Fun Fun Fun, Severe Kidney Disease

[ICLori]

Hi, guys. Today's been a crazy day. Did my labs last week, got a call from my Urogyn today. Creatinine 3.3 (anything higher than 1.5 is kidney disease), BUN 40 (not good.)

Went into the hospital in the Labor & Delivery section, where he was working, and he got my blood drawn, and checked again. This time, creatinine 3.0 (a tiny bit better) but said my Glomerular Filtration Rate (GFR) was 18.4, not good. Normal is 90 and above, and the stage where you need transplant or dialysis, is 15 and below. My kidneys are in what is considered severe kidney disease at this point.

I am hoping it will reverse itself with a lowered dose (that is what we are doing, lower the dose to see) because otherwise, I will have to go off CyA entirely (there goes my remission, bummer) and then I will be stuck with kidney disease on top of IC (my doc will be testing me again Tuesday, if I'm not better, I have to go to a Nephrologist.)

Fun fun fun. On the plus side, I really enjoyed church this morning. That was a good thing.

Blessings,
Lori

[dancemomof2]

WOW Lori so sorry to hear this.hope this reverses and things change quickly for you. I know how well your IC has been on this treatment. Sending well wishes

[ICNDonna]

:grouphug:

Donna

[IcyAngel23]

Sorry to hear about your problems. Hope you get better soon. Take care.

[ICLori]

Thank you so much, everyone, for the compassionate and caring replies. I really appreciate them, and you guys.

Lesa, that's the thing - I really don't have any symptoms that I know of, with the possible exception of having weird little bruised spots popping up all over my body for apparently no reason at all. I looked it up today and that's one of the signs of kidney disease I guess.

Your story gives me hope that maybe this fluctuation is temporary, and that maybe I will go back to my normal level - 1.3.

I am very sad about the idea of losing my remission (I think that's what is going to happen, anyway) and not looking forward to picking up the burden of "I'm in pain every day" again. But I know it's a burden many of you here deal with, so....I shouldn't be whining I think.

Thank you all again so very much.

Blessings,
Lori

[Sarojini]

:grouphug:

Let's hope this reverses itself soon!

[vm]

Well, I hate to read this, Lori. :( I was hoping when I saw the thread title that it was a very old post brought back up or just an article on kidney disease. Yuck! :( I really, really, REALLY hope a decreased dosage will do the trick for you. I would SO hate to see you lose the thing that's been helping you. I will be shooting up prayers for you bigtime. :kissing:

[Dianne]

I am so very sorry. Keep us posted.

[KarenIC]

Hi Lori,

I'm so sorry to hear about the kidney disease. I was worried that something was wrong when I didn't see you post on the boards for a week. I'm praying that this in only a temporary setback and that your kidneys will be back to normal very soon. Please hang in there. You are so special to all of us here on the boards.

Take care,
Karen

[Briza]

Lori
I am so sorry this is happening, you've made such huge strides with your IC and now this! NOT FAIR!!!
Wishing you good health. :pray:

[leelee88]

Hello Lori,
Sorry about the late response, but I just now saw your post..
It saddens me to know that you finally found something that has help you get your life back and now you might have to go off of it, thats just not fair..

Was it the Cyclosporine that caused your kidney problems?

[Kara29]

Lori,

My prayers and thoughts are with you as you face this difficult time. I hope that it gets better as you dose down the CyA. Maybe you won't need as much and still stay in remission. Did your doctor say anything about what happens next or is he just going to keep checking your levels while you try to go down on the CyA?

Love and Hugs!

Kara:angel:

[Annie2]

Oh, Lori, I just now saw this post and am SO VERY SORRY to learn of your setback! :grouphug: You are in my thoughts and prayers. Praying this is a temporary setback and all will quickly go back to normal. Long story, but our buyers, through no fault of their own, had to pull out of the deal. Therefore, we couldn't head south to go house hunting and are staying here getting our house ready to put on the market this spring. So I am around and am here for you. Please, please contact me if you need anything at all or I can help you in any way!

:grouphug: :grouphug: :grouphug:

[green_the_fish]

Hey, Lori. I really don't know what to say. It would really, really stink if you had to stop CyA... but you know that already. Briza is right; it's just not fair!

I will definetely keep you in my thoughts and hope that this is not a permanent thing.

:grouphug::grouphug::grouphug:

[Trishann]

Lori I just saw this post too. I am so sorry to hear that there is a problem. I hope this will reverse and you can stay on the CyA pills. My prayers are with you too. :pray:

Sending many hugs, Trishann

[Janie Miranda]

Lori,
I am so sorry to hear of this. I hope subsequent tests will look better and you'll still be able to take the drug that has been helping you so much. You will be in my thoughts and prayers.

[SandyRN]

:grouphug: Lori. I know that must have been a very scary thing to hear from the doctor!! I saw someone else ask this, but I want to ask too, was this from the Cyclosporine A?

I hope things level out for you soon and that you don't come out of your remission.

Let us know!

Hugs, Sandy

[maryla]

Oh Lori,

I'm so sorry to hear this, sending lots of :grouphug: hugs and prayers your way.......

God's Graces,

[Babs RN]

Lori,
So sorry I didn't see this. Had my own things going but feel terrible to see those labs. Hang in there and many prayers.

Hugs,
Barb

[ICLori]

Hi, everyone! Thank you all so much for this support! You guys are the greatest (as always!) Sorry to be such a downer.

Yup, it's from the Cyclosporine-A. It's an extremely nephrotoxic drug - very hard on the kidneys. That's why people have to be monitored pretty often, to try to catch the damage early. My doctor (I was his first patient ever on CyA) felt after the initial monitoring period, once every 3 months was sufficient. I have since learned that transplant docs and other docs who use this drug, never go longer than two weeks between tests, because renal damage can occur at any time, even if a person has been fine previously.

Sometimes the damage can be reversed, sometimes it's chronic and doesn't go away. Cyclosporine-A damages first by restricting blood flow within the kidneys (that's the temporary damage, the type that can be reversed when you stop CyA or lower the dose) and secondly by causing actual physical damage within the nephrons. My head is spinning with phrases like tubular atrophy, etc. All I know is that this might be reversible, might not be. We will see. And if it's still bad tomorrow morning (I'm hoping I will get the lab results back tomorrow or Wednesday at the latest) then I hope I will get more information from the Nephrologist.

Blessings, and thanks again everyone,
Lori

[miz_sunshine87]

Lori,

Only checking your creatinine every 3 months? Has your doctor got rocks in his head? I'm so glad that you found a doctor willing to prescribe the CyA to you, but if he doesn't know what he is doing he could be causing more harm than good. My brother is on a cytotoxic and gets his blood done every 2 weeks. I'm not sure what other things you need to be tested for, but creatinine is definately needed!

Even though the levels are high, the damage doesn't seem to have been going on for very long, so hopefully it will be all reversible. It's really unbelievable how our bodies are able to heal. My bro could barely breathe using an oxygen mask, and weeks later he was at 95% oxygen on his own!


Sometimes the fear of being sick is just as bad as living it. I hope you can find the inner strength to get through this without making yourself go crazy!

Best of luck,

[ICLori]

Hi, Miz - my doctor has no idea what he is doing with CyA. I'm his first patient ever on it. I knew - I really did - that I ought to have my labs checked more often. But part of me didn't care. I would really rather have my kidneys die, than go out of remission. I'm pretty sure dialysis would not be as bad as living with IC all the time. And you know the cool thing about kidney failure? Docs don't tell you it's all in your head, or that you have to live with it without treatment, or that you are being whiny. Docs take kidney disease amazingly seriously, in fact. Quite a refreshing change!

My labs looked a lot better today. BUN was 39, creatinine 2.7. Not so bad at all. Still kidney disease, but...I didn't get the GFR darn it. Does anyone know how to calculate GFR from those labs by any chance? Anyhow, he's still putting me in with a nephrologist for a consult to see how to preserve what is left of my kidney function, and I will get my blood checked in two days.

