of my diagnosis that has bothered me the most all these years.

WHY?

Why the hell did my body–the healthy body of a runner with no other underlying disease or malady–develop this disease?

It’s been a roller coaster of a ride through immuno-suppression therapy and all the terrible side effects, three hellish months of strict veganism, and becoming a vegetarian to gain my health back. Years of vegetarianism to stay in remission, which I thought I could handle and which, turns out, is harder than I thought it would be with school and a family who does all the cooking. All this and still no real answers to why it happened in the first place. Especially after forty years of health with no lead-up or warning.

December 2017 marks the official removal of the ‘Idiopathic’ part of my disease. I FINALLY have answers to the why question and let me tell you how surprising they are…

I’m skipping ahead so let’s go back to the beginning. The beginning that didn’t look remotely related to me personally at the time.

I have several friends who struggled with food that made them sick a few years back. Two of them researched enough that they believed they had a gluten allergy since eliminating gluten eliminated their symptoms. Both went to extreme measures to avoid all things gluten, and still got sick. Both are kick-ass and didn’t take it lying down. Which led me to the LEAP diet and MRT test.

I halfheartedly longed for a way back to my omnivore days where I could eat lean chicken and the occasional filet mignon when the need arose. Seeing my trail-blazing friend figure out exactly what she was allergic to (yeast, not gluten) and able to manage her debilitating pain without medication had me hopeful that this was the way to do it.

March of 2017 I started working with my friend’s dietitian who specializes in kidney disease. I did the MRT blood test in May and (halfway) embarked on the LEAP protocol in June. MRT stands for Mediator Release Test and is a measure of how my immune system cells react to 150 different foods and chemicals. It gave me a list of foods that are causing an inflammatory response in my body split between a “you should stop eating these for now” red and yellow list, and a “you should eat these foods” green list.

What does any of this have to do with kidney disease? MY kidney disease is an autoimmune disorder which is triggered by inflammation in my body. That’s the same reason vegetarianism keeps it at bay since digesting the flesh of animals increases inflammation. Now you’re with me, right? My whole thought process setting out was this: if I can trade the decreased inflammation from not eating meat with not eating whatever I specifically am allergic to then I could theoretically eat meat again.

It was a long shot. I knew it. I didn’t care. Stranger things have happened, (look at me with a kidney disease!) so why not try.

In December, my nephrologist (fancy word for a kidney doctor) confirmed that the changes I’d made to my diet based on my MRT testing had resulted in such stunning changes in my blood work that she was confident in saying that we’d found the cause of my disease.

Did you catch that? Cause = inflammation from immune reactions to various foods. I can’t make this shit up, people! The last five years of hell are because I was eating foods that my body doesn’t deal with well (for forty years). I’ll write up all the details (it will be a VERY long post, I warn you) but this is the gist of my answers.

It is stunning and overwhelming to think of this one case, mine, and wonder how many more people out there suffering with crazy health scares that don’t make any sense might have similar causes. It’s a soapbox topic from the beginning of my blog, this food that isn’t a food and how terrible we eat as a country, but this takes it to a whole new level. Don’t you agree?

Stay tuned if you want nitty gritty details because you know I’ll share them! And my dietitian is doing a case study of me (look, mom, real science and shit!) to publish. Maybe I can somehow help others in similar circumstances by sharing my story. For me, I’m just glad I get to eat meat again!

 

Leave a comment   |  tags: , , , , | posted in Alternative Medicine, Everyday Life, Healthy Lifestyle, Kidney Disease

June 11, 2015

Baby steps to achieving goals

By terraluft

My health has settled down a bit lately – still in remission from kidney disease, manageable medications with minimal side effects, still working on clearing my lungs of the last of the blood clots that are holding on for dear life. Most days, life is good and I almost forget that I have a chronic illness that will never be cured. But there is this one reminder that, by stark contrast, shows me daily how my fitness has suffered in light of these struggles. I can’t run a mile anymore, let alone thirteen of them. Hell, it’s hard to walk briskly for long periods of time right now. It is frustrating to look back on where I was – running Ragnars and half marathons and averaging twenty miles a week – and compare it with where I am now.

I know everything is relative. I do. I acknowledge every day that I get to live is a day I may not have had at one point and I’m happy. But that’s on a very basic level rooted in survival. I’m talking about the stuff of living.

How did I get here? On a viscous cycle of cause and effect. I survived the pulmonary embolism because I was a runner and had excellent lung and cardiac capacity. But once I couldn’t run, I lost that all very quickly. Now that I’m in remission, I’m carrying around extra weight – both from the water retention associated with kidneys that don’t work all that perfectly and the lack of running I’ve been capable of for the past year. Because I haven’t been able to run, my cardio and lung capacity has dwindled to where I can barely walk a quarter mile quickly before I’m sucking wind and my chest and lungs hurt from the blood clots.

