Hi to everyone!!!!
Have got good news. Last weekend I spent several hours on the net looking at London hospitals. I looked at the links that so many of you have sent me (Thank you!!!!) I have found an obstetric physician who deals with high rick pregnancies and other probs during pregnancy. I called her secretary and asked her is she is the consyktant that I needed to see and she siad yes!!!!! Her name is Dr. Catherine Nelson-Piercy at St Thomas's hospital in London. I then phoned my GP and asked for a referal to be sent to her. I phoned the hospital this morning and they have recieved it!!!!!!
Next step is for her to have a look at it and send me an appointment. She doesn't take private patients but I have been told that her waiting list is not long. So hopefully it won't take long.
I will keep you all informed of the progress that I make. I hope everyone is ok.
Vicki XXXX
Hyperemesis Gravidarum Support and Research Forums
A place to discuss all the various issues related to hyperemesis gravidarum.
Diabetic & an HG sufferer
Moderators: Natalie, Moderators
33 posts
• Page 2 of 2 • 1, 2
by Natalie » Mar 08, 2007 2:34 pm
Hi Vicky
What absolutely fantastic news
Guys and St Thomas is a top notch hospital. I'm *sure* you'll be in good hands.
I emailed the Sister at the Barts hospital HG clinic to ask if they take out-of-area referrals so long as they come through Barts A & E. I am kind of hoping it's like a regional centre that covers a wide area outside of their usual remit and that would make you eligible to go there for treatment if appropriate what with your Diabetes et al. Anyway, I am waiting to hear back but I'll let you know as soon as I hear anything.
I also found this along the same lines... http://www.bartsandthelondon.org.uk/for ... sp?id=1259. I have never heard of an HG clinic over here before, although I think they are present in the US. I really hope it marks a new way of managing HG treamtent over here - although didn't think much of their tips. Eating ginger??!!! Eating a biscuit??!!!!! Honestly, you may as well say have you tried crackers???
Maybe we could email them with suggestions of things that may actually help a HGer e.g. for some reason orange juice / squash works well so long as it's freezing cold as in straight out the fridge / freezer.
Anyway, I'm really very happy that you have found a way forward.
Love Natalie, x
What absolutely fantastic news
Guys and St Thomas is a top notch hospital. I'm *sure* you'll be in good hands.
I emailed the Sister at the Barts hospital HG clinic to ask if they take out-of-area referrals so long as they come through Barts A & E. I am kind of hoping it's like a regional centre that covers a wide area outside of their usual remit and that would make you eligible to go there for treatment if appropriate what with your Diabetes et al. Anyway, I am waiting to hear back but I'll let you know as soon as I hear anything.
I also found this along the same lines... http://www.bartsandthelondon.org.uk/for ... sp?id=1259. I have never heard of an HG clinic over here before, although I think they are present in the US. I really hope it marks a new way of managing HG treamtent over here - although didn't think much of their tips. Eating ginger??!!! Eating a biscuit??!!!!! Honestly, you may as well say have you tried crackers???
Maybe we could email them with suggestions of things that may actually help a HGer e.g. for some reason orange juice / squash works well so long as it's freezing cold as in straight out the fridge / freezer.
Anyway, I'm really very happy that you have found a way forward.
Love Natalie, x
2003 - DD
2006 - DS
2010 - DS
2006 - DS
2010 - DS
- Natalie
- Forum Moderator
- Posts: 6386
- Joined: May 29, 2004 6:17 pm
- Location: Auckland, NZ
by Carcully » Mar 08, 2007 6:54 pm
Hi Tori,
My apologies for being so late to respond to your post. I actually don't come to the site very often these days, but Natalie alerted me that you were here, so I thought I'd write and send my support, too.
First of all, I'm so sorry for all you've been through!! HG is so miserably difficult to contend with by itself...paired with Diabetes, it's twice as tough. I am a Type II diabetic...I was borderline most of my life, then developed gestational diabetes with my 1st pregnancy, again in my 2nd pregnancy...and it did not go away after that. Not a total surprise, though...Diabetes runs in my dad's family. I am currently diet controlled, but did also take Glyburide during my last pregnancy to keep my numbers down.
