Another newbie-Just getting ready.

[mike360000]

Hello everyone. My name is Michael Lamb and I'm getting close to that time. So I'm trying to learn what to expect.

I guess a better username would have been Bad Luck Mike as all my health problems but one are due to bad luck. I've had Ulcertive Colitis since I was 25. Had a transverse colon resection at 32 and now I have an ostomy, having it in 2010. After ostomy surgery I became dehydrated so badly my potassium went past 9 and my kidneys shut down. They were damaged from that amount of dehydration. It's been downhill ever since concerning my kidneys. Currently my GFR is at about 17.

Worse yet I remarried in 2007 after 14 years of being married to someone who turned out to be gay. That was their choice, what they wanted to be or prefer. However under such circumstances one shouldn't mislead a straight person to the point claiming to be married to them. Anyhow my new wife and I bought a home which turned out, had a broken septic line from the house to the tank, causing sewage to back up in the basement. I found out no insurance would cover it and it would cost $3000.00 to restore my basement. So I done it myself and unfortunately I caught a viral infection in my heart. I ended up with viral dilated cardiomyapathy. That was in 2008. My heart slowly begin to deteriorate. I was told in 2010 I needed a defibrillator but didn't understand enuff of the details, so I put it off until this past June. Now I have ICD defibrillator/pacemaker, 3 wire.

Back to my kidneys, because of my ulcertive colitis, though I suppose there are other reasons also, I have now passed about 255 kidney stones. I've had 13 removed in various ways. Just had one last week which was when my latest and worst kidney results came in. On top of these things I have low testosterone and low B12, needing injections for it. My lung function isn't too well either, but in better shape than my heart and kidneys. Also have lesser problems which is too much to detail here.

I don't yet know all the abbreviations for the terms you mention here or what some terms even means. I do know I do not trust health care workers, especially Drs. enuff to believe just anything they say. I've caught way too many, shall we say, stories. And just like they never warned me about one result of my ostomy surgery was becoming dehydrated. And you see where that led me! So, I am also trying to do a pre-checkup on what I really need to be considering about my upcoming date with destiny. Which I am told is only a matter of months at best.

As for myself, I am an historian, but not any historian. I have had my many years of historical education through government sponsored schools and have learned much if not most of what is taught in public education is not necessarily the truth. After several years and degrees later, and many hot and real arguments with professors over historical differences I was privately tutored by professors in Classical History. Officially I carry the title of Classical Historian Western Civilization. I started learning history by the time I was old enuff to read. You see it runs in my family as I am directly related to the family of Andrew Jackson. So close in fact I received inheritance passed down through the family originating with the family of Andrew Jackson. All I ever wanted out of life was to be a simple farmer or some simple blue collar job, or as I started out in education, maybe a teacher of history. But life hardly ever works the way one plans or hopes. But it has given me much more time to devote to my studies, which I have always loved. You'll just have to stop me if I get carried away with civics, history or current events and politics.

Anyone having any first time pointers for one in my predicament, I'm all eyes and ears. I am still trying to figure out why I stay so fatigued all the time. Been this way now for several years, but it gets worse at times. Drs. claim they don't know... And I somewhat question that...

Thanks for taking the time to read my long comments and rant.

Michael

[Angiepkd]

Welcome Michael!  You have come to the right place to find answers and support.  Sorry that you have had such a run of bad luck with your health.  I have been on dialysis since March, and feel better now than I did the year before starting.  I was tired, weak and had "kidney brain".  I do home hemo with NxStage.  I am guessing that you will need to do hemo since you have an ostomy?  Or are you able to do PD?  Your nephrologist should be talking to you soon about getting an access in place.  You will want to be ready when the time comes, and hopefully avoid the neck catheter.  Hope everything works out for you.  Looking forward to hearing more about history from you!   

[mike360000]

Hello there Angie,
I think the NxStage is home dialysis; but what's PD? At a dialysis center? I do know they have some type abdominal dialysis but they don't think that is possible for me, because I too have a hernia at my ostomy site.
My wifie is a nurse so I'm hoping that will give a head start, though she isn't familiar with this kidney stuff either. I also feel extremely tired, especially in the mornings and my stomach is usually upset, but no throwing up.
I am usually this way until after lunch. By afternoon the upset is gone but I always stay tired.

My Dr. who is a professor and researches in kidney genetics told me my kidneys shouldn't make me feel weak and tired or have any upset stomach until they passed a point of function that then required dialysis. Although
I don't necessarily believe this. Which is another reason I am always skeptical of Drs. So how do I go about understanding which site is the best place for hookups? And how much trouble, or what's involved is making that fistula?

I'm waiting for my latest blood tests now. I'm not confident.... Just a matter of time...

Thanks,
Michael

[MooseMom]

Hi Mike!