LOL - going from once every 3 months to once every day or two is a change for sure....

Well anyhow, drinking tons of water seems to have gotten me hydrated again, so my creatinine looks a bit better. Anything over 1.1 for a woman is renal insufficiency, though, and anything over 1.5 is frank kidney disease.

Thanks again everyone, will update you all on the continuing "days of our lives" style drama here.

Thank you so much Annie for your support, too - maybe we could still do a brunch at Young's sometime or something, that would be fun! I'm doing fine though, really. My main worry is, I don't want to come off the CyA. I'm okay with dialysis, I'm okay with dying even, I just don't want to go back to living in pain. I hope you will be able to find good buyers for your home soon, I know that must be awful having that hanging over your heads. :(

Blessings,
Lori

[ICLori]

P.S. This is the letter I wrote to my Urogyn, the one who put me on CyA. I have the feeling he is feeling kind of bad about this whole thing.

I hope he understands what I was trying to say.

####################################
Dear Dr. (name left blank),

Thank you for everything you’ve done for me in the past year or so. I want to reassure you I’m not concerned about my renal function. I knew going into this that I could end up with Cyclosporine-induced renal failure. I didn’t care (don’t care) because anything - death, dialysis, you name it - would be better than living in the hell on earth I was in with the pain of IC.

Everyone always says, “you’ll get used to the pain.” What do they know? IC pain is like Chinese water torture. Instead of getting better, it gets worse with each passing moment. I’ve been praying every night since I developed IC. At first, my prayers were for remission, or at least a good remedy for my pain. Then I saw myself as some bratty child, tugging on my parent’s hem, demanding a toy or candy over and over again in spite of the “no” answer. So I changed my prayer. The last several years, I’ve been praying fervently every night that God would allow me to die soon. I prayed for cancer, I prayed for anything I could get that would decrease my suffering from 30 or 40 or 50 years to something more reasonable, maybe only a year or two. And, no, I’m not depressed. This is not depression talking. This is me being very honest and trying to convey how bad IC is.

There are all sorts of signs, if you care to look, of how bad IC can be. Higher rates of suicide. 60% of IC patients unable to work. Divorce rates. One IC pain specialist used to drive his point home to his colleagues with a series of slides. The first slide showed a normal lab rat, before chemically-induced cystitis. Nice happy (we presume) lab rat. Then the lab rat is given cystitis equivalent to what an IC patient feels every minute of the day, every day of the year, for decades on end. The next slide showed the rat with a gaping wound in its abdomen - it had bitten its own belly open trying to stop the pain.

The pain specialist said he believed the rat. The rat was not hysterical, the rat did not have a mental imbalance, the rat was not malingering, nor hoping for secondary gains.

One of the most difficult aspects of having IC is that no one who has never had cystitis can understand what you are feeling. Most doctors are men. Most men have never had cystitis. Husbands have never had cystitis. I am surrounded by people who can’t GET it, who can’t HEAR me no matter how carefully I choose my words. You have been extraordinarily compassionate, patient and have given your all to me. I absolutely love you as my doctor. But there is still no way you can understand what the last 5 ½ years have been like for me - or how grateful I have been for this remission. And how horrified I am at the thought of picking the burden of pain back up. I would rather have dialysis, I would rather die. I can’t commit suicide, because then I would have to face God and explain why I… I still remember my General Orders from Basic Training (before I went through ROTC to become an Officer, I was enlisted.) “I will guard everything within the limits of my post, and quit my post only when properly relieved.” I can’t commit suicide because God is going to be up there, ready to ask me why I quit my post. But if I have to go back to being in pain every day of the week, every week of the year, I’m going to go back to praying for a relatively early death. Not because I’m crazy, not because I’m depressed - only because if I had a pet with this disease, I would put them down immediately. In my prayers, I feel entitled to ask God for the same compassion I would show the family dog or cat.

I just wanted to let you know, I don’t care about my kidneys. In fact, if I DO have to go back to having IC pain, I HOPE my kidneys go belly-up, because then I have a reasonable chance of dying within 5 years, and I will get to go home where there isn’t any more pain. So please don’t feel bad if my kidneys have taken a hit, if they don’t get better.

With warm regards,

[Kara29]

Lori,

I sent you a PM. All of my prayers are with you right now!

:pray: :pray: :pray:


Love and Hugs!

Kara:angel:

[SandyRN]

Lori,

Your letter to your doctor has me in tears. It's heartbreaking to read that you would rather lose your kidneys or die young to avoid the pain of IC. It really scares me that you would be willing to give up this life to avoid living with IC again. I really am at a loss for words and anything I said would not be good enough. I am sure I'm not alone in my thoughts, but I dont want you to give up and live with dialysis, or hope to die. There has to be some happy medium in there with the CyA in smaller doses, or something. Hopefully your doctor will come up with an answer. One thing, SHAME on him for not monitoring you more closely. No matter what you should have had your labs drawn more often, and there is no excuse for that. He should feel bad for what he allowed to happen to you.

I really, really hope things get better for you, and those labs are definately a step in the right direction. I really hope that they continue to get better and that you dont have to live on dialysis, or pray for death.

Praying for you.....Sandy

[Briza]

((((lori))))
My prayers are that your condition is reversible and that you can continue on whatever med helps keep you pain free and happy and functioning. I am very concerned for you, such a fighter! Keep that chin up and remember we're all here for you!
:grouphug:

[ICLori]

Thank you, Kara. :) You are always there for all of us, even though you are in unbearable pain yourself. You are truly an angel.

And Sandy, you are an angel too. I know you are hurting, worried about your husband, and have lots of other concerns on your mind right now, but you still find the heart to have sympathy for me and still take the time to write to me. I really appreciate both of you so much.

Please, Sandy, please don't judge the doctor. I knew when he said, labs in three months, that I could very well end up with renal failure. I knew he didn't know what he was doing, didn't know nearly as much about CyA as I did. I knew I should have stopped him, I should have said, "no, doctor, every two weeks at most."

You know why I didn't? Why I was thrilled he let me get away with three months? Here was my reasoning at the time:

1. I might not have any kidney damage at all. If so, then it won't matter if I get monitored every two weeks or every three months, everything will be fine.

2. If I do have kidney damage, the worst part will be having to go off the CyA. I just got remission after 5 1/2 years, I do not want to give the remission up. There is nothing left to try except bladder removal. You would not BELIEVE the long list of stuff I have tried. Sandy, I can't even take narcotics, because they irritate my bladder so badly on the way out, I end up in worse pain on them than off them. They give me a vacation here and there (on the very rare occasions when a doctor believes I actually feel pain) but for the most part, I am left with IC pain with nothing to help it. I just have to live with it. So I have been living with it for 5 1/2 years.

If I have to go off the CyA and live in pain the rest of my life, just like I have been doing, then I hope my life will end soon. I would rather suffer 3 or 4 years than 30 or 40. That's not crazy, is it?

3. I thought - if I have to go off CyA, then let my kidneys be damaged enough that my time of suffering will be cut short.

I actually feel very guilty now about the doctor. I did a really sh*tty thing to him by tricking him into allowing me to go three months without labs. He probably feels this is his fault. It's not. He depended on me to tell him how to handle this, and I deliberately misled him, made a sin of omission by not telling him, for my own selfish reasons.

I'm now taking 200mg per day instead of 300mg, we will see what happens with that. Also pushing the water, of course. Went off the hydrochlorothiazide. So I'm puffy as all get-out, worried I won't be able to get my rings off, and my blood pressure is now 160/104. Not so good. Typical when the kidneys aren't filtering fluids out so well anymore. And most of the high blood pressure meds are contraindicated with CyA - pretty much everything but HCTZ - so I'm kind of ....hmmmm..what's the word I'm looking for here...scr#wed?

