Just found out this week I'm Stage 4

Hi, not sure if this is the right place to post (probably isn’t, I’m sorry) but I just learned this week that I have Stage 4 kidney disease (after having only mildly elevated creatinine for years) and I am going to see a nephrologist tommorrow. I’m just still kind of freaking out about all of this.

I should tell you guys, I’m on Cyclosporine-A, which is known to be extremely nephrotoxic. The problem is, I have no choice but to be on CyA. I can maybe try to lower the dose - that is what we are doing now - but I have to take it.

CyA hit my kidneys hard apparently. And my doctor - he should have monitored me every two weeks, it turns out, but I was his first patient ever on CyA and so he had no clue (but I didn’t know he was clueless) and had me doing labs only every 3 months. So who knows when my kidneys went belly-up in those 3 months???

So here I am, I have no idea if I have chronic kidney disease or if this is acute. Sometimes CyA causes acute, but it can also cause chronic. I guess hopefully the nephrologist tomorrow will have some ideas about what to do.

All I know is I got a call on Sunday, my creatinine was 3.3 (it had always been running about 1.3 before) and my doc was trying to play it cool but I could hear in his voice, he was worried. Plus, the doc never has you come in on a Sunday unless he is worried, you know? So…the test is repeated, this time it’s 3.0 Oh, and the BUN is over 40, but he never told me the exact amount. He claimed the GFR was 18.4 but I don’t know if he calculated correctly. He’s not a nephrologist after all.

So then he tells me to go home and drink a lot of water, that most likely this is only because I am dehydrated. (I think he’s in denial - I think he is really really freaked out and scared over all this, and he’s in denial, la-la land - I mean come on, 3.3 and 3.0 and it’s just because I’m dehydrated? I don’t THINK so…)

So I go home, looking stuff up on the internet, what I’m looking up scares me. And my husband is in denial too. He says he refuses to worry about anything until the doctor tells him something is wrong, and since Dr. T. (the doc who called me) is playing this off as, “oh, it’s really no big deal and you’re fine, but I think I’m going to send you to a nephrologist just for the hell of it…” So of course my husband is thinking this is reversible, I will be fine in a day or two, no problems. I know better. Well, I mean, there is a small chance it’s acute, but I don’t believe it is. I’m certainly not getting my hopes up.

Right now I’m pissed at my doc and my husband because they both seem to be in denial. At first I was thinking they were just trying to blow sunshine up my tailpipe, but I really do think, on second look, that they are in denial and neither one of them can handle this.

I keep telling my husband, trying to show him stuff - “you DO know that if this is chronic stage 4, that I’ll need dialysis soon - probably within a year, right?” And he just kind of pouts and says he’ll believe it when the doctor tells him that and not before.

This is hard enough without my doctor and my husband both deciding to lose their grip on reality.

I hope my Nephrologist tomorrow has a grip on reality, and I hope he makes it clear beyond any doubt how serious this is. Hubby is coming with me, and I want hubby to GET it. If he keeps acting like this, I swear I will go to dialysis and he’ll say, “oh, yeah, there’s that hobby club you go to three times a week…”

My doctor is repeating the kidney tests so many times I’m looking like a pincushion. I mean, he went from once in 3 months to once every day? Like I said, he’s freaking out.

I haven’t had many signs yet of kidney disease. I have been getting these weird little bruises all over, that is the only sign I can think of. And I’ve felt a bit more tired than usual lately. And if I don’t take the diuretic I’ve been on for a year for high blood pressure, I swell up like a balloon (incredible water retention thing) and my blood pressure shoots up by 30 points or so within 24 hours. (Oh, that’s another thing - my doc said, “go off the Hydrochlorothiazide, that’s why the reading is 3.3, you are just dehydrated.” Well, doc, I was on the HCTZ 3 months ago when I was tested then, and I tested fine at 1.3…sigh. I wish the doctor would get a grip on reality. I feel like I"m the only person in the room who SEES this and looks at it clearly. Everyone else is bonkers right now. Did you guys go through that when you were first diagnosed? Did people ever come around or were they still in denial?

