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Post by cooper on Feb 8, 2010 17:09:37 GMT -6
To Cooper, Should have said- hope you little one's birthday went well Miriam Many thanks Miriam, Oliver's birthday went great and he has now started school and loving it. Hope your daughter is still going well  |
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Post by miriam on Feb 10, 2010 12:28:25 GMT -6
Hi Dorte,
How's your little girl doing?
Miriam
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Post by Nichole on Feb 11, 2010 22:33:58 GMT -6
First I would like to say thanks to all of you who are sharing your stories, I know it can be a relief to at least be able to speak with people who are in similar situations. I am 28 years old, and when I was diagnosed there was no search engines for my parents to go to. A lot of the information on the internet about IPH prior to this year was very disheartening, I am very pleased to see that there seems to be a shift in that information, and that is all thanks to all of your communication. This disease can be very overwhelming, for the patient and their families. I had my share of ups and downs, I have had my share of hospitalizations, intubations, bronchoscopies, lung biopsies, heart caths and many blood transfusions. The good news is that in my adult life the hemorrhages have limited themselves to less than half a dozen MINOR bleeds per year, and maybe once a year I might have stay in bed for a couple of days. I would consider myself as healthy as any other 28 year old. I have two very healthy children, they show me on a daily basis how strong their lungs are ( SCREAMING IN THE BACKGROUND). I have a few minor side affects from living with the disease for so long, I have some pain in the areas that were affected the most during the bleeds, and I still get anemia from time to time, not at the level of transfusion. Other than that I feel great and am living a normal adult life. If you have any questions please feel free to ask, I will be glad to answer anything you have to ask.
Thanks
Nichole - Diagnosed around 1985
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Post by miriam on Feb 15, 2010 15:33:11 GMT -6
Dear All,
Like many of you, I am conscious that IPH is so rare. Thanks to IPH Net setting up this page, there are now a few of us in contact internationally.
My thought was that if, with the various doctor's consent, we made a list of the various doctors and contact addresses and gave them to the others, that the shared learning may be helpful and ultimately beneficial for the children.
If anyone is happy to ask their respective doctor if they, the doctors are happy to forward their work contact details so that we can put them in contact with other doctors treating IPH, it'd be great. It's probably best not to put their names up on the page, but if people are ok with emailing back to me through the members messaging system, I'll do up the list.
My only aim to facilitate contact between the doctors. Given the rarity of IPH, I personally think it's best just to put the doctors in contact with one another, if they're agreeable, and leave them to communicate among themselves. Patient confidentiality's very important.
Regards,
Miriam
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Post by miriam on Feb 15, 2010 15:35:41 GMT -6
Dear All, - JUST CORRECTING TYPO, SHOULD HAVE READ OTHER DOCTORS
Like many of you, I am conscious that IPH is so rare. Thanks to IPH Net setting up this page, there are now a few of us in contact internationally.
My thought was that if, with the various doctor's consent, we made a list of the various doctors and contact addresses and gave them to the OTHER DOCTORS that the shared learning may be helpful and ultimately beneficial for the children.
If anyone is happy to ask their respective doctor if they, the doctors are happy to forward their work contact details so that we can put them in contact with other doctors treating IPH, it'd be great. It's probably best not to put their names up on the page, but if people are ok with emailing back to me through the members messaging system, I'll do up the list.
My only aim to facilitate contact between the doctors. Given the rarity of IPH, I personally think it's best just to put the doctors in contact with one another, if they're agreeable, and leave them to communicate among themselves. Patient confidentiality's very important.
Regards,
Miriam
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Post by cooper on Feb 15, 2010 17:11:10 GMT -6
Good job Miriam, we are in clinic next Wednesday so I will double check that she is okay with being on the bigger list but I am sure there will be no problem. Hope you daughter in well.
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Post by miriam on Feb 25, 2010 16:10:33 GMT -6
I'm waiting for replies from a few doctors and we're back in clinic Monday week and I'll talk to our own consultant then about the IPH network.
Fingers crossed. Thanks to everyone for their help so far.
Miriam
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Post by miriam on Mar 2, 2010 15:47:08 GMT -6
We've had replies from a few doctors, it takes time but that's ok hopefully we'll get more and that the network will work out.
Fingers crossed
Miriam
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Post by cooper on Mar 18, 2010 17:39:14 GMT -6
Hello all,
I thought I would give you a quick update on my son. He has been on 6MP for 7 months now and it has been 7 months since his last hospitalization (which is remarkable). We are now classed as being "undercontrol and stable" which we never believed was possible after all the medications what we have trialled. He is very happy and healthy with O2 sats sitting in the high 90's and Hb maintained in the 120's. He is managing thought colds and chest infections without needing anything other than occasional oxygen. Whilst we are unsure whether this change is because of his age (5) or the medication, things seem to be looking up. Our fingers are always crossed for this to continue and for everybody living with IPH.
Best wishes to you all,
Cooper
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Post by miriam on Mar 19, 2010 17:28:16 GMT -6
Dear Cooper,
Great to hear that your little one's doing well. Long may it continue.
We've had replies from 3 doctors (UK, USA, Australia) and I've also given these names and contact info to our consultant here in Ireland. It's a start. If anyone's doctor would like to be involved, please do feel free to send a message through the messaging system to me. The more people who wish to get involved the better.