I know I must come across as absolutely insane to everyone here. Depressed, etc. I'm really not. In fact my therapist just dismissed me a few weeks ago, saying I had no depression and no irrational thinking that he could see.

And I'm sorry for speaking so frankly on the boards. Normally I try to sugar-coat things for the newbies, or so that people won't have anything else to feed their despair. But I needed to tell the truth for a minute. I think I am on my way to dying. I want to tell the truth about what IC has been like. For me, for everyone else here, I think.

Blessings, and may a cure for IC come soon,
Lori

[Bessie]

Lori,
I just got finished reading your post and my heart breaks for you and all you have been through. I am praying that your levels get back to normal and that your kidneys will be o.k. and that your IC pain will be better. I know how frustrated you must be and yet you show so much kindness towards others. You are a true and genuine angel......a child of God that has shown true grace towards others. I am lifting you up in prayer and I pray that your doctors can get you back on the right track. You have really touched my heart today.

[SandyRN]

Lori, I don't think you are depressed OR crazy. I really can understand some of what you are feeling because of what I've been through. I've never had to face my mortality or had to realize I may have to live my life on dialysis, etc. You are just being honest. It's been stated all over the board that most people don't get to the point that you are at. I'm just so very sorry that you ARE at this point. It really does break my heart. To hear you being so blunt and emotionless about dying...I don't even know what to say. Is that really what it comes to when you've just had enough?! I wish that there was something else that could be done, and at the very least, maybe you could continue with the CyA AND have dialysis done if your kidneys continue to fail. I don't know.

I understand what it's like to live your life in pain. It's all consuming, 24/7 and it's hard to think about anything else. I know because even with the pain meds I still have pain every day, but I still feel like I've got something to give to this world, and especially to my children.

Geez, I just hate to hear that things have come to this for you. It really does make me sad, and for all my ramblings to you I just want to tell you not to give up. Please don't let this disease win. You've fought all these years and I know you're tired...but you can't let it win. :(

[Kara29]

Lori,

All I can say publically is that the same feelings cross my mind on a daily basis. Our situations are quite different but our feelings match up. I know it's sad but it is the Truth. I would elaborate but I fear that what I say will be chastised so I will be PMing you quite a bit to offer you my Love and Support as you go through this.

We are true fighters in this life Lori! Someday we will be rewarded for our suffering.

I just wanted to let you know that what you are feeling is normal under your circumstances. You are far from crazy. I think any logical Therapist and or Psychiatrist would see that you are suffering from the effects of living with an illness that causes severe pain for you with no relief from conventional therapies. With the one exception of CyA. And its hard to take a drug away from yourself when you are enjoying a pain free way of life again.

You are not alone with your feelings!

We could use a miracle for you right now Lori!

I am going to keep fighting for you everyday just like I am fighting for my self.

Kara:angel:

[icnmgrjill]

Lori,

Your letter was breathtakingly poignant and devastatingly accurate about what some patients with pain struggle with. My best prayers and thoughts are with you and thank you for having the guts to share this all with us so that others who are considering CyA know the risks. We're all sending you prayers and wishes that the damage is temporary!

Jill

[siriuspsyclist]

so with you Lori!
I feel sometimes like I might just let the car drift into that abuttment to end it all - but only when I'm feelin' real bad. Tomorrow might be better.
love and warm fuzzies your way!'

[Trishann]

Lori, is it ok to feel sad, and yet angry. I am sad because I know you felt like this was your last chance and now this is happenig. I am angry, why I don't know, maybe I don't want to think there is a time that you just give up. I knew from the start you are such a unique person and a loving person, and maybe I am selfish but I don't want you to give up.

My uncle had cancer, and I seen death at the door and I did get to the point that I prayed different. I prayed Lord, if you are going to take him, take him soon so he don't have to suffer, but if you decide to let him live, let him live in dignity. I spent over a year at the hospital with him. At times I came home in tears because I seen death at his door. But a miracle happen the following week, he somehow got stronger and came home. And he is happy to be alive. When death was at the door, live came slipping in. I want this so much for you, Lori. I am not giving up on you either. Maybe we are juist being selfish I don't know but we need you.

Sending all the hugs I can give you, Trishann

[ICLori]

Thank you all so much. Your words have touched me very deeply.

I just had to throw mysellf a little pity party, that's all. You know, one of those meltdowns. I'm better now.

We cope as best we can, then we have a little meltdown. Then we pick ourselves back up again and try to cope again. I always find myself nodding in understanding/agreement when someone comes on and says, they had a little meltdown. I think so many of us can identify with those words. This just isn't such an easy path, at all.

And the dialysis thing kind of scares me. I've never been very fond of needles. But I was thinking....I used to be scared of shots, when I was a kid, before I went into the Army. Then I had so many shots in the Army, I got over my fear of shots - they were no big deal at all. Maybe the same will be true of the big needles they use for dialysis. Maybe after the first month or two, I won't even think twice about them. I'll just go to the center and lose myself in a good book (I love to read, it will give me a good excuse to read!).

I don't think this is going to be reversible. I've been reading on-line, other cases of CyA induced renal failure. In something like 2/3 of the cases, there is no recovery. In fact in some cases, they went on to have end stage disease (dialysis needed) even though they had already stopped the CyA. Somehow it just kept getting worse anyway.

But you know, I knew that going into this. I made the choice anyway. I couldn't live with the pain, so I made the choice.

I always remember this line from a children's book I read, well, really a teenager's book I should say. It said, "look first if you would like, but you still have to leap..." I thought that was profound. That's how I've felt about pursuing treatments. I couldn't live with this, so I had to keep trying things. No matter what the dangers were.

I'm okay. I had a little cry today, felt sorry for myself. Mourned my kidneys. They did the best they could, for as long as they could.

But, here I am. I'll figure out what to do next, I'll go to the Nephrologist and talk more with my Urogyn. And I asked my husband to go with me tomorrow night to the fellowship dinner (I help prepare the meal for that) so he could talk to one of the Pastors because I think he needs to. It's hitting him pretty hard now. And my poor doctor, he just looks shell-shocked. He is absolutely afraid, or just not wanting this to be true. He likes me - we have developed a warm and caring doctor/patient relationship. I think this is tearing him apart. I have to figure out how to reassure him.

Tomorrow I'm going to put on a happy face and just move forward. Got dental appointments in the morning, probably a root canal, then get the caps put on. Then the fellowship dinner, I start preparing stuff around 3:30 or 4:00. So I will be busy tomorrow, and busy the next day because that is my volunteer day. That is best I think. Not too much time to feel sorry for myself.

Thank you all again so much, thank you for being so patient with me when I was pouring out my feelings on the boards. Usually I try not to be so negative.

Blessings,
Lori

[miz_sunshine87]

Lori I have to say, this is the first time I have cried over someone other than myself in a long time. Ever since I have joined the boards, I always check to see what you have written. I've learned so much from reading your posts, and you've given me so much hope. I know I don't know you at all, but I feel like I do. I even have a mental picture of you that is probably totally off lol (I'm thinking tall blonde?).

Please keep us posted with updates, good or bad. We care.

[ICLori]

Oh, Miz, I'm so sorry. I'll be okay. I just had to have a little pity party. This IC stuff is just really crummy. And sometimes we get left with nothing but bad choices in the end, and sometimes things go badly. What's a person to do?

Well, I did get some good news today, I hope this will be a more cheerful post....Dr. T. said that he talked with the Nephrologist, and the Nephrologist thinks we have a good chance of being able to keep me on CyA but at a lower dose. Right now, 100mg BID (once at morning, once at night.)

I'm meeting with the Nephrologist tomorrow at 0845, and having blood drawn at the lab an hour or so before then so I'll have the results. So I am hoping to learn more about all of this, and to figure out what is best to do next.

I find myself hoping that nephrologists aren't as big of jerks as most uros are. I love my current doc, and I've had many good docs, but some of the uros have been incredible jerks IMO.