I realize that Type I is a more involved type of diabetes...do you have an insulin pump, or do you do shots? Are you strict with your diet? I know the worst thing for me was the whole notion that even when I was at my "HG-best" (which was AWFUL, on a good day), most of the foods that I felt I could stomach were not a part of my diabetic diet
It was a real challenge to come up with what to eat, particularly in the beginning. However, I worked with my dietician, and gradually, I developed some 'stand-by' foods that I could stick to, and manange my sugars. It was very stressful to wake up every morning, and think, "What am I going to eat today?" I would literally have anxiety attacks over it, at first. Basically...I lived on sourdough breakfast jack sandwiches and iced tea from Jack-in-the-Box for a long time, until I was able to stomach more vegetables, and other sources of protein. I can go more into all the diet stuff that worked, if you ever want to chat.
Now about the medical management...I was lucky to have good care. I have Kaiser for insurance, and they were really good with me, especially having known me from my 1st pregnancy 4 1/2 years earlier. I as hospitalized at 5 1/2 weeks with my 2nd pregnancy, and since no other meds were working (Zofran, Phnerghan, Compazine, Reglan, Anzemet), the doctor finally agreed to start me on steroids (Prednisone). It was earlier than we would have liked to have started them, but since I was so ill, and we were discussing termination, we decided to try them again. They really are what enabled me to continue on with the pregnancy...without them, I wouldn't have had a chance. Mind you, I still felt that mind-numbing nausea until around week 16, with some improvement after that..but the steroids kept me out of the hospital for the remainder of the pregnancy. However they did come at some cost to me, though...they do raise your blood sugars, and so I developed the diabetes early on in the pregnancy, so I had to balance it with the Glyburide, and diet. After tapering off the steroids, I devloped swollen lymph nodes, particularly one very large one in my arm, about the size of a golf ball. They still aren't sure what caused it, but the oncologist I saw suspected it may have been an infection, due to a weakened immune system from being on the steroids for so long (about 4 months, at fairly large doses). Thankfully, my baby was born healthy...and I do not regret taking the steroids, for without them my baby and I woudn't be here.
My diabetes was much better managed during my 2nd pregnancy...and what a difference...my doctor only had me do a fasting blood draw once a week during my 1st pregnancy, and my baby was born at 10 lbs
The 2nd time, I got a glucose monitor, and tested myself 5 times a day...my baby was 8lbs.
Anyway...I'm so glad to read that you've had luck in finding a high-risk ob to see you...that's wonderful news. I know it may be a hard road, but with the right care, it IS do-able. I'll check in on you to see how things are going, and PLEASE, feel free to pm me if you ever want to chat. Big
to you, and I wish you all the luck in the world!
Oh...by the way...after my pregnancy, somone told me about a website for diabetic mothers...it's called www.diabeticmommy.com. Perhaps some of the ladies there migh be of help, too.
My apologies for being so late to respond to your post. I actually don't come to the site very often these days, but Natalie alerted me that you were here, so I thought I'd write and send my support, too.
First of all, I'm so sorry for all you've been through!! HG is so miserably difficult to contend with by itself...paired with Diabetes, it's twice as tough. I am a Type II diabetic...I was borderline most of my life, then developed gestational diabetes with my 1st pregnancy, again in my 2nd pregnancy...and it did not go away after that. Not a total surprise, though...Diabetes runs in my dad's family. I am currently diet controlled, but did also take Glyburide during my last pregnancy to keep my numbers down.
I realize that Type I is a more involved type of diabetes...do you have an insulin pump, or do you do shots? Are you strict with your diet? I know the worst thing for me was the whole notion that even when I was at my "HG-best" (which was AWFUL, on a good day), most of the foods that I felt I could stomach were not a part of my diabetic diet
It was a real challenge to come up with what to eat, particularly in the beginning. However, I worked with my dietician, and gradually, I developed some 'stand-by' foods that I could stick to, and manange my sugars. It was very stressful to wake up every morning, and think, "What am I going to eat today?" I would literally have anxiety attacks over it, at first. Basically...I lived on sourdough breakfast jack sandwiches and iced tea from Jack-in-the-Box for a long time, until I was able to stomach more vegetables, and other sources of protein. I can go more into all the diet stuff that worked, if you ever want to chat.