My own little one turned 9 a few weeks ago. She was diagnosed just after her 5th birthday (Feb) but had been having episodes for almost three years before although very sporadic and her first time to cough up blood was the Christmas before her diagnosis. She hasn't been admitted to hospital since just before last Christmas and is tolerating oral cyclophosphamide well (the nausea's sorted thank God). It's made a dramatic difference to her as happened the first time she was on cyclo. But the first time she got it regularly IV. She is have episodes of chest pain and shortness of breath but she's still on a low dose. She's doing normal things apart from running which she can't do and we go for short-ish walks.
Regards,
Miriam
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ann83
New Member
Posts: 1
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Post by ann83 on Aug 3, 2010 23:54:58 GMT -6
Hi
I am a 27 year old australian girl and was told that I have IPH in november of 2009.
I am going ok at the moment but am struggling with such a huge life change I used to work in the mines and on a farm I was always very active and now I can't walk around the block without feeling extremly breathless although I am greatful that I am here at all it was a case of being in the right place at the right time when I had my bleed, a 3 day trip for tests turned into 27 day stay with 7 of them spent in ICU.
I am currently on 7.5mg of prednisolne a day and alot of other things to help with the side effects of this. My doctors are great but i am pretty sure that they are just as much in the dark as I am.
I am just not real sure where i should take my life from here.
I feel so much sympathy for all parents out there that have to watch your children go throu any of this because it is not fun and wish that I could do more to help with any reasearch of this disease.
I can't seem to find anyone in australia with this disease but i am sure there are some out there some where.
Although all of the information on the internet is helping me understand more it is mostly all from diagnosis in children which is great as I really do hate the thought that any child has gone through what I have but it does not really help me with what to expect from here on.
Anyway just thought i would tell my little story to see if there is anyone out there that can help me find more information or that can help me get in contact with some doctors which may know more.
Thanks for your time
Ann
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Post by cooper on Aug 4, 2010 6:31:05 GMT -6
Hi Ann,
You're not alone, and I would love to help you in any way that I can. I am in Perth and my son is treated at Princess Margaret Hospital by their wonderful respiratory team. He is 5 and was diagnosed just prior to turning 3. Ours is a long story with lots of medical trials but we seem to be making it to the other side, finally. I would love to answer any questions that you have and provide details of our specialists for your doctors to contact. Please feel free to either send me a private message or get my home email off the site.
Keep well,
Lori Cooper
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Post by IPH NET on Aug 14, 2010 16:29:45 GMT -6
Hi I am a 27 year old australian girl and was told that I have IPH in november of 2009. I am going ok at the moment but am struggling with such a huge life change I used to work in the mines and on a farm I was always very active and now I can't walk around the block without feeling extremly breathless although I am greatful that I am here at all it was a case of being in the right place at the right time when I had my bleed, a 3 day trip for tests turned into 27 day stay with 7 of them spent in ICU. I am currently on 7.5mg of prednisolne a day and alot of other things to help with the side effects of this. My doctors are great but i am pretty sure that they are just as much in the dark as I am. I am just not real sure where i should take my life from here. I feel so much sympathy for all parents out there that have to watch your children go throu any of this because it is not fun and wish that I could do more to help with any reasearch of this disease. I can't seem to find anyone in australia with this disease but i am sure there are some out there some where. Although all of the information on the internet is helping me understand more it is mostly all from diagnosis in children which is great as I really do hate the thought that any child has gone through what I have but it does not really help me with what to expect from here on. Anyway just thought i would tell my little story to see if there is anyone out there that can help me find more information or that can help me get in contact with some doctors which may know more. Thanks for your time Ann Ann, Thank you for joining. My daughter was diagnosed back in 1983-84. She is now approaching 29 years old, not perfect health, but still hanging in there. She just spent a couple of days in the hospital, and is out and doing a little better. We are trying to get a community together worldwide to share info and treatments for IPH and physicians working now with IPH. You are among friends here. To the community here, I hope you can share your experiences and assist Ann in her journey. Regards, IPH-NET |
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Post by jabalcuza on Aug 31, 2010 13:54:57 GMT -6
Hola, quisiera darte animos, yo acabo de cumpli 46 años, vivo en España, me diagnosticarón la enfermedad en 1985, con 21 años, pero nací con ella. Tengo una hija con 15 años completamente sana, y aunque de vez en cuando tengo que ir al hospital, ahora mismo mi único tratamiento es acetilcisteina 600 mg. Mi SO ha vuelto a ser normal de 96% y solo debo de cuidarme mucho, para no resfriarme. En España se nos acaba ya el verano. Si necesitais preguntarme no lo dudeis, estoy aqui para ayudaros. Un saludo
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Post by miriam on Sept 4, 2010 2:03:51 GMT -6
Hi Ann,
I've put a posting on one of the other bulletin boards on this as well. While rare there's a group of us going through this. After a very stormy few years my daughter's really improved on her current immunosuppressants. Every year we give her the flu vaccine once it becomes available to help prevent infections. Chest infections - even mild- can precipitate a bleed for her so we really do try to prevent them as much as possible. But she still goes to a normal school with other kids. Normality's really important.
It's wonderful to have her so much more active - she's going to ballet now and playing more.
The time of diagnosis is tough but there's been a lot of progress made in haemosiderosis. I asked our medical team for a protocol and we have an A4 sized laminated sheet, on hospital headed. It gives a brief description of the condition and what to look out for (signs & symptoms of an acute bleed) including what investigations to do and chest xray signs. I also asked that it include the dose of steroids to administer because we had episodes like IPH NET. It's been a great help when we go into hospital and it's an on call situation and doctors unfamiliar with the condition.
Please feel free to contact.
Regards and wishing you well,
Miriam
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