Finally getting to see a renal dietitian!

[Athena]

Moosemum, thanks again. Yes, the dreaded high LDL cholesterol! I've always had high levels, even before the CKD diagnosis. More recently when I was sick I had for the first time a pretty high triglyceride reading (hopefully it was an isolated false result). The norm is for me to have high LDL, good HDL & good trigs. A doc said in the past that my high LDL is 'genetic' but you may be more correct when you link it to CKD. One thing to note though is that I never used to eat eggs until about 3-4 years ago however my LDL cholesterol has virtually remained the same. I don't think eating high cholesterol foods has any real impact on our lipid profile. I think, our liver function is what determines our serum cholesterol levels.

The pressure to start statins is something I've been resisting for quite a number of years now. The truth is that I'm really scared of taking statins because 1. the severe side effects that many people seem to have from them, & 2. I just don't want to have another drug in the system. If my trigs turn out to be high, then I will need to take fenofibrates to reduce them and the bad news is that fenofibrates raises our serum creatinine levels pretty dramatically

I'm pleased to hear that you are doing well on them MM.

[Athena]

I understand your anger, rage coming from a feeling that your future has been taken away and that your joy in life has been snatched from you.  I felt those exact same things.  I spent thousands of dollars seeking emotional and psychological help.  I spent a lot of time and energy constructing every coping mechanism I could find.  I educated myself about my disease and dialysis, and while this was a good thing in theory, I discovered that the more I learned, the more frightened I became.  More knowledge served to overwhelm me.

For me personally, the only thing that finally gave me peace was receiving a new kidney.  I have done well, and I am coping just fine with the meds.  I have no underlying health issues (like Hemodoc and his history of cancer), so tx has given me my life back.  I am perfectly well aware of the possibility that this kidney may one day fail or that the meds may cause cancer or something else, but the spectre of dialysis has been taken away for the time being, so I am going to enjoy every day of peace that I have been granted.  Transplantation has given me hope; I understand all too well the feeling of hopelessness that you've described.

Like you, I shuddered at the thought of having to rely on anyone; I'm as independent as the next person.  I did not believe that dialysis would allow me to maintain my independence.  I did not like the idea of having my disease impact anyone, so even though I planned to do NxStage and dialyze at home, I was never naïve enough to believe that this would not impact my husband in any measureable way.  So, tx has allowed me to remain independent.  There are people here on IHD who don't think twice about having an adventurous life while on dialysis.  Their exploits have been documented on this forum.  But I don't think I'm one of those people.  But then again, maybe I could be.  I didn't want to find out.

Moosemum, I really just want to thank you so much for your very thoughtful, insightful and wise words of advice in this thread. I've been reading and re-reading your posts and I am deeply grateful to you for sharing your experience.

It is true that the more one learns and discovers, the more gruesome it becomes. The complexity and the scope of complications of failing kidneys is very overwhelming. The fear is something you can just cut your teeth on! My mind often wanders to the idea that there might a "perfect" psychologist or even psychiatrist who might just be able to take this away. But I'm quickly realising that no one can do that. I've been to a few counsellors, 2 psychologists and various healing gurus and I realise that nobody can really help. People offering pithy advice actually makes it worse a lot of times. I just can't bear to listen anymore. Nothing anyone can say can make this disease go away. I've tried meditation/creative visualisation but the only thing that made me feel good was visualising regeneration and perfectly functioning kidneys again! And of course, after such wonderful flights of imagination, depression often follows. My GP tried to boost my morale by saying that he has a patient who 'feels just great' on just under 10% kidney function. It did nothing to cheer me up.

As for transplantation as opposed to D, that would be the preferred option I would imagine for anyone, especially for those who are alone with little family support ... My Neph wants to bring this subject up already but I can't bear to go there. Decisions will have to be made soon. If I keep avoiding the subject, I may be overlooked for a transplant, if or when I should decide that I really do want to prolong my life.

But the anger is just as real and as powerful as the fear. I feel so angry at my Nephs for being so ineffectual and powerless to save me or anyone else from kidney failure. It's not the same as when someone unexpectedly goes into renal failure without warning. My case is different in that I am a diabetic and the early warning signs of emerging kidney problems were just ignored. CKD is indeed a silent disease but the doctors should have been more vigilant and proactive in the past to make me see 'the light' about the real possibility of kidney problems & how I could have avoided progressing to a serious stage. Like any younger person, I just thought "it won't happen to me".