Now about the medical management...I was lucky to have good care. I have Kaiser for insurance, and they were really good with me, especially having known me from my 1st pregnancy 4 1/2 years earlier. I as hospitalized at 5 1/2 weeks with my 2nd pregnancy, and since no other meds were working (Zofran, Phnerghan, Compazine, Reglan, Anzemet), the doctor finally agreed to start me on steroids (Prednisone). It was earlier than we would have liked to have started them, but since I was so ill, and we were discussing termination, we decided to try them again. They really are what enabled me to continue on with the pregnancy...without them, I wouldn't have had a chance. Mind you, I still felt that mind-numbing nausea until around week 16, with some improvement after that..but the steroids kept me out of the hospital for the remainder of the pregnancy. However they did come at some cost to me, though...they do raise your blood sugars, and so I developed the diabetes early on in the pregnancy, so I had to balance it with the Glyburide, and diet. After tapering off the steroids, I devloped swollen lymph nodes, particularly one very large one in my arm, about the size of a golf ball. They still aren't sure what caused it, but the oncologist I saw suspected it may have been an infection, due to a weakened immune system from being on the steroids for so long (about 4 months, at fairly large doses). Thankfully, my baby was born healthy...and I do not regret taking the steroids, for without them my baby and I woudn't be here.
My diabetes was much better managed during my 2nd pregnancy...and what a difference...my doctor only had me do a fasting blood draw once a week during my 1st pregnancy, and my baby was born at 10 lbs
The 2nd time, I got a glucose monitor, and tested myself 5 times a day...my baby was 8lbs.
Anyway...I'm so glad to read that you've had luck in finding a high-risk ob to see you...that's wonderful news. I know it may be a hard road, but with the right care, it IS do-able. I'll check in on you to see how things are going, and PLEASE, feel free to pm me if you ever want to chat. Big
to you, and I wish you all the luck in the world!
Oh...by the way...after my pregnancy, somone told me about a website for diabetic mothers...it's called www.diabeticmommy.com. Perhaps some of the ladies there migh be of help, too.
Bethany
Mommy to Carson Anthony (8-17-01) and...
Cullen Michael (12-18-05)
Mommy to Carson Anthony (8-17-01) and...
Cullen Michael (12-18-05)
- Carcully
- Been There Done That
- Posts: 311
- Joined: Apr 16, 2005 7:42 pm
- Location: California
Hopefully other hospitals will follow.
by tori » Mar 25, 2007 8:45 am
Hi to everyone!!!
So I have my appointment this Friday and am starting to get a bit nercous, but not too sure why!!??
I have written down some questions to ask the Dr. Am just going to run through them, if anyone has any more they think I should ask please tell me. I don't want to miss anything out!!! (Am I just crazy ?)
1. Has she seen anyone else worse than I was last year?
2. Do they have a protocol that they follow (depending on the patient)?
3. Does she know of any alternatives that could have been offerred to me last year? (So that I know what she will do if things start to go down the same route)
4. Am I on the correct doses of meds at the moment?
5. Will she start me on anti-sickness drugs early? (Strong ones!!!)
6. At which point, if I was very sick, would she admit me?
7. Will I be able to see & speak to HER if things are very bad?
8. Will she look after me before my 12 week "booking in" appointment?
9. If things are very bad can I go onto an odansetron pump? (Zofran)
10. Will she also look after my diabetes? (or will that be someone different?)
All these questions keep going round in my head, and I think I am going just slightly mad. I am very excited about the appointment, just nervous.........
Hope everyone is well.
Vicki XXX
So I have my appointment this Friday and am starting to get a bit nercous, but not too sure why!!??
I have written down some questions to ask the Dr. Am just going to run through them, if anyone has any more they think I should ask please tell me. I don't want to miss anything out!!! (Am I just crazy
?)
1. Has she seen anyone else worse than I was last year?
2. Do they have a protocol that they follow (depending on the patient)?
3. Does she know of any alternatives that could have been offerred to me last year? (So that I know what she will do if things start to go down the same route)
4. Am I on the correct doses of meds at the moment?
5. Will she start me on anti-sickness drugs early? (Strong ones!!!)
6. At which point, if I was very sick, would she admit me?
7. Will I be able to see & speak to HER if things are very bad?
8. Will she look after me before my 12 week "booking in" appointment?
9. If things are very bad can I go onto an odansetron pump? (Zofran)
10. Will she also look after my diabetes? (or will that be someone different?)
All these questions keep going round in my head, and I think I am going just slightly mad. I am very excited about the appointment, just nervous.........
Hope everyone is well.
Vicki XXX
- tori
- New Member
- Posts: 41
- Joined: Feb 25, 2007 4:15 pm
- Location: Kent. UK
by Natalie » Mar 25, 2007 4:06 pm
Hi Tori.
I have the Ashli Foshee McCall book here on my desk and she has a whole section on questions to ask a prospective Dr. Now remember this is US oriented but I'm just going to copy her qs down that are relevant for you.