I was thinking, with kidney failure, at least no doctor who is reasonably sane will say, "just learn to live with it, I don't want to help you, go away."

With this stuff, they really take it seriously, and I have to say it's incredibly refreshing. Nice change of pace!

Oh, and I've been worried a lot about the hemodialysis needles. I have lousy veins, they always collapse/blow and are sooo small. But my dentist today (he has a lot of family with the polycystis (?) kidney disease, and he knows a lot because of that) said they put in a shunt. They put it in your left forearm, on the inside, and they connect an artery to a vein. And the needle goes into that shunt, a silicone thingee, so you don't really feel it the same way you feel an IV needle.

Because here is what I was thinking before: I thought, they are going to come at me with those huge needles, and blow one vein after another, until finally none are left and they say, "sorry, you have to die now, oh well."

So I'm thinking now, maybe this will be somewhat more tolerable than I was originally fearing. Maybe I won't feel that huge needle as much.

Plus, maybe I will get used to it. I used to be scared of getting shots. Then I was in the Army, and I got tons of shots. Now I am not afraid at all, I barely even notice shots being given to me.

Oh, now I have to vent a little steam. I'm kind of frustrated/mad. I understand that this is harder on my hubby than it is on me, etc. and I understand how scared my doc is, but...sheesh...I hate being the only one with a grip on reality, LOL!

My doc kept saying, "just drink more water, I'm sure you are just dehydrated..." I'm not a doc and even I can see you don't register as Stage 4 kidney disease just from being a little dehydrated. Crazy! And then when the repeated tests confirm the dreaded results, he says, "well, you know, everything is okay, but I think I might still send you to a Nephrologist just for the heck of it. Just to make sure there won't be problems down the road." What the ####? Stage 4 kidney disease is "okay" and not a "problem?" Oh really?

And because Dr. T. is so blase and out of touch with reality, my hubby is too. I showed him what stage 4 meant, showed him stuff that said this is the stage where plans are made for dialysis/transplant because it won't be long at all before that happens. Dave shrugs it off, pouts, says "the doctor says everything is okay, I will believe the doctor."

I do have one ray of sunshine, Dave is going with me to the nephrologist tomorrow. I am hoping the nephro guy will stuff a little reality up my husband's tailpipe so that it competes a little with the sunshine already stuffed up there.

So hubby/doc are in denial, and I'm really mad about that. I need them to see reality, to stand with me!

At least Dr. T. DID put me in for a consult. With any luck, the neprho is more in touch with reality.

Oh, this was funny, too - Dr. T. says, "don't take your CyA dose in the morning before the blood test, we think it's just the CyA and not really any kidney damage." Well, if that were the case, I've been taking my CyA every morning before getting blood drawn, and my level has always been 1.3 before, not 2.7 - so you can see, that doesn't make any sense, right? But I will follow his instructions.

I'm glad I will be able to continue the CyA though. I really meant every word of what I typed, about preferring dialysis to this IC stuff. I have really reached my psychological limit with IC. Give me some other problem to "enjoy" for awhile instead.

Thanks for letting me vent again...I'm okay, I will be okay, not so scared now...just frustrated with those around me more than anything, which is maybe a little understandable.

Blessings,
Lori

[kadi]

Hi Lori,
Just a note that I'm praying for you & your test results. Also that this new doctor will be wise and helpful.

If you have trouble with blood draws, it does help to drink water beforehand. The last time I went in, they couldn't get a vein in my arm, wound up taking it out of the back of my hand. The vampire (very nice lady actually) told me that dehydration does make your veins "collapse" into the tissues & are hard to find. Just a tip. I did not know this- learn something every day!

Hang in there, know that we're all pulling for you!

[Bessie]

Hi Lori,
Just want to let you know that I will thinking of you tomorrow and will keep you in my prayers :pray:

Please let us know how your appointment goes tomorrow.
Take care.

[akrose]

Lori - I completely understand you. Especially the part about not living the next 30years with i.c. pain. When I was diagnosed with ovarian Ca in Sept this year, the docs took me real serious, and did surgery, emptied out my pelvis of all organs except the one I dislike the most - the bladder- then started with the big guns- chemotherapy, lost my hair, lost 11 lbs. They did everything to save my life, but I kept looking in my docs eyes telling her, that the ovarian cancer is the least of my problem, the real problem is this burning bladder/urethra and can anybody help me with this, and all she could tell me was that she only removes bladders that are full of cancer, if only the cancer I had was in the bladder instead of a useless ovary. So this medical society is only concerned about prolonging life, even if it is full of pain. sorry we are both going thru this, aileen

[Trishann]

:pray: Lori I really hope things will reverse and for you to get better. That would be great if you can stay on the meds at low dose without hurting you. I hope you don't think I am angry with you, I am just angry about something that was working for you turn around and hurt you.

I just really hope the best for you,
Sending hugs, Trishann

[blondie45]

Good luck today with your appointments. You seem to be like me and one day you feel like this is so totally overwhelming and the next day you pick yourself back up and start feeling better again. Again good luck!

[Rose Fish]

Hi Lori - I have been off the boards for a while and just started reading your posts today. You are such an inspiration to me and I totally relate to your feelings. You have validated everything that we all feel at one time or another with this disease. I am praying for you that you can remain on the cycl-A at a lower dose and that your remission will forever continue.

Please share any of your medical knowledge with your doctor though. Perhaps if tests were taken more frequently, these readings could have been adjusted with a lower dose of cyl-A. Anyways there is little we can do with the past but I know that you will work closely with your doctor in the future.

As far as your husband goes, I just think that they don't want us to suffer and hence they block the reality of your pain. Keep focusing on what he HAS done to help you and don't get all stressed out about the negative points. In the end this way of thinking will be advantageous for both you and him.

I am wishing you the best of luck and please be positive,

Take care, Doreen

[SandyRN]

Lori,

I hope you're having a better day and you had a good doctor's appt. I wanted to tell you, there are a bunch of different ports that doctors, usually radiologists, can put in so that you wouldn't have to be stuck all the time if it came to that. I had a PICC line put in during a long hospital stay when MY kidney's were failing from repeated UTI's/Stones/Nephritis, and the drug you into twilight sleep, and put the port in in radiology. I'm not certain what the standard port for dialysis is, but they wouldn't stick you every day...that much you can be sure of. Hopefully it won't come to that.

Let us know how you're doing today!

[Rama K.]

Hi Lori and all,
I have been following your story with great interest Lori, since I have been on CycloA since 9/05. Started with 175 mg creatnin shot up from .67 to .90 Dr got nervous and almost took me off it. After I insisted he let me continue with reduced dose of 150mg. Currently creatnin is .88 Lori, I wish you all the best and thanks for the special messages you sent me.

A little background on my condition : I was diagnosed with IC and Hunners 1999. Cysto/Hydro almost every 9 months with temporary relief.
Tried: Elmiron, Pyridine, the stinky bladder instills, Elavil, none helped. The last Cysto/Hydro in April 04 almost did me in. That is the first time I literally broke down since the day of being diagnosed with IC which was after the last Cysto I was needing to pee almost every 5 mins and was in great pain and when I was told to go the ER by the on call Uro, the untrained nurse was trying to insert a Catheter and hurt me more because she could not, and that was the straw that broke the camel's back so to speak. No more Cystos for me and I have been none the worse for not having had them!!
I have also started Elmiron again 10/06. Have not seen much improvement. I was wondering if that is causing the flareups since Dec.???
The Dr. has not much to offer at this point. He had suggested bladder removal in Dec. 05. I want to make sure there are no more options before I do that.
I have been doing marginally better during the day with frequency but nights are still bad. Up every half hour to 1 hour early part of night and less latter half of night.
I have been able to work almost full time in an elementary school (admin)
Taking Vicodin for pain about year and half. About 3 - 4 per day. Currently on a bad flare up since mid dec. Dr talked about Methodone, nervous about it after reading some reports of people going into cardiac arrests. Anyone out there know or used etc please help me. http://www.ic-network.com/forum/images/smilies/help.gif
Since I work with so many women as much as I would not wish even my worst enemy to go through this, I keep thinking am I all alone in the world with this sad condition.
I am glad to see this wonderful network of caring and helpful people as all of you to help each other out.
I am truly blessed in many ways, I am the ultimate optimist, I think of how lucky I am that my two girls are all grown up - 27 (will be 28 this weekend), and one who just turned 23, and a truly caring husband! By the way I just turned 52.

