pkdmom2five: Tuesday Updates

Tuesday, May 12, 2009

Tuesday Updates

After a rough week I went for my Endoscopy yesterday. Everything turned out well just as I suspected it would. I do not have stomach pain!! I have constant right upper quadrant pain. Per insurance requirements I had to do the Endoscopy in order to advance to the next test. I am scheduled for a HIDA scan on Thursday as well as more extensive blood work (CBC,PT,PTT,INR comprehensive Profile,lipase,amylase, and Liver Profile). Then I am also scheduled for a lovely test on the 26th.

I was very sick on Sunday (dizzy, double vision, and weak). My blood work from last Friday shows that my Iron levels have basically bottomed out again. Thus all the symptoms on Sunday
:-( We must find out why my body is not absorbing the iron. My kidney function dropped 4% in less than 30 days. The doctor said IF it continues to drop at the same rate in 6 short months I will need a new kidney or dialysis. We are praying that if we can get my body to absorb the iron it will slow kidney decline.

Today has been a good day. I was able to get up and I made breakfast (apple pancakes) lunch (hot dogs) and dinner is cooking (beef stew). For me that is a tremendous feat.

Thanks to everyone who have kept me in your prayers through all of this.

3 comments:

His Wife and Their Mommy said...: sorry you have been feeling bad. and I pray alllll those tests come back ok.. hope you feel better soon and I pray the iron will do what its supposed to do.. HUGS!!!; May 12, 2009 at 1:49 PM
Miriam said...: I certainly hope you feel better soon. Here is some information below from one of the blogs I track on Bill Peckham's blog, Dialysis from the Sharp End of the Needle. The blog is called "Renal Fellow Network." (http://renalfellow.blogspot.com/) Have you had an ultrasound recently of your kidneys? Perhaps you are having cyst bleeding that could be causing your low hematocrit. Just a thought. Anyway, here is the info. Perhaps it will help you.

Best wishes amd prayers,
Miriam

Chronic Pain in ADPKD

About 60% of all ADPKD patients are estimated to have a chronic pain syndrome, and often this is the initially presenting symptom of an ADPKD patient that brings them to medical attention.

An excellent review of this field can be found in a 2001 Kidney Internal article by Bajwa et al.

There are many potential reasons for ADPKD patients to get pain syndromes:

1. Cyst Growth: Obviously the growing cysts themselves can cause pain by compressing on other structures or stretching out the renal capsule.

2. Cyst hemorrhage: Hemorrhage into a cyst can also occur, causing acute pain. Sometimes this is associated with gross hematuria, though only if the cyst is in communication with the rest of the nephron.

3. UTI's/recurrent pyelonephritis: not surprisingly, this is more common in women than in men. Again, because not all cysts communicate with the urine, it’s possible that you can have a cyst infection even with a sterile urine. If there is an infection, it’s also important what antibiotic you chose, since not all antibiotics have good penetration into the cysts. Penicillins, for example, are not very good at penetrating cysts; fortunately, both quinolones or Bactrim are quite good at cyst penetration.

4. Nephrolithiasis: up to 25% of ADPKD patients have nephrolithiasis; the most common type of stone in ADPKD is uric acid stones.

5. Chronic back pain: enlarging cysts can cause increased abdominal girth, leading to increased lumbar lordosis.

6. Polycystic liver disease: the same process which causes cyst formation in nephrons commonly causes cyst formation in bile ductules, though this is usually asymptomatic. Occasionally, severe liver cyst growth can cause severe abdominal distension and pain; May 12, 2009 at 2:10 PM
Grammie Kim said...: Praying for your next tests. I hope that stew was a balm for the day!; May 13, 2009 at 9:13 AM