Moosemum, you sound like you've done everything humanely possible to stay on top. It sounds to me like you perhaps have the same KD as your mother?

[PaulBC]

As for transplantation as opposed to D, that would be the preferred option I would imagine for anyone, especially for those who are alone with little family support ... My Neph wants to bring this subject up already but I can't bear to go there. Decisions will have to be made soon. If I keep avoiding the subject, I may be overlooked for a transplant, if or when I should decide that I really do want to prolong my life.

I don't think transplantation is the preferred option for everyone, and Hemodoc gave a pretty good list of reasons why in another thread (complications of immunosuppression, including cancer, among then). When an MD says "The transplant meds still scare the willies out of me" it's hard not to take notice.

If you mean you're tired of hearing your nephrologist tell you (or suggest in some way) that you should prefer a transplant, then I completely understand. The preferred option is the one you actually prefer.

I have read that many people on dialysis feel terrible about the thought of harming a living donor, and turn down offers, insisting that they are doing just fine. I don't know if there is as much ambivalence about receiving deceased donor organs, but I would say that it is not a procedure to be taken lightly, and involves all kinds of risks.

You're also probably right to wonder if your communication now could affect your prospects of getting a transplant later. Actually, I too get a little nervous expressing any reservations. My preference obviously would be for my daughter to get better, even if science cannot explain why (and this is coming from someone who really likes scientific explanations). Beyond that, I think a transplant is inevitable, but I am not into closing off any reasonable options prematurely.

You might get some good advice around here on how to communicate. It does seem that transplantation is unique among medical procedures in making personal judgments about the recipient.

[MooseMom]

Athena, thank you for the kind words!

My mother had an aortic aneurysm, and the surgery to repair it ended up starving her kidneys of blood for just a little too long, and the organs died.  The surgery that saved her life resulted in that life being spent on dialysis.  I suspect that due to her age (78 at the time), her native kidneys were perhaps impaired in the first place, and this operation was the proverbial straw that broke the camel's back.

I have no idea why I have fsgs, but it does not seem to have a hereditary component.

Oh yes, the anger is very real and is very valid, and it can be just as useful as the fear if one knows how to channel it.  If the anger makes it easier for you to follow the diet ("There is NO food in the WORLD that is worth the harm that it could cause!!!") and to take your meds ("I REFUSE to be one of those patients who REFUSE to take care of themselves!!!"), then the rage can work for you.

I do understand, though, that renal insufficiency caused by T1 is a whole 'nuther kettle of fish, and feeling like your symptoms were not caught earlier must be a very hard thing to live with.  I can't imagine any competent neph who works with a diabetic would be blind to the possibility of ESRD. 

I don't know how transplant policy works in Australia, but here in the US, you are eligible for evaluation once your egfr drops below 20.  I don't know why, but I have the idea stuck in my head that in Australia, you have to be on dialysis before you can be considered for transplant.  In other words, there is not a policy in place for pre-emptive transplant unless you have a living donor.  Is that right?  I may well be wrong (I hope I am; I could google it, but I'm short on time, so I'm sure someone will come along and correct me!), but if I'm correct, you have plenty of time to digest the idea of transplantation.

So, what is the next big decision you feel you are going to have to make?

[Deanne]

For the issues of preservatives in white bread, Kristina posted a recipe not long ago, and a friend shared a white bread recipe with me that is very easy. It might be very similar to what Kristina posted. I have to admit I didn't go back to look. My friend's recipe doesn't even require kneading. It does require a cast iron Dutch oven though. I tried it and it's very good. I thought it almost has a sourdough taste.

3 cups flour
1 3/4 tsp.salt
1/2 tsp. rapid rise yeast
1 1/2 cups water

Wisk flour, salt and yeast together in large bowl.  Add water and mix until combined.  Cover bowl with plastic wrap.  Set aside for 12-18 hrs.
Heat oven to 450.  Heat cast iron pot w/lid in oven for 30 min.  Shape dough into ball on floured surface.  Cover w/plastic wrap.  Let set while pot reaches 450. Remove pot from oven and drop in the dough.  Cover and return to oven for 30 min.  After 30 min remove lid and bake another 15 min.  Place on rack to cool.