I feel in this world if we do not get a choice on what we suffer with at leasts knowing that we have caring people in our lives makes the pain somewhat
bearable.
Thank you all,
Rama

[ICLori]

Hi, everyone, thank you all so much for the prayers and well-wishes! Boy I need to answer a million posts in this thread, I hate just typing this one generic one and not answering each one, but I am so tired right now (didn't sleep well the last couple of nights) that I am going to do just this one post tonight, then tomorrow I will do more posts to talk to people who have posted on this thread.

Well, guys, good news!!! Yeah, I do have severe kidney disease (stage 4) but the doctor has worked with CyA cases like this before, and he feels that there is a very good chance it is reversible! He says in most cases like this the kidneys either fully or at least partly recover. So I am very hopeful now!

He's doing about a million things with me. He decided HCTZ isn't good for me right now, as a blood pressure med, so he's going to try a beta-blocker on me. (My blood pressure is extra-bad right now because of the kidneys being kind of on strike at this moment.)

He's going to send me to have an ultrasound to just make sure there are no obstructions (he doesn't think there are, just being safe.)

He wants me to take my blood pressure every day and submit a record at the end of the week.

He ordered a creatinine clearance test. The blood test today was to check my Cyclosporine-A levels in my blood. He's going to keep a close eye on that. He said he would be checking a lot of things, ordering a bunch of tests. So I'm guessing on Monday I'm going to have about fifty tubes of blood drawn, LOL! Oh, I won't know what the blood levels of CyA are for a week I guess because it has to be sent out to a special lab and it takes awhile.

Hmmm...oh, yeah he said I could continue for now to take CyA 100mg at morning, 100mg at night, 12 hours apart. He said that it wasn't right I was taking it three times a day - my doctor was inexperienced with CyA and didn't know how to do the best dosing schedule.

I'm getting monitored by blood test once a week, and then maybe at the end of the month if I am doing better, he might go to once every two weeks.

He said that if this does reverse itself (it most likely will) it won't be a quick thing. He was talking about monitoring me for months, so I have a feeling it's going to take at least months, if not even longer to really get well again. I forgot to ask him exactly how long it would take. But I will see him again face-to-face in a month. He will call me of course with test results, etc.

Hmmm...oh, he did an exam, too. Mostly normal physical exam type stuff, but he also felt my neck a lot, like the sides of my neck, almost like he was feeling for my veins? Or the jugular? I don't know why he'd do that, but I had the impression that is what he was doing. Strange. Well, I'm not a nephrologist, what would I know?

Boy I am so relieved to have hope that I'm giddy. And it was only after getting the good news that I realized how exhausted I am. I have to go sleep now. I promise I will write more individual replies tomorrow. Just wanted to let everyone know, I think I will be okay! Man was this a scary experience.

Blessings,
Lori

[Trishann]

Lori, that sounds like there is hope, thank God. I am so happy your doctor is going to take extra time to check you out and to keep an eye on you. That is good news. I hope you rest peacefully and I hope you will continue to get good news and get better.

Sending hugs, Trishann

[Bessie]

Praise God.......that sounds promising.

I am glad that you have such a good doctor. It sounds like he is really checking every thing out.

There is hope......I am so happy for you.

Get some rest......you deserve it!!

[KarenIC]

Hi Lori,

Thats wonderful news! Thank God that the kidney damage is reversible! I'm so happy for you. I was really worried. Go and get some rest and I'll keep in touch.

Take care,
Karen

[SharonA]

Lori...I am so sorry I have not posted to you before on this thread, but I wanted to stick my head in the sand and not face up to the reality that you are going through. There was no way that I wanted you to "go gently into that good night", so ignoring this thread was the only way I could do that. Then today, I decided that I needed to find out how you are doing and what your doctors are saying, so I clicked on your posts and read your story and finally shed the tears that were waiting to be released. I am hoping that this latest report is true and that your kidneys do have a chance.

Rest dear Lori, rest well. Be refreshed and renewed to fight another day...:pray:

[SandyRN]

Lori, I'm glad to see a hopeful post! Please let us know how you're doing! I hope things only get better and better for you!

Hugs, Sandy

[ICLori]

Boy, I wish I would have replied earlier, but my doctor gave me a beta-blocker and I was passed out (literally) for some time (maybe over an hour?) and when I came to, I still could not walk. I was wheezing, too, like an asthma attack. And then I felt so irritable, I wanted to kill someone, but of course I couldn't stand to kill anyone, so that didn't happen. Beta-blocker finally wore off, and I am NOT taking another one. Doc can take the Beta-blocker and HE can take it! The only reason he took me off the diuretic that was working great was, Dr. T. (the urogyn) said he thought maybe I might be dehdyrated and that was why my kidneys looked bad. So this doc says, "you have hydration issues so we are taking you off the HCTZ." Ummmm...I do? That's funny, my urine is never dark or anything....

Well, anyway, I am calling on Monday to tell them I refuse to take any more of those evil pills, and that I'm planning on restarting HCTZ.

Trishann, I'm not mad at all, I understand the anger, actually I did need someone to kind of kick me in the butt. Sometimes we all just want to give up, it's very hard being chronically sick. But we always pick ourselves back up again and move forward!

Aileen, I'm so sorry the doctors would not help you or understand you. That's one of the most horrible things about this disease, is the lack of understanding/compassion among doctors/spouses/just about everyone.

Blondie45, thank you so much for your well-wishes, and Doreen, thank you too!

SandyRN, thanks so much for everything! :) That really reassured me, to know that they really manage the veins with dialysis, that they have a solution to things. My veins are soooo bad....

KarenIC, it's so good to hear from you again, and thank you for wishing me well! :)

OctoberFarm, I find your faith inspiring and comforting! :)

Thank you everyone for being so happy about my good news, it's great to celebrate with friends! I know I'm not really out of the woods totally yet - there have been a few cases of people sliding into ESRD even with careful management, and a few cases of people not getting better - but the doctor is very hopeful it is reversible, and seems confident, so I will be confident too!

I sure don't like that beta-blocker any though. I'm not taking another one! I refuse! There are other blood pressure meds, really!

Sharon, I totally understand, my post was really depressing because I felt really down when I wrote it. Sometimes we just have really bad days, low points. Usually I try not to be so depressing but it was just a really bad time for me, unusually bad I mean. I feel much more hopeful now, and especially so since I have high hopes I will be able to stay on the CyA! It sounds crazy, but really I am more worried about CyA being taken away from me, losing my remission, than I am of my kidneys dying!

Thank you all again so much!

Blessings,
Lori

[Annie2]

What wonderful, optomistic news! :woohoo: No wonder you feel giddy! I think most of us here feel that way, too, just hearing this news from you. I truly understand you are totally ok with whatever happens. However, if the damage can be reversed, you can be maintained and carefully monitored on a lower CyA dosage and have a good chance of staying in remission....well, I just can't seem to come up with adequate words to express how happy I am for you! My prayers for you will continue asking for healthy progress every day and no hint of return of the agony you so long suffered.

We definitely have to plan that brunch at Young's for all ICNers in our area! I communicated with Maryla about it and she's up for it, too. Maybe we can plan it for a date in the early spring and it will be a big celebration of your recovery. Bet everyone within driving distance of Dayton would love to join us to celebrate that victory with you!!!

