My sister is on dialysis and, in the past 6 months,she has been going progressively downhill, and no one is concerned, except us, her family. My sister, Jill, is 5'6" and, as of today, weighs 78 pounds. She has not seen a doctor in center in over 11 months, and finally got an appointment with one last week. Her complaints included shortness of breath, nauseau and, when she tries to eat looses it, no energy, etc. etc. He immediately looked at her last labs and said, "well your labs look good". She finally convinced him that she was not well and he ordered a battery of heart tests which, ultimately, turned out O.K.

However she continued to be very short of breath and last night complained of a heavy feeling in her chest, and she was extremely restless.
Called the doc on call and he reported that all of her labs looked just fine. . . proceeded to suggest that she was under stress so that was causing her shortness of breath. Argued with him that this was not an anxiety attack. Finally asked what meds she was on, and immediately stopped 4 of them (most of which he had recently prescribed!).
So my question is, does anyone know if these drugs can be the cause of her current condition?
Prevacid (30 mg) doc ordered to stop
Digitek (0.125 mg) doc ordered to stop
Marinol (2.5 mg) doc ordered to stop
Prozak doc ordered to stop
Still taking
Compazine (5 mg.)
Miacacin (calcium nasal spray)
Folic Acid
B-12
The experience with this doc to date is he gets very excited when he thinks he knows the cause . . . then when nothing shows up he drops it. I think his reaction last night to stop certain meds is questionable since, as I said, he had just prescribed them and I think he just wanted to get me off the phone.
So, any help with with this would be greatly appreciated. Are the list of meds suspect? Could they be causing her condition?
As many of you I'm sure have experienced, Jill's labs look good, and her test results are negative so according to the doc "she is fine"!

As of tonight, her breathing is less labored, but she is like a "dish rag". Any thoughts and/or advise would be appreciated.

Thank you

Hi Wendy:

Personally, I�m as confused as you are. Some of the symptoms, like nausea or restlessness - especially of the legs - are common among dialysis patients. The rest needs a better explanation from the nephrologist.

Prozac, as you know, is prescribed for depression. Could this be contributing to your sister�s condition? Prescribing such a drug and then dropping it on a dime seems highly unusual to me.

I think you must see another nephrologist. It�s an uncomfortable situation to be in, but if she hasn�t met personally with a nephrologist in 11 months, something is wrong.

Please keep us posted and I�m sure others will contribute.

Best,
Mike

Mike
Thank you so much for your thoughts. I have thought for sometime now, and her history supports this, that she does not always clearly fit in a pattern that is easily diagnosed. For example, 6 years ago she was seeing a nephrologist for protein spilling and he misdiagnosed it as Barters Syndrome - so for over 1.5 years her kidneys were failing but no one recognized it. In reviewing her labs from that time, she was within "acceptable ranges". However when considering her size (at the time approx. 118 lbs) and the slowly but steadily increasing creatin, she was evidencing kidney failure for a long time.

I totally agree with you on your suggestion to see another nephrologist. I am trying to find one in my area. My sister is 2 hours away and the town she is in has 2 dialysis clinics run by the same group.

I wasn't suprised that the doc had her stop the prozac - 2 of the other drugs he had her stop he had just prescribed. My other thought on the drugs is that considering her size, in addition to possible adverse interactions, the dosages may have been too much for her.

One last (promise!) thing - 2 weeks ago the doctor thought he heard water in her lungs so had them pull extra fluid off of her - as it turns out - no water in the lungs so they have now drawn her down 2 lbs under her dry weight (as little as that is).

Well, I've managed to use this as a rambling essay!!! Started off as just a thank you!

Disgusting... be assured her Neph is charging monthly for services not rendered. There are a thousand possible effects and interactions from the list of drugs you provide. Also, she could be receiving IV drugs during treatment that you are'nt aware of. Iron and Vit D, Epo. and changes in system treatment, maintainance, re-use, really a thousand possible effects. If your unit operator allows a patient to go eleven months without seeeing a doctor they're probably in violation of operating procedures. I would highly suggest that you call the National Kidney Foundation, report all you know. I suggest that you read every entry you can on this web site, it will list the possible problems with the situation you describe. Find the drug interaction website by search engine. I can't remember the name. You have a critical problem.

Thank you m micone. Having stopped the 4 drugs, she is improving, thankfully. And I plan to go through this website as suggested and look for "clues" - I think I'll tell medicare that the doctor charges need to be paid to all that have actually helped - patients and others on this board!

At present we are pushing for amino acid therapy. An article on the Johns Hopkins website is very promising. A Dr. Walser states "Nutritional interventions are desperately needed" . . .

Thank you and all who have helped guide me and my sister - without this help we were getting nowhere- the doctor's never in and when he is he's disinterested!

Hi Wendy, You were right on the first count; the doctor is never in (even when he's in lol). Really, and I know how hard this can be, tell Jill to get a new neph. asap. If she can't locate one that is in her ins./hmo/network call them and explain what has been happening. They won't want that neph. in their network if he's so bad. Jill has lost a lot of weight, and now they are taking her way below dry weight. When one's electrolites get out of whack it is very serious, not a laughing matter. Get a second opinion! Say hi to Jill. Lin.

Thanks Lin - You're "everywhere"!!! I love "bumping" into you....

Jill's computer has been acting up so she hasn't be on line but is itching (not because of phosphorus!) to get back to posting. You're posting has given me an opportunity to THANK YOU THANK YOU THANK YOU (and from Jill also) - she downloaded the Johns Hopkins article on amino acids and took it to the center where, by all miracles, the dietician was in! She was extremely interested, had not been contacted by the doc even though he had said would get something going 2 weeks ago. The dietician is going to research and follow up; we can hope but will probably take some continuous nagging.

So, anyone interested, thanks to Lin, the website for the info is www.hopkinsmedicine.org/press/2000/JUNE/000622.HTM (correct if I got that wrong!)

And, I agree, we have to get her out of there... I am trying to find an opening in my area, but more importantly an opening that comes with a doc that actually cares. Making some headway.

Again, thank you - you've given us hope . . .

Wendy

Well, I guess we both get "around" lol! Really though, I have noticed that different boards have a different "flavor" and knowledge to share.
I hope that you can get your sister a new neph. and a different center. I see myself that it takes teamwork to make dialysis work right.
I'm sure that all Jill is going through is really taking it's toll on her emotionally as well as physically. It's great that you are around to keep a close watch on her! Now if you could just get her to eat. Lin.