|
|
what do we do now |
Post Reply 
|
Page <12 |
| Author |
 Share Topic Printable Version Google Delicious Digg StumbleUpon Windows Live Yahoo Bookmarks reddit Facebook MySpace Newsvine Furl Topic Search  Topic Options
|
nataly 
Newbie 
Joined: 26-February-2009 Location: England Posts: 7 |
 Post Options
 Quote Reply
 Posted: 25-July-2010 at 8:13pm |
|
Hello i am so sorry that i have not been on this site for a while things seem to have just been a whirlwind for me. I travelled to America in november 2009 for the stem cell treatment, i found this treatment by searching the internet and came across a doctor in america who would take me. It cost $54,000 which was about £40,000 then. I am currently taking bosentan, sildenifil, warfarin and iloprost via a hickman line. The doctor in america said that the lot of stem cells i had would not cure me or at this stage or enable me to get of my medication he said it would hold the progression and hopefully reverse it a little and hold it for 5 years, which at the time was great news for me as i was told i only had a couple of years to live. Since returning i would say i am stable and feeling better, my ph hasnt got any worse and i would say i enjoy a good quality of life. I am a single mum with two children aged 2 and 7 and i manage to look after them and do most things mums do! An xray showed my heart has shrunk a little bit but my ph team aren't sure whether its my treatment or the stem cells. Ive only had 2 heart scans which showed the pressure was still quite high, but ive not had a recent one and i am due one soon so i'll let you know! There are two other companys that do stem cells that aren't as expensive i'll check my email and put their email addresses on here. The doctors at sheffield have told another family that stem cells will be the wonder cure in europe in the next five years. I hope this helps, again i'm sorry ive not been on here much, ive just recovered from a hickman line infection and as i said im a busy single mum which is fun!
Love Natalie xxxx
|
|
 |
|
|
nataly
Newbie
Joined: 26-February-2009 Location: England Posts: 7 |
Post Options
Quote Reply
Posted: 25-July-2010 at 8:33pm |
|
Hi again, those email address are theinhtut@theravite.com this is dr thein htut in bangkok and they charge $44,900 last time i checked. Also there's sthakore@sify.com which is Dr Shalin Thakore in India and they charge $11,000. To email the company i used its ntrombino@regenocyte.com or visit www.regenocyte.com. I don't want to influence anybody it has to be your own decision at the end of the day, i think i am the only person to have gone in the uk but i wanted to try it.
Peter if you want me to forward you the emails i received from these companys i will. I am sorry to hear about your daughter, this is a horrible illness! i know at sheffield they asked me did i want to trial a drug called imatinib its supposed to be a cancer drug but has been shown to have a great effect in severe ph, they said if i was to get worse they could try and get it for me so its worth while asking. Im not in the trial as it would require me to travel to sheffield every week and i am an hour and a half away so i couldnt physically do it and they understood. Also you would need to consider whether your daughter is fit enough to fly.
Love Natalie xx
|
|
|
|
|
Tracie
Admin Group 
Joined: 23-November-2004 Location: United Kingdom Posts: 902 |
Post Options
Quote Reply
Posted: 25-July-2010 at 8:41pm |
|
Hi Peter....