Not going to lie, this cycle has had me frustrated and down the past few months. Which does not help motivate me to change anything about it.

This week I decided it was time to stop living in the past and lamenting all that I’ve lost in the fitness aspect of my life. Sure I have to start from the beginning as if none of the hard work I put in to get where I was at the peak of my game ever happened, but that’s not the end of the world. I know I can do it because I’ve done it before. There are different hurdles this time around. I have two kids who are active with extra curricular activities, my job is insane, I’m writing like never before and I’m older (and have a kidney disease) with dwindling energy and endurance. I could wallow at how hard all that makes it to work out on a consistent basis or I can get creative.

Today showed me the possibilities of the creative path with several baby steps toward new habits. I still practice yoga twice a week – most weeks – and I’ve committed to challenging myself more to get out of my comfort zone. I am still sore from my practice two days ago so that has proven a positive step. At work, where I used to work out religiously for an hour in the afternoons, I barely have time for a lunch break that doesn’t involve grabbing food and snarfing it down at my desk while I multitask sometimes multiple meetings. Today my counterpart and I ended up having a meeting on the treadmills. It wasn’t planned that way, but we decided to go for a quick break and ended up brainstorming issues while we walked. In the end, it was a meeting rather than a break and I still got to be active. She pushed me to staying on the treadmill for twenty minutes – her minimum. From now on, I’ll suggest a treadmill meeting any time possible. After work, Baby Sister had her tennis lesson where, instead of sitting on the grass with her BFF’s mom chatting for an hour, we both brought our rackets and played tennis in an adjoining court. Both of us used to play but hadn’t held a racket for years – almost twenty for me. We sucked but by the end of the hour we were successfully returning. She played competitively, me recreationally. She got her skills back quickly – including a serve. Mine will take some time but my body is remembering how it feels to play and how fun it was.

I felt energized and fulfilled at the end of the day. It hadn’t taken any effort to increase my activity level almost double (as measured by my fitness tracker in the form of daily steps). The momentum of taking small steps toward a goal, however lofty, should not be taken for granted.

2 Comments   |  tags: , , , | posted in Back to Fit, Everyday Life, Goals, Healthy Lifestyle, Kidney Disease

March 14, 2015

Back on the roller coaster – why my kidneys can kiss my a$$

By terraluft

It was December 2014 and I was looking forward to getting off all of my medications after a year of remission under my belt. I gleefully said goodbye to immuno-suppression drugs mid January and hoped never to look back. But the Universe is a nasty bitch and it appears I do not get my wish. Within two weeks my symptoms returned and I had to start back on maintenance drugs. Drugs which I have had to increase the dose of already hoping it works. Today my doctor laid the ground work for the potential of going back on immuno-suppression if the higher dose doesn’t keep things at bay.

I know it could be so much worse. I could be looking at chemotherapy (which she still has on the back burner just waiting for me, I fear!). I could be in renal failure looking for a transplant or facing dialysis. Instead, I’m taking a drug that has only one side effect of lowered blood pressure and won’t damage anything if I take it forever. But I’m back to living with the roller coaster of sodium restrictions, fluid restrictions (bye bye proper hydration, it felt amazing while it lasted!) and daily water weight insanity where I gain a pound a day of water until my clothes don’t fit and then take damaging diuretics for a couple of days and start the cycle all over again. I love roller coasters but this one I could do without, thanks.

People, do not take your kidneys for granted. While I’d like to tell mine to kiss my ass on a daily basis, I really would be happy if they just worked the right way every day. Can’t we all just get along inside this body of mine? It’s been two years since I’ve eaten meat (well, there was that one indulgence, but it was only a bite!), I’m a pseudo vegan who just eats cheese and butter occasionally, and I don’t eat eggs or shellfish except on extremely rare occasions. Why is that not enough? Because I’d probably have nothing to bitch about if everything worked fine, right? I can’t imagine the shape I’d be in if I wasn’t willing to go to such extremes to take care of my body the best way possible. And I can’t help but be envious of others in my gene pool who couldn’t care less about what they eat or drink and still have perfect numbers in their blood work. You know who you are. And yes, I secretly loathe you for your perfectly working kidneys that I’d give almost anything for.

If you need me, I’ll probably be asking a million questions at every meal that I don’t prepare myself to insure I’m meeting with all my dietary restrictions, or doing yoga so I don’t lose what’s left of my mind. Oh, and writing. I’ll still be writing!

Leave a comment   |  tags: , , , , , | posted in Everyday Life, Healthy Lifestyle, Kidney Disease, Looking Ahead, Ranting and Ravings