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  #1  
Old Mon Oct 8, 2012, 07:50 PM
Kassandrans Kassandrans is offline
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Join Date: Oct 2012
Location: Los Angeles, CA
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Question New member--at the end of my rope

Hello everyone,

I was diagnosed in January with AA. I'm 22 and have been having severe anemia problems since I was 14 years old.

I have also dealt with chronic, late-stage Lyme Disease that required me to infuse 4 IV's a day for 2+ years. I just recently had my port taken out because it moved into my heart and was causing problems.

The VERY short version of my story is: I have been to hell and back a few times. In the past few months (I've been recovering from back surgery) all of my main Doctor's have been pushing me to talk to my hematologist about a BMT.

Their reason for this is because a few years ago I had an anaphylactic reaction to ferrlecit (IV iron). I have had many blood transfusions but my current hematologist (I've been seeing him since January) said he is not willing to give me more because of the risks associated with them. Especially because I'm so young, he doesn't want me to build antibodies to the blood.

I saw my hematologist last week to set up Iron IV's (they used Infed for the first time) and he had a TOTAL change of attitude regarding my situation. He was denying that he ever diagnosed me with AA and literally got mad at me for even asking about a BMT.

My question to everyone here is: what do you do when you're SO done fighting? I honestly can't deal with this. I have been hospitalized more times than I can even remember and I was just starting to get my life back after my back surgery in May and now all of this?

Then, to add another interesting twist; on Thursday, with only 10 minutes left of my Infed IV, I went into anaphylactic shock and my throat swelled. Luckily they reacted quickly so my throat didn't close, but it was scary.

I guess I'm looking for two things: does anyone know of a really good AA specialist in the Los Angeles area? And, what do you do when you're just done? I am only 22 years old and I feel so burnt out on all of this stuff.

Thank you for reading this and I look forward to hearing from some of you!

Kassandra
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  #2  
Old Mon Oct 8, 2012, 11:57 PM
Hopeful Hopeful is offline
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Location: California, USA
Posts: 718
Hi Kassandra,

You have been through so much! You need a new doctor with a new attitude.

Dr. Paquette at UCLA is awesome. His specialty is AA and he is very active with research and clinical trials. He will motivate you to keep fighting the fight and will hopefully provide you with some clearer direction.

Best of luck!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #3  
Old Tue Oct 9, 2012, 12:30 AM
Ruth Cuadra Ruth Cuadra is offline
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Dear Kassandra,

You've told a harrowing story here. I hope that now that you've found Marrowforums you will feel supported to (1) change doctors immediately and (2) look forward to a time when you will be able to put all of this behind you. There are many survivors here (I am one of them) and many, many more living productive lives despite having a bone marrow failure disease like aplastic anemia.

Hopeful has recommended Dr. Paquette, who is indeed wonderful. His specialty is MDS, but I'm sure you'd be in good hands if UCLA is convenient to you.

My advice is to schedule an appointment to see Dr. Stephen Forman at City of Hope. He is the world's leading expert on bone marrow transplantation. If Dr. Forman is not available, see anyone on his team. All hematology cases are reviewed by Dr. Forman and his doctors. I've been a patient at City of Hope since 1996 and just celebrated the 14th anniversary of my transplant. I owe them my life and cannot recommend them highly enough for treating the whole person, not just the disease.

In any case, you need to have a new hematologist immediately. A doctor who gets mad at you cannot and should not be trusted to keep your well-being front and center. Did you ever have a bone marrow biopsy to confirm a diagnosis of aplastic anemia?

I hope that after you've read some of the threads about aplastic anemia here at Marrowforums, you'll feel encouraged to find a new path and move toward recovering your health. I'm happy to answer any questions you might have and address your considerable concerns.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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Old Wed Oct 10, 2012, 04:31 PM
Kassandrans Kassandrans is offline
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Location: Los Angeles, CA
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Ruth and Hopeful,

Thank you both so much for your replies.

It helped more than you could ever know to hear that I should get another opinion. Given my hematologist's very strange reaction to me asking more "pressing" questions, it became clear that I need a Dr who is going to take this seriously.

Thanks again!!!

Warmly,
Kassandra
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  #5  
Old Wed Oct 10, 2012, 11:02 PM
Kassandrans Kassandrans is offline
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Join Date: Oct 2012
Location: Los Angeles, CA
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Ruth,

Yes, I did have a BMB in January while in the hospital for my anemia. My current hematologist is the one who diagnosed me with the AA which is why it's so baffling to me that he's acting so strangely.
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  #6  
Old Thu Oct 11, 2012, 02:42 AM
MDSPerth MDSPerth is offline
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Kassandra, Have you been given a copy of your BMB results, if not ask for it. I am far from experienced, but the test results would most likely have the 'likely' diagnosis on?
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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  #7  
Old Thu Oct 11, 2012, 11:42 PM
Ruth Cuadra Ruth Cuadra is offline
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Glad to be of help, Kassandra. Sandi is right that you should have a copy of your BMB report. It contains a lot of technical details -- that we can help you understand, if needed -- and should help inform your next doctor about your status. Don't be surprised if a new doctor wants to perform another BMB to see what's happening with your bone marrow right now and confirm/deny the diagnosis.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #8  
Old Sun Oct 14, 2012, 03:51 AM
cathybee1 cathybee1 is offline
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Location: Fort Jones, California
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You shouldn't have to fight your doctor. In my experience, doctors sometimes act the way you describe when they are in over their head. You are lucky to live in a place with access to world class bone marrow specialists.

City of Hope and UCLA are both great hospitals and they are experienced at dealing with complicated cases and coordinating with other medical providers. We were originally scheduled to go to City of Hope but ended up seeing Dr. Paquette at UCLA. Both places have very user-friendly intake systems, which is often the most frustrating part of being a new patient, especially when you're worn out.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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