1. How much experience does the Dr. have with HG (and Diabetes in your case). Can she estimate how many HG plus Diabetes pts s/he has treated in the past 5 years? [My own question here would also be I guess - do the ladies get through without terminating]
2. How does the Dr. typically treat the disease? What is the standard treatment protocol? When would s/he consider prescribing Odansetron? [me again: How early will she stick you on meds?]
3. Has s/he treated HG patients with corticosteroids and alternative methods of feeding if necessary (not sure how relevant the feeding q is but see what s/he says)
4. Who will you see each time you come in?
5. Now, I don't even know if this can be done in the UK but I will write out verbatim what St. Ashli (as I call her lol) says and then you can see about re-hashing it to make it more UK orientated if you want to ok?
'If I confer notarized patient status on my gestating child and my own life is not in immediate danger, will you honour the conference and refuse to terminate the pgy even if, in desperation, I should resort to asking for it.
This question may be especially meaningful to those who have, due to HG, terminated in the past as many worry that they will repeat an unwanted experience under extreme physical distress. It is an earnest request that cries 'save me from myself!' Although it doesn't prevent you from seeking a termination from elsewhere, symbolically it can be very meaningful to you and can help you hang in there when the symptoms are at their peak. Also it informs the Dr. at the very beginning that you are not ambiguous about wanting to complete your pgy'
Tori, if I think of anything else, I will let you know. Check back last thing Thursday just in case anything else pops into my head before then!
If I don't have any more brainwaves, I wish you all the very best for Friday. I hope it is a huge success and that this Dr will be really knowledgeable about HG, HG + Diabetes, proactive and sympathetic.
Love Natalie, x
I have the Ashli Foshee McCall book here on my desk and she has a whole section on questions to ask a prospective Dr. Now remember this is US oriented but I'm just going to copy her qs down that are relevant for you.
1. How much experience does the Dr. have with HG (and Diabetes in your case). Can she estimate how many HG plus Diabetes pts s/he has treated in the past 5 years? [My own question here would also be I guess - do the ladies get through without terminating]
2. How does the Dr. typically treat the disease? What is the standard treatment protocol? When would s/he consider prescribing Odansetron? [me again: How early will she stick you on meds?]
3. Has s/he treated HG patients with corticosteroids and alternative methods of feeding if necessary (not sure how relevant the feeding q is but see what s/he says)
4. Who will you see each time you come in?
5. Now, I don't even know if this can be done in the UK but I will write out verbatim what St. Ashli (as I call her lol) says and then you can see about re-hashing it to make it more UK orientated if you want to ok?
'If I confer notarized patient status on my gestating child and my own life is not in immediate danger, will you honour the conference and refuse to terminate the pgy even if, in desperation, I should resort to asking for it.
This question may be especially meaningful to those who have, due to HG, terminated in the past as many worry that they will repeat an unwanted experience under extreme physical distress. It is an earnest request that cries 'save me from myself!' Although it doesn't prevent you from seeking a termination from elsewhere, symbolically it can be very meaningful to you and can help you hang in there when the symptoms are at their peak. Also it informs the Dr. at the very beginning that you are not ambiguous about wanting to complete your pgy'
Tori, if I think of anything else, I will let you know. Check back last thing Thursday just in case anything else pops into my head before then!
If I don't have any more brainwaves, I wish you all the very best for Friday. I hope it is a huge success and that this Dr will be really knowledgeable about HG, HG + Diabetes, proactive and sympathetic.
Love Natalie, x
2003 - DD
2006 - DS
2010 - DS
2006 - DS
2010 - DS
- Natalie
- Forum Moderator
- Posts: 6386
- Joined: May 29, 2004 6:17 pm
- Location: Auckland, NZ
by sarahkate » Mar 26, 2007 6:10 am
It looks good to me, Vicki.
The bit Natalie added about an advance directive is great.
A pump in UK medical speak would be referred to as a syringe driver, that might help for asking the question.
Good luck, will definitely be thinking of you.
Sarah x
The bit Natalie added about an advance directive is great.
A pump in UK medical speak would be referred to as a syringe driver, that might help for asking the question.
Good luck, will definitely be thinking of you.
Sarah x
- sarahkate
- HG Diva
- Posts: 2941
- Joined: Jun 19, 2006 5:28 am
- Location: Manchester, UK
by tori » Apr 05, 2007 7:48 am
Hi to everyone,
well the appointment went ok last week. The consultant was amazed that I had been treated on a maternity ward and said that I should never have been there!!!