[Athena]

I saw my Nephrologist on Friday and the mystery has been solved about the renal diet. My labs do not show the need for any dietary modification as such, except for reducing salt naturally and not going overboard with protein. He told me that I eventually will be prescribed binders but not now.

I asked him whether there is any evidence of early dietary modification that may have a preventative effect on disease progression. His answer was no, however he still thinks it's a good idea to have a renal dietitian examine my diet more closely to make any improvement to it, if necessary.

I found this rather interesting. There does not appear to be any kind of kidney diet that has any preventative effect in averting kidney disease. I've never had my Nephs suggest this. To them, diet only enters the equation when kidney function deteriorates to a certain level.

I'd be interested to hear what others may think about this. Is there a possibility that medical professionals may not have that quite right?

[kristina]

Hello Athena,
When my kidneys first failed in 1971, I searched frantically for a doctor who could help me to find a positive way forward,
whatever that way would be ... The only doctor who could help me was a Professor of Medicine
(his special field was cardiology)... and his "hobby" was Preventative Medicine.
I was sent to him because he was an outsider, an "individual eccentric" with ideas and opinions, just like myself...
... When I consulted with him, he told me that if he were in my position, he would instantly "go vegetarian".
I thought about it and came to the conclusion that if it would be good enough for this medical professional,
it certainly would be good enough for me as well and I went vegetarian from then on... That was in 1971 ...
... He was the only medic who ever told me anything about a vegetarian diet, possibly because I have always been very slim,
so no other doctor ever saw a necessity to tell me anything about my diet. Another point, why no medic "talked diet" with me ever since,
is perhaps the fact that my blood tests have always shown that I eat a very healthy diet ... with no need to change anything...
... In recent years I was also told by nephrologists to "continue eating what I am eating" because my blood tests always show such good results ...
Good luck wishes from Kristina.

[Athena]

Thanks Kristina for your reply. Can I ask what exactly happened in 1971. You say that you had kidney failure, yet you only went on Dialysis just a few months ago. When you state 'kidney failure', do you actually mean that you were diagnosed with CKD or did you have a severe acute kidney injury that you recovered from at the time? What was your eGFR back then? Did you ever become iron-deficient as a result of your vegetarian diet?

[MooseMom]

Kristina, I will always and forever be amazed by how well you did on a vegetarian diet while battling severe CKD!  It seemed that all I had to do was LOOK at a tomato and my potassium would rise! 

[kristina]

Thanks Kristina for your reply. Can I ask what exactly happened in 1971. You say that you had kidney failure, yet you only went on Dialysis just a few months ago. When you state 'kidney failure', do you actually mean that you were diagnosed with CKD or did you have a severe acute kidney injury that you recovered from at the time? What was your eGFR back then? Did you ever become iron-deficient as a result of your vegetarian diet?

Hello Athena,
In 1971 I was found in a coma with uraemia and the ambulance brought me to hospital.
Fortunately the emergency doctors in the hospital refused to put me straight on dialysis
and instead they wanted to observe and they put me instead on all sorts of tubes (to be artificially fed etc. with all sorts of whatever)
...  these emergency-doctors also hoped that my body might pick up again without any dialysis, which it slowly did to a small extend.
But "the writing" of kidney failure "was on the wall"  for me ever since.  I also knew from then on
that my little kidney function (I don't remember the precise numbers) would certainly not "last me out"
and I knew that sooner or later I would be on dialysis and some of the doctors wanted to prepare me for dialysis already in 1971...
I ws horrified and tried just about everything to avoid dialysis for as long as possible ... no alcohol, only a vegetarian diet, no late nights etc...
(I am sure you get the picture...) ... One year later I was strong enough for a kidney-biopsy, which diagnosed me
with Chronic Proliferative Glomerulonephritis (one of the deadliest kidney diseases).
From 1971 onwards I tried to find a doctor who could help me to keep off dialysis for as long as possible
and that was when the Professor told me to "go vegetarian", which I did. This Professor sounded very logical when he told me,
that I should avoid under any circumstances to aggravate my kidneys in any way
and I should instead "mollycoddle" them and care for them and a vegetarian diet could help me to do just that.
I have been eating vegetarian food ever since and it seems to have done me good ...
Mind you, I don't really know whether it was my vegetarian diet which "did the trick"
or whether it was something else, or whether I was just lucky...
Good luck wishes from Kristina.

Hello MooseMom, to be quite honest, I don't really know why my body tolerates my vegetarian diet (touch wood...!!!)
Mind you, I always eat very small portions ...
All the best from Kristina.

