Persephone returns--with some GOOD news

[persephone]

Hi all,

Sorry I've been away for a bit...was away at a friend's for a few days, taking it easy.

Well--news:

Today I found out I got FULL funding for Oxford from the AHRC )Arts and Humanities Research Council)--they will cover ALL my fees and living costs for the year. WOOHOO!

However, everything has its price. My Papa fell on Monday and broke his hip (remember in June he was given Florinef and it led to a heart attack as his potassium levels fell?) He had an operation on Wednesday but is totally unable to stay conscious or hold a conversation I can't bear to go in and see him- he's in the same ward of the SAME hospital that was almost responsible for his death The nurses don't show any compassion or care; he's had one meal since he went in on Monday. They haven't cleaned his mouth, cared for him or been kind at all. And whenever we try and tell anyone they just don't care....including Doctors. They have him on Kapake for the pain- which I took at age 12 for period cramp! Jeez, the guy's broken his HIP! I could really KILL people who are so callous.

I had a letter from Professor Mathias today saying that he thinks I would be better off having 'locally based' care under a cardiologist. But he's the expert- my cardiologist has never treated POTS before! So in other words, no one is going to treat me before I start at Oxford. And the POTS is more unpredictable now than ever--

Last week I got the train to Hereford to visit a friend and it was awful- I fainted on the train and got taken to hospital by paramedics. My pulse was down to 39 and up to 244 but as usual, because the doctors didn't know what to do they sent me out. Which was useless. I went to see my GP a couple days before that, and tipped over in his office--my mum had to come over with my wheelchair because I just couldn't stand up How can doctors leave me in this state? A young woman in her twenties. The mind boggles.

My mum and dad are starting to wonder if they should try and get me to Dr Grubb in Ohio (that is where he's based, isn't it?) But we have NO IDEA of what to expect-- what if I get blown out at the last minute, like Ernie, after booking flights etc? We also relaly don't have that kind of money--the treatments must be SO expensive.

It's just that Midodrine is NOT cutting it for me. Nor are the betablockers

I don't understand why someone who is an expert is not interested in helping me get better and see this through- why am I being passed to someone who's never come across or treated POTS before? It's SILLY, it makes no sense. I just feel let down- another doctor refuses to help. I guess as the saying goes, another one bites the dust.

I just have to hope the POTS magically disappears before term starts in October!

[dizzygirl]

persephone..

wow you have alot going on right now.. I hope your papa will be allright..and yes I agree that the treatment he is getting is horrible.. just horrible..

as far as your docs are concerned.. i totally understand what you are going through on that front.. yes Dr. Grubb is in toledo Ohio.. there is a bit of wait to get into see see him..about 8-9 months.. could possibly your cardiologist call Dr. Grubb and speak with him about your treatment.. and what else you could do or try?

I understand your concernes of money and such.. i wish I had some better advice for you.. I wanted to let you I understand!!

please take care

dizzygirl..

[Sunfish]

p-

first off, the good....CONGRATULATIONS on your moneys for school!! that is SO cool and i am SO jealous...i have some scholarship funds but am also going to be living off of loans for the year.

i'm also glad that you were able to visit a friend for a few days...it's so easy to never do that sort of thing in the midst of health craziness, ya know?

and then everything else....

you definitely do have a lot going on. it seems like so many people do these days. stuff that would be hard for anyone to deal with, nevermind dealing with it on top of health issues.

i'm so sorry to hear about your papa - both his health & the way he's being treated. i'll keep him & your family in my thoughts & prayers, and will specifically hope & pray that some better caretakers will soon come his way.

regarding the doctor issue, i do find dr. m's recommendation a bit confusing & frustrating...perhaps he's just way too overloaded? obviously this doesn't help you at all, but all the docs who really "get it" have way too much on their plates. but again...even if this is the case this doesn't help you. i'm wondering though if his letter would have any effect on a local cardio for you? b/c i have found that having a local doc is essential - even if he/she isn't an expert. and i wonder if he would be willing to consult with a local doc for you? or - like was mentioned - if dr. grubb will be able to consult with a local doc for you.

