Pain in native kidneys

[okarol]

Jenna has just told me she's having pain in her native kidneys. She had pain in her transplanted kidney about 4 weeks ago and the doctors had her take a round of antibiotics which seemed to relieve the symptoms. A couple of days ago Jenna thought the back pain was related to her menses, which is not unusual for her, but it's typically gone after the first day, and this has not stopped. She has never had discomfort in her native kidneys, even when they first failed 10 years ago, and through 3 years of dialysis and 4 1/2 years of her current transplant. This is the first time. We are trying to reach her nephrologist.

[cariad]

Sorry to hear about this latest complication, Karol. My native kidneys were taken out at transplant, so I have no helpful experiences to share. I do periodically get pains in my transplanted kidney (the first one) and have done for as long as I can remember. I hope the antibiotics are the answer, but smart of both of you to call in to the nephrologist.

Good luck.

[Willis]

I've always had some pain in my kidneys (well, at least since I was a teenager) and it's something now I just have to live with. I've had every test imaginable over the last 40 years and they have always been negative. Even though in my case no specific cause was found (it's probably a symptom of my IgA Nephropathy), it could be the result of narrowing of the artery leading into the kidney. Combine that with elevated BP and it's going to cause pain. I had ultrasound on both kidneys last year just to check for that specific possibility and again the test showed the blood flow was adequate. I'm pretty ignorant on the detailed medical stuff so I'm just relating what I remember the best I can.

 

[Rerun]

I'm sorry this has to even happen to Jenna.  At least she told you.  Sometimes you just pretend it is not happening.  I hope it is nothing.  Keep us posted and hugs.

                 

[billybags]

okarol I hope you are worrying about nothing, but you are right to get it checked out. Lots of love.

[jbeany]

Whenever mine hurt, it is because my hemoglobin is low.

[okarol]

I'm sorry this has to even happen to Jenna.  At least she told you.  Sometimes you just pretend it is not happening.  I hope it is nothing.  Keep us posted and hugs.

                 

She waited 3 days, which is short for her so it must really hurt. I gave her arthritis strength Tylenol so she is a little better.
Still waiting to hear from doctor.

[brandi1leigh]

I have pain in my kidneys a lot, but if its a sharp pain I always talk to my neph because it could be an infected cyst. I think I remember that your daughter has PKD. If it's an infected cyst, it can cause sharp pains. Keep us updated.

[MooseMom]

Please do let us know what you find out.  I'm sure this is very worrying for all of you.   

[sullidog]

Yes, hopefully he calls soon.

[okarol]

I have pain in my kidneys a lot, but if its a sharp pain I always talk to my neph because it could be an infected cyst. I think I remember that your daughter has PKD. If it's an infected cyst, it can cause sharp pains. Keep us updated.

Actually Jenna has kidney disease due to a bad bladder (although others in my family have PKD.)
The doctor emailed me from Indonesia! He will be back on Thurs and wants to talk more about the symptoms.
She's been taking tylenol and seems ok for now.
 

[brandi1leigh]

I have pain in my kidneys a lot, but if its a sharp pain I always talk to my neph because it could be an infected cyst. I think I remember that your daughter has PKD. If it's an infected cyst, it can cause sharp pains. Keep us updated.

Actually Jenna has kidney disease due to a bad bladder (although others in my family have PKD.)
The doctor emailed me from Indonesia! He will be back on Thurs and wants to talk more about the symptoms.
She's been taking tylenol and seems ok for now.
 

Sorry! That's what I get for not doing my homework before posting. I remembered reading about your family having PKD and jumped to conclusions. Glad the tylenol is helping.

[okarol]

Now the pain seems to be more on the right side. Can you get a kidney stone in a native kidney even thought you've got a transplanted kidney too?
My husband made a good point. I was relieved that Jenna doesn't have a fever, but he said the immunos keep a fever from rising and doing what it would normally do to fight an infection, so it could be a misleading clue.
Her labs from last week are fine. Her creatinine is 3.1.
Her local neph returns tomorrow and she has a routine visit with her neph in San Diego on Monday. I am not sure what to do...

[monrein]

I wouldn't know what to do either except I think I'd try to see both nephs just to cover all bases.  I've never had pain in my native kidneys and they've been so useless for so long.  My understanding is that the native kidneys can atrophy quite a bit but since blood still goes to them that leads me to wonder if a small blockage or stone or whatever could cause pain.  If the pain is shifting sides, could it be an issue with referred pain, like a pulled muscle or something in the lower back.
Hope it can get sorted soon...you both have enough on your plates.   