[Athena]

Kristina, WOW! I sincerely believe that you may very well be a medical miracle. Seriously! I looked up your kidney disease on wiki and discovered that it could be one in a group of such diseases, most of which were indeed serious with end-stage a certain prognosis within about 10 years or so. The very fact that you lasted more than 40 years on such a modest level of kidney functioning (less than 20% on average?) is a remarkable story. I could see the faces of both my Nephs looking incredulous if you presented to them as a patient! 

Neph 2 did say to me a few days ago that not all types of CKD progress to end-stage. Sadly, diabetic nephropathy is not one of those kidney diseases. Your story truly inspires me. I know we are all different genetically & no two people with even the same type of disease will fare identically ... But nevertheless, your story really does inspire me. It was Neph 2 who once said to me, "nothing is guaranteed in medicine".

Is there already a past thread about your unique experience? If so, I would like to find it.

One thing that I have already take to bed from your example is avoidance of late nights. I am a true night owl - not for partying reasons, just sitting up reading & writing. I've always thought it may not be a good habit. I seem to have altered my sleep patterns as a result.

As for vegetarianism, I'll have to digest that one a bit more. When I stop menstruating, it may be more achievable without any iron deficiency consequences. But until then, I do need my eggs and a little meat now & then. Low carb eating is an ideal way for diabetics.

As for alcohol, we are on the same page! I have always avoided it.

It mustn't have been easy all those decades though with greatly reduced kidney functioning. There would have been many trials and tribulations I'm sure. Have you ever thought of writing a book about your experience? I know you have a lot on your plate right now and such a task would no doubt be next to impossible but when things become more calmer, perhaps this is something that can be envisaged?

Take good care of yourself Kristina.

[MuddyGurl]

Hi MooseMom…you seem to be one of the rare ones who really benefit from a cholesterol controlling drug…what do you take?

Statins have become so heavily pushed on everyone* as "the answer" when the liver itself produces 80% of our body's cholesterol…so for you it must be a whacky liver on overdrive.   For most people, especially older,having a higher cholesterol 250-300 apparently is not so bad as it prevents ALzheimer's…more research is showing we produce it because we need it, evey cell in the body needs it….I am glad there WAS medication to help you!!

Athena, having to gain weight seems like a dicey problem with good choices, not too much this, or enough that…how are you doing?   

I went to my VA dietitian and asked about a renal diet when my CKD was  still 40-37 egfr and they told me i didnt need it…now I am on my own as she is still promoting high carbs and the USDA;healthy plate"…which is never worked for me for weight loss…period.

Have you been able to add protein shakes, i.e. whey/brown rice protein to your diet for added calories?  do you limit sugar, or need to?


* I posted the SHARP report  on this site; what they felt was a raging success getting thousands onto 2 low dose statin drugs, with ONLY 3-4% of ALL of them who were helped even a small amount.  I asked a nephrologist about this and he said there were two other MAJOR studies pushing statins on dialysis and were not effective- his comments: :
Yes, the SHARP study showed very small benefit and questionable since it was a combined endpoint.
 Two large trials of statins in dialysis patients also showed zero benefits.

http://www.sharpinfo.org

http://www.tuitnutrition.com/2015/04/statins-and-diabetes.html

[MooseMom]

Muddygurl, I have always followed a healthy diet and have always enjoyed exercise, so imagine my surprise when, 12 years ago during a workup with a new physician, it was discovered that my cholesterol was 550 and my triglycerides were 1500.  These numbers are so far above normal that I requested a medal.  My doc said he'd never seen numbers that high in a non-diabetic.  That was how we knew that my kidney function had seriously declined.

I expressed my disappointment with having high blood lipids despite doing "all the right things" to have a healthy body, and my physicial replied, and I quote, "Even if you'd eat nothing but cardboard, you'd still have high lipid levels," referring to my low kidney function.

I've looked at the links you provided, and I will say this:  While it may be true that statins have become popular to the point of being overly or wrongly or optimistically prescribed, the fact remains that for certain patients, they are extremely beneficial and effective.  I am one of those patients. 

I do not have diabetes and have never had trouble with high glucose levels despite taking both statins and immunosuppressants.  I was fortunate enough to avoid dialysis, having had a pre-emptive transplant, so I cannot really speak to the effect of statins on diabetics nor or dialysis patients.

