Pain in native kidneys

[texasstyle]

I'm sorry to hear she is having the pain and I hope it gets cleared up soon. I've heard the stones are bad pain as well.

[RichardMEL]

My brother had 2 kidney stones and was in a hell of a lot of pain. I think Jenna would have demanded something be done way sooner if it was kidney stones, unless she's got the pain threshold of a... a... umm.. stone?

In a situation like this I would ALWAYS err on the side of caution. I'd rather go to ER and feel like a fool if it's nothing much than NOT go and have something going bad that culd potentially be treated better the sooner it is caught.

If you're worried, even for peace of mine surely it makes more sense to get her checked out?

Just my 2 cents.

[okarol]

She's been in bed for 2 days, pain for 7 days. I may have mentioned that she's got a very high pain tolerance, so this must really hurt. She is still eating ok, urine output good, temp and bp stable. Called the local neph and he said "Let's get an ultrasound and labs first thing in the morning." He knew we wanted to avoid going to the ER or admitting her because the hospital is not a good place to be on weekends. Maybe it's just bad luck, but our experience is that contract nurses and very few doctors are around on weekends, and nothing happens until Monday morning. I hope Jenna can get a good night's sleep and we will go to the hospital tomorrow.

[MooseMom]

There is not much longer to wait, and i hope you find answers very soon.  Do keep us informed as we will spend most of tomorrow awaiting news.

[billybags]

Hope you go on OK. You are right about week-ends, it is the same here i n the UK  do not get ill over the week-end.

[okarol]

Caution - long rant 

Jenna had labs and ultrasound. Her pain is unrelenting. Did not see a doctor and we are home now waiting for results.
I almost starting yelling at people and started crying twice. Am I expecting too much??
The neph was doing us a favor by ordering these tests (I guess they're called "add ons" because they aren't scheduled appts.) He said go in and the nurse will arrange everything. We signed in and they said "You're not on the schedule." Jenna explained. They said maybe we were supposed to go to the hospital (adjacent to internal medicine.) No, Jenna explained, again.
They finally called the nurse and she brought a lab order with blood & urine labs and a renal ultrasound for native and transplant kidney. She sent us to the hospital (why? I asked, you have a lab and image lab here.) "It's faster over there." said she. Yeah, right.
We go to hospital across the parking lot, to admitting. "You're not scheduled for anything." Yes, Jenna explained. Blank stare. "Oh well let's see if we can add you on." Calls radiology. "No I am sorry, they are backed up all day. Have you tried across the street?" Ummm that's where we started. So turns out their lab can take her as an add on, but not the ultrasound.
OK lab is slow but gets it done. While waiting I looked at the sheet of those little stickers with barcodes that they use of every paper they handle and saw a name under Jenna's that I did recognize. When we got over to radiology I asked at the desk about it. The guy said, that's the name of the doc that ordered the tests. No, I said, that's not him. As it turned out, the name belongs to the transplant teams psychiatrist - not her nephrologist! Ooopsie. Hope she doesn't get the results instead of the neph!
After a long wait, while Jenna is in pain and barely able to sit, she gets called in. The tech begins the ultrasound and I occasionally ask him a question. I know they aren't supposed to give a diagnosis, but I am interested in what he's looking at. Jenna cannot see the screen so I asked if he would be able to see a kidney stone if there was one. Yes. I am sitting 5 feet from him but he speaks so quietly - I say "Either I am going deaf or you have the quietest voice I have ever heard." No response. After awhile I asked if he could see all 3 uretors. He said it depends on what they did in the surgery. Huh? They didn't touch her native kidneys. All they did was add a kidney, hooked it into the renal artery and the uretor was hooked up to the bladder. His response, "Well, then, you know more that me." Ugh! He spent a good 45 minutes on her. I finally asked if he saw any blockage or obstruction and he whispers "You'll get a report from your doctor." Uh huh. "Her doc is not here, but do you see ANYTHING LIFE THREATENING??" He did not answer. Grrrr Get me out of here. He did say he'd make a copy of the scans on a CD. We got that after about 15 mins. I asked Jenna if she could hear the tech speak, and she said it felt like she needed to claen our her ears, she couldn't hear him either.
I have to say I am grateful that her neph was able to arrange this. It only took 4 1/2 hours, as opposed to an emergency room, where we might still be waiting.
We came home and gave Jenna 2 vicodyn. She had one a few days ago and said it didn't really help, but 2 made her feel the best she has all week.

