New and Glad to Be Here

[DayaraLee]

Hello, everyone. I'm so glad to finally be a member here at IHD. I've lurked for almost 4 years and feel like I've gotten to know some of you through your posts. Thank you in advance for reading my introduction - it's pretty long, sorry for that. After four years of lurking and worrying, it just came flooding out.

My reason for being here is actually my husband. Because of out-of-range blood test results in 2011 (the dreaded creatinine value and eGFR), Grey was diagnosed with CKD 3a. He has multiple risk factors for both progression and poor cardiovascular outcome. Though he knows his diagnosis, he prefers to ignore much of it or any discussion about it, instead spending a minimal amount of time and effort on maintaining an okay-I-guess A1c of 7.5-ish and good BP control. On the other hand, I'm obsessed, stressed, and anxiety-ridden, believing one minute in a happy future together and in the next, growing old alone.  Going for labs and awaiting the results every six months are the two things I fear most in life right now. Almost a month before each blood draw, I make myself nearly sick with worry, and online research about his condition consumes me.  I envision all kinds of horrible trouble, including the inexorable march forward of this disease.

My way of coping – or not coping – is probably just as much a negative factor in our situation as his actual medical condition. (Admitting it is one thing, doing something about it seems to be another.)

A timeline of how we got here:

2005 – At 30 years old, had his eyes checked due to changing vision. Good thing - diagnosed shortly after with diabetes type 2 and Hypertension. Surprising, yes, but not horribly shocking. We’re both very overweight with poor eating habits. Got BP and sugar under control with the help of many medications. Living blissfully on, with regular 6-month checks and normal test results.

2009 – Our first metabolic panel with an increased creatinine value. Referral to a nephrologist. Freak-out #1 for me, reading just enough online in the next three weeks to convince myself he was headed straight to kidney failure and dialysis. Grey figured it wasn't anything to worry over, and we'd find out what it was and how to fix it. Nephrologist said not to worry – he’s a big guy, African-American, young. Just cut back on the fried food, and all would be well. A retest showed within range, and an ultrasound found nothing out of the ordinary.

2011 - Another abnormal creatinine result. First "high” in 2009 was 1.3; this time it’s 1.6. Back to nephrologist (different one), who says damage has occurred probably due to high BP and to come back in 6 months so he can see how quickly it's progressing. I spend months reading and trying to absorb everything I can about hypertensive kidney disease, diabetic nephropathy, progression, cardiac risk factors, dialysis, etc. Found IHD and began lurking.

Now - Creatinine values have been between 1.2 and 1.45 for about 5 years, but every six months, I’m convinced it’s happening - the progression of his CKD. And I begin planning and preparing for bad results, an uncertain future, a sick best friend and partner. I do a good job not letting Grey know about any of this, except when I try to sneakily change aspects of our routine or diet to guard against the dreaded disease progression.
 
Latest creatinine results were 1.54 from a draw back in February with the PCP. Grey knows my obsession with his labs, so he changed his portal password, hoping that if I didn't have access, I wouldn't stress. I broke down and point-blank asked about them last month. Zero to 100 in 5 seconds - my worry is in max overdrive. The next labs and appointment with the neph are at the end of the month. Will the creatinine be lower? The same? Higher? What do I prepare for? I have the deepest respect for those of you who have developed coping skills for this. I’m still searching. 

But I am hugely happy to be here! (And very rarely this wordy.) I hope that I can in some way add value to this wonderful and supportive community.

[Rerun]

Welcome, thank you for joining.  Keep us posted.

Welcome - Rerun, Admin.  

[PrimeTimer]

Welcome, DayaraLee!  By lurking you've got a bit of a head start on things.  Good job! You're at the right place! I completely understand how you feel. My husband also has diabetes (insulin dependent) and prolonged high BP was basically what caused him to go from Stage 4 ESRD to Stage 5 and dialysis. He still has to take BP meds but feels better since starting dialysis and able to still work fulltime. We do home-hemo using the NxStage cycler 5x week. This method helps to keep his fluid under control more often than the 3x week in-center method. Maybe this is something you guys can look into. Altho offered to him, my husband didn't want to do PD because of the sugary substance used and he didn't want to mess with a catheter in his belly and risk infection because as you probably know, diabetics are slow to heal. Good luck to you, try to stay strong and when you feel the need, come here and let it out and tell us what is going on.   

