Thalassemia Patients and Friends

Discussion Forums => General Chatter => Topic started by: Danielle on April 15, 2007, 07:05:12 AM

Title: I need some good thoughts and prayers, please.
Post by: Danielle on April 15, 2007, 07:05:12 AM: I just got out of the hospital, after a long week of agony. :(

Honestly, I don't even know where to begin. This was a week from hell.

As some of you know, I've had major problems with my stomach (intestines) for a long time, but things have definitely gotten worse. Some of these things are kinda gross, so I'll refrain from giving some of the details, but I went into the hospital with severe pain and blood coming out of my rectum on Monday and just got out last night.

So, they gave me all these horrible tests, and it turns out that I definitely need some of my intestines taken out, and my rectum needs to be fixed. They didn't give me good news about it, though, and I am very upset. They told me that I need to think really hard about what I'll be able to live with, and talk with the surgeon about it. They want me to have a few more tests, and then I will be back to see the surgeon.

I don't have very good options. I was crying all week about it. I have a rectal prolapse, so the surgeon said that it may be serving as a "cork" because I have no muscle left in my rectum. So, if the prolapse is corrected, then I may end up being incontinent, where I have no bowel control what-so-ever. All I heard was him saying that I'd need to wear a diaper, and I almost passed out. :quiver My intestines are redundant, and they are all over the place, so some of them need to be removed. The only other option that I have, if I have the rectum fixed and want more control of my bowels, is to have a permanent colostomy. I am not happy about this. I'm so sick about it. I talked to another surgeon who said that he may just take some of the intestines out, and see how I feel after that, and maybe we can leave the rectum alone for now so that I will have bowel control. If that doesn't work, then I will have to have the rectum fixed and have no control of my bowels ever again. :wah

Please everyone, I beg you, please think good thoughts and say some prayers for me, if possible. I'd really appreciate it, with all my heart. I'm only 30 years old, and have already gone though so much. This is a very depressing time in my life, and I don't know how I'm going to deal with this. I will give updates as to when I'm having surgery, and what the plan is. Thanks, you guys. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: Manal on April 15, 2007, 08:08:01 AM: Dearest Danielle :hugfriend :hugfriend :hugfriend

I don't know what to say, i am so sorry to hear about all what you are passing through. i know this is a very difficult situation, but i am sure that things will definetly change to better . Remember that you are strong and a fighter and have passed through very difficult situations and this will pass too.

A very important thing is that you have to visit several doctors and have many points of views as much as you can. Also this option[quote I talked to another surgeon who said that he may just take some of the intestines out, and see how I feel after that, and maybe we can leave the rectum alone for now so that I will have bowel control. [/quote][/i] is a good one and seems a conservative option that i would choose if i were you.

Please, try to calm down and be sure that God does the best for us, it could have been something worse. Danielle, you are truely in my thoughts and prayers and i am sure that things will change to what will be suitable for you. Please keep us updated and i will do every possible research about this case. Wish i could be there beside you, please take care :hugfriend :hugfriend
Manal
Title: Re: I need some good thoughts and prayers, please.
Post by: blueskies on April 15, 2007, 08:17:45 AM: {{{Danielle}}} I'm so sorry you're having to go through this. My mother in law had a redundant colon and had part of it removed when she had colon cancer. She, too, was advised that she might come out of surgery with a colostomy, but that did not happen. Her cancer and part of her redundant colon were removed and she has had no further issues.

I hope you fair as well as she did. I agree with Manal; if it were me, I would go with the more conservative approach of the second surgeon.

Good luck and hugs to you.
Title: Re: I need some good thoughts and prayers, please.
Post by: sydneygirl on April 15, 2007, 09:18:02 AM: Dear Danielle,
Im so sorry to hear of your health problems,you will be in my thought & prayers.I know you are a strong person & u are young u can get through this!
we are all here for you.Thinking of you.take care.
Title: Re: I need some good thoughts and prayers, please.
Post by: Zaini on April 15, 2007, 12:06:58 PM: Danielle sweetheart, :bighug :bighug

plz be sure we all are with you,all our prayers are with you,i can't explain what i am feeling for you,i wish i knew english better,i always fail to express my emotions :gaah,plz be sure of urself and be strong,i know it's terrible,but remember morning always comes after night's darknss,you have kept your sanity while you were going through all this, this is the proof that you are a very strong person,i may have ended somewhere worst if i were you,but you are the best, i wish i can do something more then words,words can't heal what you are going through, but you are so far and away,i feel so helpless :sadyup,but i'll pray for you, this is the least i can do.and i am sorry for that.

:pray :pray :pray :getwell :getwell :getwell

ZAINI. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: Courtenay1826 on April 15, 2007, 05:03:28 PM: Oh, my sweet Danielle - :hugfriend :wah

I am so very sorry to hear of this development. Be sure to know that you are in my prayers day and night - you have been such a HUGE support for me. I wish I could sit down over coffee with you and just let you vent - I know how difficult the feelings are, when surgeons don't give you much options, etc.

That having been said, I am very upset that this is all the options that the docs in NYC are giving you. There is a WONDERFUL doc/surgeon here in Syracuse named Dr. Jaswant Bal - he trained first in India (he is familiar with thal and the degenerating effects on the organs) and he is an OB/GYN and reproductive/ureter and colon surgeon. He fixes bladders, colons, vaginal prolapses, rectal prolapses...you name it. He helped a family friend of mine with a v. prolapse and bladder prolapse, and what he did so she maintained her bladder continence was: he took a piece of skin inside and actually "anchored" the bladder and v. canal into place. She has perfect continence now, 6 mos post op. Would you like his number? It wouldn't hurt to see if he might be able to anchor the colon to allow it to focus on maintaining continence rather than holding itself in place with its limited muscular capabilities. Would you like his number? PM me if you'd like it.