as great as dr. grubb can be, i would hesitate to advocate your setting up a trip to visit the US to see him...b/c of exactly what you said....changed/ cancelled appointments in light of the time/effort/energy/expense you and your parents would have to expend to make it happen. of course that doesn't mean you can't pursue calling to inquire about an appointment, or even making an appointment, but despite the fact that it seems like you've done absolutely everything locally, i would try for even more creativity before actually booking a flight overseas. you can always make an appointment & then try other things in the meantime without having to set up other travel plans &/or paying out any monies at this point...

i definitely feel for you in terms of feeling stuck with nowhere to go, just hoping & praying that somehow things will be okay enough by the time school starts.

hang in there...

:-)melissa

[Madwife]

Congratulations on your scholarship achievement...you deserve something going your way.

As for Prof.Mathias I know exactly what you mean...I feel so let down by him and I too have been thrown out into the wilderness. The cardiologists don't wanna know because they feel they can't do anything, my M.E specialist has left and now I've been thrown over to an endocrinologist in relation to my pituatary tumour but he isn't interested in getting involved on the POTS side of things.

Please please do not let the treatment that your father is recieving go...as a health care professional myself I am disgusted to hear the type or should I say lack of care he is recieving. Even if you feel unable to face up to it at present please try at some point to place a complaint in writing to the ward manager, in the mean time keep a note of all the things that you feel is not being done or done incorrectly. If people don't complain then changes are not made and this type of disgraceful care continues...it doesn't matter if takes you ten years to do as complaints up to 25yrs have to be adressed.

I can see how busy you have been so please don't aplogise in relation to UK sufferers meeting we will all get together and cause havoc one of these days!! he he

In relation to my information booklet I am having problems at the moment as my disk has gone AWOL but I will try to re-do asap and forward you and everyone else a copy as soon as I am able.

Take care x

[persephone]

I would complain but the hospitals' currently pursuing the complaint I made about the florinef!

What else can I do to make an impact? Any ideas?

-edited as very ranty, sorry!

[Madwife]

It is so sad to hear that this is how you and your family are being trated Persephone. If I acted this way towards a patient and a complaint was made I would immediately be put under investigation and face supervision or dismissal with possible removal from the register making me unable to practice. It is very difficult as a relative to know the best way to deal with staff like this...people must understand that at times it is very difficult working for the NHS in that we are often stretched beyond our limits and expected to do the job of two and three people without any support or thanks from management, leading to low morale and indeed staff who take this out on the patients and relatives...I DO NOT agree with this sort of behaviour and am not trying to justify it in anyway. Sometimes if you approach a staff member to say why hasn't this been done then their backs will go up straight away and be on the defense...you should not have to take this into consideration as it is your grandfathers right to this care but maybe approach by saying you realise that they are busy but you are a bit concerned in that your grandfathers oral cares do not seem to have been done. If they still continue to talk to you like a piece of dirt then ask to speak to the sister in charge immediately and complain...you keep on complaining untill he gets the care he deserves.

[persephone]

Oh I know, Zoe, I know how busy they are...I've seen with my own eyes. It just upsets me SO much. Why do people with no feeling seem to be responsible for those who really do need time, attention and sensitivity?

Sorry, am probably ranting. but just feel SO let down by whole entire NHS today- my doctors, my grandad's doctors...all of 'em.

edited because of rantiness. sorry!

[Madwife]

Persephone, I really do both sympathise and understand I have been there so many times myself and am disgusted at some of the treatment and care I and other members of my family have recieved. It is so sad to think that people are being denied their basic human rights due to negligence and downfalls within the NHS. I truly hope that things get better for both you and your Grandfather. That HCA needs the sack!..how dare she! You stick to your guns and remember they are accountable for their care and cannot be allowed to get away with but I realise this is often easier said than done

[persephone]

God, Zoe, what a relief to find someone in the NHS who thinks this isn't good enough. Every time I go in to that ward, I just don't know where to start...