[ICNDonna]

It sounds like things are looking up for you. :)

Donna

[Bessie]

Lori,
I really did not look at your post as depressing, but as someone who was scared and even though you were scared you showed so much compassion for your doctor that took part in your care.

That tells me so much about your integrity and character. You are a true gentle soul. A lot of time when people get hit with terrible news the first thing they do is start to blame, or say if only if we would have done this or that, etc. I did not hear you say any of those things. That shows me that you are a truthful, honest, and nurturing sweet soul. Your family must be so proud of you and the way you handle things with such grace. I need to take lessons from you :)

You are on the right path and I know that God has plans for you!!!
We will all keep hoping, and mostly pray for you and your recovery :pray:
Hang in there!!

[SandyRN]

I'm wondering if you can split the pill in half and work up to the recommended dose....of course I wouldn't do it til you asked the doctor, but Tom has HBP and he does very well with them, and the sleepiness has worn off over time. It's a thought. They do usually work very well. I take Maxzide, it's got HCTZ in it, and I can't stand to be without it as I'm a bloated balloon!

Things seem to be looking up and I'm so glad!! You know we're all here thinking about you and praying for you!!

Hey, at least you got a GREAT nap today! :)

Hugs, Hugs, and more Hugs!!

Sandy

[SharonA]

Lori...Your post was not depressing. I just did not want to face not seeing you here. I am so glad that things have a good chance of looking up. :)

Annie...You're right. I would love to be at that lunch. Think I will look into how far you are from me. MapQuest...here I come.

[ICLori]

Thanks for the advice, Sandy! You always give great advice. But I think I have a problem with this doctor. I've been turning this over in my head for a couple of days, and something just does not sit right with me, with him.

I'll launch into a lengthy, boring diatribe here:

This Nephrologist (Dr. J.) was a young doctor, obviously of Indian descent. He was not raised in India (no accent) but I'd be willing to bet his parents were from India, and I'll bet they passed along certain cultural attitudes (extreme misogyny) to him.

I took my husband along with me because my husband wanted to hear what Dr. J. would say and wanted to ask some questions.

Well, this doctor decides he's going to switch me from a diuretic to a beta-blocker. (Diuretics are standard treatments for severe renal insufficiency - they work very well to help control blood pressure and work well to clear excess fluid from the tissues.) Why does the doctor do this? Because my (sometimes a@@hole) husband told Dr. T., who referred me to this Nephro, that I didn't "drink enough water."

So this doctor says I have "hydration issues" and that's why he's taking me off diuretics. I drink PLENTY of water. My urine is NEVER dark. The doctor didn't bother to ask ME if I had hydration issues - he just made an assumption based on what this other doc told him, based on what my husband told the other doc. My husband only said that because I like to drink tea in the mornings instead of water - big deal, I still get plenty of liquids. But my husband thinks I should only drink water, ever. (Yes, my husband is dictatorial at times.)

So Dr. J. prescribes me this beta-blocker med that almost kills me (I passed out, had what felt like one of my asthma attacks) just because of what my husband casually said to another doctor. Without bothering to do a blood test or urine test to SEE if I were dehydrated; without bothering to ask ME if I drank enough fluids. See how patronizing/condescending/insulting that is?

Not only that, but he spoke to my husband much of the time instead of me - I kept wanting to say "hey, I'm the patient here, I'm not a child, you can speak to ME." At one point, he mentioned that beta-blockers can worsen depression (I am on an antidepressant already for chronic mild depression.) He turned to my husband and said, "call me if you see any change in her mood on these pills.

***? I did not AUTHORIZE this doctor to communicate directly with my husband, behind my back! That's a violation of HPPA laws! How DARE he? And how dare he assume that I am some child who is not competent to monitor my own mood? After all, I am the one who brought myself to the doctor years ago and admitted I might need an antidepressant - not my husband. I am fully competent to assess my own mood and take appropriate action. I find it insulting beyond belief that this doctor would believe only my husband is capable of making my healthcare decisions, not me! I'm in my late 40's - I think I'm old enough to make my own healthcare decisions now.

I am really thinking of asking for another doctor. There is another Nephrologist in the same clinic, and I find myself not wanting to go in for any more blood tests etc. because I do not want this jerk of a doctor knowing ANYTHING more about my case.

Should I request another doctor, do you guys think?

Blessings,
Lori
P.S. I have already thrown the bottle of poison (beta-blockers) away. I will never take another beta-blocker, no matter how low the dose, unless someone ties me down and forces it down my throat. Even then, I will surely will try to use my teeth to prevent it from happening.

[ICLori]

P.S. This is the letter I wrote to Dr. J. I'm thinking of dropping it off Monday.

##################################
Dr. XXXXX,

Please hand my case over to another doctor. I find you a misogynistic, patronizing, condescending doctor who does not have my best interests at heart.

There was no need to tell my husband to keep an eye on my moods and to call you with information about my moods. I am a grown woman and quite intelligent, and I am fully capable of monitoring my own moods and seeking treatment for depression when required. Do you think it was my husband who brought me in to the doctor when I needed antidepressants? Absolutely not, I recognized the symptoms of depression in myself and presented to my doctor with the request for antidepressants. In fact, I usually walk into the doctor 1) knowing what my illness is and 2) knowing what the best treatment for my illness is.

Telling my husband to call you behind my back was inviting a violation of HPPA laws. Just for the record, I do NOT authorize you to speak with my husband regarding any aspect of my healthcare. I have made it clear to my husband he is not to seek any further contact with you or any other doctor regarding my healthcare.

I realize I made a mistake taking my husband to my appointment. I deeply regret that mistake. He had some questions he wanted to ask, and was quite concerned, so I brought him out of courtesy. I have brought him to other medical appointments with me, when he had questions, but this is the first time I have ever been treated like a child by any doctor. I was an Army Officer myself once - got out so we wouldn’t be stationed apart - I do not take well to being treated like a feeble-brained, hysterical child instead of an adult capable of handling her own healthcare decisions.

Your misogyny was also apparent in how you decided to prescribe me a beta-blocker instead of the diuretic which had been working well for me. You said I had “hydration issues” and that is why you were denying me a medicine that worked well for me, to have me start instead on a medicine that (surely you knew this would happen when you prescribed it) very nearly killed me. (I passed out, had an asthma attack after I awoke, and was so weak I could not sit up let alone stand up for over two hours. I understand these are common, expected side effects.)

I wondered, when you mentioned “hydration issues,” why on earth you would even think I had problems with hydration. You see, doctor, one of the things we learn as Army Officers (and especially those of us who went over to play in the sandbox) is how to check our own urine whenever we void for signs of dehydration, and adjust our intake of fluids accordingly. I have not had hydration issues at all since starting HCTZ.

Then it occurred to me, you decided I had “hydration issues” just because Dr. XXXXXX hypothesized that I “might be dehydrated, and that might be the reason for the high serum creatinine levels.” My husband had to offer his two cents worth by saying he thought I did not drink enough water. It’s true, I do not drink as much water as I ought to. Instead, I drink tea. But even tea hydrates, so I do NOT have “hydration issues.” Why didn’t you just ASK me if I thought I had adequate fluid intake? Don’t you think that would have been the usual thing to do? If it had been my husband in your care instead of me, wouldn’t you have asked HIM that question instead of just assuming? Did you not bother asking me because you assumed I was too idiotic to know my own hydration levels, or because you assumed I would lie? Neither assumption sits well with me.

I am furious with you for so cavalierly switching me from an effective medicine with no side effects, to a medicine you KNEW had such dangerous side effects, and all for the most absurd reason not backed by any hard evidence. What if I had been driving somewhere when I lost consciousness because of the beta-blocker you prescribed me? What if my asthma attack had been more severe? (You DO know beta-blockers are contraindicated in asthma patients, even those of us who have only very rare asthma attacks, don’t you?)

You could have killed me, doctor.