All our love,
Courtenay, Karol, and Mychael
Title: Re: I need some good thoughts and prayers, please.
Post by: Andy Battaglia on April 15, 2007, 05:13:21 PM: HI Danielle,

I agree completely with Courtenay that you should seek another opinion. There are other doctors that can do advanced procedures and you shouldn't be limited to your local surgeons if they aren't familiar with the newer techniques. Definitely check into it. Syracuse is not so far to travel and if the doctor there can keep your functions intact it is well worth the trip.

Take care Danielle, and know you have a ton of friends here pulling for you. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: Manal on April 15, 2007, 07:11:00 PM: Please Danielle, have the opinion of Courtenay's doctor. It seems that there are other options. As Courtenay said, it wouldn't harm. Good Luck :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend

Manal
Title: Re: I need some good thoughts and prayers, please.
Post by: Canadian_Family on April 15, 2007, 08:42:24 PM: Dear Danielle,

Our prayers are with you. We are very upset at the news. Please take care of yourself and remember that people around the world are praying for you. We are looking forward to a happy Danielle soon.

PS. Please pay attention to Andy's advise about another opinion.

Regards.
Title: Re: I need some good thoughts and prayers, please.
Post by: Sharmin on April 15, 2007, 09:51:21 PM: Danielle,

I am so sad to read what you are going through! My prayers are with you and hope and pray that the best case scenerio will be the case for you. I hope you get another opinion and that you are given more favorable options. You help everyone throught so much and you give us all such courage. You are an inspiration and my prayers and good thoughts go out to you. :hugfriend :hugfriend Sharmin
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 15, 2007, 10:22:05 PM: Thank you guys so much. I really appreciate the kind words and prayers. :hugfriend

I've been getting as many opinions as I can. I've had problems with my stomach for a long time now, and was told a long time ago that I would most-likely need some of my intestines removed. I guess it has come to that time now, where I cannot wait any longer, because things have gotten much worse over the past couple of weeks. :(

To be honest, and I know this sounds crazy, but I want them to take some of my intestines out. I've been wanting this for a long time now, because it has been causing me excruciating pain. I cannot go to the bathroom anymore, and it's so painful. Now, the prolapse is a different story. If they fix the prolapse, then I will most-likely be incontinent, because I have absolutely no muscle left in my rectum, so even with new technology, they cannot do anything other than what was told to me. There is no way to fix the muscle. I've spoken to many great colon/rectal surgeons here in New York, and they all give me the same scenario. If they can just remove some of my large intestine, then I may not have to go through all the pain that I go through anymore. I'd rather have that done, and then maybe wait on the prolapse and see what happens. I know that this is a very serious surgery, and I may not do very well, but unfortunately it needs to be done. My intestines are extremely redundant, and they are twisting and strangulating, causing me severe pain. Nothing else can be done in that area, except to remove some. I've been seeing doctors for this for very long time now, so I don't want it to seem like this just all happened when I was hospitalized. It just became so much worse when I was hospitalized, because of the agony that I was in, and the bleeding. So, trust in me that I am doing everything that I can, and my family is right beside me, fighting for the best treatment. My mother will not rest until I get the best care possible, and neither will I.

I really appreciate everyone's good thoughts and kind words. I will keep you updated on the situation. I just need a few more tests done, and then I will be back to see the surgeon for another consult.

Courtenay, you can never have too many opinions, so I would really appreciate that number that you have. Thank you so much hun. :heartpink

I love you all. Thank you for being there for me. Sometimes I make the mistake of not filling you guys in on my life, because I just want to help everyone else, and not bother anyone with my problems. So, when I finally post about something, it's usually when a severe situation has resulted, from an ongoing problem. I have had so many things going on with me and my health, but I don't like burdening anyone. I really appreciate all of you being there for me, though. I will try to talk about things more. I spoke with Andy about this a while ago. He kept reminding me that we have such a great place here to vent and talk, that I should utilize, but I told him about the problem that I have with burdening others with my problems and it's hard for me. For that, I'm truly sorry. I just care about you guys so much, and I know you all have your own problems to deal with. :sadyup

I'll let you guys know what happens. I love you all. :bighug
Title: Re: I need some good thoughts and prayers, please.
Post by: Andy Battaglia on April 15, 2007, 10:52:11 PM: Danielle,

You definitely need to get the excess intestines removed ASAP. See what happens after and how well things heal up. Wait awhile on the other decision until you've had some time to research it more and talk to other doctors. It's worth waiting to see if anything changes on its own after the surgery.

Danielle, we have such a wonderful, caring group of people here, who give so much of themselves even when confronted with huge problems themselves. Please don't ever feel that your burdening us with your troubles. It's why we're here. Knowing you have people makes so much difference.

From all of us :bighug

You got my cell # so keep me updated as much as possible. We'll all be praying for you.
Title: Re: I need some good thoughts and prayers, please.
Post by: Kathy11 on April 15, 2007, 11:08:40 PM: Hi Daniel,
It is sad to hear about your ordeal and it must be very painfull to be in your situation.I am so glad your parents are supporting you and we are all wishing for an effective solution .
One of my option to you is to consider every aspect and possibities, before you opt for the removal of your large colon.
We are all here for you for support ,sometimes when we think we can't bare any more pain we surprise ourselves with our own strength."Having said that" I think you are the strongest of us all .
Don't Panic, you are young full of hopes and dreams and you will get better,Keep faith .
I 'm Praying for you and all of us. :hugfriend
Kind thoughts
Kathy :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
Title: Re: I need some good thoughts and prayers, please.
Post by: Manal on April 15, 2007, 11:52:01 PM: Quote from: Andy on April 15, 2007, 10:52:11 PM
Please don't ever feel that your burdening us with your troubles. It's why we're here. Knowing you have people makes so much difference.
:happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :happyyes :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug :bighug

Manal
Title: Re: I need some good thoughts and prayers, please.
Post by: jade on April 16, 2007, 01:50:45 AM: Hi Danielle,

We are all by your side. You have been through so much as you have said, but this is yet another challenge. Do not be disheartened. Take courage and consult as many specialist doctors as possible before you take an informed decision. May the decision that you take be the best one.