I wrote some long e-mails to a nurse in-law of mine - a sister-in-law - and I wrote three or four, starting on Sunday when I was called in, told her about the creatinine levels and Stage 4 and cyclosporine-A being bad for the kidneys and all of that. Then another e-mail the next day when the test was repeated with the same results (more or less) the next day. Then another e-mail today. I finally wrote, after completing the last e-mail, “I can see I’m boring you with this, so I’ll shut up and go away now.” I mean, she always writes back, why would she all of a sudden ignore this? All I can think of is she thinks I am lying. That’s all that makes sense to me. And that makes me mad because obviously I am not lying.

Today she wrote, “I will have to go back and reread your e-mails to grasp the situation you are in. I guess I am in denial.” Well, I don’t know how it could be any clearer. My kidneys are mostly dead and I’m going to be on dialysis soon. Why is that so hard to comprehend? I think she just thinks I am making this all up, lying. Partly because Dave (hubby) has not told his parents or his brother (this nurse is married to hubby’s brother) yet or anyone because he’s still convinced that nothing is wrong. So the nurse sis-in-law is thinking, nothing is wrong because Dave hasn’t called us - so that means L. is lying about her kidneys…

Grrr!!!

So tomorrow I go and find out how long before dialysis. And with any luck, a ray of reality will smash its way into my husband’s head. Really I’m just irritated as all get out with him right now. I need him by my side right now, not in fairy tale land where the nephron fairy comes and gives me new kidneys!

Thanks for letting me rant. So I’m learning about hemodialysis. I have really crappy veins. They always blow. Takes them 2, 3, 4 blown veins before they find one that holds for an IV. They can’t tolerate even a drip IV, I have to use a gravity type of IV. So how on earth are my veins going to tolerate hemodialysis? Even if they do put in a shunt thingee? And if they put in a shunt thingee, does that mean I won’t feel the needle in the vein quite as much? I hate it when I donate blood, and they run the needle through my vein (almost every time they do this, because my vein collapses, then they pull it out, ram it in, pull it out, wiggle, ram it through, just about have marital relations with my vein for goodness sake,) and I hate hate hate the way that feels. I feel like I could handle all of this except that part. I do not want to feel that huge needle going through the other side of my vein. And I don’t want them constantly blowing my veins and having to jam that huge needle in my jugular or whatever. Or have them shrug after blowing every vein and say, “well, that didn’t work out well, I guess you have to die now, bye bye.”

This really sucks, doesn’t it? I’m not looking forward to dialysis and the sickness and the vomiting and the cramps and passing out and the dietary restrictions and the bones dissolving into dust. I do already have anemia so I have that down pat now. Most of all I’m not looking forward to tons of blown veins and the stupid huge needles.

Thanks for letting me vent.

I’ll probably be back whining again after my appointment with the Nephrologist tomorrow.

L.

[QUOTE=Unregistered;12128]Hi, not sure if this is the right place to post (probably isn’t, I’m sorry) but I just learned this week that I have Stage 4 kidney disease (after having only mildly elevated creatinine for years) and I am going to see a nephrologist tommorrow. I’m just still kind of freaking out about all of this.

I should tell you guys, I’m on Cyclosporine-A, which is known to be extremely nephrotoxic. The problem is, I have no choice but to be on CyA. I can maybe try to lower the dose - that is what we are doing now - but I have to take it.

CyA hit my kidneys hard apparently. And my doctor - he should have monitored me every two weeks, it turns out, but I was his first patient ever on CyA and so he had no clue (but I didn’t know he was clueless) and had me doing labs only every 3 months. So who knows when my kidneys went belly-up in those 3 months???