[rsudock]

can she lay on a heating pad to help ease the pain until she gets to the doc? sometimes I use icy hot too. I try not to take pain pills if I can help it. I really hope this gets figured out. Praying for you Jenna girl!!!

xo,
R

[okarol]

The pain seems to come and go. We spoke to both hospitals and after looking at the labs from last week the doc said to start her on tetracycline as this bug is resistant to the other meds she took before. Last night the pain moved from her back to her transplanted kidney. Jenna is never in pain, she can tolerate a lot, so having her hurting is especially disturbing. She started the meds yesterday afternoon, but isn't any better. She was so uncomfortable her dad gave her a vicodyn this afternoon, the pain being in her back again. She has a fever of 99, which could be a lot for an immunosuppressed patient. Her BP is up a bit. She doesn't seem to have an swelling.
ARRRGHHHHHHH! I don't know what to do. It's Friday night and I am afraid she may need to go to emergency if it doesn't improve. Our local hospital does not do transplants, and we are NOT willing to let her go to the hospital where they've been working up her evaluation (more about that here http://ihatedialysis.com/forum/index.php?topic=20615.0) - we have lost confidence in them. So the closest place is about 40 minutes drive (with no traffic.) I am prepared to go. We don't know any doctors there, but they have a good rep for transplants. But it's the weekend - which is bad news for emergency visits. Her transplant hospital that prescribed the meds is 2 hours drive away. She's got an appt. there on Monday. I pray she hangs in there til then.   

[kristina]

I keep my fingers crossed,

best wishes from Kristina. 

[romanyscarlett]

This all sounds awful for poor Jenna. I will be keeping her in my thoughts, please keep us updated so we can be there for you both.

*big hug*

[kristina]

Dear Karol and Jenna,

I am not sure whether this might help,
I just mention these ideas because I feel they have helped me a little.

I still have my own kidneys, but I have long suffered from severe kidney-pain,
which made me shiver, having temperature and I also felt a terrible draft on my kidneys
I have never received any diagnosis for the pain
and have been told by doctors years ago, it is “just in my imagination”.

For many years I have tried desperately to find some way of easing the severity of the kidney-pain
without the intervention of conventional pain-killers which, I have been told,
would damage my poor kidney-function even further and this I must avoid at all costs.

For the past few years I have been using small “angora”-kidney-warmers
which you step into and pull-up to cover the whole kidney area.
I wear this garment constantly and it keeps my kidneys cosy and warm
at a constant temperature, day and night.

Since using this, my kidney-pain has almost gone completely
and so has the shivering, the temperature and the feeling of a draft on the kidneys.
One can never say definitely that this garment has had an effect
but it is a coincidence that the pain eased after using the garment  and therefore I keep on using it.

I have several of these angora-kidney-warmers and use them in rotation
because I wash them regularly and always use a different one at night.

I also have a freshly squeezed lime in a glass of water each day
and, I think this has helped me also.

Best wishes and good luck from Kristina. 

[kitkatz]

Are things any better?  Prayers for you, Jenna and the family. 

[okarol]

She is still in pain and her dad gave her a vicodyn last night. Her back hurts a lot but she's taken arthritis strength Tylenol so hopefully that will help. She called the local neph here and he said perhaps she needs another ultrasound. But since she'll be at Scripps on Monday I think he feels they will handle it there. We are waiting to hear back from the Scripps neph. I am trying not to freak out but I have this deep dark feeling of impending doom. 
The good thing is she seems to be able to eat ok. That always makes a mom feel better.

[MooseMom]

Gosh, I really hope everything is going to be OK.  I'll be praying really hard for all of you.

[okarol]

The neph called back. He doesn't really have a solution. Not sure if she should we do labs tomorrow? She says she hurts too much to sit through the drive to La Jolla. Going to the ER seems crazy tonight. She may need a pik line and vancomycin. Her temp. is normal, her BP is ok, her urine in ok, her weight is the same, no swelling anywhere. Just pain in native kidneys and occasionally in transplant. Dr. told us to call the neph on call if Jenna needs to be admitted. It's left up to us to decide. 

[okarol]

A friend said this sounds just like her husband's kidney stone pain.

[monrein]

Kidney stones are super painful from what I've heard and it can move around too....OK. now let's get it gone!