I believe that taking ladyfingers everyday may help you(ease your going to the bathroom). But of course before taking these, ensure that you are not allergic to that vegetable and that it would not harm you.

Keep us posted. Never think that you are burdening us. Share your problems whenever you feel like it. We would be here for you.

Take care.
Jade
Title: Re: I need some good thoughts and prayers, please.
Post by: Sharmin on April 16, 2007, 04:09:07 AM: Hi Danielle,

All of the love and good will that you give to everyone else, its time for us to share it with you. We care for you so much and we hope for the very best for you!

:hugfriend Sharmin
Title: Re: I need some good thoughts and prayers, please.
Post by: Christine Mary on April 16, 2007, 04:29:25 AM: Dearest Danielle, :hugfriend

I am so upset that you are dealing with THIS crap now!!! (no pun intended) !! :rotfl

But... seriously, you have had such a great impact on my life regarding Lauryn and getting us through so much. You have to be strong and think positive, like you've told me.. There HAS to be an alternative solution to this. I mean they can clone animals,but they can't fix this? I am angry and frustrated because, no one deserves this... especially YOU! :tantrum Please get another 100 more opinions.
We are praying for you more than ever. I don't know anything about this medical situation, but as your friend and "sister" I am here for you if you need me. :heartpink
Title: Re: I need some good thoughts and prayers, please.
Post by: §ãJ¡Ð ساجد on April 16, 2007, 05:35:14 AM: Dear Danielle,

I can't believe that you are going through all this. :-\

You are constantly having in health issues one after another. My heart really goes out to you. I pray that you find an option that is most effective and painless one and one which will solve your troubles.

We all are here for you as you have been for us.

I wish we can be there when you go through the treatment but, till then accept my well wishes:

Get Well Soon!
(http://i172.photobucket.com/albums/w29/sajid_rauf/picture.jpg)

We will all be praying for you. :pray

May God bless you and ease your pain.

Take care, Peace!

Edit: noticed that the image wasn't showing. Moved to photobucket
Title: Re: I need some good thoughts and prayers, please.
Post by: Christine Mary on April 16, 2007, 07:27:53 AM: P.S.........

Danielle,

Is this problem Thal related?

If not what caused this? :dunno
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 16, 2007, 08:53:40 AM: Thank you so much, you guys. You are all so wonderful. I promise that I will get all the opinions that I need and will let you guys know what is going on. :hugfriend

Christine, this is not Thal related. The only thing Thal-related that is making it worse, is that the iron overload causes constipation, and it's not helping the situation. Otherwise, this is mainly a genetic thing. There are colon problems in my family, but only me and my 2 cousins have had it this bad, where surgery was needed. :-\

Thank you all for being there for me. I'm just so depressed about all this, and dealing with so much pain, that I'm losing it. :(
Title: Re: I need some good thoughts and prayers, please.
Post by: alnahrahmea on April 16, 2007, 09:03:11 AM: I also feel the same Danielle. Don't despair, just trust in the Lord. I have read in one inspirational book once that pain makes a person more kind, more gentle, and stronger. So if you feel pain then God must love you that much that He wants you to be a stronger, more kind, and a more gentle person all at the same time. Get weel soon. I will also have you in our prayers. :hugfriend

Quote from: Danielle on April 16, 2007, 08:53:40 AM
Thank you so much, you guys. You are all so wonderful. I promise that I will get all the opinions that I need and will let you guys know what is going on. :hugfriend

Christine, this is not Thal related. The only thing Thal-related that is making it worse, is that the iron overload causes constipation, and it's not helping the situation. Otherwise, this is mainly a genetic thing. There are colon problems in my family, but only me and my 2 cousins have had it this bad, where surgery was needed. :-\

Thank you all for being there for me. I'm just so depressed about all this, and dealing with so much pain, that I'm losing it. :(
Title: Re: I need some good thoughts and prayers, please.
Post by: ThalGal on April 16, 2007, 02:08:57 PM: Hi Danielle,

I will keep you in my prayers. :bighug :bighug
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 16, 2007, 07:33:45 PM: Quote from: alnahrahmea on April 16, 2007, 09:03:11 AM
I also feel the same Danielle. Don't despair, just trust in the Lord. I have read in one inspirational book once that pain makes a person more kind, more gentle, and stronger. So if you feel pian then God must love you that much that He wants you to be a stronger, more kind, and a more gentle person all at the same time. Get weel soon. I will also have you in our prayers. :hugfriend

Thanks, Alnahrahmea. I sure hope that's the truth. I have a lot of faith in the Lord, so I know he will do what's best for me, even if I'm not meant to be on this earth for long. I just have way too many problems and it's hard to deal with at times. :(

Thanks, ThalGal, and everyone else for your wonderful thoughts and prayers. You guys are the best. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 16, 2007, 07:38:21 PM: Quote from: Andy on April 15, 2007, 10:52:11 PM
Danielle, we have such a wonderful, caring group of people here, who give so much of themselves even when confronted with huge problems themselves. Please don't ever feel that your burdening us with your troubles. It's why we're here. Knowing you have people makes so much difference.

I know, Andy. This is the best group I have ever encountered anywhere. I just feel bad, because I know that everyone here has problems of their own. It definitely makes a difference to know that I have you guys here, and knowing how much you all care. I am going to try harder to express myself and seek help from all of you. It's just something that I'm not used to, because I'm so used to helping everyone else in my life. It just makes me feel better to be there for others. I don't feel useless when I'm able to do that. :-\

I will definitely keep you updated. If I end up back in the hospital without notice, I will message you. As of right now, the new surgeon who requested all my records, cannot see me until next Monday. I want to see what this surgeon says, while I'm looking for others. Lovely Courtenay gave me some phone numbers, and I'm going to try them as well.

