New: Dad has AA

[Laurie]

Hi all,

I am so glad that I found the group. My Dad was just (40 minutes ago) diagnosed with Aplastic Anemia. He is currently in the hospital (since November 21). Today he is running a very high fever and is throwing up. His platelets are 8,000 and noone can tell me what his WBC and RBC are. They aren't treating him with anything except an IV antibiotic to get his fever controlled. I am very scared!

My Dad is 68 years old and is healthy. Although, he just recently, 8 weeks ago went through a quadruple bypass surgery. Ironically, before his surgery he was complaining of weakeness, shortness of breath, etc but not any pain in his heart. We think that his heart isssues were just found because we took him in for his light headness and general fatigue. My believe is that he has had AA all along and the heart issues were found later but thankfully found!

My dad lives is Mobile, Alabama and is being treated at a hospital that I believe has no specialists in AA. This really is so much for me as I have a daughter that has a chronic liver disease called biliary atresia and she will need a liver transplant soon.

I don't think I am making much sense right now, I apologize maybe when I inhale soon, I will be more coherent.

Laurie
Florida

[jennie]

Hi Laurie,
So sorry your dad is so ill. You were very smart to find this place, tho. Also, try the AA&MDS site.
When your dad had the heart surgery, was his blood normal then?
If so, perhaps something at the time of the surgery caused this AA, and maybe he will spontaneously get better.
I surely hope so!
There are alot of knowledgeable people on the 'net who can help. contact me if you want more links!
good luck
Jennie

[Ruth Cuadra]

Welcome to Marrowforums, Laurie. You'll find that the members of this group are an excellent source of information, so please feel free to post your questions as they come up.

Our Medical Resources page lists treatment centers by state: University of Alabama, Birmingham is a primary center specializing in treatment of aplastic anemia. Click here to see the UAB information about aplastic anemia.

If you haven't already done so, I recommend contacting the Aplastic Anemia & MDS International Foundation and asking for their information packet on AA.

It does seem surprising that your Dad had heart surgery with such low blood counts. Has he had a bone marrow biopsy to confirm the diagnosis of aplastic anemia? The doctors are likely doing the right thing to try to control any infection he may have, but very shortly, they'll need to tell you what treatment(s) they recommend.

Hope this helps,
Ruth Cuadra

[Laurie]

Thanks to all of you who have replied to me so far. This is such a nerve racking time for my family. I thought that dealing with my daughter's liver disease was hard.

My Dad is still in the hospital and is receiving his cocktail of meds. Right now they are giving him Lymphocyte Anti Thymo immun Glob 3.6 mg with Sodium Chloride 1 ML drip a 1000 volume drip over 4 to 6 hours (he calls this his horse syrup), he is getting 45o MG of ATG and approximately 250mg of cyclosporine. Oh he is also on vancomycin. He has been on this cocktail for a little over 24 hours. His labs look horrible!

Here are his labs:

WBC 0.4
RBC 2.40
HGB 7.4
HCT 20.9
Platelet 2,000
Lymphocyte 88.0
CO2 18
BUN 32
Glucose 137
GOT 6
SGPT 29
Calcuim 6.4
Magnesium 1.3
Protein 4.6
Albumin 2.2

These are all of his abnormal labs. His platelets are extremely low as is he WBC. WE don't know what do, where to turn, what questions to ask. We are doing some direct donations of blood (0+), the entire family has the same blood type. We are starting that blood drive on Monday.

What I need is help. Help with what questions to ask. Is my Dad getting the right types of meds with the correct dosages? What else can my family do. We are told he is not a candidate for a marrow transplant because of his age. WE want to move him to a better hospital but he is so weak, and where to do we move him. He lives in Alabama, our family is in Alabama and Florida. We could use some serious help!

Please email me at laurie@cfl.rr.com. Or call me I need to know something do something...I will give you my number when I receive your email. Just put in "Marrow" in the subject line of the email.

I started a caringbridge page for my dad you can view it here:

Roy's Page

Thanks in advance for your help.

Laurie

[Lisa V]

Laurie, those are low counts, but they're not that unusual for SAA. Plenty of people have come back from worse counts than that, and the body also has a remarkable ability to adapt to lower counts over time.

If they're giving him ATG they must have done a BMB (bone marrow biopsy) to confirm AA. Are they also transfusing him? The usual target number for platelet transfusions is 10k or below, and for RBC it's Hgb of 8.0 or lower, so it sounds like he could use some of both ASAP. ATG is hard on platelets, so it's not unusual that his Plt count would drop during the treatment. My husband has had 2 ATGs and during his last one he was getting almost daily Plt txs. Once the ATG was over it didn't drop nearly so quickly and once the ATG started to kick in they started coming up again, but it can take a while to see a response.

