Need some information

[agonzalez]

My father was diagnosed with MDS late last year. He was hospitalized this past May due to his bc going way low. 6.7. Had 2 blood transfusions, fluid in his lungs, and fevers. My father is currently in the hospital as I type this with the same problems.

My question is for those of you that were diagnosed with MDS, was there any treatment given to help try to control the MDS from getting to the point where my father is now?

My father is going to the V.A. hospital and they weren't giving him anything because he wasn't bad enough.


Amy

[bebop]

my guess would be to try to get him into a civilian program for mds. md anderson in texas is a good one. not sure where you are but there are things that could be being done for him I would guess.

[Neil Cuadra]

Amy,

Transfusions are the fastest way to treat low blood counts, and antibiotics and other drugs can help avoid infections. These are treatments for the symptoms of MDS.

To try to stop or reverse the MDS itself requires more serious drugs, which have more serious risks. Some patients may be suitable for a transplant that can cure MDS but also carries risk. Doctors have to weigh the pro's and con's of these choices and patients and family members should participate in the discussions about it.

The immediate problem is to stabilize your father and treat his symptoms so he can get out of the hospital. bebop is right that he should see a doctor experienced with MDS. If that's not available at the VA hospital and his insurance covers treatment elsewhere in your area then you should seek out a treatment center known to have MDS experts. See the list of treatment centers for the best-known centers near you. Your profile says you are in Chicago. If your father is also in Chicago then he has several good local choices.

If you and your father haven't already gotten the free information packet from the Aplastic Anemia & MDS International Foundation, I recommend that you order them.

[agonzalez]

Hi! Bebop and Neil

Thank you for the response. My father had serious problems breathing yesterday he couldn't even talk, they gave him some breathing treatments and an oxygen mask. He does have pneumonia in one of his lungs. But the doctors were checking to see if something else was going on (bacterial or fungal infection) to cause the breathing to be that bad. He is currently on chemo pills, Hydroxurea to help lower his white cell count. But it's also causing some damage to his kidneys. My father is also diabetic. Blood transfusion was given to him Friday and yesterday. They will possibly give him another blood transfusion today depending on his test results.

I was actually thinking of trying to transfer him to another hospital as my father has gotten worse since he's been there.

Neil thank you sooo much for the list. Loyola hospital was actually one of my choices to try transfering my father too.

[Neil Cuadra]

Amy,

I don't envy you for the position you're in. With your father in a weak state with multiple health issues, you want the best care you can get, but it's also a time when moving him to another facility could be physically toughest. And you don't know if he's gotten worse due to less-than-perfect care or because one or more of his illnesses have worsened.

I hope your father's breathing will improve very soon. Please keep us posted.

[slip up 2]

if your Dad still has a fast heart rate, what I know now, ask them to check his blood for anti-bodies, we were in a similar fix last December.

[Bob Macfarlane]

Did your dad by any chance serve in Vietnam?

If you are having any problems with your dad's treatment at the VA hospital send an email to Secretary Eric Shinseki eric.shinseki@va.gov and request his help.

[agonzalez]

Hello everyone,

I hope all of you are doing well.

My dad has been out of the hospital for about a week now. Thank God! He seems to be doing ok. They had him on Hydroxurea but was recently taken off because his white cells went to low. He is scheduled for blood work July 27 or 28th. My heart breaks that my father is going through this as well as for anyone else going through the same thing. He gets really depressed when he gets sick and has to be hospitalized. But I do keep reassuring him that things will get better once they get it under control.




@Bob

How are you Bob? Yes, my father was in Vietnam. You probably don't remember me, but awhile back you sent me some information for him. He did fill out some papers regarding the Agent Orange being linked to MDS as you requested.

[Bob Macfarlane]

Amy in Chicago. I assume you got the CD but I forgot to put you on my email list for updates. Will take care of that right now. You do visit the Agent Orange forum don't you?

[agonzalez]

Hi! Bob

I hope you are doing well. My dad sends his Hello's and Thank you's. Actually I haven't visited the Agent Orange forum in a while but will do so regularly. My dad is doing ok. He has an appt. to check his blood work again tomorrow. So I pray everything goes well. Right before he got out of the hospital he was told his kidney function has decreased. Every time he does get hospitalized he always has problems with his lungs. He was taken off the chemo pills because his wbc went too low. But his rbc has been ok.

Thank you for emailing me all that information. God Bless!



Amy