[txnmomma]

Quote:

Originally posted by bety:
Dear Pat,
I’ve spent over one-half hour trying to find the Dr. azr raza thread that you recommended, but had no success. Could you direct me to it or summarize what she wrote? I would very much appreciate your help.
All the best, bety

I believe this is link about Dr. Raza you are referring to..
https://www.mds-foundation.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004845

[txnmomma]

Bety…

My father sleeps round the clock. At times, he awakes for meals. But most of the time, he is sleeping.. morning nap..lunch..afternoon nap..dinner.. evening nap.. bed time. sleeps most of the night.

Pretty much, he sleeps alot! he started to sleep alot as the MDS progressed.

[txnmomma]

Thank you everyone who responded!! It has surely HELPED ALOT!!! More than you all think.

My father was in the hosp over the weekend. From last wednesday til today. He was taken to the ER and then admitted to ICU. He had a severe ear infection that lead to mastoiditis [bone infection behind the ear]. On top of that, he had a head injury. He banged his head really hard in the bathroom, thus causing a internal bleeding on the brain. He knew enough to know that projectile vomiting after a head injury can be potentially dangerous. He has DVT’s and is on coumadin.

So.. on top of the ear/bone infection and his head injury, he wasnt doing good at all last week. The head injury caused him to have a light stroke. He is doing much better today and the bone infection around the ear is better. The bleeding on the his brain has stopped and the fluid from the head trauma is decreasing. I was a worried little basket case thru the weekend.

Thank you ALL for the kinds words and support. It has definitely help and showed my another view point for a being a care-giver.

Neil, what you posted was well said. Something to think about from your point of view. THANK YOU VERY MUCH!

I think back to when I posted here more often, I think I need to continue. The support is just amazing and its something I miss.

Gotta go check on my kiddos right now.. More later!!

[txnmomma]

Thank you so much for posting that.. Thats something to re-read over and over again!

[txnmomma]

Quote:

Just wondering….how long does everyone here usually wait for their bmb results?

My dad just had a BMB a few days ago. His results will be ready in 1.5 weeks

[txnmomma]

I cant wait to order mine. I’ll be ordering them this week. I am excited about it.

[txnmomma]

Well I post on this site too.. hehehe :p

russellb [RUSS] is my dad and he is finally posting here. As a supporting family member to him, this site has helped me in tons of ways!!

Quote:

Is BMT/SCT an option for you?

I dont know what to speak for him.. but I believe this is an option, but not an option right now. Something to think about DOWN DOWN the road. *shrug* We’ll see what his response is..

Just to add: I am really proud of him and that he is posting here. Dealing with MDS and having some support go hand in hand..

[txnmomma]

Quote:

For any of you interested, there are also bracelets for bone marrow transplantation awareness from Rick Hendrick’s (the NASCAR guy) organization:

http://www.hmsteamstore.com/browse.cfm/2,75.html

Me and my family have these.. They are a royal blue color. I wear them all the time.

But now, I am going to order the red ones from the aplastic anemia & MDS site.

[txnmomma]

Quote:

I unfortunately am the king of clots

I didnt know you were the king..of clots. WOW!! Alot of clots..

Quote:

redness, hotness and the pain

—> thats something my dad felt at the very beginning with his first clot. Back in 2003, he never had them. He thought he injured a muscle or something. Then thought it was a bad bug bite. Seeing the red spot on his legs..

[txnmomma]

Butch.. Just thinking about you at this time. Come post with us when you want. Again, I am so sorry for your losses..

[txnmomma]

Doreen.. glad to see your post. Hang in there and stay strong. I’ll be thinking about you!!

*hugs*

Wendy

[txnmomma]

It seems alot of people are responding to Procrit…

[txnmomma]

First whats meds is he on right now?

Quote:

Is there anyone out there who has experience with blood clots in the legs? .. Anyone have any thoughts or advice ?

My dad was diagnosed with DVT’s in Oct 2003. His dr put him on Coumadin immed. They found about 3-4 clots in his legs.

The DVT’s were dx’ed first before MDS. My dad’s plt. count was ok and so the dr decided to keep him on the coumadin after dx’ing the MDS. BUT… this is the thing. He was taken off the coumadin last week. After having pnuemonia and a bronschoscopy, it was discovered he had bleeding in the lungs as a result of the coumadin. I believe my dad’s platelets were getting worse. I dont know, I could be wrong.

Anyways, he is off the COumadin, right now. His dr put a filter in his super vena cava vein. This filter will prevent any future blood clots to travel upwards into his heart or lungs causing a pulmonary embolism.

You might want to have your husband look into the filter. It’s a minor surgery. They go up thru the groin in the vein to place it there. It’s there indefinitely.

Here is some info about it.

A cardiovascular intravascular filter is an implant that is placed in the inferior vena cava for the purpose of preventing pulmonary thromboemboli (blood clots generated in the lower limbs and broken loose into the blood stream) from flowing into the right side of the heart and the pulmonary circulation

They made 2 incisions around the groin. They went up through the femoral vein in the groin. Another incision to open the vein and put the filter. The exact location of the filter is in the area of your belly button. There are 4 major veins in the body. One in each leg and one in each arm. They all connect around the belly button area to a MAJOR vein called the Super Vena Cava. This vein leads back to the lungs/ heart. Many people die from a pulmonary embolism in this Vena Cava vein. The filter was put here were all 4 veins lead to the heart/lungs. The filter is made of strong titanium/plastic combo. It’s insert thru the femoral vein in the groin and then balloned out to form an “umbrella” affect. It’s a screen [filter] to prevent blood clots going to the heart. It takes 2 weeks to heal.. and about 3-6 months for the filter to really get lodged in the vein and mend to the vein. It’s in there forever..

I hope this helps some. It may be an option given the fact that the dr has to work around the MDS. SAME exact problem with my dad!

[txnmomma]

I always thought that PNH and MDS were very similiar making it hard to diagnose which one you have.

never heard of someone having both? Did your hemo tell you .. you had both?

[txnmomma]

I know this may seem late. But thank you for posting about the notebook. Finally got my dad’s in the mail. I will be helping him “move-in” this next week. It seems like a great organizer.

Thank you!

[Author]

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