I would think that anyone who has had the health problems you've had would experience chronic fatigue!  I'd be surprised if you didn't!  I'd be interested in hearing your latest blood lab results once you get them.  Reduced kidney function often results in anemia, so that may be your problem.

PD is peritoneal dialysis and is done at home.  You may or may not be able to use this modality because of the hernia at the ostomy site, but a surgeon would be able to give you a definitive answer.

Might I suggest you visit www.kidneyschool.org. and look through the modules.  It is the best resource on the web for people new to kidney disease/dialysis.  It is free and is an easy read.  It explains what the kidneys do, what happens when the kidneys are diseased or have failed, how dialysis works and which modalities are on offer.  It also explains fistulas and various forms of accesses.  Have a read, and then you'll be able to form specific questions in your mind that perhaps you can pose here.  IHD is a font of information! 

[mike360000]

Sorry about the double  post.
It didn't show the first time.

Thanks,
Michael

[mike360000]

Thanks for the reply MooseMom.
Just got my latest results over the phone.
BUN was 41 improved from 51.
Poatassium 4.5- normal (I take extra for low.)
Creatinine 3.54 improved from 4.05.
GFR 18 improved from 14.
Hemoglobin was normal though I don't recall the numbers. (I never show anemia.)
Nothing else noted out of the ordinary.

Any thoughts?

Other things I will try and add later.
I will definitely look at the link you gave.

Thanks so much,
Michael

[MooseMom]

Ok, well, those results don't look TOO horrible, at least for the time being.  With severe chronic kidney disease (CKD), it's important to look at potassium levels and phosphorus levels, too.  Kidney School will explain why those two things are particularly important.  Do you know your phosphorus level?  Did they tell you?

I really don't know a lot about colitis or heart disease and the specific challenges they pose; all I can tell you about is kidney disease, so I beg you to be careful with any advice or suggestions that any of us may give you.  You have multiple co-morbidities that would baffle most of us here on IHD.  But I do have some questions...

When you post about your docs, who exactly are they?  Are you seeing a nephrologist?  Do your doctors work well together?  Do they communicate with each other?  Do you feel pretty comfortable with your medical team as a whole?

It sounds to me that technically you do not have kidney disease, rather, you have had kidney injury.  On the one hand, severely damaged kidneys tend to become even more damaged as time goes on.  Think of a very fine filter that has sustained a lot of damage to the point where only about 20% of it is still effective.  Imagine that the damaged filter STILL is called upon to filter the same amount of fluid going through it.  I'm sure you can see that the filter would have trouble keeping up with the demand, thus leading to complete failure.

On the other hand, mechanical filters do not have the ability to heal themselves, whereas kidneys can.  Does your nephrologist hold out any hope that your kidneys may heal to any degree at all?  Or does s/he anticipate eventual failure?  If it's the former, it is entirely possible that you may avoid dialysis altogether, although to compensate for the damage already sustained, you'll have to be careful to control blood pressure and blood lipids.

Well, I'm just babbling now.  I have a lot of thoughts, but I don't know which of them would be relevant or helpful.  One thing that concerns me, though, is the number of kidney stones you've had to endure.  I can't imagine that those episodes help your renal function.

Come back with more questions/comments!

[Poppylicious]

Hi Mike, and  to ihd!

[Joe]

Hi Mike, and welcome to the site! I've been doing PD for 2 years and really like it as a modality, but agree that with your hernia it may be problematic. Your surgeon will have the final word as to what will work or not. I think you'll find the folks on this site are really helpful in answering questions about dialysis. Good Luck.

[mike360000]

A few more things.

I do have a nephrologist, though I mite not have been clear on that earlier. He is actually a professor of nephrology at Wake Forest University. Was a member at John Hopkins University before moving to North Carolina. While teaching nephrology he also is a researcher of middle kidney genetics. (I forget the proper name for this.) He has a limited number of patients and I lucked up. I have also went to the Cleveland Clinic in Ohio, which is also where I had my CRT-D heart defibrillator/pacemaker implanted. My heart is holding steady and my blood pressure is normally decent except my kidneys are what is slowing performance now. I am having to take Lasix in combination because of my kidneys and heart, for water retention, although it isn't high at the present.. The Drs really can't say how much of the water problem is due to each. My stomach problems have been mostly taken care of except for the hernia and I am slow to absorb liquids due to no colon and I have to take vitamin B-12 injections due to the fact I have no colon, which is where one gets most of their B-12 from.

In the past I've had several problems with cardiologists and have went through several. That's why I ended up going to the Cleveland Clinic. They solved my main problems quickly and actually helped me more that an other place concerning my heart. Nephrology Drs at Cleveland Clinic didn't have any suggestions over my own nephrologist.

