Anybody have medullary sponge kidney?

[jcorsig]

Hi,
I'm new here and was hoping to feel less alone. I have medullary sponge kidney, some spinal cord damage from a car accident and am waiting to get my gall bladder out.

I take 3 percocedt 5/325 a day with 2 50mg ultram, 100mg of allopurinal, and 3x 1080potassium citrate. It manages my kidney pain and back pain but my gall bladder is unbearable. I've tried 3x to have a hydascan only to get violently ill when the cck is introduced. It's not blocked just not functioning at all. I've dropped 6lbs this month alone because I get sick.

I know it's not my normal meds as I've been on this dose since 2007 and it's managed by my nephrologist.

Does anyone have any advice or alternatives? I'm scared of needles but will acupuncture work? Yoga, supplements? I just want to be able to be a good mom to my 2 year old but it hurts so bad.. And I am tired from not sleeping or eating.

[Duncan]

Welcome. I'm kind of new here too. The only health issue we have in common is the gallbladder problems. I went through all the gallbladder attacks and misdiagnosis a few years ago. I finally had it removed and have been better ever since. No more pain (no more gallbladder) and I will probably have to take nexium the rest of my life but that's not a big deal. The surgery wasn't bad at all. You just have to take it easy for a couple of weeks and you'll be fine. Btw, I have had acupuncture a couple of times for headaches and muscle spasms. It always made me feel great for a few hours afterwards but the effects never really lasted. For me it was more temporary relief than a real treatment. Hang in there, maybe someone else here with kidney problems can give you some better advice.

[jcorsig]

Thank you. My kidney pain is managed but nothing touches the gall bladder except the temp. Relief I get at the er from dilaudid but I don't want to be on that because it'll ruin my tolerance and I'll have a heck of a time stepping back down.

[Duncan]

You might try adding one or two (no more than 2 in 24 hours) of Aleve to your Percs or Ultram. I only had Aleve when I was having my gallbladder attacks and it kind of took the edge off the pain, sometimes.

[jcorsig]

Today is bad. I'm trying to hang out here to show myself that others have it worse but I think I'm gonna have to break down and go to the er because it hurts so bad. I just hope I don't get the one doc who told my husband before it's all in my head, that I'm an addict and need counseling.

[Jeremy Fisher]

Today is bad. I'm trying to hang out here to show myself that others have it worse but I think I'm gonna have to break down and go to the er because it hurts so bad. I just hope I don't get the one doc who told my husband before it's all in my head, that I'm an addict and need counseling.

I am so sorry for your pain. Sounds like you are dealing w/a lot. How did it go at the ER? That place can be very unfriendly. (Nevermind, just found your ER thread. Didn't go well for you. Sorry about that.)

Have you considered having your gallbladder removed like @Duncan? And for the record, I think removing an organ is a HUGE decision.

[jcorsig]

I am so sorry for your pain. Sounds like you are dealing w/a lot. How did it go at the ER? That place can be very unfriendly. (Nevermind, just found your ER thread. Didn't go well for you. Sorry about that.)

Have you considered having your gallbladder removed like @Duncan? And for the record, I think removing an organ is a HUGE decision.

If I had a Swiss army knife, a bottle of rubbing alcohol and the knowledge of where to cut it'd be gone already gone. I'm down another pound. I'm suffering. I don't know why pain isn't an emergency ESP. On this level.

My pants aren't fitting..I'm feeling very much like a bad mom to my two year old..I don't have the weight to lose as I'm already a size 6.

I had a little mini thing the other day where I cried because I just couldn't take my son out back to play with his bubble machine so we ended up first him crying and throwing himself on the floor till I managed to get him some apple slices and bribed him to watch Thomas the engine with me..

I feel like such a failure and want him to grow up active..and its me holding him back.

[Jeremy Fisher]

@jcorsig, is removing your gallbladder an option you would consider? If you started asking your doc(s) to schedule surgery, they might give you the meds you need.

I understand how you feel about the mom thing. It's ok. It was my problem too. I remember lying on the floor w/female pains with my 2 year old crawling around me. Still it took me 7 more years to decide to have a hyster.

Listen, you love your son. He knows it. All kids throw fits. A lot of parents don't have the time or energy to play w/their children. Your reason is more valid. Don't beat yourself up. You are doing the best you can. The fact that you feel bad shows how much you care.

I still can't play sports w/my dd due to my neck issues. So I put her in classes and rely on my dh a lot. You can do the same. If no dh in the picture, there are usually inexpensive classes available through local rec centers.

If he's too young now, well at that age, kids make their own activities. Don't feel guilty about a little tv. 3/4 of the country uses tv too much. Your son will be fine.

Hang in there. Are you looking for some solutions to your pain?