I will not submit myself to any further tests (creatinine clearance, etc.) until I am confident the results will go to a different doctor. One who has my best interests at heart; one who will not be so eager to violate HPPA laws. I do not want you involved any further with my case.

Sincerely,

[blondie45]

Good for you on telling that doctor how you feel. You are so right about violating the HIPPA laws when that doctor talked to your husband. Glad to hear you are more optimistic now. Also, you write EXCELLENT letters that really tell it like it is!

[ICNDonna]

That sounds something like one of my "vent" letters --- which I spend many hours writing in my head, but never put on paper and never deliver. My suggestion would be to telephone that office, let them know you are not comfortable with Dr. X and would like to make an appointment with one of the other doctors. That should take care of it nicely.

Donna

[ICLori]

Sigh. You are probably right, Donna, but...I can't just request a different doctor. This is a military facility, after all. I will have to explain (in writing) WHY I want a different doctor.

I can rephrase the letter to be somewhat less confrontational, however.

Here is a revised letter (okay, edited for better version, updated):

Dr. XXXXXXX,

I’m very upset with you right now for a couple of reasons:

1. I think you were not keeping my best interests in mind by prescribing this beta-blocker instead of the diuretic I was doing perfectly well on; and

2. I think you were planning on violating HIPPA laws when you told my husband to call you with information regarding my mood while on the beta-blocker.

I’ll address my second concern first. There was no need to tell my husband to keep an eye on my mood and to call you with information about it. I am a grown woman and quite intelligent, and I am fully capable of monitoring my own mood and seeking treatment for depression when required. Do you think it was my husband who brought me in to the doctor when I needed antidepressants? Absolutely not, I recognized the symptoms of depression in myself and presented to my doctor with the request for antidepressants. In fact, I usually walk into the doctor 1) knowing what my illness is and 2) knowing what the best treatment for my illness is.

Telling my husband to call you behind my back was not only incredibly insulting and patronizing, but was inviting a violation of HIPPA laws. I am now stating for the record that I do NOT authorize you to speak with my husband BEHIND MY BACK regarding any aspect of my healthcare. I have made it clear to my husband he is not to seek any further contact with you or any other doctor regarding my healthcare behind my back. Nor will I bring him with me to any further office visits, just so there will be no confusion on this. I am not a four-year-old child: you may speak directly to ME about my healthcare, including any mental health issues. Having mild chronic depression does not render a person incompetent to make their own healthcare decisions.

I realize I made a mistake taking my husband to my appointment. I deeply regret that mistake. He had some questions he wanted to ask, and was quite concerned, so I brought him out of courtesy. I have brought him to other medical appointments with me, when he had questions, and this is the first time I have ever been treated like a child by any doctor. I failed to anticipate a doctor acting in this manner. I was an Army Officer myself once - got out so we wouldn’t be stationed apart - I do not take well to being treated like a feeble-brained, hysterical child instead of an adult capable of handling her own healthcare decisions.

I also have a problem in how you decided to prescribe me a beta-blocker instead of the diuretic to manage my blood pressure. You said I had “hydration issues” and that is why you were denying me a medicine that worked well for me, to have me start instead on a medicine that (surely you knew this would happen when you prescribed it) very nearly killed me. (I passed out, had an asthma attack after I awoke, and was so weak I could not sit up let alone stand up for over two hours. I understand these are common, expected side effects.)

I wondered, when you mentioned “hydration issues,” why on earth you would even think I had problems with hydration. You see, doctor, one of the things we learn as Army Officers (and especially those of us who went over to play in the sandbox) is how to check our own urine whenever we void for signs of dehydration, and adjust our intake of fluids accordingly. I have not had hydration issues at all since starting HCTZ.

Then it occurred to me, you decided I had “hydration issues” just because Dr. XXXXX hypothesized that I “might be dehydrated, and that might be the reason for the high serum creatinine levels.” My husband had to offer his two cents worth by saying he thought I did not drink enough water. It’s true, I do not drink as much water as I ought to. Instead, I drink sodas and tea. But even sodas and tea hydrate, so I do NOT have “hydration issues.”

Why didn’t you just ASK me if I thought I had adequate fluid intake? Don’t you think that would have been the usual thing to do? If it had been my husband in your care instead of me, wouldn’t you have asked HIM that question instead of just assuming? Did you not bother asking me because you thought I was too idiotic to know my own hydration levels, or because you thought I would lie?

I am furious with you for so cavalierly switching me from an effective medicine with no side effects, to a medicine you KNEW had such dangerous side effects, and all for the most absurd reason not backed by any hard evidence. What if I had been driving somewhere when I lost consciousness because of the beta-blocker you prescribed me? What if my asthma attack had been more severe? (You DO know beta-blockers are contraindicated in asthma patients, even those of us who have only very rare asthma attacks, don’t you?)

I have thrown the bottle of poison (beta-blocker) out and will not take another one unless someone ties me down and forces one down my throat.

I have resumed the HCTZ which has been working perfectly well for me.

I would like to ask you to 1) not prescribe me any more medicines that are likely to kill me - at least not for a reason like “someone told me they thought you might possibly have hydration issues;” and 2) not violate HIPPA laws.



Sincerely,

[sweetangel2080]

hi IClori,

sorry I missed this post as not been online. Am glad that the kidney disease can be reversible and hope this is sorted out soon!
Did they think it is with cyclosporine? Am just asking as my mum takes this or I think it is the same thing - neoral is the brand name - and she takes it for a renal transplant as she had kidney failure

Hopefully it will be sorted out. Sometimes they can give steroids like prednisolone to stimulate the organs - I know my mum was on it first and now for lupus. Another friend had liver disease but luckily with steroids, the liver started getting better

Re: the letter. It does sound like a vent letter. Maybe compain that he shouldn't have contacted your husband or write that it but it may be better and you could get a better outcome if you wrote down simple facts and less emotions? I doubt he would feel guilty and it might cause him to think differently of you or write something in your notes?

Maybe write something like - I am concerned as the beta blocker I am trying is .... (symptoms here) and say you do drink enough water and state how much and that you would much prefer to go back to your old medication as the side effects are so bad that you cannot function etc?

And then mention that you would expect him to keep your matter confidential and not to contact your husband?

then see what happens and then if you still feel strongly, then change doctors? this would mean that hopefully you would get back on the right medication for you and the tests etc will all be done by the same doctor. but if you feel stongly that he is the wrong doctor for you, then by all means change.

[poetgirl]

I'm so sorry. I hope they can get your levels down soon so that you don't experience further damage.

Lots of prayers to you! :pray:

[ICLori]

Thank you guys! Sweetangel, they do feel my kidney failure is acute and due to Cyclosporine toxicity. I take Neoral, too. I was not monitored properly on it. Cyclosporine-A can cause renal failure in some individuals. I think it doesn't in the majority, but I guess I was just one of the lucky ones, LOL!

I think maybe I will just write a very short note requesting another doctor because it is not a good patient/doctor fit. I think that might work best. If the new doctor asks me why, I will explain why in greater detail.

Blessings,
Lori

[ICLori]

Revised for the third or fourth time letter, LOL, what do you guys think of this letter? Less emotional, I think:

Dr. XXXXXXXX,

I discontinued the beta-blocker after the first dose because it caused this reaction: I passed out (not in the sense of sleep, I lost consciousness); I had difficulty catching my breath (it felt like an asthma attack, which I get on rare occasions; I was unable to stand for a couple of hours because I was too weak; and I felt as if I were in some kind of stupor all-around for about 8-9 hours after taking the medicine. It’s obvious I would be unable to function on this medicine.

In fact I threw the bottle away, and resolved never to take another beta-blocker again.

I have some serious issues with having you as my doctor. I would like to request another doctor be assigned to my case. I feel we are not a good doctor/patient fit. I get along very well with all my other doctors, but this particular doctor/patient relationship is not going to work.