So here I am, I have no idea if I have chronic kidney disease or if this is acute. Sometimes CyA causes acute, but it can also cause chronic. I guess hopefully the nephrologist tomorrow will have some ideas about what to do.

All I know is I got a call on Sunday, my creatinine was 3.3 (it had always been running about 1.3 before) and my doc was trying to play it cool but I could hear in his voice, he was worried. Plus, the doc never has you come in on a Sunday unless he is worried, you know? So…the test is repeated, this time it’s 3.0 Oh, and the BUN is over 40, but he never told me the exact amount. He claimed the GFR was 18.4 but I don’t know if he calculated correctly. He’s not a nephrologist after all.

So then he tells me to go home and drink a lot of water, that most likely this is only because I am dehydrated. (I think he’s in denial - I think he is really really freaked out and scared over all this, and he’s in denial, la-la land - I mean come on, 3.3 and 3.0 and it’s just because I’m dehydrated? I don’t THINK so…)

So I go home, looking stuff up on the internet, what I’m looking up scares me. And my husband is in denial too. He says he refuses to worry about anything until the doctor tells him something is wrong, and since Dr. T. (the doc who called me) is playing this off as, “oh, it’s really no big deal and you’re fine, but I think I’m going to send you to a nephrologist just for the hell of it…” So of course my husband is thinking this is reversible, I will be fine in a day or two, no problems. I know better. Well, I mean, there is a small chance it’s acute, but I don’t believe it is. I’m certainly not getting my hopes up.

Right now I’m pissed at my doc and my husband because they both seem to be in denial. At first I was thinking they were just trying to blow sunshine up my tailpipe, but I really do think, on second look, that they are in denial and neither one of them can handle this.

I keep telling my husband, trying to show him stuff - “you DO know that if this is chronic stage 4, that I’ll need dialysis soon - probably within a year, right?” And he just kind of pouts and says he’ll believe it when the doctor tells him that and not before.

This is hard enough without my doctor and my husband both deciding to lose their grip on reality.

I hope my Nephrologist tomorrow has a grip on reality, and I hope he makes it clear beyond any doubt how serious this is. Hubby is coming with me, and I want hubby to GET it. If he keeps acting like this, I swear I will go to dialysis and he’ll say, “oh, yeah, there’s that hobby club you go to three times a week…”

My doctor is repeating the kidney tests so many times I’m looking like a pincushion. I mean, he went from once in 3 months to once every day? Like I said, he’s freaking out.

I haven’t had many signs yet of kidney disease. I have been getting these weird little bruises all over, that is the only sign I can think of. And I’ve felt a bit more tired than usual lately. And if I don’t take the diuretic I’ve been on for a year for high blood pressure, I swell up like a balloon (incredible water retention thing) and my blood pressure shoots up by 30 points or so within 24 hours. (Oh, that’s another thing - my doc said, “go off the Hydrochlorothiazide, that’s why the reading is 3.3, you are just dehydrated.” Well, doc, I was on the HCTZ 3 months ago when I was tested then, and I tested fine at 1.3…sigh. I wish the doctor would get a grip on reality. I feel like I"m the only person in the room who SEES this and looks at it clearly. Everyone else is bonkers right now. Did you guys go through that when you were first diagnosed? Did people ever come around or were they still in denial?

I wrote some long e-mails to a nurse in-law of mine - a sister-in-law - and I wrote three or four, starting on Sunday when I was called in, told her about the creatinine levels and Stage 4 and cyclosporine-A being bad for the kidneys and all of that. Then another e-mail the next day when the test was repeated with the same results (more or less) the next day. Then another e-mail today. I finally wrote, after completing the last e-mail, “I can see I’m boring you with this, so I’ll shut up and go away now.” I mean, she always writes back, why would she all of a sudden ignore this? All I can think of is she thinks I am lying. That’s all that makes sense to me. And that makes me mad because obviously I am not lying.