Thank you all for being there for me. You have no idea how much it means to me. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: ThalGal on April 17, 2007, 07:55:27 PM: Hi Danielle,

By nature you are a nurturer and a cheerleader :cheer. We are here to support you, as you (and Andy) are here to support us, in good time as well as bad. We all share a common bond.

Let us be your cheerleaders!!!
:stars :stars

xoxo
Title: Re: I need some good thoughts and prayers, please.
Post by: jzd24 on April 19, 2007, 03:22:40 PM: Danielle,
I just read about your troubles and I am so sorry you have to go through so much pain. You have been such a help and inspiration to so many, and now we want to give it all back your way! Severe, continuous pain is so debilitating and wears you down mentally as well. I'm sending you some strength and love, and hope this gets taken care of soon. You have 100% support from all of us.
I just looked at the photo gallery and the photo of you with the dolphin is so wonderful. Think of those good times to help you through. My hope is that you will be swimming with the dolphins again and feeling better. love, Jean
Title: Re: I need some good thoughts and prayers, please.
Post by: Hallu on April 19, 2007, 05:29:36 PM: Hi Danielle,
I'm so sorry that I missed your post earlier ... on my god, you are going through so much pain...I pray to god that he gives you all the strength and good luck to deal with this.
I'm at total loss of words and hence won't write more... but I would like to tell you that I'm worried for you and will keep you in my thoughts and prayers.

Wish you all the luck,
Hallu
Title: Re: I need some good thoughts and prayers, please.
Post by: AstonDialo on April 20, 2007, 08:20:38 AM: I can't believe the news today
I can't close my eyes and make it go away

I want to run, I want to hide
I want to tear down the walls that hold me inside
I want to reach out and touch the flame
Where the streets have no name

I want to feel sunlight on my face
See the dust cloud disappear without a trace
I want to take shelter from the poison rain
Where the streets have no name...

Danielle,

I just don't know what to say..
I just wish we could all wake up from this nightmare.
I think many would agree with me on this one...
I just wish it went from 2006 straight to 2008.
I just wish 2007 never came.

My thoughts and prayers are with you.

Take Care
Title: Re: I need some good thoughts and prayers, please.
Post by: vic on April 20, 2007, 12:54:26 PM: danieele,
it just feels so unfair at times but i believe and i do mean this - we are given what we can deal with and you must be one tough cookie.

you have always been so positive and helpful and never going on about your problems so now is the time to vent.

you will get through this and you will be better for it at the end. just like i tell christian he has what he has because he is special and so are you so keep us posted and keep a positive attitude about it all.

i actually thought about you today because i read this post earlier in the week and i felt odd writing as we dont 'really know each other' but i was driving christian to hospital and gwen steafani's song came on- the one with the 'eeeoooo ' i dont know if you know it- its on the radio here all the time. it says "life's getting a little crazy'

does anyone know the song i'm talking about????

anyway it made me think of some one in another country whom i've never met going through a hard time.

cheers vic
Title: Re: I need some good thoughts and prayers, please.
Post by: Siena on April 20, 2007, 01:09:34 PM: Danielle, you are in my prayers. May everything be sorted out as soon as humanly possible for you so that you can be well on the way to recovering from all this. Please send a prayer out to St. Jude (he is the patron saint of desperate causes) and I believe in him wholeheartedly. Also St. Filomena. Believe in their power to heal - they have been of such great help to me and continue to do so. Sending you warm hugs from the other side of the world (Australia). Bless you my friend.....love Siena xxx
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 20, 2007, 05:08:35 PM: Thank you all so much. You guys are great. :wub

Jean, that's exactly what I do. I keep thinking about the good times with my loved ones, and the vacations ahead. I'm trying to keep my head up and smile, just for being alive. It's just hard sometimes when you are always in pain. :-\

AD, you have gone through so much pain this year, and I'm so sorry for that. :( Sometimes I feel that way as well, where I just wish we could've skipped a year here and there ... but I guess life goes way too fast as it is. :sadyup

Vic, I know what song you are talking about, because it's one of my favorite songs. :biggrin It's called The Sweet Escape. :happyyes I understand why you would feed odd writing to someone you hardly know, but we are a big family here, and we are all going through the same things in one way or another. So, it's ok to feel that way, but it's still nice to know that you all care, and are there. :)

I just want you guys to know, that even thought I'm not answering each one of you individually, it doesn't mean that I'm not reading each and every one of your posts. Each one of you guys touch my heart in so many ways, you will never understand. I love you all. Thank you so much for your thoughts and prayers. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: alnahrahmea on April 22, 2007, 12:01:59 PM: Ey, Danielle never say you are not meant to be in this earth for long. We were born and we were meant to live life to the fullest. Problems are just but unpaved roads we pass through in life. No matter how hard they are, God will never give something that we cannot thread. Trust that God made you to live a life fully lived. :smiley

I hope you are doing much better now. God Bless! :hugfriend

Quote from: Danielle on April 16, 2007, 07:33:45 PM
Thanks, Alnahrahmea. I sure hope that's the truth. I have a lot of faith in the Lord, so I know he will do what's best for me, even if I'm not meant to be on this earth for long. I just have way too many problems and it's hard to deal with at times. :(
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 24, 2007, 01:31:55 AM: I just wanted to update a little, and let you guys know that today I got an appointment with one of the top colon/rectal surgeons who actually takes my insurance! I'm so happy about this. I'll have to wait a little while to see him, but it's only another two weeks away. It's also at one of the top hospitals around. It's Cornell University in NYC. Someone that I know recommended this doctor, because her son had colon surgery from this group of doctors, and said that the whole team is awesome. I also know from others that these doctors are some of the best around, but I didn't think they'd take my insurance! :happydance

So anyway, I decided not to see the guy that I was supposed to see today, because he is affiliated with one of the worst hospitals around (IMO), and I refuse to have surgery there. I used to get blood transfusions and surgeries at this particular hospital, and was almost killed several times, so there is no way in hell that I'm going to have colon surgery there. If I had known that this doctor was affiliated there, I would have never even made an appointment with him. :mad

So, wish me luck! I really hope that this guy gives me some sort of hope. I'd still appreciate all the prayers/thoughts you can give, if possible. I'm so scared of what he is going to tell me, because this is one of the top hospitals in the country, and if he gives me bad news, then it's all downhill from there.