[Michael Murphy]

Welcome to the site. I read your introduction and I saw as almost every one does you worry about the numbers.  My advise is to forget the numbers, modify his diet, (see a renal dietician ), let the nephrologist worry about the labs.  Why, if he has his high blood pressure and his diabetes under control he may have stopped the disease progression.  I personally had elevated creating for 20 years before I started dialysis.  Two, the best way to determine when to start is how he feels, if feels he feels good the numbers are meaningless, some people are deathly ill with the same level of someone who feels bad.  So to sum up live your life, let the doctor worry.  I am not suggesting hiding your head in the sand.  But don't ruin your life waiting for something to happen which may or may not occur.  I know one women who had a fistula installed 7 years ago and is still not on dialysis.

[DayaraLee]

Thank you for the welcome! Just by sharing all of that and having it acknowledged and recognized, I feel a greater sense of calm. That means a lot.   

Welcome, DayaraLee!  By lurking you've got a bit of a head start on things.  Good job! You're at the right place! I completely understand how you feel. My husband also has diabetes (insulin dependent) and prolonged high BP was basically what caused him to go from Stage 4 ESRD to Stage 5 and dialysis. He still has to take BP meds but feels better since starting dialysis and able to still work fulltime. We do home-hemo using the NxStage cycler 5x week. This method helps to keep his fluid under control more often than the 3x week in-center method. Maybe this is something you guys can look into. Altho offered to him, my husband didn't want to do PD because of the sugary substance used and he didn't want to mess with a catheter in his belly and risk infection because as you probably know, diabetics are slow to heal. Good luck to you, try to stay strong and when you feel the need, come here and let it out and tell us what is going on.   

PrimeTimer, though I'm sure many or most on IHD will wonder at my level of concern at this stage of things, I really do feel better for getting a head start. And in all my online wanderings, I've never come across a better community of people and so much valuable information. If and when the decision must be made, my vote as care partner will be home hemo with NxStage, whether frequent daily or extended. The needle-less PD still holds some appeal, though, especially to the scaredy-cat in me. But with his diabetes, a huge factor would definitely be which poses the least risk of infection.

Welcome to the site. I read your introduction and I saw as almost every one does you worry about the numbers.  My advise is to forget the numbers, modify his diet, (see a renal dietician ), let the nephrologist worry about the labs.  Why, if he has his high blood pressure and his diabetes under control he may have stopped the disease progression.  I personally had elevated creating for 20 years before I started dialysis.  Two, the best way to determine when to start is how he feels, if feels he feels good the numbers are meaningless, some people are deathly ill with the same level of someone who feels bad.  So to sum up live your life, let the doctor worry.  I am not suggesting hiding your head in the sand.  But don't ruin your life waiting for something to happen which may or may not occur.  I know one women who had a fistula installed 7 years ago and is still not on dialysis.

You're so right, and the rational side of me agrees with you 100%! Now, if I could just convince the irrational side of me to set aside those many knee-jerk, fear-based reactions...    Every time we see his neph, I take a breath to ask about a referral to a renal dietitian, and Grey gives me the mind-your-own-business, irritated look that promises a long conversation later about not "mothering" him. So far, I haven't spoken up. In the meantime, I gather recipes that are moderate in protein and fit in a decent diabetes regimen and sneak them into the weekly menu when I can.

Thank you again for the welcome! I look forward to posting on a regular basis.

[Charlie B53]

It took almost 15 years for my kidneys to deteriorate enough that I felt I needed Dialysis.  And I was still near 20% function, but my legs swelled so badly they leaked almost constantly.  That swelling disappeared in my first week on PD.   Three years and no infections, so far.  It really isn't that hard to be very careful and prevent infection.

Stalling the progression of the desease is the best thing you two can do.   The very first thing is to get absolutely religious about taking all ordered medication.  When I was taking pills straight out of the bottle I didn't do well.  Once I received one of those week-at-a-time 4 times a day pill boxes, I rarely ever miss a dose.

If he takes meds, get one, keep it next to the kitchen sink, he has to walk past it a number of time a day and then has NO EXCUSE not to take his meds.    Getting my blood pressure under control made the biggest difference in keeping my kidney functioning as well as they did for as long as they did.

Study the renal Diet.   See if you can slowly improve your eating habits.   Sudden changes never work well, most men hate change.  Very slowly start substituting healthier items in place of some of the not so healthy things he normally eats.  Do it slow and he won't mind so much.