The vancomycin is for a fungal infection, possibly Clostridium or something like that. Do you know what his ANC (absolute neutrophil count) is? Neutrophils are the infection-fighting WBCs. This may be listed on the CBC as 2 separate figures: segmented neutrophils and bands, which added together give the ANC. Or sometimes it's given as a percentage that you multiply with the overall WBC to get the ANC. An ANC of less than 0.5 is considered severe neutropenia, and may necessitate strong protective measures such as not eating any unpeeled fruits or vegetables, wearing a face mask, avoiding physical contact with other people, etc. I'm guessing that with an overall WBC of 0.4 his ANC is going to be pretty low. Has anyone discussed giving him Neupogen or some other form of G-CSF shots? This can help him boost his neutrophil production. WBCs are not routinely transfused the way RBCs and Plts are, because they are extremely short-lived. It can be done in emergencies, but G-CSF (granulocyte-colony stimulating factor) shots are more often used.

I know this is all very overwhelming, but many of us have been there, or our loved ones have, and there is hope! Please feel free to ask any questions that come to mind. We don't all have the option of going to a hospital with an AA specialist. If you can, then do it, but if you can't, then the best thing you can do is learn as much as possible about the disease and become an active participant in your father's care. Ask the doctors hard questions (without being combative) and keep them on their toes. Patients who are proactive in their own treatment, or who have a family member or friend who can act as their advocate, will recieve the best care.

For what it's worth, ATG is the most generally accepted course of treatment for people over age 40, or younger patients without a good match, so it sounds as though he's on his way. It can take months to kick in though, so try to be patient.

[Laurie]

First, thanks to all who have responded to my posts.

I wanted to let you all know that right now the docs are saying that my Dad is not responding to treatment. He was home for a couple of days and then returned to the hospital. He has no use of his legs, cannot walk. He complains of headaches. The did a CT scan to see if he had bleeding on the brain, that was okay nothing showed. He received irradiated platelets last night and right now his platelets are at 21,000. The docs say his prognosis is grim, 40% survival is what they are giving us.

I live 8 hours a way and I feel so helpless, my sister's are trying to do their best at asking questions, demanding tests but we are just learning about this disease and aren't even sure we are doing, saying the right things.

Please respond. Give me an idea of what I need to do for my Dad, I don't like the 40% survival. He is newly diagnosed only 3 weeks from initial diagnosis. I suspect he may have PNH as well. We are going to approach his doctors about having him tested for that. What is the treatment for PNH? What can we do to increase Dad's odds for survival?

Laurie

[skoopman]

Laurie,
The first I want to say is it is too soon to worry. It usually takes at least a month, usually longer, to see any response from ATG. Having said that, if your dad's dr's don't know that, then they obviously have no experience what-so-ever with AA and I would highly encourage you to get him in to a dr who knows that they are talking about. The AA-MDS foundation should be able to get you a list of dr's in your area.

No use of his legs is worrisome I am sure, as are the headaches. Is he on steroids or was he for the ATG? When my daughter had ATG her steroids were stopped too soon (about 10 days post ATG) and she developed serum sickness from the ATG. It consisted of headaches and severe muscle aches, to the point that she wouldn't walk because it hurt too much. We had to carry her to the bathroom until physical therapy made her walk. It was not fun at all. They started her back on prednisone and she got better fairly quickly (within a week or two).

Good luck!
Suzanne
mom to Michelle, age 6, SAA 6-1-05, BMT 11-11-05

[Wendy Beltrami]

Hi Laurie,

Another thought on your dad's headaches may be the cyclosporine level. I assume they are giving him cyclosporine? Are they checking the levels? It is sort of erratic at first trying to get a stable level, but if his levels are too high, a headache may be a symptom.

Also, I think I understood you to say that family members are donating blood directly to your dad. Is that what you meant? Usually that is not recommended and you might want to have your doctor verify that with the AAMDS foundation.

Wendy/mom to Grant
dx 12/4/98 AA

[Lisa V]

Laurie, I just want to echo what the others have said, that 3 weeks is much to soon to say if he's responding or not. It can take months to see a response. It is a slow process, and that is the hardest part of this illness, but we've all had to learn to wait and be patient. If you don't see ANY kind of change after 6 months, then it's time to say that it's probably not working.

I don't know where they got that 40% figure, it sounds like something they pulled out of a hat. The usual figure you hear for ATG is 70-80% response. That is not for complete remission, mind you, that is just improvement to the point of not needing transfusions, but that may really be all that's necessary in order to live a normal life. If they're giving you lower odds, I'd ask them what that is based on. Does it have something to do with his recent heart surgery or his age? Don't let them intimidate you with numbers without backing it up with some evidence.

[Laurie]

I wanted to let all of you know that my Dad passed away Friday, December 29. He fought the AA battle hard but was ultimately defeated by Sepsis. I am going to miss him tremendously. The doctors have made several mistakes in treating my Dad and we are talking to some attorney about a law suit. I feel extremely guilty about not pushing my Dad more to get treated at another hospital. We know that nothing we do will bring my Dad back but we can certainly make the doctors think twice before they treat another AA patient.

Thank you all of your help and advice, it was certainly appreciated.

Laurie
Roy's Story

[Ruth Cuadra]

Laurie,

I'm so sorry for loss of your father so soon after his diagnosis of AA. It does sound as though he fought a good battle. What a lucky man he was to have you searching for help on his behalf. I hope your memories of him in better times will be a comfort to you now.

Sincerely,
Ruth Cuadra