Wow, this post stopped me in my tracks.... I truely feel for you, your daughter and your family. Been in similar situation. I have to say i was always honest with Leanne and PH.... Not easy but i felt that if she was aware of the situation then she was in a better position to say how she wanted things... As at the end of the day it was her body and she had rights regardless of her age. Leanne became very knowledgable in PH and how it effected her life and its possible end results......... Leanne actually didn't want a transplant which was very hard for us to understand and deal with, but she said it would be changing her and making her different... She wouldnt be Leanne anymore.. Not sure if that was brave or not! Very hard for us as parents to accept this decison but it was her decision to make. We also looked at stem cell treatment and i researched it with every breath i had... I personally think it is a positive option, as better then no option, but this is really personal choice. No one knows at the moment the long term effects of this therapy but i felt any chance of a future was better then no chance. Leanne was also interested in this option... Sadly we didn't get that far but i am certain if she was still here it would have been our next move...... I think from reading your daughters face book status that she is probably a little more aware of things then you probably think.... Kids have a wonderful way of just knowing... She also sounds quite balanced about everything but i could be wrong... It is so much harder in some ways for us parents as we feel their pain on top of dealing with our own pain, knowing there is nothing we can do, when all we want is to make them better. I would give your daughter as much info as you can on Stem cell therapy and do as much research as you can and then make a decision together. I worked on the theory that if we got 5 years from Stem cell therapy, then it gave us 5 years for something else to come along or even an improvement in the therapy itself..... Sorry not been much help, but just thought i had to add to this post. You are welcome to PM me if you want any other info... Love to you and your family Tracie x |
|
|
|
|
amandahale@btinterne
Senior Member 
Joined: 09-March-2009 Location: Gwent, Wales Posts: 182 |
Post Options
Quote Reply
Posted: 25-July-2010 at 8:45pm |
|
Cheers Natalie, the fundraising hair day looked good, well done!!!xxx
|
|
|
VSD repair at age 4. Diagnosed with PH March 2009 age 28.xxx
|
|
|
|
|
Jack
Senior Member
Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
Post Options
Quote Reply
Posted: 25-July-2010 at 9:01pm |
|
Personally I think its wrong that people are forced to pay all this money and travel all over the world to get this treatment. Why isn`t it available here? I know its experimental and only at its early stages of development but surely like the drugs if our doctors had people who were willing to take the chance and try the treatment this would put our doctors at the forefront of research and help them to develop the treatment and find a cure quicker.i just don`t understand this country sometimes. Its completely beyond me and makes me angry. End of rant!!!
|
|
|
Today may have been bad but tomorrow could be a whole lot better.
|
|
|
|
|
nataly
Newbie
Joined: 26-February-2009 Location: England Posts: 7 |
Post Options
Quote Reply
Posted: 25-July-2010 at 9:11pm |
|
Peter if you or your daughter need anymore information pm me, i am willing to help in anyway i can! I am a great believer in where there's life there's hope so continue to stay strong! I am also on facebook, im abit older than your daughter i'm 28 but she may want to talk.
Love Natalie xx
|
|
|
|
|
Miriam
Senior Member
Joined: 20-March-2006 Location: United Kingdom Posts: 2866 |
Post Options
Quote Reply
Posted: 26-July-2010 at 11:48am |
|
Nataly - delighted you're doing well. Keep us posted.
Jack - against the law in UK to do treatments that haven't passed clinical trials and that are not recognised by the medical and ethical powers that be. Hence they are conducted privately in places like Dominican Republic, Thailand etc., where the law isn't so stiff and unbending. Nataly was done in the DR but I looked closely at Thailand and apparently it's one of the best hospitals around, used by American medical tourists mostly.
There is a clinical trial going on in Toronto for stem cells and PH but they're first looking at the safety of it. Apparently that will still take a few years and based on their clinical trial and findings, the rest of the western world will bring in stem cell treatment. Or not, if the findings aren't good, but I doubt it.
The thing is, not everyone can wait so long, so it's off to do it privately abroad if you want the treatment.
|
|
|
Laugh, Love, Live
|
|
|
|
|
Jack
Senior Member
Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
Post Options
Quote Reply
Posted: 26-July-2010 at 12:47pm |
|
We need to help our doctors perfect this treatment not effectively tie one of the hands behind there back.This is causing people to die needlessly and needs to be changed.This is a fantastic new area that could really make a difference to all forms of illnesses and we need to be at the forefront of these treatments. Prsent practice is total madness.
|
|
|
Today may have been bad but tomorrow could be a whole lot better.
|
|
|
|
|
Peter G
Groupie 
Joined: 02-December-2007 Location: United Kingdom Posts: 32 |
Post Options
Quote Reply
Posted: 28-July-2010 at 7:20pm |
|
Thank you all for your replies, Laura is getting along with life as normal Dad has come to a standstill. She is a very bright girl who has a very determined attitude this is what made the news a bit hard to swallow. I feel the transplant assessment seems IMHO to do things backwards, Laura had read all the books and knew all the problems but she had also read all the good sides as well, she was adamant she wanted a transplant regardless of the downsides and was looking forward to the new life she would have, then she was told she was not suitable.