[Madwife]

The sad part is Persephone that I think it is personal experience that has made me this way and even more determined to give better care.

[MightyMouse]

First off, congratulations and a major Hurrah!!! for your funding for school. Don't let anyone, or anything stop you from persuing your dream.

As for coming to the states, you might think about telling the staff at Dr. Grubb's office that you're coming from oversea's and asking if they can guarantee the appointment time/slot. Even if you don't see the doctor, his nurse practioner, it seems, far exceeds the capabilities of what you have in the UK.

I hope your grandfather gets well quickly. Perhaps you could all take turns brining him nutritious foods.

Nina

[JaneEyre9]

Hi Persephone,

I'm new here to the board, but when i read your posts, I had to let you know that my family has been treated the same way (due to my grandpa's illness) at hospitals and nursing facilities for the past 5 years. It is terrible that health care workers can be so cold to a family in crisis and on top of that, they neglect the patient and then cover up their misdeeds. It is so hard for me to understand why or how people can do this. I can't tell you how many times my mom has confronted nurses and doctors for obvious neglect/harmful treatment of my grandpa and has received back cold insolent remarks. Sometimes the confrontation just makes the treatment even worse! My heart goes out to you and your family.

Kristen

[hayley]

hey Persephone,

glad you are going to oxford.hope it all works out for you and your family.

best wishes.Sorry i dont know what else to say as everyone has said it.

take care hx

[Dawg Tired]

What a relief on your funding for Oxford! I had been worried that you wouldn't be able to go!

So sorry about your papa. I don't know how healthcare professionals can be so uncaring. If they had simply said there wasn't enough staffing - maybe that wouldn't be as bad as trying to explain themselves... On the other hand; if they would just do their work maybe they wouldn't have to spend as much time explaining??

[MaryJo]

Hi Perse,

Firstly, many congrats on your funding and your achievement that's fantastic news and I can imagine how delighted you must feel!!!!!!!!!!

sorry to hear about your grandad. I know how terrible the NHS can be. my father died 5 years ago from alzheimers, and although we cared for him at home and he died at home, any support from the NHS was appalling. From what i understand, oral hygiene, and more especially, good hydration is often neglected. i know it is all wrong, but I think that your family will have to do this yourselves to make sure that it has been done. It is very sad that we can not rely on the nurses, but if you can arrange for family members to do it, then at least you know it is done. Good luck on this, and I hope that papa feels better soon.

Regarding the specialists, as you will know from my recent post, I am also concerned about continuing care, or rather the lack of it. However, I am beginning to look into all the measures that I can take myself to make my life easier e.g. compression hose, fluid, cooling vest, air con, etc.. I have felt like a guinea pig in the past with the docs.! Sometimes, i have spent a fortune on a specialist and then wondered who got more out of the consultation. i am another statistic for them to use for their research, and I paid for it!!!!! Sorry for the vent, but I feel so mad at times. I think that it is important to obtain a conclusive diagnosis through testing, but after that there does not appear to be much on offer.

How will you manage at Oxford? How's your health now compared to last year? Do you feel that you are worsening as you get older?

Love,

MJ

[Guest Julia59]

Congratulations on your funding for Oxford! My Uncle studied there in the 60s. I wished he was alive today so he could tell me more about his adventures around the world. He treated everyone the same-------regardless of wealth or education---he was truly an amazing person. He was a Jesuit priest and taught at John Carrol University in Cleveland after all his travels ended. He spent a lot of time in India, and also studied Eastern Religion.