Sincerely,

Fire

[merrymiau]

@jcorsig

I haven't really been following your case (I know Fireplaces mentioned you had a bad experience at the ER), but if you are experiencing such extreme pain and it's been diagnosed as gallbladder-related . . . oh my gosh, just bid adieu to that thing and never look back! You will feel 100% better once it's out of your body, trust me. I was misdiagnosed for years with silly ailments like "acid reflux" and "irritable bowel syndrome" and all kinds of things, until one time the pain got so bad I showed up at the ER -- they immediately diagnosed it as gallbladder disease. The ER docs could see how many stones had already accumulated just by doing an ultrasound. My disease had progressed to the point where they decided to go through with a surgical removal within around 24 hours of my having checked in. And like @Duncan said, the surgery was really no big deal in the end. The incisions were very small & discreet, and the recovery time was remarkably short. My quality of life went way up once I said goodbye to my gallbladder.

[jcorsig]

If I had insurance it'd be gone. Since it's only pain and not blocked charity care could care less which is hard since I am in a good deal of pain.

Trust me, I want it gone bust the charity care surgeon is very busy and while pain sucks, it's not going to kill me like a blocked gall bladder could. Meanwhile I just keep suffering. Some days are better than others. I'm just frustrated because it's inhibiting my quality of life and by extension my son's.

I'd give anything to have the body I had before the car accident..to not hurt so bad I just cry. Winter's coming and I know it's going to hurt, I really wish I didn't feel this old at just shy of 29.

[merrymiau]

@jcorsig

I went back and read your post in the "Damages" thread. Your situation sounds so terrible, but I really don't believe all hope is lost. I was just now doing some research for you on options you might consider as far as finding a surgeon who will take on your gallbladder case either pro bono or at a greatly reduced rate -- you've probably done a fair bit of your own research already, but maybe two heads are better than one?

First, if you don't mind my asking, do you have Medicaid? (I know you said that both you and your husband lack health insurance at the moment, so I assume not. If not, have you tried applying?)

I really wish I didn't feel this old at just shy of 29.

You shouldn't have to. You are too young and have too much life ahead of you to be suffering like this.

[jcorsig]

Hugs. Youre so kind merry, I just tested up. We applied for the state insurance but because we collect unemployment we were turned down, my son is covered. It is scary because my husband is an epileptic.

The weather is cold and rainy today and that doesn't make matters any better.n

Ill just keep plugging away, something will give. I have faith.I just gotta hang on, thank younfor caring. It means more than you know.

[merrymiau]

@jcorsig

I would say you're welcome, but with all the pain and muck you're having to deal with at this stage in your life, you're pretty much pre-entitled to an infinite amount of support and care, IMO. It's just a rotten fact of life that our health care system doesn't always operate under those standards & lets people in your condition fall by the wayside all too often.

You said you're working with, or at least have been seen by, a "charity doctor" to address your gallbladder issues. Sorry for being dense about these topics, but I'm not quite sure what a "charity doctor" is -- did you go through your regional hospital's financial assistance program to get on his patient list? Or how does that work?

How long have you and your husband been unemployed for? Did you have a decent insurance package through either of your previous employers? One of you may still be eligible for COBRA benefits, if that's the case. And yeah, if you're strapped for cash at the moment, it's probably not a route I would recommend going down in the long-term just because the monthly premiums are sky-high. But, on the off-chance that you can still qualify for COBRA, would it be a feasible option for you to pony up the cash for the premiums for just a couple months, until you get this operation taken care of? Because I know COBRA is evil sometimes, but one great thing about them is they absolutely cannot discriminate against preexisting conditions. And I don't think they'll turn down a cholecystectomy based on the kind of symptoms you're describing: if you don't have a blocked bile duct right now, you're probably in danger of having one in the near future. So, COBRA is pretty outrageous as far as their premiums go, but in the long run nowhere near as outrageous as what a traditional hospital might charge you for that kind of surgery.

Anyway, just brainstorming options here. :/ I know you have other painful stuff going on too, but it sounds like your gallbladder issue is the one that's the most time-critical just because you've mentioned it's causing you unmanageable levels of misery. It would be awesome for you (and your son!) if a little bit of detective work led you to discover a magic loophole in the system that would allow you to say sayonara to that sucker once and for all.

---

P.S. If the COBRA thing turns out to be a viable option for you, I found this one post by @sk00t to be really informative: sk00t's got the inside sc00p

[Horseman]

Hey JC
I too have kidney difficulties due a horse accident I had in 2003....it is hydronephrosis and complications of renal colic as well as nerve damage........my left kidney does not function enough to flush so it accumulates stones of Oxalate and they pass and or have to be removed ie.surgery you obviously know what that is like and yeah pain management is minimal........I barely get by......I seriously have to regulate myself to a strict regimine and take the relief I get from taht to make do otherwise I end up suffering with nothing at all........
maybe when I can pm we can talk kidneys...........ha or just use this thread.......there are other complications with mine but I would have to get the records to get the terms and definitions
I do however have good insurance.........my x wife signed an agreement in the divorce to continue to carry me forever since the LLC we started and she kept carries my insurance........I sold out to her the business and I am pretty much retired to my farm.
I am very fortunate for that.