Sincerely,

[Briza]

Hi Lori
I've kept up with your 3 different versions throughout the day, the 3rd one definitely is shorter and to the point, but I think you should still put in some of your specific concerns regarding your treatment as to why you are requesting a different dr and keep it low-confrontational, maybe keep it focused on the treatment you were given, rather than his behavior... Unfortunately, I have to agree with Donna about the 1st version, I know you're trying, :) otherwise you wouldn't have revised twice already! As far as the 3rd letter (last ) letter, if you decide to stick with that, then to make it a tiny bit less confrontational would be to use "concerns" instead of "issues." Something like, "Unfortunately, I think we are not a good patient/doctor fit. Additionally, I have some concerns regarding my treatment while under your care, specifically...

and keep it as nonconfrontional as possible, esp if you are never granted another dr, and have to stay with this one!

I say this since you said earlier posted that you can't just change drs, that you have to provide a reason why need another. Maybe I'm way off base and everything I suggested is wrong, you can ignore my suggestions if you want! :) I would be very angry, too. I am sorry you're even having to write this letter!!!!
Prayers for you and even more coming tomorrow at church:pray:

[ICLori]

Thank you so much, Briza!

Another thing I don't like about this doctor - he wasn't planning on sharing the results of any bloodwork with me. His idea of this relationship is, I show up to have my blood drawn, pee in a jar and submit it, and a month later he meets with me and dictatorially tells me what to do.

Screw that! In fact I'm not participating in any more tests until I get a different doctor. One who allows me to participate in my own health care decisions.

Blessings,
Lori

[Briza]

Lori, you're welcome, I hope I was of help in any small way :grouphug:

"Another thing I don't like about this doctor - he wasn't planning on sharing the results of any bloodwork with me. His idea of this relationship is, I show up to have my blood drawn, pee in a jar and submit it, and a month later he meets with me and dictatorially tells me what to do."

That would be something that could be easily put into the letter.

For example, you could say something like:
I have always been proactive about my healthcare and treatments; it is very important to me because __________. For this reason, I am concerned that I have not been updated promptly and regularly on my bloodwork; considering the serious nature of my situation/condition, I would prefer a doctor who will take this into consideration.
??

[maryla]

Lori,

Again, I am so sorry to hear all this is going on....You have been my hero! You, probably, without knowing it, have helped many, many of us IC'ers.

Unfortunately, for us, it seems that when we, with chronic illnesses complain about something, we are poo-pooped off. It's happened to me numerous times with different drs. I had one, Because, I was complaining of being SO exhausted, she told me to take a vitamin. I knew, if I didn't leave her presence, I was going to slap her. And I'm not a violent person. As a matter of fact.....I use to teach non-violence to groups of violent persons. I feel we are just not heard........that would really piss me off too, to have a dr. talk to my husband, and tell him to watch me!!!!urrr!

And I truely understand about praying for cancer. I had a tumor removed from one of my nodes in my neck recently and I prayed too that it would be cancer, at least I thought, Oh, after I get treatment, I will feel better, have more energy, feel maybe, alive. No one who has not been there, as us ICer's can understand that, we just want something instantly fixable so we can feel better!

I live not far from you, a little N. of Dayton, and yes, I would love to get together sometime, thank you again for being there for us! If you would like, I will pm you with my #

God Bless You

[ICLori]

Hi, Mary! It feels good to have someone else who understands, but it also makes me so sad that you've experienced this despair too. :( This is such an awful disease.

I felt my IC symptoms come back last night. The lower dose of CyA isn't enough. :( I guess I will have to live with this for awhile. It wasn't terribly bad, just frequency, but still bad enough I had to take a pill to shut my bladder up so I could sleep.

Sigh. I know you guys must be so tired of this by now, but I revised the letter yet again (I can't think of anything else at this point) and here it is...it's probably still too emotional, I think...:

#######################
Dr. XXXXXXXX,

I discontinued the beta-blocker after the first dose because it caused this reaction: I passed out (not in the sense of sleep, I lost consciousness); I had difficulty catching my breath (it felt like an asthma attack, which I get on rare occasions); I was unable to stand for a couple of hours because I was too weak; and I felt as if I were in some kind of stupor all-around for about 8-9 hours after taking the medicine. It’s obvious I would be unable to function on this medicine. My blood pressure was perfect, however, when I was finally able to walk again - it was 123/70 and my heart rate was 53. So beta-blockers do work, but at such a cost. Sure I will live longer with lowered blood pressure, but what good is a life spent unconscious or in bed all the time? I wonder how close to death I was, while I was passed out? If my heart rate was 53 when the medicine was nearly completely worn off, what was my heart rate when the medicine was exerting its strongest effect and I lost consciousness? I think it must have been lower than 53 at that point. Maybe dangerously lower.

I threw the bottle away, and I will never take another beta-blocker again.

I am worried our styles as patient/doctor might not mesh well. I don’t know you well yet, so these worries may be unfounded, but my initial impression was that you are the type of doctor who prefers to keep test results to himself, and prefers not to have to explain to patients the reasons behind dictates. My impression of you is that you would like your patient to come in when you say to come in, and follow your orders, without ever asking questions or being involved in their own health care in any way.

I’m not that type of patient, at all. I want to know test results as soon as possible after they are available. I want to know which direction my kidneys are heading in. I want to try to see if I could go back up to 300mg per day of Neoral, once my kidneys get a little better. I’m having IC/PBS symptoms again, unfortunately, at the lower dose. Perhaps it would be different if I followed a BID dosing schedule for the 300mg rather than TID.

I want to understand the reasons you are prescribing me this pill or that - or taking me off this pill or that. I want some say in my health care. If I’m not allowed a say, and you try to order me to do things, I will sit there and LOOK compliant, but I guarantee I will be non-compliant once I am out of your office. I felt condescended to and insulted when I was in your office for our first visit. It bothered me when you turned to my husband and told him to keep an eye on my mood and report back to you. I don’t like the idea of you and my husband communicating behind my back, and especially not about whether I have PMS that day.

I think I made a mistake by bringing my husband with me to the appointment, and I won’t make that mistake again. I want to make it very clear I do not wish for you to violate HIPPA laws in my case. I also want to make it clear to you I’m not a child brought in by a father - I am the patient. I am a grown woman, a former Army Officer (got out so we wouldn’t be stationed apart), I was in theater during the Gulf War, and I feel entitled to be treated as an adult and not as a child.

I’m not really sure why I’m being sent to you in the first place. What is it that you are doing for me, exactly? My impression is, you are there mostly just to watch me get better. This is acute and I am likely to get better whether you are watching it happen or not. And if I don’t, someone will put me on dialysis - most likely the ER doctor when I come stumbling in with uremia - and again, you won’t have much to do with that.

I find myself not wanting to submit to the tests, since I don’t see any benefit for myself in doing so if you won‘t bother telling me the results. I can’t bring myself to schedule another appointment with you. I’m upset about my kidneys, I’m upset because my IC pain is returning on the lower dose of CyA, and I don’t have any psychological reserve left to deal with a doctor whom I suspect is a misogynist.

I don’t think we are a good doctor/patient fit.

Sincerely,

[Trishann]

Sending you many hugs to Lori, (((((((((HUGS)))))))))

[kendraredding01]

Your thread has raised some questions for me,I went to my first nephro. last week & was blowed away when he told me that my kidney function was 38% I have seen doc after doc mostly uro.s and they just all say pain man. when i don't want surgery. Although I am deep in kidney disease I don't know anything like which numbers mean what? What about something reversing it's self? could you help??:smile tee
Kendra

[SharonA]

Kendra...I am sorry to say, but this is a very old thread and ICLori has not been on the boards since "Last Activity: 11-12-2007 11:42 AM".

The only suggestion I have is probably something you have already done a lot of...Research using a Search Engine.

Sending you lots of (((hugs))) and hoping that you will be able to find the answers to your questions. :)