A few years ago I sufferred from something called Autonomic nueropathy. This is a problem that diabetics can have and it is when the nerve endings in your stomach don't work properly. It can make you really sick
When I was in hospital last year we kept asking the Dr wether this problem was re-occurring, they insisted that it wasn't. When I spoke to the consulatnt last week she was sure that it had re-occurred. She said that I should have been being cared for on a "medical"ward, with my diabetic consultant being in charge of my care. This of course has upset us further. Why didn't they do something???? 
On the positive side, she has said that there is no reason why we can't have a baby, as long as we both realise that it is very probable that I will be very sick again (with HG AND autonomic neuropathy!!!) She has reassure me that I can be treated but it will be a long process that could see me in hospital for 9 months.
We are both happy about this and I think we are just starting to mentally prepare ourselves for a very long journey!!!
Has anyone else heard of autonomic neuropathy??
Hope everyone else is well,
Speak soon,
Tori X
well the appointment went ok last week. The consultant was amazed that I had been treated on a maternity ward and said that I should never have been there!!!
A few years ago I sufferred from something called Autonomic nueropathy. This is a problem that diabetics can have and it is when the nerve endings in your stomach don't work properly. It can make you really sick
When I was in hospital last year we kept asking the Dr wether this problem was re-occurring, they insisted that it wasn't. When I spoke to the consulatnt last week she was sure that it had re-occurred. She said that I should have been being cared for on a "medical"ward, with my diabetic consultant being in charge of my care. This of course has upset us further. Why didn't they do something????
On the positive side, she has said that there is no reason why we can't have a baby, as long as we both realise that it is very probable that I will be very sick again (with HG AND autonomic neuropathy!!!) She has reassure me that I can be treated but it will be a long process that could see me in hospital for 9 months.
We are both happy about this and I think we are just starting to mentally prepare ourselves for a very long journey!!!
Has anyone else heard of autonomic neuropathy??
Hope everyone else is well,
Speak soon,
Tori X
- tori
- New Member
- Posts: 41
- Joined: Feb 25, 2007 4:15 pm
- Location: Kent. UK
by sarahkate » Apr 05, 2007 8:43 am
I'm so glad it went so well!!!
Autonomic neuropathy is rare, and I think more often affects the vagus nerve to the heart. But, it is interesting that your consultant thinks this might be adding to the intensity of the HG. I am SO glad that so have found someone willing to support you. Though obviously would be very sorry if you had to spend the whole 9 months in hospital.
I guess you have a lot to be thinking about but I am glad you have some hope about the journey ahead of you.
Sarah x
Autonomic neuropathy is rare, and I think more often affects the vagus nerve to the heart. But, it is interesting that your consultant thinks this might be adding to the intensity of the HG. I am SO glad that so have found someone willing to support you. Though obviously would be very sorry if you had to spend the whole 9 months in hospital.
I guess you have a lot to be thinking about but I am glad you have some hope about the journey ahead of you.
Sarah x
- sarahkate
- HG Diva
- Posts: 2941
- Joined: Jun 19, 2006 5:28 am
- Location: Manchester, UK
by Natalie » Apr 05, 2007 1:25 pm
Hi Tori,
I'm glad the meeting went ok and you ahve some answers. I have to confess that I did think your care last time around was pretty shocking.
It doesn sound your path to having a baby will be pretty complicated and hard work but like the Dr. said you can do it! You know, if you are in hospital for the whole 9 months, we will still all be here for you 110%.
GL with your prep. Maybe head over to the 'Prep. for HG' folder?? Start thinking about protocols and getting some feedback on your prep. You'll get lots of responses there I'm sure.
Love Natalie, x
Love Natalie, x
I'm glad the meeting went ok and you ahve some answers. I have to confess that I did think your care last time around was pretty shocking.
It doesn sound your path to having a baby will be pretty complicated and hard work but like the Dr. said you can do it! You know, if you are in hospital for the whole 9 months, we will still all be here for you 110%.
GL with your prep. Maybe head over to the 'Prep. for HG' folder?? Start thinking about protocols and getting some feedback on your prep. You'll get lots of responses there I'm sure.
Love Natalie, x
Love Natalie, x
2003 - DD
2006 - DS
2010 - DS
2006 - DS
2010 - DS
- Natalie
- Forum Moderator
- Posts: 6386
- Joined: May 29, 2004 6:17 pm
- Location: Auckland, NZ
33 posts
• Page 2 of 2 • 1, 2
Who is online
Users browsing this forum: No registered users and 2 guests