Thanks, you guys! :kiss

And thank you, Alnahrahmea. I know that we are meant to live life to the fullest, and believe me, I try. But sometimes it's just difficult. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: Andy Battaglia on April 24, 2007, 01:41:08 AM: Danielle,

That's great news! Cornell is one of the top hospitals anywhere, period! I am so relieved you'll be having your surgery there. I think the doctors there also are often quite knowledgeable about thal.

Whatever the doctor tells you, we're ALWAYS here for you. :happyyes
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 24, 2007, 02:17:05 AM: Thank you, Andy! :hugfriend I'm so relieved, because I didn't want some doctor who didn't know what he was doing, and then having all these residents working on me in the OR with him. That's what this particular hospital does all the time, and it aggravates me. :mad

I cannot believe they are taking my insurance. I'm so shocked and happy about it. Cornell is such an awesome hospital, and you are right, they are knowledgeable about Thal. There are top doctors there that actually specialize in Thal research. Hopefully, this is God's way of telling me that everything will be ok, even though I am still extremely frightened. I know that things can still go wrong, but I feel much better being taken care of by an awesome hospital with awesome doctors. :biggrin

I'm seeing them on May 9th. Hopefully I will be able to deal with this pain for a while longer, but I'm sure it will be worth it, instead of seeing some guy that possibly doesn't know what he's doing. These doctors that I'm seeing specialize in colon/rectal surgeries, and have the top of the line tests over there as well. I hope everything goes well. Thank you for your support, Andy, and everyone else! :bighug
Title: Re: I need some good thoughts and prayers, please.
Post by: Sharmin on April 24, 2007, 03:34:28 AM: Hi Danielle,

I'm glad that you will get some new perspective on your situation. I hope that they give you more favorable options. I know that you have a great attitude toward life and it has been contagious for so many people. I hope that our prayers and good thoughts help you cruise through this situation.

Love,
Sharmin
Title: Re: I need some good thoughts and prayers, please.
Post by: AstonDialo on April 24, 2007, 04:24:32 AM: I told ya so..He he he

Danielle,
That's great news.
I know exactly where ya coming from.
We get the same sort of thing happening here too within the public hospital system.
I'm sure it goes on in every public hospital around the world.
In the ER, we get seen by med students and/or registrars who report to their seniors by phone for advice.
And that's the frustrating thing about these public hospitals..Seems like you get information from the mail man.
It's always good to see another Dr privately for a second opinion.
You tend to trust your life in the hands of med students or registrars.
Not good considering you know more than them.
And with today's Dr's, their attitude sucks.
They need to go back to school and learn PR skills and other people's religions.
Their attitude towards patients needs to change.
I have never came across a Dr who is willing to drop their guard and listen to my suggestions.
They don't like us patients telling them their job, when we're simply just giving them a run down of our history and our symptoms, and past experiences with the same problem that's occurred in the past.
I know Dr's can't hook us up to a computer to carry out a diagnostics check to see what's wrong with us, just like a mechanic does on cars..But the vital information given by the patient to the Dr must mean something.
Instead, we're treated like mushrooms.
They put us in a dark room and feed us Bull sh*t.

Take Care Danielle.

Regards
AD
Title: Re: I need some good thoughts and prayers, please.
Post by: §ãJ¡Ð ساجد on April 24, 2007, 05:17:25 AM: Danielle,

I'm so happy to know that you will be getting better treatment.

:jumping

Take care, Peace!
Title: Re: I need some good thoughts and prayers, please.
Post by: alnahrahmea on April 24, 2007, 06:18:13 AM: That's good news Danielle! Keep it up! :cheer :hugfriend Those are signs of God's little miracles. Too little to be appreciated, but God works in little ways often rarely felt. Any comfort that he gives is a sign that God is just there carrying you at your worst and he never leaves you alone even when you feel everything is full of bullshit around you. :smiley God is good! :wink

Quote from: Danielle on April 24, 2007, 01:31:55 AM
I just wanted to update a little, and let you guys know that today I got an appointment with one of the top colon/rectal surgeons who actually takes my insurance! I'm so happy about this. I'll have to wait a little while to see him, but it's only another two weeks away. It's also at one of the top hospitals around. It's Cornell University in NYC. Someone that I know recommended this doctor, because her son had colon surgery from this group of doctors, and said that the whole team is awesome. I also know from others that these doctors are some of the best around, but I didn't think they'd take my insurance! :happydance

So anyway, I decided not to see the guy that I was supposed to see today, because he is affiliated with one of the worst hospitals around (IMO), and I refuse to have surgery there. I used to get blood transfusions and surgeries at this particular hospital, and was almost killed several times, so there is no way in hell that I'm going to have colon surgery there. If I had known that this doctor was affiliated there, I would have never even made an appointment with him. :mad

So, wish me luck! I really hope that this guy gives me some sort of hope. I'd still appreciate all the prayers/thoughts you can give, if possible. I'm so scared of what he is going to tell me, because this is one of the top hospitals in the country, and if he gives me bad news, then it's all downhill from there.