Also, I'm so very sorry to hear your grandfater is once again getting such terrible treatment. I just don't understand why this kind of abuse to patients happens. It just floors me every time I hear things like that. I hope things change for the better for your grandfather soon------there is no excuse to treat a human being that way.

As far as seeing Dr. Grubb----i'm with Nina on that one. If you do decide to make a trip all the way to the US---I would make sure my appointment is set in stone to see Dr. Grubb. I know what it's like to travel to see a Doc, but I have not had to go out of the US----only to Chicago, NY, Milwaukee Wi.

I hope you can get some stability with your health before you start at Oxford.

Blessings and prayers to both you and your grandfather.

Julie :0)

[persephone]

Thanks guys! It means so much as ever to know you're here for me through hte highs and the lows. ESpecially the lows--I'm so glad you don't think I'm being unreasonable in expecting basic standards of care for my Papa.

I think if my family set up a rota of who can take in what foods then we can make sure it's done ourselves.

[DSM3KIDZ]

Sorry it took so long to respond....bad week. Anyways congrats on your scholorship. That's cool!!!!!!!

Sorry to hear about your dad. Is there some other hospital he can be in? It sounds like they are real jerks at the one he is at.

As for doctors, I also feel let down by them. I don't understand how they could not try everything in their power to try to help you and most of us on this board. They must not have taken a course on compassion because most doctors lack it. It makes me sick to think we have to fend for ourselves when they have all the access to medical information........I'm crabby and sorry that you are also experiencing this.

I hope it dissappears by October, that would be awesome.....I'll be pulling for you.

Dayna

[Roselover]

Hi Persephone. I was so disappointed for you when Oxford looked like it wasn't going to be possible. But deep down I felt like you were supposed to be there and it would work out. Didn't want to say that cause no one wants to hear that when it looks hopeless but now I am SO excited you are going! You'll have a blast in that beautiful old city and with your studies. I am a C S Lewis and Tolkein fan so when I visited Oxford I had lunch in the pub where the 'Inklings" met.

I'm sorry about the other rough things in your life with your Papa and with finding care for your POTS. I can understand and relate to struggling to find good doctors. Flying to see Dr. Grubb isn't an overseas flight for me, but a very long cross country one. I hope you get some help.

~Roselover

[Ernie]

Congradulation for Oxford. You must be so excited.

It upsets me to see how the medical personnel is treating your grandfather. I wonder why theyare in "the caring" business and they don't care! It must be for the money.

I don't know myself if I will go back to Dr Grubb because the last week-was such a dissapointment. I might postpone the appointment until I can be sure that I will not be postponed at the last minute. I will wait until his schedule and health are better organised. I had been preparing for 6 months for this appointment and I am very disappointed that I was "chosen" among some of the patients to be the one postponed. I have to plan ahead because someone has to come with me and that person also has a personal life. I cannot just go on and change plans like that all the time. At least, they called me before I left. My fear is that one day they will postpone me once I get there! Sorry I am not positive.

Ernie

[goldicedance]

Way to go with the funding for Oxford! You'll make it there! Sorry to hear about your papa's hip break. We went through this with my father-in-law last spring. As my father-in-law suffered from Alzheimers, things were doubly bad.

Perhaps you can get Dr. Mathias to write a game plan out for you so that your local doctor can better treat you as well as having your local doctor contact Dr. Mathias. Also, there are other things to use besides midodrine and beta blockers. And, the combinations are endless. Have you tried taking a "midodrine vacation"? That sometimes help give your body a break for a few days and allow it to work better with midodrine once you resume. Have you asked Dr. Mathias about mestinon? about clonidine? about phenobarbital? how about midodrine with mestinon? and the list goes on.

Good luck at Oxford!

Lois

[veg]

That's awesome news about your funding for Oxford - I'm really pleased for you.

Sorry to hear about your grandfather - I would write to the head of the hospital trust to complain. Is it an option to have him moved (though you would probably have to pay for a private ambulance to transport him) to another local hospital?

regards, veg