Today she wrote, “I will have to go back and reread your e-mails to grasp the situation you are in. I guess I am in denial.” Well, I don’t know how it could be any clearer. My kidneys are mostly dead and I’m going to be on dialysis soon. Why is that so hard to comprehend? I think she just thinks I am making this all up, lying. Partly because Dave (hubby) has not told his parents or his brother (this nurse is married to hubby’s brother) yet or anyone because he’s still convinced that nothing is wrong. So the nurse sis-in-law is thinking, nothing is wrong because Dave hasn’t called us - so that means L. is lying about her kidneys…

Grrr!!!

So tomorrow I go and find out how long before dialysis. And with any luck, a ray of reality will smash its way into my husband’s head. Really I’m just irritated as all get out with him right now. I need him by my side right now, not in fairy tale land where the nephron fairy comes and gives me new kidneys!

Thanks for letting me rant. So I’m learning about hemodialysis. I have really crappy veins. They always blow. Takes them 2, 3, 4 blown veins before they find one that holds for an IV. They can’t tolerate even a drip IV, I have to use a gravity type of IV. So how on earth are my veins going to tolerate hemodialysis? Even if they do put in a shunt thingee? And if they put in a shunt thingee, does that mean I won’t feel the needle in the vein quite as much? I hate it when I donate blood, and they run the needle through my vein (almost every time they do this, because my vein collapses, then they pull it out, ram it in, pull it out, wiggle, ram it through, just about have marital relations with my vein for goodness sake,) and I hate hate hate the way that feels. I feel like I could handle all of this except that part. I do not want to feel that huge needle going through the other side of my vein. And I don’t want them constantly blowing my veins and having to jam that huge needle in my jugular or whatever. Or have them shrug after blowing every vein and say, “well, that didn’t work out well, I guess you have to die now, bye bye.”

This really sucks, doesn’t it? I’m not looking forward to dialysis and the sickness and the vomiting and the cramps and passing out and the dietary restrictions and the bones dissolving into dust. I do already have anemia so I have that down pat now. Most of all I’m not looking forward to tons of blown veins and the stupid huge needles.

Thanks for letting me vent.

I’ll probably be back whining again after my appointment with the Nephrologist tomorrow.

L.[/QUOTE] Wow glad to see you have a handel on things… you seem to be a take charge kinda gal and that’s half the battle… speaking of battles I think that if I was your doc "I’d be heading for the hill’s " on a real fast horse !
Seriously I really hope things go good for you ! Jessie

Hopefully you will have a better handle on things after you see the nephrologist. There are many different ways to do dialysis if you need it. You can do PD instead of hemo. If you need dialysis things usually take a little while to get better and for you to get used to it. Hubby has been on dialysis for 9 years now and it hasn’t been too bad. Had a rough time with PD but incenter hemo and the nocturnal has been fine Good luck. Feel free to vent any time.

L, you can calculate your GFR yourself at http://nephron.com/cgi-bin/MDRD_GFR.cgi. I’d do it for you, but don’t know your age or race. If your GFR is truly 18, and doesn’t rebound, you’re actually pretty close to needing kidney replacement therapy.

So of course my husband is thinking this is reversible, I will be fine in a day or two, no problems. I know better. Well, I mean, there is a small chance it’s acute, but I don’t believe it is. I’m certainly not getting my hopes up.

You definitely sound like a realist! It would be technically acute, but since you have to keep taking the cyclosporine (there’s no alternative?) it would become chronic in any event.

Right now I’m pissed at my doc and my husband because they both seem to be in denial.

It’s very normal to be pissed–and very normal for you or folks around you to be in denial. You might find our Kidney School site helpful–at http://www.kidneyschool.org. It’s free, and there are 16 modules on a variety of topics. Since you seem quite well versed in the basics, you might want to check out the Coping module. You also might want to print off modules for your husband and other loved ones.

