Need help Finding Doctor (Schaumburg) NW Chicago

Hi,
I am here on behalf of my mother, as she isnt computer savvy. She was diagnosed with ITP back in the mid 1990's and the treatment at that time was a splenectomy. She was admitted to the hospital with an extremely low platelet count and had a bad nosebleed. She has a hx of anemia as well. We didnt know much back then (I was 10) and did not know of any other treatment available for the disorder. The doctor urged for a splenectomy and convinced my mom it was the only solution. Ever since then, she has struggled both emotionally and physically. She became educated and realized the doctors could of chosen other routes prior to deciding upon a splenectomy, which makes dealing with her issues even harder.

Fast forward to now. She has had trouble fighting infections, and has yet to be able to stabilize her blood levels. She consistently has high WBC, platelet, lymph and her labwork is generally all over the place. She has been seeing an internal medicine doctor who she has seen for 30 years, and I do not feel he is treating her condition correctly as he never acts concerned about any of her levels nor provides treatment plans.

We tried going to see a different doctor today, and instead of seeing a doctor, we only saw the resident. We drove over an hour each way to see the doctor but left without ever seeing him as he was too busy. Instead of discussing her bloodwork, the resident focused her attention on a slightly elevated blood pressure and prescribed channel blockers. This is after the fact that my mom said she was allergic to them. When we left I promised my mom I would try my best to find a doctor to help her.

This brings us back to where we are now. She is 59 years old, and really needs to find a specialist to get her blood levels back to normal as they havent really been there in 20 years. I am afraid at her age that the longer she goes without proper treatment, the greater the potential of becoming severely ill or worse.

Does anyone know a specialist in the NW Chicago area close to Schaumburg? We are looking for referrals and my mother would prefer to have someone close she can regularly visit. Thank you to everyone who helps us. I am not an expert in the medical field, and I know very little about ITP other than just reading a bit on the internet, so any help you provide is greatly appreciated.

Datek;

Hello. Are you looking for a hematologist? I don't have any suggestions but others might.

If your mom has high white counts and high platelets, there probably isn't anything that can be done to lower them. Some people have counts that are above normal on the reference range but that doesn't mean that anything is physically wrong. Do you have a copy of her numbers? What are they?

Your Mom shouldn't beat herself up over the splenectomy. Many people have gone that route knowing there were other choices. Your Mom only did what she thought she had to do. She listened to her doctor which is what we are told to do.

Hi Sandy, I will find out all her numbers and report back when I can. Thanks

I agree with Sandi that your mom shouldn't beat herself up over her splenectomy. I would add that she should not beat up her doctors for it, either. Splenectomy was the standard of care in the mid-nineties. The best alternatives we have now were not in use then. For example, Promacta and Nplate did not exist in the nineties. Rituxan did not receive FDA approval until 1997, and as of 2000 had not yet been evaluated for treatment of ITP.

darek here is the url for the ITP support group in the Chicago area - it's a good group & Trish who runs it is an ITPer. Check it out - and also on the page "Social & Contact" you can scroll down to the bottom and send a message - maybe they can help with a hematologist in the Schaumburg area.

www.chicagoitpsupport.org/


Good luck to your Mom - she's young and should be enjoying life, not worried about her WBC, platelets etc. Hope the support group will be able to help with a doctor.

Melinda wrote: darek here is the url for the ITP support group in the Chicago area - it's a good group & Trish who runs it is an ITPer. Check it out - and also on the page "Social & Contact" you can scroll down to the bottom and send a message - maybe they can help with a hematologist in the Schaumburg area.

www.chicagoitpsupport.org/


Good luck to your Mom - she's young and should be enjoying life, not worried about her WBC, platelets etc. Hope the support group will be able to help with a doctor.

Hi, thanks. She attended a meeting there last year. Unfortunately, not one person had a splenectomy and all told her they would never do it. She unfortunately cannot get past having the surgery done, and basically feels like she ruined her life and that at any moment she is going to die. I am at wits end as I keep telling her she cannot change what happened to her no matter how bad the circumstances were, that she can only control the future. All she keeps focusing on are negatives etc.

She might do better to find someone who can relate to her who has had a splenectomy. That way she can see how another person copes and overcomes it.

As an example, I offered to go in a cruise with her and she says she cannot go anyplace Tropic or where a lot of people are. She basically has herself separated if that makes sense and feels handicapped because of it. It makes the situation so stressful on the family too as well as we miss having her fun side that we haven't seen since I was young.

I'm going to mention that to Trish darek. Personally I do not like the word "never", no one ever knows what they will do until something arises - years ago before ITP I had serum sickness from an antibiotic & was put on prednisone, said I'd "never" take that awful drug again and then ITP hit and I was on it for almost 4 years.

Would your mother be open to counseling - it really sounds like she might need that. She's young, she should be living instead of hiding - she shouldn't be blaming herself for having her spleen removed.


PS - I still feel using the contact page at the Chicago Support Group to ask if there is a good hematologist in the Schaumburg area is a good idea.

I had my spleen out over 9 years ago. I am 58 and am doing well as far as not getting sick. Sorry to hear about your mom's worries.

Darek:

It would be nice if she would come on the Forum. She would find many people who have had a splenectomy and carry on with their lives. It sounds as if the splenectomy was successful for her in that her platelet counts have stayed in a good range. That is the goal and the reason for the splenectomy and if patients achieve that, they are usually pleased with the surgery. Many have failed surgeries and the counts drop afterwards. I'd say she's doing pretty good.

Sepsis is always a concern, but it seems to occur more often when people who have had failed splenectomies need to go back on immunosuppressive treatments. Maybe you can relay that to her. The only time that she really needs to worry is if her temp goes over 100, then it's time for medical intervention. She's been living like this for many years and has been okay (I assume), so chances are she will continue to be okay. Her life is far from ruined. It's a shame that she feels that way.

Thanks for all the support. I did email the Chicago itp group for a recommendation for a hematologist.

I may see her this weekend, so I will try and set up an account for her so she can talk about her feelings. I will try to show her how to get here and start a thread where she can visit and talk. She isn't too good with computers so I will simplify things for her.

I think the biggest hurdle for her has been twofold. One is she has never talked to someone who has been in the same situation as she has. It always helps to have support from someone who has experienced the same.
The second part is she has seen the same doctor for so long who isn't well versed in the itp area. So her questions are never truly answered and she always questions if she is getting treated correctly. So basically just a lack of confidence in the treatment being received.

Thanks again to everyone for their help.

If her counts have been good, she shouldn't need treated. Is there more to the story?

Hi Darek - this is an older topic, so not sure if you're still looking. But I'd suggest heading downtown to one of the teaching hospitals -- Rush (Benign Blood Disorders Center, Dr. Venugopal), U of C or Northwestern.

Also, I had my spleen out two years ago. Didn't work, but at the time it made sense as the next thing to do. So no regrets.

Hope your mom is doing better.