I take pravastatin and fenofibrate.  I took Zocor before my transplant but do not do so any longer.

I have a full hepatic panel done every year and have never had any strange results.

[Athena]

Well I am finally seeing my renal dietician next week. Today I had a good discussion with her over the phone. I informed her of my lab results and there were some surprising things I learnt from her!

Firstly, my target of a daily sodium amount of 1,500mg may be a bit too strict. She said I could go up to 2,000 mg (my Neph on the other hand recommended a target of 1,000mg). So must raise this with my Nephs!

Secondly, my slightly raised PTH as being just over the normal max amount is nothing to be concerned about. They apparently only worry once someone is 4-6 times the normal level. She even said that it is actually preferable to have someone with CKD with high-normal or slightly elevated PTH instead of low levels. I've never heard this before (I hope I have a well qualified renal dietician who knows what she's talking about  )

Thirdly, she confirmed what I seemed to have gleamed from my Nephs quite some time ago & that is, a low protein diet is no longer recommended to kidney patients (though that may vary for some). A moderate protein intake is now recommended in general.

Apart from eating in a way that supports one's specific lab results, there is no preventative diet as such that will save one from kidney decline. At least not from a evidence based scientific viewpoint at this point in time.

Of course, we will discuss all these details and more when we meet face to face, but I felt good about hearing all of this as it suggests that I may not be doing too bad at all in my dietary efforts

 

[Athena]

Fiinally sat down face to face with the renal dietician. Some good news and bad news. The good news is that she doesn't really need to see me! I'm too "early stage" for her to really worry about me (which is good news I guess). Other good news is that I don't need to worry about counting & restricting phosphorous as I am in the normal range, same also with potassium. I seem to be doing well on the sodium intake but she seems to think that 2,000 mg of sodium per day is a good target - I'm basically aiming for 1,500 mg.

Bad news is that my protein intake may be too high on the days when I eat 4 eggs (which I always do for breakfast) and also some meat for dinner. My protein intake should not exceed 50 gm per day. Which most days I'm not exceeeding, as I don't eat meat every day. My target is 1 grams of protein per kilo of body weight.

Nuts needs to be restricted due to high protein & phosphorous content. Can't go overboard with the dark chocolate either. Small amount of cheese I'm having is okay.

The worst news is that I should reduce my saturated fat content for the sake of my high LDL cholesterol. Problem is I don't want to take statins and I am a butter & mayonnaise loving person, I don't know what to do with this one.

So in summary, there is no scientifically valid way to eat to prevent kidney disease progression (although cutting down on protein & salt does have a kidney saving effect). A renal diet is only there for when someone has electrolyte imbalances that needs dietary intervention.

[MooseMom]

I have had to take statin for about 10 years now, and they have been a godsend for me.  I understand that they are overprescribed, but I have found them to be extremely effective.  I was allergic to Crestor, but I was immediately switched to an older statin, and I've had no problems at all.  My blood lipids went from being staggeringly high to being perfect in a very short period of time.  Please do try to keep an open mind. 

Most people on a Western diet eat to much animal protein and too much saturated fat.  If you are being told to merely cut back on these things rather than avoid them entirely, then I'd say that all of this has been good news!!!

No, there is no way to eat to prevent kidney disease, rather, there is a way to eat to lessen the burden to the body with CKD.

[Athena]

Hi Moosemum, nice to hear from you. Hope you're well 

The issue I have with my cholesterol is that it's not staggeringly high for me. The normal upper limit is about 5.5, whereas I'm low 6s or 7 only on account of an elevated LDL. My trigs & HDL levels are normal. My 2nd Neph said that my cholesterol is not an urgent priority - apparently it will be more urgent down the track to fix it up. My GP & other Neph have stopped pressuring me by now. Statins it seems are getting a bit of a bad rap lately. There seems to be conflicting evidence of their effectiveness as well, it seems. But I accept that you and many others have found this to be an excellent med.

Yes, it is good news about just cutting back a little bit on my nuts, dark chocolate & a protein. Also, my coffee intake of up to 3 cups a day is fine but I shouldn't go over that. Also these cafe lattes, cappuccinos should be included in my protein count because of the high milk content, but one of these a day is okay. She also approved of my occasional restaurant food indulgence such as pastas, ethnic foods etc, as long as I don't eat out more than once a week or so.

