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fightingPKD
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« on: May 31, 2019, 08:28:41 AM »

Finally getting around to this.

My name is Tim, and I'm 46 years old. Living in the Mid-Atlantic area.

I suffer from Polycystic Kidney Disease.  https://en.wikipedia.org/wiki/Polycystic_kidney_disease . Although this disease is almost entirely passed down through direct heredity, I am one of the roughly 5% who got it through spontaneous mutation.  Unfortunately, instead of a mutation turning me into an X-Men, it's been a real damper on my adult life.  I lost my first kidney rather violently. See, I didn't know I had PKD until it nearly killed me in the fall of 2004.  I was jogging one day with headphones on, and a car nearly hit me due to distracted driving (I saw her looking at her phone). I jumped out of the intersection, landed on my hands and knees. Figured, "dumb bi*ch, pay attention" but other than a couple scrapes, no big deal.  I walked another quarter mile and I started feeling - odd. Like something wasn't quite right with me. I walked home, which was about half a mile.  By the time I got home, my trunk was hardening, and I started feeling dizzy and slightly nauseous.  I called my wife (we were newlyweds of all of one month!) but she was about 30 minutes away from me on a commute home. I told her I believed I was in big trouble, and was fairly sure I was slipping into shock with internal bleeding, and I had to call an ambulance. 

Ambulance arrives, I'll never forget the paramedic that was with me in the back. First of all, she's like "what are you doing walking down the steps" and I'm just "I dunno, I'm in bad shape".  On the trip to hospital one, she couldn't hide the concern on her face. I knew I was in BIG trouble.  Got to the hospital, and after giving me a couple units of blood they determined they were incapable of dealing with my injuries. They sent me to the local shock trauma  in the city.  That was around the time I finally passed out (getting back into the ambulance and it being dark was the last thing I remember). 

36 hours later, I wake up, tubes in my mouth, strapped to a bed.  Finally start being able to talk 30 minutes later.  My wife told me they had to take my 'broken' kidney out through the front, and told me about the disease I had. Mentioned that my kidney was the size of a football.  All that good stuff.  I'll never forget the head surgeon who saved my life two nights previous  - his first visit he said "Tim, unfortunately, I don't think you'll be playing ice hockey anymore" and it was just the beginning of this new path I've been forced on.  12 days later, I finally went home in a binder. It took them three cracks at closing me back up before they were successful.   5 months in a binder, being an absolute vegetable.

Anyway, here I am 15 years later. My eGFR is 19%.  I'm scheduled to see the transplant department at my hospital in two months.  My nephrologist, one of the leading researchers in my disease, has every intention of getting me a transplant before dialysis.  We'll see. I do know that I've been and am doing everything possible to stay strong and healthy for my family.  Fatigue is the one real symptom I suffer.  Lower leg cramping as well, super painful ones.  However, these I find I've been able to mitigate by frankly sleeping more - challenging as that can be as a parent.

Anyway, I've been super hesitant to participate in 'support' groups like this, mostly because I find it involves more misery than support.  Honestly, I'm not sure how much support I actually need,  my main reason for joining this forum is educational.  Dialysis is more likely in my future than not.

I'm a big believer in "God helps those who helps themselves" and despite my ever degrading condition, I still strength train/power lift and do light cardio (walking, mostly) and am starting to integrate yoga now.  I have to be active, being inactive drives me bonkers.  I went from a hockey playing, weight lifting, martial artist to basically a diseased vegetable. Many of the things/activities I personally identified myself with had to be given up, and to this day things like not playing hockey are still frustrating.

I realize there's not a whole lot of activity posting wise here, but I'll pop in a couple times a week and see if there's something helpful I can contribute to help make someone else's suffering more bearable.

Thanks for reading.
Tim
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MooseMom
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« Reply #1 on: May 31, 2019, 10:09:51 AM »

"Support" has many guises.  It can vary from day to day just as your needs vary from day to day.  One day you may wake up feeling not really so bad, but the next may find you depressed as you remember what you have lost.  Sometimes you just have no idea what will make you feel better.

And that's OK.  Your wife will give you emotional support because she loves you, but she will not really KNOW what you are going through.  She doesn't NEED to know her potassium from her phosphorus when she finds you awake at 3AM, mired down with your worry.  She has learned what you emotionally need, and that's the underlying pattern of your support net.

That's where we at IHD come in.  We're not all filled with misery, but we DO know our potassium from our phosphorus.  We can speak your language.  We already know what it takes to get a transplant, and we know how to deal with the aftermath.  Many of us already know the ins and outs of dialysis and can help you with what to expect.  While every kidney patient is different, there are common denominators, and those we understand.  This is the kind of support we can weave into your support fabric.

And then there are your doctors.  They can offer another form of stitching into that fabric.  That support is their medical advice that is tailored to YOU and YOUR needs.

Put all of those three elements together, and you can create a quite formidable support net that you can fall into whenever you need.

