Finally an Ultrasound

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Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/23/2009 3:36 AM (GMT -7)   
I hope all of you are well. I know Amy and Judy have been dealing with struggles lately. I feel bad posting because my issue is so minor.
 
My GI has finally agreed to an ultrasound to determine why I have had so much right side pain and to rule out a GI problem. He also me at my last visit he could feel a mass. My last CT scan showed lesions on my liver so the ultrasound will make sure that they are cysts and nothing more. I know he has been dragging his feet because he doesn't want to interfere with the care from my nephrologist., but at least it finally is happening.
 
I just need to know.
 
Elizabeth
 
 
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, folic acid, and Enalapril,
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/23/2009 4:50 PM (GMT -7)   
Hey Elizabeth!!! Congrats on finally gettin an ultrasound! I am so happy for you and I know it will be such a relief to know whats going on and not just guessing. When do you get the ultrasound? Do you know when you can get the results from it? I pray that everything will turn out ok and the pain your having will be helped! Keep us updated...ok?
 
Don't feel bad about posting, we are here to encourage everyone no matter what the issue may be. Sounds like yours is pretty serious since he could feel a mass, I really hope it turns out ok!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide,  Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 9/23/2009 6:06 PM (GMT -7)   
Elizabeth,
 
I'm so glad that your dr finally ordered an ultrasound.  I will be praying that everything is okay and that your pain eases.
 
I hope that you feel better soon.
 
Judy
 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/24/2009 4:11 AM (GMT -7)   
Thanks for the prayers. My appointment is at 9:00 this morning. I will do my best to try and get the opinion of the technician before I leave. I also have to have some blood work and a TB test because my GI needs some baseline readings before I start the more powerful meds. It will mean weekly blood work and the one med makes your hair fall out. I used it before for a short period, but had surgery and was able to go off. I haven't decided if it if worth it yet.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, folic acid, and Enalapril,
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 9/27/2009 8:39 AM (GMT -7)   
Ok Ive been gone off and on for two weeks now and have missed so much.
 
Elizabeth its great that you think of other who you think are struggling with issues.  But you also struggle with your own issues and we will never think they are minor! 
 
You are just like me I always ask trick questions to the tech..lol
 
So have you gotten the results yet?  WOW a med that makes your hair fall out what that for?  Ok I'm full of questions but I have missed so much.. smhair
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/27/2009 10:15 AM (GMT -7)   
I couldn't really get any info out of the tech this time. I could see what I think are liver cysts on the screen. Most looked clear so I am assuming they are cysts.

I have to take the dreaded meds because I have Crohn's disease. It is a inflammatory bowel disease which I have been dealing with for the last 20 years. I can't seem to keep the inflammation in check so my GI is going to try some more powerful drugs. I am trying to avoid more surgery. I am hoping that this new steroid I am on now along with prednisone will help him keep the inflammation at bay for awhile. The more powerful meds will make me so sick it is hard for me to work. I was on them for a 2 month period about 3 years ago and hated it, especially the hair loss and extreme fatigue. My GI is pretty good and will listen to what I am willing to put up with. I like that I have some say in my care.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, folic acid, and Enalapril.
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 9/28/2009 3:26 AM (GMT -7)   
You should already know that PKD comes with common cysts on all organs, the liver is a big one.  I have cysts throughout my body.  Breasts, ovaries, liver, pancrice and ect.
 
Hopefully you will get your results soon.  I hate waiting on them.
 
Wow such strong meds smhair    I hope this time you can work then it would mean it isn't as bad as the last time..
 
Keep us posted
 
Laurie
 
PS I have read about Crohns that is one NASTY condition
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/28/2009 3:49 AM (GMT -7)   
I knew about the cysts in other organs, my GI felt that the mass may be my Crohns because my CT scan showed such a big change within a couple months. And I am in a lot of pain in just one ares. He is trying to rule out an obstruction or stricutres.

It is really odd, because I only have pain and swelling in one side of my body. Is that common? It seems my Crohns and PKD are fighting for control of my right side. Does prednisone help relieve some of your cyst pain?

I hope you have a good week at work.
Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, folic acid, and Enalapril.
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 9/29/2009 8:33 AM (GMT -7)   
I was told at my last nepherology appointment that cysts will cause pain.  The bigger the more pain.  Yes I have researched PKD very heavily and the kidneys can and will over time mutate.  The cysts will acually take over your kidneys and change there size and shape which causes pain.  If a cyst breaks which is comon and blood enters the cysts it will also cause pain.  I have a mass attached to my Left kidney that causes me alot of pain.  I chose not to have surgery yet.  Scarring will also cause more pain and I've had my fair share of pain.
 
So yes Kidney cysts if large enough can be observed on a physical exam. (swelling)
 
Prednisone will not help with the pain.  If the mass was inflammation based it would but cysts are fluid based.
 
If the mass is attached to the kidney (even as small as 7 cm) it can be drained which could relieve your pain.  The only thing that relieves my cyst pain is pain meds or whenever I agree to get it drained but then it could be more then one causing the pain so I don't know how they would decide which ones to drain.  I have hundreds of them.
 
I so feel for you.  I so UNDERSTAND about the conditions trying to fight for control.  I have CHF and PKD and they both aggrevate each other and found out each causes the increased speed of progression for both conditions.
 
Do you feel like I do at times when you have two different doctors both sort of on the same page but not really understanding what the other causes the other.  Or if what your feeling it connected with one or the other???  I get so frustrated.  That right now I'm taking a break from them.  I know both conditions are always going to be there.  So I take my meds and for the next 6 months I am not going to worry about all the side effects just go to the pain clinic.  But I will start again the next round and ask about other things that are starting.
 
I also want to say that scans don't show everything.  I had tons of them but when I had surgery back in December they found more issues.
 
I gotta go to work but I will check for a post from you when I get home at 9 tonight.
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/29/2009 2:16 PM (GMT -7)   
I think I thought because my kidney function was still good that the cyst couldn't have advanced that much to cause daily pain. I have had cysts break but the pain goes away after a day or two. I guess the cysts in my liver are going to be more difficult to deal with.

Who knows????? It may just be my Crohn's acting up. At this point I am about ready to just off all my meds and start from scratch. It would be so nice if I could get both doctors in one room and they could make a decision about my treatment. But we all know that is literally impossible.

Thanks for the info. You are a great source of knowledge.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, folic acid, and Enalapril.
 


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 10/12/2009 6:04 AM (GMT -7)   
They found a lot more cysts than they originally thought but no bleeding. So maybe this is where my pan is coming from. My GI wants to get me off my steroids so we are trying a new med and as luck would have it my lymph nodes in my neck swelled so badly that you couldn't see my jaw line. My GI was doing colonoscopies all day so I went to my family doctor. She said she thinks I just have a bug of some time and put me on Cipro. I also have a kidney infection which I didn't know I had. Then she says she thinks the pain is coming from kidney stones and wants me to have monthly urinalysis.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, folic acid, and Enalapril.
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 10/12/2009 8:28 AM (GMT -7)   
Some people can go their whole life with cysts and never feel discomfort.  My mother was one of them.  But I think you are right the advancing of cysts will cause more pain.  The kidney infection alone can be very uncomfortable.
 
Keep us posted about the lympths that doesn't sound good at all!!!!!!  Cross your fingers that it is just a bug of some sort.  DOn't need to be adding anymore conditions to your list.
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........

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