 

[Deanne]

I was on statins (lipitor) for several years, but then developed muscle weakness. I was training to walk a marathon when my kidney function was probably around 30% and I started having a great deal of difficulty putting in the necessary miles, so my neph switched me to Zetia. I'm still on it now, but I could probably discontinue taking it. My HDL has always been high and my total cholesterol is now on the low side.

I didn't see a renal dietitian until a couple of months before I started dialysis. That's when my phosphorus level first went above normal. It was hard to give up dairy! Until then, I ate whatever I wanted to. It still took 40 years to go from diagnosis to ESRD when I was 50. I moderated my protein intake to a degree when I was in my 40s, but I didn't count the numbers. I just tried to pay more attention to how much of it I was eating. Everyone is different and luckily for me, diet doesn't seem to have mattered as much for me as it does for others. Maybe it's because of how much I've been walking for several years. I completed four marathons in my 30s to 40s, which meant walking several miles almost every day, some days up to 8 miles after work, and up to 20 miles some weekends while I was training. I'd step out my door at 7 am Saturday mornings and sometimes not be done walking until 2 in the afternoon. I attribute this, along with genetics, to keeping my cholesterol and blood pressure low, and my neph said she thinks the amount of walking I did is why I managed to stay healthy for so long.

[MooseMom]

Athena, I am glad to hear that cholesterol is not an urgent matter for you right now.  If you can control it with modifications in your diet, that's the ideal!  If you find that you may benefit from the use of statins farther down the line, then it's something to consider. 

Deanne, I did not realize that you were were training to walk a marathon!  Wow!  I knew that you enjoyed hiking long distances, but I didn't realize to what extent you were training.  How impressive! 

[Deanne]

I'm not training for a marathon now. These were past marathons. For now, my goal is to hike up Mt St Helens. I'm not ruling out another marathon in the future though.

[MooseMom]

I'm not training for a marathon now. These were past marathons. For now, my goal is to hike up Mt St Helens. I'm not ruling out another marathon in the future though.

I should have written that you HAD BEEN training to walk a marathon.  I hope you reach that goal in the near future   

[Athena]

I'm not training for a marathon now. These were past marathons. For now, my goal is to hike up Mt St Helens. I'm not ruling out another marathon in the future though.

Deanne, that is sure very impressive. I've always admired marathon runners but have never quite got to jogging in the past. Always walking fast instead. One thing I've heard is that very strenuous exercise may be a threat to kidney function and am careful to never overdue it with exercise. In your case, you had a high level of fitness so your body would have coped well but in my case now, I feel a little hesitant about taking up strenuous activity (which jogging/running seems to be compared to walking). Have you ever been given specific advice about exercise in the past?

[KarenInWA]

I just wanted to chime in here. I've been dealing with low kidney function since 1998 or so, altho back then it was a lot higher than I have known for years lol. My cholesterol was always marginally high back in my CKD days, but not enough to warrant treatment - especially since the "good" cholesterol was always high, and the "bad cholesterol was not at any dangerous level. Then, at some point, my total cholesterol got lower - I remember at one point it was 144! Now I am post-tx by 3.5 years, and my cholesterol and tri-glycerides are in the nice, normal levels. I have never been prescribed a statin, and will not take one if a dr recommends it because I have low kidney function (since my #'s are good. I've heard that is what some dr's do, anyway.)  So does this mean I'm an anamoly? I live life living on the edge with late stage 4 kidney function due to permanent injury brought on by a biopsy. Creatinine ranges from 3.0 - 3.3. And no, I do not eat the healthiest diet!

KarenInWA

[MooseMom]

Hi Karen!   I'm not surprised that you've never been prescribed a statin; it doesn't look like you needed one.

How are you doing?  I'm assuming your kidney function is remaining fairly static?  Do your docs have anything new to say?

[Deanne]

Athena, I've never been a runner. I walked the marathons. I think My function was around 50% and I was spilling about 3 grams of protein/ day. My neph applauded me for doing them. The more active we are the better. I grew up being discouraged from being active and that was a mistake. I ended up feeling fragile, arty for me self, and focused too much on being sick. In reality, we can do a lot, almost as much as "normal " people.

 I was far from fit when I started training for that first one. I barely made it through my first 3 mile walk. In the end, my marathon finish times were always a bit over 7 hours. It's important to remove the word "but" from our vocabularies and get out there and make an effort to live.