It may, in fact, sound like we're a bunch of misery guts, but that's because we come here to unburden ourselves.  We all work so hard to appear strong and normal to our families and to our friends because we do not wish to be a burden or to become one more worry in their lives.  We all of us have our crosses to bear, and we don't want to be yet another nail in someone else's.  So we come here to voice our deepest fears and greatest hopes because we all have that one thing in common...our busted kidneys.

It is good that you are keeping yourself healthy.  Physical exercise is a truly wonderful way to keep your mind and body healthy.  Keeping active is a tremendous distraction from the worries that come with a chronic illness.  I assume your docs know about your fatigue; can they help you with this?  Are you anemic?

I can understand the concept of tying your personal identity with your physical activities.  Now you have a new challenge, and that's to create a new training program.  Yoga presents a whole new set of physical activities that you will find challenging in a different way.  Is ice hockey really out of the picture?  Would it be too difficult to have a word with your teammates and see if you could still participate in a temporarily reduced capacity by limiting your minutes on the ice?  Or would that be a too depressing scenario for you?  Maybe this is something to think about.  You have a medical condition that has, for the time being, limited your body, but it has not limited you as a human being.  You are in no way "less than" you were.

IHD is a tremendous resource for education.  We can tell you what has worked for us, and while that might not help YOU, you can take our experiences and perhaps use them to chart your own path and create your own questions to pose to your doctor.

If there is something you need from us, all you have to do is ask.  We are a community who tries very hard to support others, just as we take a risk each and every day in sharing our own frustrations and fears.  There is trust here, and I hope we can help you in any way you need.

BTW, some days on IHD are MUCH more active than on others.  It depends upon the topic.

As someone who knows, pre-dialysis is a very difficult period of time.  It is extremely stressful.  We understand this in a way that no one else can.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
lulu836
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« Reply #2 on: May 31, 2019, 01:04:26 PM »

 :2thumbsup;  Well said
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Of all the things I've lost, I miss my kidneys the most.
fightingPKD
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« Reply #3 on: May 31, 2019, 09:26:33 PM »


(great post here)


Oh yeah, I'm anemic. Nothing I can do about it. My diet is heavily micromanaged much like others here. She does allow me moderate protein (60-75g) but my salt, potassium are heavily managed.
I have all of this knowledge about weightlifting, powerlifting, etc but I can't fully use it because my diet is terrible for it :)

My wife - I am so lucky, she's not just a spouse, she's a scientist. PhD in chemistry, minored in toxicology.  I really outkicked my coverage! I would be completely lost without her.

Thanks for the thoughtful response. I've spent the last 15 years in some state of denial. I didn't actively take part in fundraisers for my disease. Sure, we donated money regularly but the idea of really reaching out to anyone, well it took a very long time for me to do this. My wife's monitoring a couple of facebook groups for information as well. All the Medicare stuff (although not immediately pending) is all foreign to us. Really, my biggest stressor isn't even my health. I will fight until the end. It's the financial side really. After growing up in a lower-middle/blue collar family where we lived paycheck to paycheck, the idea of going back to that due to ridiculous medical expenses just to keep me going is really what stresses me most.
« Last Edit: May 31, 2019, 09:28:55 PM by fightingPKD » Logged
lulu836
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« Reply #4 on: May 31, 2019, 10:14:17 PM »

After Medicare kicked  in my  only medical expense is insurance payments which escalate as you age and out-of-pocket co-pays for medicine.  Insurance amounts are predicated on what kind of benefits you choose.  I've been retired since 2005.  ESRD grabbed me in 2015.  Treatments are paid for within the US as are medicine using Part D coverage so with the exception of hearing the faint footsteps of the Grim Reaper I have minimum worries.
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Of all the things I've lost, I miss my kidneys the most.
MooseMom
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« Reply #5 on: June 01, 2019, 08:36:36 AM »

Yes, the "pre-renal diet" (the very restrictive diet that you're on before you either go on dialysis or have a transplant) is woeful.  I always worried about becoming malnourished because all of the "healthy" foods are dangerous to us.  Can your neph suggest a good multi-vitamin that is safe for you?

Anemia IS treatable.  I'm hoping that your neph hasn't told you that it is not.  I was lucky in that anemia was never a problem for me except for a few months time (lady problems), and for those few months I received injections to treat the temporary anemia until my "lady problem" was sorted.  Anemia is pretty much a given in severe CKD.  I am not entirely clear on how exactly it is treated because I think it involves both Epogen and iron (they work in tandem).  I hope others here on IHD will come along and give you more information.  Apologies for not being better equipped to advise you on this.

PS.  I did find this link that may help.  https://www.kidney.org/atoz/content/what_anemia_ckd

I could rant and rave about the evil and injustice that exists in a health insurance paradigm that makes people worry more about money and bills than about their health and treatment. 

I salute your wife for being not only emotionally strong but also for having the resilience and persistence to deal with all of the bits and pieces that come with managing a chronic disease while you do YOUR job of taking care of yourself and working to keep mentally and psychologically strong.  I'm glad you have a teammate, especially a really smart one!