Thanks, you guys! :kiss

And thank you, Alnahrahmea. I know that we are meant to live life to the fullest, and believe me, I try. But sometimes it's just difficult. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: marientina on April 24, 2007, 06:36:40 AM: I hope all this is resolved and you get better soon! Just to let you get your hopes up, one of the people I know at work had colostomy because he almost died from ulcerative colitis and after a long recovery, he is so much better now. He was miserable before that and he did another emergency operation halfway, but he looks and feels so much better. The recovery is long but it is worth it. Good luck and stay mentally strong. Life is long, long, long and full of obstacles. Expect nothing but obstacles and be strong. Sometimes we trip and smash our face, but we get up and go on. I have had 3 concussions -- I know ;)
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 24, 2007, 07:51:11 AM: Thank you, everyone! :hugfriend You guys are the best, and thank you for making me laugh and smile. Some of the things that you guys say crack me up and put me in a better mood. :rotfl

I'm still laughing at this, AD ... "Instead, we're treated like mushrooms. They put us in a dark room and feed us Bull sh*t." :crackup

And some of the other things that you guys have said are making me laugh as well. Thank you for your care and comforting words. It makes me feel much better. :wub
Title: Re: I need some good thoughts and prayers, please.
Post by: AstonDialo on April 24, 2007, 09:43:02 AM: :hugfriend That's why we're here. :urwelcome
We're all here to help each other.

You've just put a smile on my face..Just hearing you laughing. :crackup :grin
Keep your chin up Danielle.
Don't let it drag you down.

Laughter is the best medicine. :biggrin
I've run out of tissues to be crying. :crackup
:rotfl
Title: Re: I need some good thoughts and prayers, please.
Post by: Manal on April 24, 2007, 12:14:54 PM: Danielle, I am so happy to learn about the good news. I feel that things will turn to be better. Rememer that God gives us what we can endure. Good luck and keep us updated. You are always in my prayers
Manal
:hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: Zaini on April 24, 2007, 05:50:13 PM: Hi Danielle,

i am happy that you are getting better option of treatment,, remember that we all are praying for you,,,i'll pray that 9th may will come with a great news for you.

TAKE CARE. :hugfriend :hugfriend

ZAINI.
Title: Re: I need some good thoughts and prayers, please.
Post by: jzd24 on April 25, 2007, 12:06:28 AM: Danielle,
I am so glad you will be going to Cornell. That is really good news, and they take your insurance! Yea! Will still be thinking about you and praying. Love, Jean
Title: Re: I need some good thoughts and prayers, please.
Post by: blueskies on April 25, 2007, 01:24:39 PM: That's great news, Danielle! I hope the dr at Cornell is able to help you with much more positive results than the other dr predicted.

If you don't mind me asking, which hospital is the worst? Strong, Highland, Unity? I ask because I live in the same area that you do.
Title: Re: I need some good thoughts and prayers, please.
Post by: Andy Battaglia on April 25, 2007, 01:49:17 PM: It depends what you're being treated for. Strong is an excellent hospital in many ways, and has the most thal-familiar hematologists in the area. It is definitely the hospital of choice for thal care in this area. But Strong is also a teaching hospital, which means that often your care is in the hands of students and residents. I had surgery there, and would probably opt for Unity at Park Ridge Hospital if I had to have another surgery.
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on April 26, 2007, 04:21:43 AM: Thank you all so much! You guys give me such a happy feeling, knowing that you all care and that you are there. :hugfriend

I got two units of blood today (well, yesterday, it's after 12am here lol), and I still feel like crap. My hemoglobin was 8 before my transfusions, and it was because of all the bleeding I was having. I'm actually surprised it wasn't even lower than that. I may need to go back next week for another unit or two. I just feel so tired. :-\

Aston, I'm glad that I was able to put a smile on your face. I know that you have been so upset lately, and I completely understand why. I feel good knowing that you cracked a smile, even if it was for 2 seconds. :hugfriend

Blueskies, I don't know anything about those hospitals, as I'm in Long Island. Andy definitely knows about them, though, as you can see. :biggrin

Hugs to you all, and thank you soooooooo very much for being there for me, and for your kind and loving words. You have NO idea how much they mean to me. I love you guys. :wub
Title: Re: I need some good thoughts and prayers, please.
Post by: Kathy11 on April 26, 2007, 09:45:24 PM: Hi Danielle.
I pray that you feel better after you had your two unit of red wine( :biggrin)
Take care :flowers :flowers :flowers :flowers :flowers :flowers :flowers
you are a champion and we are happy you are in our lives.
Kathy. : :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: ThalGal on May 12, 2007, 06:17:35 PM: Danielle,

How did your meeting with the specialist at Cornell go?
Title: Re: I need some good thoughts and prayers, please.
Post by: §ãJ¡Ð ساجد on May 13, 2007, 04:35:54 AM: Hi,

I hope everything is going on smoothly!
(http://i172.photobucket.com/albums/w29/sajid_rauf/picture.jpg)
:getwell

Take care, Peace!
Title: Re: I need some good thoughts and prayers, please.
Post by: Sharmin on May 13, 2007, 05:35:15 AM: Thinking of you! I hope you are well!!!

Love,
Sharmin
Title: Re: I need some good thoughts and prayers, please.
Post by: jade on May 13, 2007, 01:29:46 PM: Hi Danielle,

How was your appointment with your doctor? I hope he has a good solution.

Wish you well & take care
Jade
Title: Re: I need some good thoughts and prayers, please.
Post by: Zaini on May 15, 2007, 06:28:03 PM: Hi Danielle,

Hope every thing is well, but this worries me a little that you are not replying,,i wish you all the luck in the world,hope you are doing fine and enjoying life and my worries are baseless.

love,

ZAINI.
Title: Re: I need some good thoughts and prayers, please.
Post by: Zaini on May 15, 2007, 06:44:40 PM: These are for you Danielle,though i don't know how to fix them in here this post rather then attaching them :wah,

YOU DESERVE THEM,

ZAINI.
Title: Re: I need some good thoughts and prayers, please.
Post by: Manal on May 15, 2007, 10:23:44 PM: Where are you Danielle????????????????????