I haven’t had many signs yet of kidney disease. I have been getting these weird little bruises all over, that is the only sign I can think of. And I’ve felt a bit more tired than usual lately.

Symptoms of kidney failure tend to come on gradually, so you can sometimes adapt to them and they don’t really get your attention. Itching all over is common. Swelling in the hands, feet, and face. Trouble breathing due to excess fluid (but you’re on diuretics). Protein aversion–meat, poultry, fish becomes something you can’t face. A metallic taste in the mouth. Ammonia breath. Fatigue is a symptom of anemia, which you already have.

So I’m learning about hemodialysis. I have really crappy veins. They always blow…I do not want to feel that huge needle going through the other side of my vein. And I don’t want them constantly blowing my veins and having to jam that huge needle in my jugular or whatever. Or have them shrug after blowing every vein and say, “well, that didn’t work out well, I guess you have to die now, bye bye.”

I didn’t hear you saying that you’re learning about peritoneal dialysis, which is an excellent first treatment–and doesn’t use needles. You can read about it here: http://www.homedialysis.org/v1/rotating/0206topicofthemonth.shtml. And you can read about all 5 types of home dialysis here: http://www.homedialysis.org/v1/types/. If/when you get that far, you can learn to put in your own needles, which vastly cuts down on the numbers of missed attempts. There is also something called the Buttonhole technique where you create a “pierced earring”-like channel into a fistula which is virtualy painless and guides the needle right into place. Fistulas are not veins anyway–they are veins that have been turned into arteries, which are much larger and stronger than veins. So your poor veins may not be as much of an issue as you fear.

This really sucks, doesn’t it? I’m not looking forward to dialysis and the sickness and the vomiting and the cramps and passing out and the dietary restrictions and the bones dissolving into dust.

Whoah! Does it suck that your kidneys seem to be failing? Yes, absolutely it does. But you found your way to this site, and if there’s one thing we hope you take away from here, it’s that there are better ways to do dialysis than in a center three times a week. And these better ways, at home don’t cause sickness and vomiting and dietary restrictions. You can feel good without the ups and downs of three times a week treatment–and even have a pretty normal diet with most forms of home dialysis. Depending on your other health conditions, you may also be able to get a transplant.

Search around this site. Read the stories, read about the types of home treatment, read the message boards. You’ve done so well this far, hunting down information that I know you can find your way to a treatment that will let you keep your lifestyle as intact as possible. :slight_smile:

And feel free to come back and vent some more tomorrow after your nephrologist appointment. As long as your post has something to do with home dialysis, this is a great place for you. If your kidneys fail and you decide to do in-center hemo, we have and can recommend other sites for support and information about that.

L.

My wife was overdosed with cyclosporin when she 60 which started her kidneys down hill – but she didn’t need to start dialysis for 12 years! Your experience may be different, but dialysis is probably not going to be required for a while, if at all.

If your veins won’t support a fistula or graft for access, should you need one, a catheter is an option that has worked very well for my wife. While catheters have a bad reputation one of the benefits of home dialysis is much reduced infection risk because the same person is caring for the catheter every day in the same, controlled environment – your home.

I think most everyone here would agree that the key decision that you and your husband must make is to decide that you are going to take responsibility for your own care if you ever do need dialysis rather than just putting yourself at the mercy of the medical establishment. Find out as much as you can about kidney disease and hemodialysis and then plan from the start to do it at home. My strong preference based on five years of experience is for nocturnal dialysis which avoids taking up your days or evenings, lets you eat what you want without phosphate binders, controls your blood pressure without medications and results in your feeling essentially normal. With the new machines you can be trained in a few weeks and can travel.

I’m sure you have other health problems or you wouldn’t have been taking cyclosporin which may limit you. But if you make up your mind to take charge and manage your kidney disease, barring other health issues, I think the odds are very good that you and your husband can look forward to long and rewarding lives.

Best of luck. Our prayers are with you.