So, this is what you do next.  LOL!  Ask your neph about vitamins to bolster your nutritional status.  AND, ask your neph about treatment for anemia.  Yes, you are tired as anyone would be at your stage of CKD, but there is no reason for this fatigue to go completely unaddressed.

Oh, and I never did any fundraising for my disease, either.  No one has ever done a fun-run or a bucket challenge for FSGS.  We never see any kind of public ANYTHING for those of us with kidney failure.  We are a forgotten population.

We're rooting for you!  Keep us posted, OK?  And let us know how you are getting on with yoga, OK?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #6 on: June 01, 2019, 04:23:06 PM »

Back before dialysis, I tried to stay off as long as possible by following guidelines in the book by Mackensie Walser, limiting my protein intake to no more than 50g/day, taking some amino acid supplements, and slowly losing muscle mass. I ended up malnourished and anemic. My GFR was 6 when I finally started dialysis, I'm 6'3", and I weighed 156 lbs.

Today, I'm at a trim 175 lbs, have enough energy to work and still do a few things otherwise. I can ride my bikes, mow the lawn, chop wood, and a lot of other things that I couldn't do during that last year before dialysis started.
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fightingPKD
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« Reply #7 on: June 01, 2019, 08:11:33 PM »

Back before dialysis, I tried to stay off as long as possible by following guidelines in the book by Mackensie Walser, limiting my protein intake to no more than 50g/day, taking some amino acid supplements, and slowly losing muscle mass. I ended up malnourished and anemic. My GFR was 6 when I finally started dialysis, I'm 6'3", and I weighed 156 lbs.

Today, I'm at a trim 175 lbs, have enough energy to work and still do a few things otherwise. I can ride my bikes, mow the lawn, chop wood, and a lot of other things that I couldn't do during that last year before dialysis started.

Nice work!

Yeah, see I'm not losing muscle mass - at least not as much as I could be.
I'm lifting 3 days a week. The strongest I ever was (post diagonosis) in compound lifts was about 4 years ago (33% function). I was benching 225, Squatting 300 (below parallel), Pulling 325 and strict pressing about 125.  Weighing about 165lbs.
Today, I'm actually testing 1RM fir the first time in maybe a year. After some minor, nagging old person injuries, I backed off into the 5-8 rep range for a long time. However I am switching next month to a modified program of Wendler's 531 so I wanted to see where I was.

So far, I squatted 285 which surprised me.  Benched 205 (full ROM, but touch and go).  My press will probably be 110-115, and my deadlift gosh no clue. I suspect that will drop the most relative to before. I've really backed off deadlift training the past year - it's becoming less worth it overall. I still squat three times a week most weeks though.  Oh, I'm still floating in the upper 160's weight wise.

My nephrologist was NOT a big fan of my routine, but even now she recognizes that it's worked for me. My symptoms are - overall - fairly mild. Fatigue is the real big one but sleeping well consistently manages it for the most part. I'm in far better shape than I should be. I'm in better condition then most 46 year olds, period.

I will say that the protein tends to stay down because of the low salt diet. Some days I actually find myself eating a protein bar because the rest of my diet for the day is largely grains and fruit.  This can also be problematic as it's frankly not enough calories.  My TDEE (total daily expenditure of energy) is about 2200 calories.  It's not easy consistently getting there day after day after day eating 100% clean/kidney friendly. So I settle for 85-90% and have a few cheat meals on the weekend.

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Charlie B53
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« Reply #8 on: June 04, 2019, 09:37:02 AM »


You level of physical activiy might kill me.

Before kidney failure I thought of myself as strong, I didn't work out per se, I was a mechanic and could lift push pull anything and everything I needed all day, then go home and push the lawn mower up and back along the hundred yards or so of ditch a few times on each bank before sitting on my mower and knocking out our 3 acre yard.

Now?   The ditch doesn't get done at all and by then time I get the yard done so is the whole day.

I've been off work ten years already.

I have to admire your effort to stay in shape.

Keep doing what  you can as long as you can.  You will be fine.

Learning to adjust your own limits, keeping to what works for you.  While humans may be quite similar we are NOT all the same.  As individuals we each have our own limits, but personal determination makes those limits far far different between us.

Hang in there and never give up.

Take Care,

Charlie B53
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fightingPKD
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« Reply #9 on: June 06, 2019, 09:23:21 AM »

I push myself as hard as I can, pretty much every day.  There's usually one day I take it easy - usually Sundays.

I completely agree about personal determination.  Biggest thing in habit forming in general is it takes time. I still struggle with bedtime consistency because I'm a night person. That's my real health flaw. I still sleep 7.5-8 hours/average a night, but I am all over the place during the week.

Thank you for the thoughts Charlie.  You're in a different place than I am, but always remember who you are. It's what drives me, at least.  I know I'm ultimately 'going to lose' and I'm losing muscle mass each year despite everything. There's no point giving in, though.
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