I've had many stones and was told they would eventually effect kidney performance if I did not slow their occurrence. I did slow them, now having maybe 2-3 a year. But it was actually the damage from dehydration that destroyed my kidneys. I have test reports from before my ostomy surgery and after my dehydration showing the falloff/difference/damage. Before ostomy creatinine ran about 1.6-1.9. After dehydration during a followup visit to my Gen Phy. it showed about 2.6, and the Dr referred me to an endocrinologist who then referred me to my current nephrologist. Stayed around 3, mainly just under, until this year and it started spiking in the upper 3s and over 4. GFR has been steadily downhill, always below 30 since my dehydration. But this year has been below 20.

Don't know if it helps but I got desperate enuff to try some herbal therapies. Started over a week ago on Alpha Liporic Acid and Nettle Leaf Tea. The test report numbers I posted today are the best since April. I don't know if the herbs had anything to do with it or not, but I can be hopeful.

Dr. had already told me earlier this year it was only a matter of time, maybe a couple of years, but he also said that could vary considerably. At this rate though, it looks like I could now be within a years time frame. He claimed there was hardly anything one could do for kidneys once they lost their function, or as they lost function. Anyhow, with the problems in the US Government, and many of them concerning Obamacare, I don't particularly relish the thought of having to deal with starting dialysis if crap is hitting the fan. And I see no way of this country recovering from what's happened to it. I just wanted to try and beat the rush before it happens, at least learning what I am facing. Which is one of the reasons I am on here as early as I am. I know where I am headed and the country, so I'm just trying to take care of as many things as possible in a timely fashion.

Thanks,
Michael

PS: Poppylicious, loved viewing your pics. Now if I can just find time to read the links ya'll gave me.....

[MooseMom]

Mike, it may help you to know that once you start dialysis, you will qualify for Medicare through the ESRD program, no matter your age.  I believe that only ALS and ESRD are covered under the Medicare program regardless of the patient's age.  So instead of worrying about Obamacare, your concern should be focused on preserving Medicare.  You can go to Medicare's website and read more about the ESRD program works.  Needless to say, IHD members can give you plenty of information about THAT!  Also, Kidney School addresses insurance matters/Medicare.

There are several things you can do to help preserve what little renal function you have left.  One is to sure to control your blood pressure.  Another is to limit the amount of dietary protein you consume.  Has anyone spoken to you about a pre-renal diet?

[MooseMom]

http://www.medicare.gov/people-like-me/esrd/esrd.html

Unfortunately, due to the government shutdown, the information on this site is "not up to date", but I am not aware of any significant changes to the system in the past 10 days.

[mike360000]

Hi there MooseMom,
I'm already on disability due to my stomach and stones, so that problem is already settled. I'm just seeing and hearing too many bad results from this *unAffordable Health Care Act* that really doesn't bode us well down the road. I can pass along several incidents and observances that are already showing it can hurt us much more than help us. It really will hurt us more, especially the elderly as it is implemented. Plus I am not sure how long the government will even remain solvent at the rate it is going.

Until 2008 when I caught that heart viral infection, I was somewhat active, though I could not work a 40 hour week. By the time of my ostomy in March of 2010, I couldn't do much of anything. I can do light yard work and cleanup the house and that's about it. I improved for awhile, but as my kidneys and heart deteriorated more, I slowed down again. And now after my CRT-D implant, I have picked up a little more again, but still behind where I was before March of 2010.  Now I can't get going in the morning, feeling too sickly, usually taking me about 3-4 hours before I can get out of the house. While I'd rather be able to work and do other things, I'm also a scholar, so I simply devote more time to reading and my studies. This helps considerably in at least keeping myself occupied.

I wasn't aware of any protein restricted diet for kidney problems, although I heard that too much protein could be for a person anyways. I'll have to check more into this. I'm going to try and follow up on some of the links now and see what I learn. BTW, in regards to my blood pressure, which someone mentioned. My BP usually runs about 110/68. Anything lower and I start becoming lethargic due to it being too low.

Thanks,
Michael

[MooseMom]

I'm not sure how the elderly will be negatively impacted since they have Medicare to rely on (as so will you should you go on dialysis), but I may be missing something.  Maybe Medicare for everyone is the answer, I don't know.  I have many older relatives who heaved a huge sigh of relief once they hit 65.  There are some thread on the Political Threads forum you might be interested in if you enjoy talking politics, especially the politics of/in the health care industry.  You'll quickly learn about Kent Thiry.  Have fun!

I'm grateful for the ACA since my husband has kids who can stay on his insurance until they're 26.  But that's another topic...which you can find in the Political Thread forum.

Three ounces of protein a day is usually what is recommended for people with severe CKD, although for you with your other issues, that amount might be not what is suggested.

Good luck!