Take Care,

Charlie B53

[kickingandscreaming]

Welcome DayaraLee.  My own timeline and "co-morbidities" parallel your husband's. I was spotted with similar level of creatinine, also in 2009.  I have very well-controlled Type 2 Diabetes and for years no so well controlled BP.  I think the BP did me in.  It took me from 2009 to late 2015 to crash.  But I'm 74.  Your husband has youth on his side, but he will need to wake up enough to cooperate with the very few changes that neprology offers to slow the progression of the disease, e.g. small changes in diet, managing sugar and BP.

I do PD, even as a diabetic (altho my A1c is lower than your husband's because I eat a low carb diet, instead of meds).  I don't worry about infection any more than I would if I didn't have it. Although it is always possible to make a mistake and contaminate yourself doing PD, I think the most important part is to be careful and use good technique-- and the "get religion" about how important it is to avoid infecting yourself.  I've only been doing this a short time (since January), so I  don't have a long track record to brag about (not that I would).  But I do believe that not everyone has to succumb to infection on PD.  I'm needle phobic, so as long as I can put off hemo, the happier I'll be.

Good luck.  Your challenge, as you know, is getting your husband on the same page so he can take as much responsibility as possible for the progression of his CKD.

[Michael Murphy]

It's not mothering, pre and post dialysis diets are dramatically different.  The changes I made gave me 2 years of reprieve from dialysis.  The simple fact is that many things ( Advil for one) that can cause additional damage.  The diet not only effects him it effects you to.  In addition he is not the only one who will suffer in dialysis you both will.  I know he wants to ignore this but planning a renal freindly diet will extend the time he has dialysis free.  Stay of for several years and the new development work on alternative treatment will be on line.  Listen dialysis is not the worst thing that's happened to me but the truth is it dominates my life.  Explain that you want to enjoy a few more years of life free from the 600 pound gorilla that is dialysis.

[DayaraLee]

Stalling the progression of the desease is the best thing you two can do.   The very first thing is to get absolutely religious about taking all ordered medication.  When I was taking pills straight out of the bottle I didn't do well.  Once I received one of those week-at-a-time 4 times a day pill boxes, I rarely ever miss a dose.

Charlie, he calls his the pill-o-nator, and it's been a tremendous help in getting him on track and on time for all his meds! He loves tech gadgets of all kinds, and this is about as low-tech as you can get, but something about the organization appeals to him. Regardless, I'm grateful for it and thank you for reminding me how important it is to remain diligent.     I appreciate the reassurance that PD doesn't necessarily lead to infection, too. I'd certainly be a motivated learner regarding proper procedure and technique. I also need to realize that the modality will be his choice, not mine. I'm obviously an over-planner!

Your husband has youth on his side, but he will need to wake up enough to cooperate with the very few changes that neprology offers to slow the progression of the disease, e.g. small changes in diet, managing sugar and BP.

Your challenge, as you know, is getting your husband on the same page so he can take as much responsibility as possible for the progression of his CKD.

Kickingandscreaming, sometimes I think that because he's still young (just shy of 41), he just doesn't want to believe that all these things could be going wrong with his health. It took a while before he accepted that he would  be on diabetes medication for the rest of his life. Granted, we both know that if he could get to a healthy weight, perhaps some of the meds could be stopped. I know it's never too late to make a positive change, but he'll probably have to reach a level of acceptance before he makes a commitment to do what's necessary. My struggle will be allowing him to find his way there, with some pushes and nudges along the way. He's stubborn, and I can be pushy. Not the best combination!   

It's not mothering, pre and post dialysis diets are dramatically different.  The changes I made gave me 2 years of reprieve from dialysis.  The simple fact is that many things ( Advil for one) that can cause additional damage.  The diet not only effects him it effects you to.  In addition he is not the only one who will suffer in dialysis you both will.  I know he wants to ignore this but planning a renal freindly diet will extend the time he has dialysis free.  Stay of for several years and the new development work on alternative treatment will be on line.  Listen dialysis is not the worst thing that's happened to me but the truth is it dominates my life.  Explain that you want to enjoy a few more years of life free from the 600 pound gorilla that is dialysis.

I keep reading the same stories over and over again about the implantable artificial kidney, and that human trials may begin before the end of 2017? I hope and pray that they can continue to get the level of funding needed to continue their work to its end! This option seems so very long overdue. It's so frustrating to think that science and medicine need a pending epidemic of CKD in order to innovate and improve patients' quality of life. It is something I think about - holding out for 10-15 years if possible and having this type of alternative available.

