Having trouble getting out the word

[IPH NET]

For those that recieved my email about this board, welcome.

For those that didn't, which was a larger number due to Hotmail's ineptness, if you have a group that discusses IPH, please let them know about this site. I am having problems with Hotmail at this time, so bear with me. And if you stumble onto this place, get the word out!
I want this message board to be for YOU, the IPH community. I just put it up. You make it happen.

Regards,

IPH-NET

[Miriam]

Hello,

I just heard about the site today. My daughter is almost nine and was diagnosed with IPH in 2006. We live just outside Dublin in Ireland. It's great to have the site.

Miriam

[jabalcuza]

HOLA,
Yo acabo de descubriros, tengo 45 años, vivo en Málaga, España, y aunque me la diagnosticaron en 1985, se que la tengo desde que nací. Gracias por haber creado el foro, la página y todo lo que tenga que ver con esta enfermedad tan desconocida

[Ada Baranello]

Hi My name is Ada. I am a 31 year old female and live in Miami, FL, USA. I was diagnosed when I was 6 years old. It has been a tough struggle since I have had some scary close calls but I have made it through. Lately though I have noticed that the fatigue I have is almost taking over my life. Does any one out there suffer from this as well? I am lucky that I have not been hospitalized for having an episode in a long time, but I definitely feel more short of breath lately. Recently my doctor told me that due to all the bleeding I have fibrosis as well, which was expected. I can give a lot of information to any parents out there who have young children who have been diagnosed. I hope the information I can offer will help and in turn anyone out there who is my age or older living with IPH, if you can please share how you are doing.
Thank you.
Ada

[jabalcuza]

Hola Ada:

Mi saturación en oxigeno es un poco menor que hace unos años, pero no te desalientes, haz ejercicio moderado y Podrás Lograr un poco más de Capacidad pulmonar. A mi me va bien, andar todos los dias una hora y pilates. No he creado fibrosis en todos estos años, pero si alguna bronquiestasia

[miriam]

Hi Ada,

Sorry to hear about your shortness of breath. We've been trying to set up an IPH medical network. The numbers involved so far are small however, there's a doctor from the States involved. If you'd like to send a message through the webpage messaging system I can forward the doctor's name and hospital to you.

Best of luck,

Miriam

[miriam]

Hi - I don't speak Spanish but I translated this through autmoated translator system online. So apologies for any error.

FIRST FROM Mar 15, 2010--I just find, I am 45 years old, live in Malaga, Spain, and although I was diagnosed in 1985, I have it from birth. Thanks for creating the forum, the page and everything having to do with this disease so unknown

secondly 1:54pm -- My oxygen saturation is a little lower than some years ago, but do not be discouraged, do moderate exercise and will do a little more lung capacity. A mi me va bien, walk every day an hour and pilates. I created fibrosis in all these years, but if any bronquiestasia

Best wishes to all,

Miriam

[miriam]

Dear Ada & Jabalcuza,

It is great to have people like yourselves who have IPH for many years sharing your experience with us. Jabalcuza- It's great to hear how you walk and do pilates. I was wondering Jabalcuza if you would be interested in asking your hospital consultant if he/ she would like to get involved and share experience and learning with the other consultants? If you are interested please send a message through the internal mailing system just to avoid printing names online. I'll translate this through the automated system I found online.

Es gran tener a personas como ustedes mismos que tienen IPH compartiendo durante muchos años su experiencia con nosotros. Jabalcuza- Es gran oír cómo usted anda y hace a Pilatos. ¿Yo me preguntaba Jabalcuza si usted sería interesado a preguntar a su consultor del hospital si él/ella querría meterse y compartir experiencia y aprender con los otros consultores? Si usted es interesado envía por favor un mensaje por el sistema interno de envío a evitar justo nombres impresiona en línea. Traduciré esto por el sistema automatizado que encontré en línea.

Regards,
Miriam

[miriam]

Dear All,

My little one seems to get recurrent episodes lately of chest pain. Not as bad as frank bleeds but limited in what she can do because of it. Has anyone had similar experiences?