Maybe this should have been told to her before she got her hopes up and read about the new life she wanted. she has read about stem cell and I will pass on the details off here and we will sit down and reasearch things. GoSH have agreed to see her again even though she is over 17 which is a relief for us as we fell safe in there hands. |
|
|
|
|
susanna
Senior Member
Joined: 12-March-2009 Location: Herefordshire Posts: 191 |
Post Options
Quote Reply
Posted: 28-July-2010 at 10:32pm |
|
Peter - glad to read your latest post, and that Laura is getting on with her life now, she certainly sounds a bright girl who has read all she can about her situation - but I still feel so much for you and your family as parents - not easy at all. I am glad that Laura can stay under the wing of GOSH.
Take care - Susanna
|
|
|
|
|
Jack
Senior Member
Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
Post Options
Quote Reply
Posted: 29-July-2010 at 11:43am |
|
Peter it may not seem it at present but you are a very lucky man! You are very lucky to have a daughter who seems such an intelligent. courageous and determined girl. You should be very proud of her.
Stem cell treatment is only really in the early stages of development at present but I am sure its through that we will see a cure for PH. You are doing the right thing in researching it and i would advice a word with the doctors at GOSH to see what they think as well. I really hope that you get on well at Great Ormond Street when you go back there. I went there as a child for other problems than I have now and I do know its a very special place. If they can`t help you much it may be an idea to be asked to be refered to another PH centre for them to look at your daughters case. Sometimes a new perspective and people with different ideas can help. I have been to Papworth twice and they have a very good team there. Also Papworth are a hospital that does have a reputation of pioneering new treatments. Please keep us informed of how your daughter is getting on and i hope that GOSH can give you fresh hope when you see them.
|
|
|
Today may have been bad but tomorrow could be a whole lot better.
|
|
|
|
|
Peter G
Groupie
Joined: 02-December-2007 Location: United Kingdom Posts: 32 |
Post Options
Quote Reply
Posted: 08-August-2010 at 4:24pm |
|
This is my daughter living life to the full she is the one on the bottom, she is not letting PAH stop her life at all.
 |
|
|
|
|
Jack
Senior Member
Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
Post Options
Quote Reply
Posted: 08-August-2010 at 5:12pm |
|
That`s great. She seems like a very strong character.
|
|
|
Today may have been bad but tomorrow could be a whole lot better.
|
|
|
|
|
karen
Senior Member
Joined: 22-November-2004 Location: United Kingdom Posts: 2293 |
Post Options
Quote Reply
Posted: 08-August-2010 at 10:42pm |
|
Its the carribean twist that is keeping your daughter going HA ha .. good for her dont let it stop her doing anything. i like to live my life too and i am 50 lol.
|
|
|
|
|
whitewitchy
Senior Member
Joined: 25-March-2010 Location: Amersham Bucks Posts: 125 |
Post Options
Quote Reply
Posted: 09-August-2010 at 12:29am |
|
Peter she looks fantastic and someone to be proud of.
|
|
|
((((((((love and hugs forever)))))))))xxxx Stella
|
|
|
|
|
Jets
Senior Member
Joined: 04-October-2006 Location: United Kingdom Posts: 919 |
Post Options
Quote Reply
Posted: 09-August-2010 at 8:45am |
|
Peter she looks great!!
|
|
|
Lupus for 27 years or more and secondary PAH for 5 years but only diagnosed in Sept 2006
|
|
|
|
|
debsie
Senior Member
Joined: 10-October-2008 Location: United Kingdom Posts: 381 |
Post Options
Quote Reply
Posted: 09-August-2010 at 5:18pm |
|
She seems to be a happy fun loving girl,good for her carrying on with things take care love Debbie x
|
|
|
love and hugs
|
|
|
|
|
Miriam
Senior Member
Joined: 20-March-2006 Location: United Kingdom Posts: 2866 |
Post Options
Quote Reply
Posted: 11-August-2010 at 11:22am |
|
She's lovely and seems to be very happy.
|
|
|
Laugh, Love, Live
|
|
|
|
|
dee 3
Senior Member
Joined: 28-January-2009 Location: south east Posts: 443 |
Post Options
Quote Reply
Posted: 11-August-2010 at 7:10pm |
|
Hi peter
Laura looks great,  lovely she is having fun take care  dee |
|
|
MCTD,PH, SLE, DM, SS, ILD.
|
|
|
|
|
Post Reply
|
Page <12 |
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |
