All Blog Posts (115)

its been awhile

hey everyone. its been awhile since i have been on. well my lil one is doing good. he has givin himself his first mouth bleed and he has already had his first surgery. Get a hold of me. Later Esther
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Added by Esther on March 10, 2010 at 10:08pm — 2 Comments

New Hemophilia Book

There has been a new book published about women and hemophilia. You can buy it on Amazon, the name is Pooling Blood by Cheryl D'Ambrosio. You can also check out her non-profit at www.mygirlsblood.com . Continue

Added by Tammy Davenport on March 8, 2010 at 3:53pm — 1 Comment

New Port Placement

I had a power port placed day before yesterday. Although I work as a Licensed Practical Nurse, I didn't realize that my recovery would be this extensive after getting my port placed. Still experiencing a lot of pain. There was some external bleeding during the procedure and some internal bleeding afterwards. I have a lot of bruising. I know having a port will make my life a lot easier though. I began a prophylactic regimen today and will be infusing 3 times per week from now on. I've used the po… Continue

Added by Ryan Rotenberry on March 7, 2010 at 4:36pm — 4 Comments

Hemophiliac New to this site

Hi! I'm 41 years old and was born with Hemophilia A. My maternal grandfather had Hemophilia. I'm the youngest of 4 children. My oldest brother was 16 years older than me and was born with Hemophilia. My other brother is 12 years older than me and was not born with Hemophilia. I have a sister who is 6 years older than me. I have an older male cousin with Hemophilia and two other male cousins who do not have Hemophilia.

My oldest brother, like me, had severe Hemophilia. He con

… Continue

Added by Ryan Rotenberry on March 6, 2010 at 11:30pm — No Comments

College student new to site

I just learned about this site from the new hemaware.org site and I wanted to check it out. Quick bio about myself - I'm currently a freshman at UC Berkeley studying Molecular and Cell Biology, and one of my main off-campus projects this year is being a team captain for the Hemophilia Walk in Berkeley, CA on April 17th. Though I haven't been a team captain before, the process seems to be going pretty well so far, though recruiting walk members has proven slightly more difficult than I had antici… Continue

Added by Grant Hiura on March 4, 2010 at 6:24pm — No Comments

Stressed out!

Well the past month has been pretty hectic. Farrah and I brought Hayze to Edmonton on February 2nd to get his Port put in. We spent over 2 weeks there. The surgery went well, Hayze was up and running around the day after. The Hemo nurses trained us how to infuse Hayze as well, which also went well. We feel confident and more secure now that we have this knowledge. We started his prophylaxis once we got home. Everything went well the first 3 infusions, but last friday we could not get any blood r… Continue

Added by Brandon Freund on February 28, 2010 at 12:13pm — 2 Comments

HEMOPHILIA MOM NEW TO THE SITE

Hi everyone im a mother of four kids three step daughters and one boy and my boy has hemophilia a and ADHD its been a struggle from day one not known what to do what this whole illness thing and Im glad ive found many people especially on facebook whom are dealing with the same issues as me . Finding work outside the home is insane its cannot be done period for me anyways ive been turn down by too many jobs outside the home and many people refuse to babysit my child while a work . So I started a… Continue

Added by HEMOMAMA on February 26, 2010 at 2:59am — 1 Comment

How do I get Financial Help for my son

Hello I do not think I know any of you but I have come to my last idea of how to get help for my son Tim. Tim is 31 and on the last leg of his journey of life, we have lost our house they will be taking it it jung and I do not know what to do please help me. Tim wants to live on the reservation in washington they are oking the land now we need to leveal the land get a mobile home on it and contect the lines for elec and plumming, who do I go to who can or will help Tim and his wife, I do NOT hav… Continue

Added by Nora ledesma on February 17, 2010 at 6:32pm — 7 Comments

Fist post - Feb. 10, 2010

I am an adult (66 yrs old) with moderate hemophilia A (about 5% factor VIII). About a year ago I was diagnosed with an active inhibitor. So far the inhibitor does not affect my natural Factor VIII, but does affect infused Factor VIII. I use factors occasionally, usually when I've been careless and hurt myself or with surgery, dental or otherwise. I've only used Factor VII (NovoSeven) once in the last year.
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Added by Pete Wells on February 10, 2010 at 11:38pm — No Comments

Boy Scouts?

I have an awesome almost 4 yr old boy with severe hemophilia A. I am really wanting to have him in Boyscoutsas he grows and am looking into Tiger cubs for when he turns 6. Are there anyother men/boys here that have been active with boyscouts as they were growing up?