---LATER ---
Sooo... 4 hours later and the doctor just called. He told Jenna thats the ultrasound of her native kidneys, and her transplanted kidney, all are fine. And her blood and urine labs look good too, no elevated numbers or abnormalities (besides her low GFR, but same as it's been.) So there's no explanation for her last 8 days of pain. He said to take pain meds and hopefully it will go away in the next few days. I don't know if we should be relieved or cry. I feel like it's a weird dream that I can't wake up from.

[MooseMom]

Well, like you, I don't know whether to be relieved or not.   

[sullidog]

Hopefully she'll be free of pain soon, I've always gotten techs to tell me what they saw, but they also will say the doctor will know more.

[RichardMEL]

I reckon after over a week of pain and no obvious explanation from THIS doc that perhaps a second opinion should be considered? i mean clearly SOMETHING is wrong and poor Jenna needs some relief. Just putting a band-aid on it (pain meds) and hoping it will go away of its own seems a bit lax to me. Yes, I understand that if the labs and U/S show nothing obvious then that seems good, but something must be causing the pain and I'm not so surw I could rest easy just on those results (and of course poor Jenna can't rest easy from the pain).

Having written that I certainly hope it does go away sooner than later!!!!

[monrein]

I'm not even there and I'm frustrated as hell.  Poor Jenna, and this is no picnic for you either.   

[cariad]

I'm not there either, but say the word Karol and I will fly in, evacuate the area, burn the place to the ground, and salt the earth as I depart. (Salt prevents a new renal hospital from sprouting up, right? )

This is unadulterated crazy. And Jenna is only marginally better off than before the appointment, which is the sure mark of a time wasting exercise. I have been having symptoms of a UTI and intermittent pain near my original transplant and in my back (phantom native kidney pain?) so I read up on monrein's story because I wanted to compare symptoms and see if I had to revisit the idea of a nephrectomy. Correct me if I'm wrong, monrein, but it seems that they were not able to find anything wrong with your original transplant, but took it out anyway because they still suspected that that was where the problem lay? No one wants to see Jenna have to undergo surgery, and I am not a doctor nor medical professional of any kind, but I would say give it as much time as Jenna can stand, and then take them out if she is not on the improve. Something is terribly wrong, so I would go get the second opinion that Richard suggested and find that doctor with enough sense to say "I don't know what is going on here, but I am going to find out".

Gentle hugs for you and Jenna. 

[okarol]

Last night my I was talking to my hubby about what to do next. Apparently the doctor told Ed that it still could be a kidney stone, possibly in one of her native kidneys. That's pretty funny, since I asked the ultrasound tech if he'd be able to see a possible stone and he said yes. But others have told me that xrays or ct scans are what are best for diagnosing them. Jenna's taking vicodin every 4 hours (and stool softeners too.) She's drinking lots of water.  I hope it clears up, whatever is wrong. I'll give it a few days, and we will keep looking for answers in the meantime.

[billybags]

okarol, Some times I wonder if the Docs know what they are doing. Clearly some thing is not right. Getting second opinions is not always easy. Stick this out, hope Jenna is feeling a little more comfortable.

[sullidog]

I would go for the scan, but that would also mean she'd have to inject dye...

[Ang]

request the scan without the dye

[okarol]

I haven't posted because each day I hope the pain will be gone, but it's not. Jenna has been taking vicodin and resting. It's the weekend AGAIN and she's basically the same - with perhaps a tiny bit less pain. It's wearing on her spirit, she says it feels like it will never improve. Eleven days and we have no idea what's wrong. I emailed the transplant surgeon and he said it seems unlikely that an ultrasound would miss a kidney stone. The neph down there is impossible to reach, and frankly I am not all that impressed with his skills. The local neph is semi-retired and hasn't answered my email from Thursday. He is not in the office everyday and does not seem to have an on-call doc.
Part of me is saying WTF - what could be wrong with her?? 
Another part is screaming -- we NEED to take a GOOD look her care - it all seems to go to hell now that there's a challenge.
She's got a little fever 99.6 - her BP is 145/95 and she's lost a little weight. What good are all these numbers? No one has examined her.
I think I need a vicodyn.