Mel

Thank you all so much for your kind replies and all the help! I appreciate them so much. I was just kind of flipping out there, I wasn’t handling this very well. It’s just really scary, at first at least. I’ll bet you guys were scared too at first!

Well, I got pretty good news from the Nephrologist. He thinks this kidney damage is probably either fully or partially reversible. He said it would take a long time - months and months - but that with a lowered CyA dosage and careful monitoring (weekly at first, then bi-weekly) - I have a good likelihood of regaining some kidney function.

Now, I take that with a grain of salt. I have read case studies of people on CyA who went into ESRD on it (just like I went into Stage 4 on it) and most of them actually never got better. A couple improved part-way. I actually have yet to find one case study of someone who was in the position I was in, who recovered fully. So it’s not that I don’t believe the doctor exactly, it’s just…I’m kind of trying not to be unprepared.

I wonder if the Army would pay for the home hemodialysis? It would be nice maybe to have it done at night, then I wouldn’t get as sick, then I wouldn’t be tied down for so many hours during the week…not sure if I could learn to sleep with it doing that, though…could I? I mean, I guess some of you guys do, I mean everyone who has this done at night…

Oh, man, the other problem is the movers. We move every three years, the movers break a bunch of stuff all the time…oh I can’t imagine what they would do to a home system (shudder.) And if we have to set up a room especially for that, with the extra electricity and water and all of that…the move every three years…well, it can be done, but it will be kind of hard.

I’ll bet the Army would never pay for all of that. And I’m guessing I wouldn’t be able to buy a machine like that outright… :frowning:

Thank you all for the links, they were extremely helpful - I did the module on handling my emotions.

I am hopeful that maybe the doctor is right and I will be okay (for awhile at least) but I am also keeping in mind the case studies that I read. I’m trying to be prepared for the worst and hoping for the best.

I did talk to my Aunt who is a nurse, and she reassured me that if I do have to have in-center hemodialysis, that they really do make it so they aren’t blowing veins left and right. Because that’s one concern I had, my veins blow all the time with IV’s. I wonder if the needle going in feels like it does when you donate blood, though? I don’t mind it really all that much when it goes in, but my veins collapse and then they move it around, all of that, I know I wrote about this before, but that is the part I think I would hate the most. Silly, I know.

My Aunt said dialysis was so awful, that I couldn’t possibly even imagine how awful it is. :frowning: That didn’t make me too happy to hear. :frowning: Even though you guys have a better system with it being at home, I still don’t know how you guys do it, how you keep from just giving up. I think you must be such strong people.

Blessings and many thanks,
L.
P.S. sorry for the late reply, but my doc took me off the HCTZ and made me take beta-blockers instead and I had a horrible reaction to them. Kept passing out, couldn’t get up from the chair, felt like I was having an asthma attack, felt really irritable, got sick to my stomach…I am NOT taking those darn beta-blockers again! I still don’t understand why he wanted me off the HCTZ. He said that the other doc (my urogyn) had said “maybe she’s dehydrated” so just from that, he decided I had “hydration issues” as he put it. Even though, having been a soldier, I automatically look at the color of my urine all the time and it’s never dark (well, sometimes a bit dark first thing in the morning, but then I drink juice and water and it’s fine again.)

This really sucks, doesn’t it? I’m not looking forward to dialysis and the sickness and the vomiting and the cramps and passing out and the dietary restrictions and the bones dissolving into dust.

It does suck no doubt about it. But all these things don’t have to happen. In fact, once you start to dialyze, whichever form you decide to use, you should start to feel much better. With adequate or better dialysis you shouldn’t vomit, cramp, pass out and your bones won’t dissolve to dust for years, many years if that.

I can only tell you that I feel pretty good on short term daily as I raise my two year old and seven year old and maintain a healthy non dependent relationship with my wife. It took me two failed transplants, two nephrectomies, two years of peritoneal dialysis, fresenius daily dialysis for a year, fresinius thrice weekly, parathyroidectomy, multiple fistula surgergies, months and months of pharesing, and finally the last eight months on NxStage to get to this place.