He will be our first little boy scout so I am looking to get all info about it as I can and to see if hemophilia has caused any problems in relation to this program.

THanks!

Kendra

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Added by Baby T's Mom~ Kendra on February 9, 2010 at 5:59pm — 2 Comments

medical bills

My son was diagnosed Hem A in October. I am wondering how to pay off these hospital bills already. We were almost at our maximum out of pocket just sept- dec. Now the new year they are starting all over again. I don't think they can be paid off within this year.

Any suggestions? Has anybody done any fundraisers that worked well?

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Added by Tina Olson on February 8, 2010 at 1:14am — 2 Comments

Texas Hold'em Poker Tournament Fundraiser!

Hi everyone, I have scheduled a Texas Hold'em Poker Tournament for April 17th at the Elk's Lodge in Kokomo, Indiana. $25 of every ticket sold goes to the Hemophilia of Indiana! I'm giving you all plenty of warning in case you want to have a road trip and join us. :) We're limiting this tournament to 100 people, so the winning pot will be a nice amount! Here is the link for more information... http://ko… Continue

Added by Anna Landseadel on February 1, 2010 at 5:02pm — No Comments

had our first scare

Well me and Farrah had our first scare with our 14 month old son Hayze last night. He is not yet on prophy. Our appointment to get his Port isnt until march 2nd. Anyways, last night he fell and bit his tongue pretty good. Blood oozed for a minute or so, but clotted normally. We couldnt believe it. It completely stopped bleeding and we were able to see the spilt at the tip of his tongue. We were relieved of course, until this morning. Farrah woke up after i went to work and she noticed a pool of… Continue

Added by Brandon Freund on January 29, 2010 at 2:00pm — 6 Comments

To Prophy or not to Prophy

My son Evan was diagnosed with Hem. A about 1.5% in Oct. 09. He just turned 3 in Nov. He had ankle bleeds twice in both ankles, before the diagnosis. The urgent care told us they were sprains and splinted, cast, and walking boots. It took a long time for the last left ankle to heal, which led to the Hem. diagnosis. Then in Nov. he got another bleed in the right ankle (which hadn't bled sinceApril, 7mo.) He got his 1st factor dose and the swellling subsided in 3 days or so. Then in mid Dec. it s… Continue

Added by Tina Olson on January 24, 2010 at 7:53pm — 6 Comments

Haitian Orphans

My heart goes out to the people of Haiti. I can't imagine the fear and devastation. I came on here to see if there were any Hemophilia children in need of a home due to the crisis, but from reading another blog, I guess they don't have a way to track them. :( My prayers are with the community. Continue

Added by Anna Landseadel on January 20, 2010 at 3:39pm — No Comments

A little help goes along way Won't you Help! " Some of our own Needs Help Too"

Brian is still fighting his battle to get well from a blood infection , He will be in the hospital for some time andwill be undergoing several bone surgeries. We are glad to report that since he has gotten to see his son he has found out that Tristans mom's boyfriend Ryan Bateman...,Tistan likes him and says he is very good to him and Taylor, Brian is encouraged that they will all be able to get past all the drama from some bad rumors, and get on with everyone working together for Tristan. This… Continue

Added by rose m herren on January 19, 2010 at 8:15pm — No Comments

Did You Know?

My son Christopher got a bleed last month in his arm. Want to know the cause? Video games! Can you believe that? He is an avid game player and has been known to spend hours playing on the XBox 360. He's only 6 but has beaten three different Halo video games, as well as a few others. Well he came to me last month complaining that his arm was really hurting him. I couldn't "see" a problem with it, it wasn't bulging or red or anything. The only symptom he had was he "felt" the pain. When Chris is… Continue

Added by Anna Landseadel on January 13, 2010 at 10:56am — 2 Comments

Merry Christmas & Happy New Year

Brothers & Sisters, I hope everyone had a very Merry Christmas & safe Happy New Year, I apologize for not being on lately but we have been busy touring and mourning the loss of our dear friend Hank Strutt and his 3 boys. We are getting ready to go to Europe with our friends Metallica here is the tour schedule; I hope that 2010 is better for all of us than 2009. 01/19/2010 Lima, Peru Estadio San Marcos Buy Tickets 01/21/2010 Buenos Aires, Argentina River Plate Stadium Buy Tickets 01/22/… Continue

