Thanks Charlie,

I can't wait to read all about your amazing journey I am sure our community will be very inspired!

Regards,

Kathy
Member Services

I'm sorry you're dealing with this. My issues are similar and there have been many blood transfusions and iron infusions since about three years post op.

After much searching I've found a hematologist who has made all the difference and is the first doc ever to be able to help me sustain acceptable results.

I'm in Washington but if you can't find someone to treat you sufficiently where you are you might want to consider making the trip. Rainier Hematology and Oncology in Puyallup with Dr. Kathleen (Ludwila) Martin. She treats these issues very seriously and has been a godsend and an eye opener for me. If you're interested I'll dig up her phone number.

disclaimer: you may have something else actually going on so unless you've got a diagnosis you might have to do some testing or provide some history. It's easy to assume what's going on when you see numbers like yours but it's 100% necessary to have a hematologist *****searches all options.

Once levels get as low as yours it can take many treatments to get them up to or near normal.

Blood transfusions certainly can make a person feel better soon afterward. Handle it now and push for what you need. My last transfusion was five units. Yep. 5. Dr. Martin had me tracked down in the grocery store. That's how pro-active she is, and how dedicated. I hung out in the ICU for a couple of days.

You don't want to get yourself into that situation just because no one is paying attention. Any readings under eight should get you sent to the ER asap - a "normal" healthy adult should have between 10 and 12 units.

Good luck and stay the course. It can suck for awhile but it can get better. It can even get "normal" believe it or not.

Sorry I have the same issue. My levels keep changing because Im trying to adjust with dosage and brand....because I get constipation. But next month I will get another reading to see my new levels

I finally found an internist who was willing to work with me on labs. It was a matter of interviewing them and explaining exactly what I needed. He was great. He doesn't necessarily understand the DS - but he understands malabsorption - I think he's had a few RNY patients, but I'm his first DSer.

Explain to them that it's similar to a distal RNY (RNY with the most malabsorption).

I'm in northern Virginia, so not sure you're willing to come to Reston (or if he's even taking new patients). His name is Michael Valenti.