Miriam

[jabalcuza]

Hello Miriam, I just got out of a crisis that has kept me in hospital a week, but all goes well, I have had chest pain. Occasionally, my matter, need not be followed by bleeding, but if there is a little pressure and pain, often confused with atypical pneumonia. It may be due to infection. I hope your son recovers soon and is any passenger. If you have any questions, consult. Beso. Sorry for the translation

[miriam]

Hi Jabacuza,
I hope you're feeling better. Do you go into hospital much? My daughter was diagnosed with a chronic pain syndrome. She hurt her back in a fall at Christmas and got a tiny fracture in her thoracic spine. She's had steroids for 4 years now. What treatments help you?
Keep in touch,
Miriam

Hola Jabacuza,
Espero que te sientas mejor. ¿Usted ingresa en un hospital mucho más? Mi hija fue diagnosticada con un síndrome de dolor crónico. Se lastimó la espalda en una caída en Navidad y obtuve una fractura pequeña en la espina dorsal torácica. Ella ha tenido esteroides durante 4 años. ¿Qué tratamientos ayudarle?
Manténgase en contacto,
Miriam

[jabalcuza]

Hola Miriam: GRACIAS POR interesarte Por mi Salud. Mejor Estoy Mucho, aunque parece Que La Infección Que él cogido Esta Vez ESTÁ tardando en IRSE. Sigo en casa y Ahora Mismo es mi Tratamiento de deflazacort 30 mg, Acetilcisteina, Omeprazol (PARA EL estomago) e hierro, ya Que, en Mi Ultimo income la Hemorragia FUE Algo Importante. es Mi Saturacion de 90%, Ahora Mismo, lo quelo Con Estoy de Reposo AUN. Yo no le tenido Ninguna caida, hijo de Como tu, heno Pero Veces Que Si Tengo dolor en El Pecho, Dicen Que Las hijo pulmonares Paredes, Las hemorragias Por, Que Tiene Que ya Bajar la inflamación. Dentro de ANUs Semanas, Que Seguro ya estare Mucho Mejor y Seguiré mis paseos Con pilates y el. Así Que Mucho Ánimo.

Hola Miriam, Gracias por tu interés en mi salud. Estoy mucho mejor, aunque parece haber capturado la infección que se modifica es tomarse el tiempo de salida. Todavía estoy en casa y ahora mi tratamiento es de 30 mg Deflazacort, Acetilcisteína, Omeprazol (para el estómago) y el hierro, porque en mi última entrada era algo sangrado importante. Mi saturación es del 90%, ahora mismo, así que lo que todavía estoy de enfermería. No he tenido ninguna caída, mientras su hijo, pero a veces si tengo dolor en el pecho, dicen que son las paredes de los pulmones, por el sangrado, ya que tiene para bajar la inflamación. En unas pocas semanas, voy a estar seguro mucho mejor y seguir adelante con mis viajes y pilates. Tanto el espíritu.

[miraclemom]

I joined this site today, and am very grateful to have found it. I did not know that there were so many adults who were diagnosed with this disease. When my daughter was diagnosed at age 1, I contacted the National Lung Association. The only information their counselor had for me (I would never forget her words) - "There is not any research being done on IPH due to the small number of incidents. However, you would be happy to know that the average life expectancy is now 5 years from diagnosis, and no longer 2 1/2 years. I was shattered by that information (which I now know was inaccurate". I feel so blessed to find sites like these. I am going to send this site info to another forum - Madison Foundation where concerned parents of IPH connect. Words cannot express my gratitude.

[cooper]

Dear Miraclemom,

Glad you have found us, welcome. There is a great deal of information from other parents and I also found comfort in the fact that were were so many adult survivors here living wonderful lives. It was great to actually see the proof that our kids actually can make it and be able to have full lives with families of their own. Sometimes it seems that you just live on false hope, but my child has been hospital free for 1 year now and am desperately waiting for the Aussie winter to be over.

I notice there hasn't been a lot of activity on the site recently and would love to hear updates from everybody on how we are all travelling and any new treatments / trials.

[IPH NET]

Jul 28, 2010 19:32:49 GMT -6 cooper said:

Dear Miraclemom,

Glad you have found us, welcome. There is a great deal of information from other parents and I also found comfort in the fact that were were so many adult survivors here living wonderful lives. It was great to actually see the proof that our kids actually can make it and be able to have full lives with families of their own. Sometimes it seems that you just live on false hope, but my child has been hospital free for 1 year now and am desperately waiting for the Aussie winter to be over.

I notice there hasn't been a lot of activity on the site recently and would love to hear updates from everybody on how we are all travelling and any new treatments / trials.

Just wanted to update all. I travel a lot so sometimes I don't get to update much. I want to welcome Miraclemom to the community. My daughter (almost 29 yrs old) just had a hospital stay. Her primary doc was out for the week and it was kind of a pain to explain what is going on with her I know all of you have experienced this. They went from trying to treat her from asthma to asking her how many packs of cigarettes she smoked (never in her life). Frustrating at times. This is a board for all, and please join in with anything you have to offer.

Regards,

IPH NET