Manal
Title: Re: I need some good thoughts and prayers, please.
Post by: Andy Battaglia on May 15, 2007, 10:30:23 PM: I messaged her a couple days ago but no answer, so I just tried again. If I hear anything I will let everyone know immediately.
Title: Re: I need some good thoughts and prayers, please.
Post by: Andy Battaglia on May 15, 2007, 11:49:22 PM: Danielle messaged me back. She's still in a lot of pain and feeling down. She still hasn't had the surgery and has had to deal with a very rude surgeon. Tomorrow she is seeing a different surgeon. She hopes to be back around soon and expressed her thanks for having such good supporters in this group.
Title: Re: I need some good thoughts and prayers, please.
Post by: Manal on May 15, 2007, 11:55:17 PM: Thanks Andy. I am wishing her all the luck tomorrow.
I will pray for her

Manal
Title: Re: I need some good thoughts and prayers, please.
Post by: AstonDialo on May 16, 2007, 12:34:04 AM: Rude surgeon?
More like a rude butcher.

Pardon my french, but what is it with these f*ckin doctors these days..
Their heads are too far up their Arse, it's not funny.
I'm so sick of it.
Must be their ego.
Seems like doctors are more interested in their pay slips than caring for their patients.

Whatever happened to those old fashioned doctors who cared about their patients, and not their pockets?

Patch Adams where are ya?

All the best Danielle..
Title: Re: I need some good thoughts and prayers, please.
Post by: Andy Battaglia on May 16, 2007, 01:21:41 AM: AD,

I know that many doctors do care, as witnessed by the many fine doctors who work with thals and do incredible things with treatments that have greatly extended the lives of modern thals. And I feel that my wife's surgeon, a fine doctor originally from Sri Lanka who has the Golden Rule hanging as an art print in his waiting room (as soon as I saw that I knew he was the right doctor), is both a caring and expert surgeon. However, my own experience was quite the opposite and relating the experience to Lisa was one of the things that provided some early bonding for our friendship. Our hospital "war" stories that took place at the same hospital were a topic of conversation at our first meeting and was one of the things that led us to quickly become close friends. I feel that my surgeons did their best to kill me but I was too stubborn too die. :banghead During my 18 day stay for a perforated appendix, I was accused by one doctor of staying in the hospital for drugs! My fever every night rose above 103 F and I melted bag after bag of ice on my head trying to cool off, yet somehow this doctor thought I was faking it. I guess I was also faking the non-stop gunk that they pumped out of my stomach. One week after my initial surgery to remove my appendix, I was sicker than ever and I was being accused of wanting drugs! For the record, I found morphine to be a drug with no possible recreational use and also, weak pain relieving ability. It was not until my brother called the hospital and gave them a good hot-head paisan yelling before they decided it was time to act. That afternoon I was taken for a CT scan and an abscess was found in the spot where the appendix had previously been located. This was the same spot that I had been telling them hurt like hell and was causing much pressure. Now, for an abscess to form, either material from my intestines was left inside me to fester or the appendix wound was not properly sutured when closing leading to leakage. I had full blown peritonitis and went through a second surgery, where in addition to the appendix wound being re-opened, I was also cut from the top of my navel 4 inches down, and into my abdomen so my intestines could be inspected for any further abscesses. After the surgery I was left with a 4 inch long scar an inch deep, and open! It took two months to close and made for some very limited activity along with the severe anemia that I was left with because after the second surgery I was left with a bleeder for 12 hours before anyone bothered to change my dressing! My hematocrit upon leaving the hospital was only 25, with over 40 being normal. It was my months long experience that gave me a small taste of what a thal intermedia or minor goes through every day. It also gave me great empathy for Lisa. I also had many bad experiences just being in the hospital, much of it caused by overworked and often nasty nurses. A point of interest is that later on, my surgeon was sued and was no longer allowed to practice, after he sewed a woman's uterus to her intestines. :wtf

Something is very wrong with the medical profession when so many patients have such similar bad experiences. AD, yours have been never-ending. Is there some way the medical profession could make more of an effort to show a caring and understanding face to patients? Is it really so much to ask that they show the same kind of common courtesy that I am expected to show customers in my store?!.
Title: Re: I need some good thoughts and prayers, please.
Post by: Lyanne on May 16, 2007, 07:03:25 AM: Hi Danielle! I'm so sorry to here about your condition, I wish I know what to say to ease your worries but I don't i'm so speechless to have heard about this....... but I also wish your fast recovery and you can be sure to know you will be in my prayers everyday. :hugfriend :flowers
Title: Re: I need some good thoughts and prayers, please.
Post by: Bharat on May 16, 2007, 02:33:27 PM: Danielle,

You are such a trooper and a wonderful human being. I pray that all goes well for you.

Regards Bharat
Title: Re: I need some good thoughts and prayers, please.
Post by: Zaini on May 16, 2007, 05:59:44 PM: It's so sad Danielle,I wish you all the luck in the world,you are in my prayers.

ZAINI.
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on May 24, 2007, 03:23:41 AM: Oh my gosh, you guys are the best. Thank you so much for your kind words and great concern for me. You have no idea how much it means to me, to have all of you there for me, and comforting me.

I've had two horrible weeks, and it's so much to explain. I don't even know where to begin. I promise to be back to tell you all the story. I just wanted to let you guys know that I'm ok. I'm in a lot of pain, but I'm alive, so I'm ok.