[Michael Murphy]

The one thing about dialysis is you get to know your fellow inmates, the guy in the chair next to me, funny but a diabetic, he got a double transplant about 6 months ago, kidney plus pancreas. Saw him a month ago, no dialysis, not a diabetic any more.  There are other choices now.  If by diet change he can put the dialysis sentence off for several years he may be able to avoid it all together if the kidney damage is stabelized.  Plus even a delay of two years is two more years free of dialysis.  Plus remember that dialysis is not the end of the road it's more like a speed bump.  Search dialysis Grand Canyon on the site and you will see a amazing photo a a amazing individual doing hemo by himself on a raft on shore in the Grand Canyon.

[Charlie B53]

Stalling dialysis two more years also allows the researchers two more years to develope the implantable kidney.  But I won't hold my breathe waiting for this one.

I have to ask, is your Husband a large person?   I am.  Most my life I have been 220.   A bit of a jelly roll but not what I would called morbidly obese, heavy, yes, a little fat, maybe, but strong, and healthey, or so I thought.   Then I hurt my back terribly.  Unable to work, barely able to walk for almost 2 years, yet I still ate the same.  So I started gaining more weight.x   All this time I knew there was a problem developing with my kidneys, but being a 'Guy' I did nothing about it.   Fast forward almost 15 years I was 272 and my kidney were crossing into Stage 5.  My Neph was talking about I would soon be needing Dialysis.   My legs had been swelling for years already, leaking often, infected at the leaks a couple of times ending up hospitalized for 12 days once.  I started gaining even MORE water, ballooning up to 310 while healing from having the cath put in to start PD.      It was about this time the Dr decided I was fully Diabetic and tried oral meds, they didn't do anything.  So I ended up with two types of insulin.  I tested and shot 4 times daily.  I brought my a1C down to 6 within 90 days and have kept it there ever since.   With 2 liters of PD fluid in me constantly I cannot eat near the volume of food that I used to, which is a good thing as I am no longer active enough to burn off that much.  I began loosing weight.  In the first two years I lost over 100 pounds.  My insulin demand has reduced so much, where is was taking 50 units of Lantus a night I now only need 20.  My sugars usually remain under 150 during the day and I have not used any fast acting insulin in almost three months.   Prednisone has put 35 pounds back on, but I am not taking it and already lost 3 pounds.  I expect the rest will slowly melt away again.

Fear of infection should not be a factor in decided which method of dialysis to use.   Both methods have their risks.  For me, PD works very well.  Nightly treatment is far more gentle to the body than the 3 times a week of hemo.   Those doing home Hemo will swear that it is far preferable to going to the clinic 3 times a week.  The daily treatments do not shock the system as much and very well tolerated without the severe side effects some have of clinic treatment.  So if your Husband does elect Hemo, I hope you both seriously consider Home Hemo.

I've almost written a book again.  Sorry.

Take Care,

Charlie B53

[DayaraLee]

I want to do, and help him to do, whatever's necessary to delay and avoid complete failure of his kidneys, whether it's for 1, 2, or 20 years, but it sure does help to see that there is life (with all its good and bad) if the worst happens. I hadn't tried the site's search function yet - what an awesome feature!

Charlie, he's an ex-high school athlete who ate whatever he wanted while growing up, and he never gained weight because of all the activity. When he went from the high school football and track field to a college desk and then a very sedentary IT job, the weight came on fast. And of course much of it in the worst place - the belly. Despite knowing what size his clothes are, he still sees himself as just "chunky." He weighs around 275 right now, and except for the stomach, a lot of it is still muscle. Diabetes runs in his family (probably part hereditary, but mostly bad nutritional habits and weight gain in adulthood), and he does care about his own health. Like you were, he's being very "guy" right now and assuming that unless the doc rings the 5-alarm fire bell, that he must be fine. And I can only push so far, before he pushes back.

I've wondered, though, why our PCP hasn't recommended insulin yet?? He's on 4 different oral diabetes meds, which plays havoc with his GI tract.    I appreciate knowing other people's stories! Please don't apologize for writing a lot.

[pato]

Welcome to IHD. I too was a long time lurker, 7 years to be precise before I registered.

[DayaraLee]

Thank you, Pato! I'm glad I'm not the only one who took so long.

I read your intro and desperately want to know... How do I get to be "Her Highness Daya"??     It sounds like you and Toni have an awesome relationship! Congratulations. It's amazing what you can withstand and the obstacles you can survive with the help and support of family.