[brandi1leigh]

This is a long shot, but I thought worth mentioning. What if it's not her kidneys? Because of her medical history, it's natural to go straight to the neph, but what if it's her gall bladder? I've had several friends who have had gall bladder attacks. The pain manifested somewhere different for each of them. One of them had chest pains, 2 had pain in their lower back, and one had pain in their side. Anyway, just a thought. Hope she feels better soon!

[MooseMom]

I am stunned that more isn't being done for Jenna by her medical team.  I am so, so sorry that she is suffering so much.  She can't stay on Vicodin forever!

I've had gall bladder attacks that could blow up the Death Star, and what Jenna is experiencing doesn't sound like the same thing.  Gall bladder attacks classically last for 3 hours, not 3 weeks.  But I could be wrong and brandi1leigh's theory could be worth mentioning.

Please let us know the instant you find out anything because we are very curious as to what this could possibly be.

[jbeany]

 

[okarol]

This evening her BP is better, no fever, weight stable and just having occasional pangs of pain - no vicodin since last night!
MM - we need to reassess her medical care. She's in limbo because the transplant team is far away and since the US and labs were ok, they sort of backed off. Local doc must be on another European sojurn and not able to respond.
 

[MooseMom]

This evening her BP is better, no fever, weight stable and just having occasional pangs of pain - no vicodin since last night!
MM - we need to reassess her medical care. She's in limbo because the transplant team is far away and since the US and labs were ok, they sort of backed off. Local doc must be on another European sojurn and not able to respond.
 

Well, that's a bit of good news!  I'm glad to hear that.

Yes, it does seem like y'all may need to reassess.  I can understand you all not feeling particularly secure with the present situation; her medical team just seem so far away, both physically and psychologically!  Do you have a plan in mind?  What does Jenna say about "reassessing"?

[okarol]

This evening her BP is better, no fever, weight stable and just having occasional pangs of pain - no vicodin since last night!
MM - we need to reassess her medical care. She's in limbo because the transplant team is far away and since the US and labs were ok, they sort of backed off. Local doc must be on another European sojurn and not able to respond.
 

Well, that's a bit of good news!  I'm glad to hear that.

Yes, it does seem like y'all may need to reassess.  I can understand you all not feeling particularly secure with the present situation; her medical team just seem so far away, both physically and psychologically!  Do you have a plan in mind?  What does Jenna say about "reassessing"?

Jenna scheduled a meeting for us with the transplant coordinator and psychiatrist this week. She wants to have a serious discussion, and then move on I think. Since her PRA is likely to remain high, she may explore desensitization, which is not available through either of her current hospitals.

[MooseMom]

Good for her!  I'll be really eager to hear what she learns.

[brandi1leigh]

I am stunned that more isn't being done for Jenna by her medical team.  I am so, so sorry that she is suffering so much.  She can't stay on Vicodin forever!

I've had gall bladder attacks that could blow up the Death Star, and what Jenna is experiencing doesn't sound like the same thing.  Gall bladder attacks classically last for 3 hours, not 3 weeks.  But I could be wrong and brandi1leigh's theory could be worth mentioning.

Please let us know the instant you find out anything because we are very curious as to what this could possibly be.

Sorry you've had to deal with that MooseMom. Sounds like you know more about it than me. I was just trying to think outside the box. There has to be a cause for the pain! I knew the gall bladder was a long shot. Here's another one (and this one I have first hand knowledge of). 7 years ago, long before I was diagnosed with kidney disease, I had an attack of pancreatitis. I hesitate to even mention it, because it's pretty rare in someone as young as Jenna. I had it at 28 and thought the doctors' heads were going to explode. But I had some similar symptoms to Jenna. Low grade fever that came and went. Constant pain, although it did come in waves. It was always there but sometimes it was more bearable than others. And I was violently nauseous. Pancreatitis can be caused by a gall stone that lands in just wrong spot, high triglycerides or an infection. (at the time of my attack, the cause of mine was unknown...fast forward several years later and my doctors now think that a cyst on my kidney might have burst too close to my pancreas and made it shut down...at the time I didn't know I had PKD and no one thought to mention it to me, despite numerous ultrasounds etc at the time.)

Anyway, like most of the other posters I second getting more opinions. No one should be in pain, and no doctor should be satisfied until they figure out why a patient is suffering. Especially someone who isn't a chronic complainer. Fingers crossed that you guys get some help and relief soon!

[MooseMom]

Hmmm....pancreatitis.  That's a workable theory.  Sometimes the smart thing to do is think outside the box!  I wish more docs would do just that!