Blood Counts

[rkm001]

Took Mother to dyalysis today. Her rbc is 3.40, creat 5.73, hemotocrit 33.6, hemoglobin 10.7. The creat has been consistant since she began dyalysis. The doc was hopeful for some recovery, but i am getting discouraged. I have noticed her short term memory is not very good, I assume maybe because of her blood counts? ( any input about this is greatly appreciated) She cannot hardly walk and complains her feet and stomach hurt. Also, she is complaining again about the head and ears bothering her. Giving Tylenol for pain, seems to help some.

[Sangye]

Tell me again (I lost track)-- is she seeing a Wegs specialist yet?

What meds is she on?

If she's on pred, she should be taking a prescription-strength acid blocker. Pred will destroy the stomach lining fast. Very painful.

[rkm001]

She is on 30mg pred now, 25mg Cytoxan, prilosec, cumadin, vitamins. When I lay her down she moans and when ask why she says my stomach hurts. We saw a specialist last Thursday, but he did not have time to view her records. He ask for 2 weeks to come up with a plan for her, next appt. June 5th.
The memory loss is becoming more prevalent as with her knowledge of bowels. I want her to be again on her own, I believe this is getting more far fetched. She needs 24 hr care and unfortunately I cannot stay with her. Im afraid going to a nursing home will only diminish any or all reality of a recovery.

[andrew]

The Prilosec will be for the stomach acid issue. I'd be making a scene if I were you. Two weeks to come up with a plan is a bit of a stretch. Get an appointment with the specialist soon so you can chat to him and make it clear what's going on. Alternatively, you're fully entitled to find another specialist.

[Sangye]

I agree with Andrew. Two weeks is too long for the shape she's in. A scene is in order.

Her pred and Cytoxan doses are not very high-- might be allowing the Wegs to be active enough to cause her pain, etc....

There are a lot of possibilities that might explain her symptoms-- Wegener's, concurrent infection, etc.... None of which will wait 2 weeks to be addressed.

[rkm001]

Well back to the hospital we go. Mother woke up yesterday early morning with terrible stomach problems, I just decided why suffer and took her to emergency. They did a CT scan of her abdomen and found dyviticulitis, so they are giving IV antibiotics. Her wbc is down again so no more Cytoxan for awhile. Something that was mentioned was her Sed Rate is high, if anyone knows more about this let me know.The best thing was they gave her IV pred of 125mg and dilotta for pain. She slept like a baby all day. I requested an ENT doc look at her and make sure this was ok and it was, but now i feel better. Mother is so miserable. She is so weak walking is almost dimished, eating is very hard, and I hope my complaints to the docs will get some results now.
By the way, her PC doc actually came to see us at the hospital. I had not talked to him since she was diagnosed in late March. Probably because of me mentioning to his staff the misdiagnosis.

[Doug]

Erythrocyte sedimentation rate - Wikipedia, the free encyclopedia

http://www.nlm.nih.gov/medlineplus/e...cle/003643.htm

http://www.mayoclinic.com/health/div...s-diet/HQ00548

The top one will take you to a description of the Sed rate measurement. It mentions "normal" rates at different ages, by sex.
The second one will take you to a full explanation of wbc.
The third one is a bonus, I guess, and is what the Mayo Clinic says about diverticulitis; I bet Sangye can add a lot to this one, too.

Your mother is very fortunate to have you following up and through on her on-going battle. Bless you!

[rkm001]

Thanks Doug for the attached websites. Mom had an upper GI this morning which verified a large ulcer. We believe this added to her not wanting to eat. They are targeting this with an initial dose of something and then a more powerful acid blocker. The kidney docs have started to reduce her pred intake, down to 10mg daily. Hoping to start the Cytoxzn back up soon.

[Doug]

Glad I was able to help you out. Now, let's hope and pray the ulcer can be put in order so she can concentrate on getting the WG in control. Whew! That's a big order, but you know, at least, what's she's up against now. An interesting observation on the doctor showing up after the mention of misdiagnosis! I've noticed doctors don't walk on water yet they are never wrong! Ha! That's just some of them.

[germaine]

For what it's worth, and I may be a healthier case than your mom, I am on 150 mg procytox, presently on 20 mg pred and going down, 160 grams of sulfatrim, 25 gms hydrosclorothiazide, (high blood pressure) ranitidine 2twice aday at 150 mg, plus 1000 units calcium and 200 units Vitamin D. I know the doctor seems to calculate body weight to determine dosage. I can't let pride get in the way of someones health so I will bashfully admit I weigh approx 175 lbs.