maybe someone can help me out here. June 30th i was diagnosed with leukemia via a cbc blood count. So my doctor wants me to see a hematologiest but do to my not having insurance I cannot get in to see such doctor. We are talking six months, six months with no answers. I have called american cancer society, they gave me a ton of information. I am very grateful for that...
Now I have reached out to urban ministries for the past two weeks and have yet to hear a word or a human. You can only call on Sunday between 5pm and 7pm. I have called at 4:58 and 5:05 and still no return call.
I need suggestions as to what to do next. I need ro find out what's going on. My body is full of rashes, I have a mass on my back near my neck, swollen lymph nodes throughout my shoulder/neck, my skin on my stomach area that is black and blue, my back has a rash and a huge dark area (looks like bruises) I wake in the morning with still muscles and pain full pain in my knees, back and right arm.
Is it right that I should have to wait six months?
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yapplekamp
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Yapplekamp, sorry you are having these problems. It’s not clear from your post that you have Cll (chronic lymphocytic leukemia). There are other types of leukemia than Cll that can require more urgent care. Cll might be suspected from your labs but is usually confirmed by a test called flow cytometry.
Cll is not like other cancers where catching it early is critical. Many people do not treat until years after their diagnosis. Some just have annual check ups.
But with other types of leukemia, early detection is very important. Even if you have Cll, with all your symptoms you should be entitled to a work up now in my non medical opinion. So yes, I think you should see a doctor now.
Maybe if you share the area in which you live someone on here can point you to resources that might be available to help.
There are a half dozen or so types of leukemia and some require more urgent treatment than others. You are on a cll site now for those with chronic lymphocytic leukemia, a type of leukemia that often requires less urgent attention.
Can you ask the doctor who told you that you have leukemia, what type that you have? If he doesn't know, can you ask that he order a test to find out which kind? Usually that is a flow cytometry test done on a blood sample.
If you can get an understanding general practitioner to at least order a test to see what leukemia you have, if he or she find out its an acute type of leukemia they might help get you into see someone earlier.
Another thought is maybe go to an emergency room and tell them you feel bad, have leukemia and cant find out what type. That's not an ideal choice with covid out there, but I hate to see you wait 6 months to see a doctor when its possible you need acute care.
The doctors office (hematologiest) is that booked up. And no. Even if I sign up for Obama care it would go into effect until January 1st. I have however applied for ssi, hopefully I can approved fir that sooner rather than later
My neighbor has blood condition just diagnosed and I sent him to my hematologist. He got an appt in 2 weeks. Maybe you can try a different hematologist. 🤷
i assume you've been told you must wait for Obamacare open enrollment period. I think there are exceptions, you need to consult an Obamacare specialist in enrollment
I have..our state only allows exceptions if you are pregnant or if you just lost your job and or medical insurance. Unfortunately I don't qualify, last job was only a month+ then covid set in.
You said you called American cancer society, so I am assuming you are in the US.
you'd have a chance at better info by joining a facebook group= chronic leukemia survivors or cll support group. The people there are mostly usa. the people here are mostly from other parts of the world
Actually, I suspect we have a higher number of members from the USA than any other CLL support group.
yapplekamp , as previously mentioned, I recommend you approach the CLL Society about your elegibility for the Expert Access program, for free access to a CLL Specialist.
Leukemia cannot be diagnosed using a CBC. The CBC might have counts out of range that indicate that more testing is needed (high WBC for example). We're other tests done besides the CBC?
The flow cytometry test that cajunjeff listed is a blood test used to confirm diagnosis of CLL. other types of leukemia may require additional testing. Blessings
As MsLockYourPosts points out a CBC test will only show that white blood cell count is not right . You need further tests to confirm Leukaemia . With all the symptoms you are describing I’d go straight to your nearest hospital ED where there is a good Haematology Dept . So sorry you are so unwell and cannot get the attention you need . In my own experience you have to be pushy and be really proactive . Posting here for advice is a good start . Keep us posted Yapplekamp .
Yes it is too long with your symptoms.
Unfortunately, the symptom of no insurance in America, explains the advice of the doctor you saw.
OPTIONS:
Normally, I would advise going to the County hospital Emergency Room to be evaluated. With COVID and your symptoms, I can't recommend that. However...
1. The County hospital Social Services Dept. Call them and ask how to sign up for any health services your county may offer. Also, inquire about Medicaid. I know Medicaid is State run and hospital Social Services deal with people with no insurance frequently, so they know of many options to help you.
Ask them about making a safe visit to the ER, too.
2. All hospitals have Social Services, so don't stop with the County hospital if you're still stuck.
3. Sign up for the Affordable Care Act. It's intended purpose is for those in exactly your position.
4. If you're old enough for Social Security,
then you should qualify for Medicare. Medicare sign-up is done through Social Security agency. Medicare Part A is free, but that only covers hospitalizations.
Do you have a partner, best friend, or family to help you? Recruit help. If you have Leukemia, then you're probably fatigued and lacking energy to do this on your own.
it would help to know where you are. Is it US (and if so specifically where) or UK. In the US there are a multitude of ideas in how you can get seen and followed, but perhaps mainly in high density populated areas. I know nothing about the UK system.
Here are some resources available in your area. Like mentioned before your other options are going to the ER or apply for disability. The last will be hard because you will need medical evidence. Did you try to contact a social worker at Duke Hospital? They have a lot of options available for uninsured patients.
Please try CLLsociety.org. Maybe their 2nd opinion program will cover they special blood test that nails down the type of leukemia. I also wonder, whether your doctor, would actually have you wait six months, if he or she thought it was an emergency? You can fax your doctor a note, and ask them to please run a simple blood test. This should nail down the type of leukemia. FLOW CYTOMETRY. Google the term. Fight to get this simple test done. Pester the hematologist to simply run the test even if they cannot evaluate you. As other members here are telling you, you are flying blind until this is completed. Many people will tell you that one of the earliest lessons in being diagnosed with cancer, and leukemia also is to fight for information and to get heard. All of us have had to learn how to do this. It is disappointing that not only do you have the diagnosis, the symptoms and the worry, you have to fight to get the medical communities attention. Keep pushing. And stay away from Google when it comes to simply searching leukemia until you find out what type. God bless!
In addition to lls.org contact Lymphoma .org Both groups have terrific phone advisors who can help with all kinds of things, including financial advice. Ask specifically about Hill Burton Centers. There are 4 in North Carolina.
I feel horrible that you are in this situation, and have done a little looking into things. You may have already sought out help from the contacts I'm going to provide to you, but I hope you have not and they can point you in a good direction.
Wake County has a Department of Health with a large Service Center. This is the web link to their site: wakegov.com/humanservices/l...
and this is their contact info:
Sunnybrook
10 Sunnybrook Road
Raleigh, NC 27610
919-212-7000 (call center)
The State has a large health department with many different Service Departments and Centers. Here is their link to a page with contact phone numbers for the different service departments:
I looked through their list and this one contact might be the best from the group
Public Health
Mark Benton
919-707-5000
919-870-4829
I have a couple more thoughts, but I'm not sure if you are eligible for either of them. One is to apply for Medicaid. The other is to apply for Medicare.
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6 months post FCR and let me introduce Brewster to you all!
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