Resilence is the key. Be resilent and it already looks like you are a good advocate for your health. Make sure you have a surrogate when you can’t advocate for yourself.

It will get much worse and feel like it will be worse forever but then it will start to get better.

I’d rather be on dialysis than dead any day! Good luck, Erich

I’m not surprised to hear that your kidney problem is likely acute and at least somehwat reversible. If you can keep at least 15% of your kidney function, you won’t need kidney replacement therapy. You can learn more about how to protect your kidney function at: http://www.lifeoptions.org/kidneyinfo/pdfs/ckd_info.pdf.

[QUOTE=Unregistered;12157]
I wonder if the Army would pay for the home hemodialysis? It would be nice maybe to have it done at night, then I wouldn’t get as sick, then I wouldn’t be tied down for so many hours during the week…not sure if I could learn to sleep with it doing that, though…could I? I mean, I guess some of you guys do, I mean everyone who has this done at night…

Oh, man, the other problem is the movers. We move every three years, the movers break a bunch of stuff all the time…oh I can’t imagine what they would do to a home system (shudder.) And if we have to set up a room especially for that, with the extra electricity and water and all of that…the move every three years…well, it can be done, but it will be kind of hard.[/quote]
Maybe when Beth pops in she can see what the Army does about home dialysis, but it would seem to me that if you do get to the point where you needed dialysis, you could make an excellent case for using the NxStage System One machine. It’s small (17"x17"x17") and sits on top of its own PureFlow water treatment system that hooks into standard plumbing and looks a bit like a coffee table. There is a case for the machine, and it’s made to be transportable. Instead of moving it, you could ship it back and have one sent to your new location.

My Aunt said dialysis was so awful, that I couldn’t possibly even imagine how awful it is. :frowning:

Does she think she’s helping you in some way by giving you this misinformation? I’ve been working in this field for 16 years, and for the most part, folks say that other than the needles (which you can get topical anesthetics for), dialysis itself doesn’t hurt. Most people find that they get used to it and it’s something they may not particularly like, but it certainly isn’t unimaginably awful. The more control you take over your care–dialysis included–the more you can be sure that your privacy is maximized and your need for a special diet, fluid limits, schedule changes, and symptoms are minimized. That’s what home dialysis is all about.

Are you the dependent of someone who is active duty military or are you active duty military yourself? Do you have TRICARE and/or other coverage?

I wish I knew all that I need to know about TRICARE. How much you would depends on where you’re treated, the specific Tricare plan that you have, whether your were treated at a military treatment facility, whether you have Medicare too (most people can get Medicare at any age when their kidneys failure and Medicare pays first before Tricare in most cases, and
whether you need specialty treatment from a contracting provider.
http://www.tricare.mil

I am curious about the reason you are taking cyclosporin? Do you have some kind of inflamatory process? You do not have to answer those questions - I am just wondering if there might be some correlation between the kidney disease and what other systemic issues you are having.
I would like to say to you - “'calm down,” take a deep breath, and know that you are going to be OK. All of this feels overwhelming to you right now - but getting really upset is not going to help you. Trust your instincts - your husband and your doctor will catch up. Keep going to your nephrologist.
Keep asking questions and know that there are many dialysis alternatives available. Short daily, nocturnal, PD, all of which you can do at home. Sounds like you have a tiger in your tank and that is good because it will help you accomplish your desires. Don’t let fear control you. The more you know the better your life will be. Stop the panic and don’t listen to anyone who tells you how awful dialysis is - it is a way of life for many and they are happy, healthy and they are running their own show. R-E-L-A-X…

I think I would strongly question whether cyclosporin is the only drug that can be taken for whatever you are taking it for. There are many other immunosuppression drugs that are less toxic.