Added by Craig Austin on January 2, 2010 at 3:16pm — No Comments

Early Christmas Present

Well it's been an early start to the Christmas season. My friend from down south moved up here with me to battle for custody of his son. He won some pretty big decisions over the past couple of days. I'll give you a summary. First his ex wife filed for a protection from abuse order while he was living in Texas. This is such a good law, but it's abused by so many people because they try to use it as leverage during divorce or custody, it's really a shame because it only hurts the people who reall… Continue

Added by Steve on December 24, 2009 at 1:31pm — 2 Comments

FTB loses their drummer

To the fans & friends of Fade To Black, On Thanksgiving evening Hank Strutt,Matthew Strutt(10) Alex Reeves(14) & Paul Reeves(13) were all killed while enroute to see Fade To Black in Toronto, Hank left the band earlier this year to return to his job with the F.B.I. Glenn Patterson replaced his mentor & Teacher. The Bands new cd World On Fire has been released in Fla if anyone would like a copy please email here or contact me on FaceBook. The Band is currently touring in Hank's memor… Continue

Added by Josh Valance on December 10, 2009 at 5:52pm — 5 Comments

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a davis is now a member of mybloodbrothers

Welcome Them!

10 minutes ago

Esther commented on Esther's blog post 'its been awhile'

i wont b a stranger now that we have the internet back.

52 minutes ago

Ryan Rotenberry commented on Ryan Rotenberry's blog post 'New Port Placement'

Hey Armando, The only difference is that a power port, when used with a special access needle, can accommodate power infusions with contrast, like a CT scan or MRI. UVA Medical Center, where I'm followed, just happens to use those when placing port…

3 hours ago

R. Louise Cobb replied to Martin Zidek's discussion 'Pilot's license'

Originally, having hemophilia did disqualify you from getting a pilot's license. That was changed in the 1970s when a commercial pilot with severe hemophilia challenged the FAA in court on this ruling and won. He had been flying for several years an…

4 hours ago

Armando Serrano commented on Ryan Rotenberry's blog post 'New Port Placement'

Ryan: I have a question for you: Whats the difference with a power port and a regular port? Are they the same or different? Also, did your hemotologist gave you the option of an AV Vistula? I was just wondering. I was only going to ask you a questi…

4 hours ago

Armando Serrano commented on Tammy Davenport's blog post 'New Hemophilia Book'

Thanks for the information. I'll look into it. Thanks.

5 hours ago

Armando Serrano commented on Esther's blog post 'its been awhile'

thanks for updating us on your sons health. hope everything is well overall. take care esther and do not be a stranger to mbb.

5 hours ago

JASON CAMPAGNA JR is now friends with Brian Herren and Brandon Freund

9 hours ago

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Raising our child in the middle of bruises and visits to the center… Educando nosso filho entre um sangramento e visita ao ambulatório…

As parents we know that our children will have to face the days at school, later college, first job, first love… it’s an endless list of happenings, of events that we can’t control. But what we can do is to transform an event into a SIGNIFICANT EXPERIENCE. If you change the idea you have about your [...]

With eyes closed ;)!Body language / Consciência corporal: sentir os pezinhos pisando firme

SINCE BRUNO’S first visit 2 years and a half ago at our Hemophilia Center, I had participated with the young parents in the process of raising their first child with severe hemophilia A. Prevention of over protection, early self awareness, talking to the child even when very little about how to climb and getting down of [...]

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Your Child Has Hemophlia!

I will never forget the day those words were spoken to me! All three times!

I have three sons with severe hemophilia A. With no family history this was quite A shock to us! Our HTC provided us with a wealth of information. We also found wonderful resources at our local hemophilia chapter as well as the National Hemophilia Foundation. One thing that helped me was being able to talk to other moms who had kids with hemophilia. However 26 years ago that was a bit of a challenge! I am thrilled to be part of Hemophilia Moms so I can share my experiences with all of you!

I was so frustrated all those years ago when no one could answer a question that I felt was pretty straight forwar. " How big is a bruise before it is a bleed?" I always got the same answer..."you will know!" Now how was I going to know? I had never seen a "bleed"! I barely knew what hemophilia was! However, when my son had his first bleed....I knew it! When he had his first spontanious bleed....I knew! As mothers we need to trust ourselves. Take advatage of all the resources that are available! Twenty six years ago I would have loved to be able to talk to other moms in my shoes with the click of a mouse!

How did you feel when your son was diagnoised? How did you know your child had a bleed?

Make it a great day!
Lori

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