I just cannot thank you all enough. My heart is with you all, and whenever I think of you guys, I keep fighting, and will continue to fight until there's nothing left of me. There is not one idiot doctor that is going to keep me down. I have seen two other surgeons since that guy from Cornell, and I'm finally getting some answers. I'm going for three more tests next Thursday, which are the last few tests that I can possibly have done, since I've done everything else. After that, my new surgeon is going to tell me what kind of surgery he is going to perform on me. He will only know when he sees what these last few tests show. He wants to be certain, and make sure he does exactly what needs to be done.

I'll tell you the story about the loser from Cornell when I return. I love you guys. Forever and always. :hugfriend
Title: Re: I need some good thoughts and prayers, please.
Post by: AstonDialo on May 24, 2007, 05:53:00 AM: :biggrin "Right back at ya Danielle" :biggrin
:hugfriend

:bighug
Title: Re: I need some good thoughts and prayers, please.
Post by: ThalGal on May 25, 2007, 02:51:00 AM: Geat to hear from you Danielle. Sending you positive thoughts!!! :stars
Title: Re: I need some good thoughts and prayers, please.
Post by: jzd24 on May 26, 2007, 02:04:24 AM: So good to hear from you, Danielle. What is with these jerky doctors? People can be so smart but have no emotional intelligence. It makes me crazy. I hope your new one is a nice person, and I wish that you were out of pain.

I know your problems are complicated and severe, but milk thistle has helped my elimination system a lot. Maybe it could help just a teeny, little bit? I wish I could take all your pain away. Good luck with the new doctor. We're all hoping for the best. Love, Jean
Title: Re: I need some good thoughts and prayers, please.
Post by: Danielle on May 28, 2007, 09:26:52 AM: Thank you so much, everyone. I will keep you updated. :hugfriend

Jean, I was thinking about trying the Milk Thistle. I guess it can't hurt. :dunno
Title: Re: I need some good thoughts and prayers, please.
Post by: Dori on September 02, 2009, 01:11:39 PM: Quote from: Courtenay1826 on April 15, 2007, 05:03:28 PM
Oh, my sweet Danielle - :hugfriend :wah

I am so very sorry to hear of this development. Be sure to know that you are in my prayers day and night - you have been such a HUGE support for me. I wish I could sit down over coffee with you and just let you vent - I know how difficult the feelings are, when surgeons don't give you much options, etc.

That having been said, I am very upset that this is all the options that the docs in NYC are giving you. There is a WONDERFUL doc/surgeon here in Syracuse named Dr. Jaswant Bal - he trained first in India (he is familiar with thal and the degenerating effects on the organs) and he is an OB/GYN and reproductive/ureter and colon surgeon. He fixes bladders, colons, vaginal prolapses, rectal prolapses...you name it. He helped a family friend of mine with a v. prolapse and bladder prolapse, and what he did so she maintained her bladder continence was: he took a piece of skin inside and actually "anchored" the bladder and v. canal into place. She has perfect continence now, 6 mos post op. Would you like his number? It wouldn't hurt to see if he might be able to anchor the colon to allow it to focus on maintaining continence rather than holding itself in place with its limited muscular capabilities. Would you like his number? PM me if you'd like it.

All our love,
Courtenay, Karol, and Mychael

Like you see I am reading old topics. Since I have been here I have seen only 1 active topic made by Danielle. How is she doing lately?
I wanted to ask of doctor Dr. Jaswant Bal is still a doctor and where he works...? I hope someone can give me more information.

Thank you in advance, Dore
Title: Re: I need some good thoughts and prayers, please.
Post by: Zaini on September 02, 2009, 03:51:53 PM: I hope Danielle is doing fine, :hugfriend

Dore,

About Dr Jaswant Bal,

http://www.wellness.com/dir/2381684/obgyn/ny/syracuse/jaswant-bal-advocates-for-womens-health-md

Hope this helps.

Zaini.
Title: Re: I need some good thoughts and prayers, please.
Post by: Madhavi on September 03, 2009, 07:57:17 AM: I have read this post just today, Danielle....
It is already beyond me to find words and emotions except love and good wishes!
Hope that you are in better shape now... and have met some good doctor who has 'treated' you well!
Love and luck,
Madhavi
Title: Re: I need some good thoughts and prayers, please.
Post by: Dori on September 03, 2009, 09:09:21 AM: Yes, about the subject of this topic: It's horrible, really horrible. My friend has UC. She was diagnosed with endometrisis (spelling) a few months back. Her new treatment were injects, but they don't help. Now they must (want) perform a hyster... You know, removing of the womb. It's terrible. She has no life. Why I am telling these details, maybe someone has a new idea.
I wished I could help her more. She lives in Europe and can't travel due her illness. So I don't even know of this contactinfo helps her a bit. :(

Dore
p.s. though I want to thank you Zaini. And to Danielle: I hope all is better now with you. I am glad you still have your colon. (my friend hasn't and to honest i dont understand that they really can remove that organ :S )
Title: Re: I need some good thoughts and prayers, please.
Post by: Kathy11 on September 04, 2009, 12:20:07 AM: Dear Dore,

Dont be too worried, having a hysterectomy is not too bad.
The most anoying thing is that she wont be able to get pregnant that is if she hasnt got children already, But if that is the case she has the option of adoption,And probably she will need to take hormone replacement therapy.

Hysterectomy is one of the safe surgical proceedure a woman can have.It takes about six week s to recouperate and get better, then hopefully all her problems that she is now facing in regard to her uterus should be over.
I wish her luck

Take care Kathy
Title: Re: I need some good thoughts and prayers, please.
Post by: Dori on September 06, 2009, 09:02:57 AM: Kathy,

My friend has severe ulcerative colitis. She has no life. Because of that the hysterectomy is a very scary operation - if not lifetreaten.
That's why it is absolutely not safe for her. Her doctors don't even know what they really must do. There is no medical literature found about this. She is just turned 26 year and has no children and won't ever have them now. :'(
I didn't know about the hormone replacement therapy. I'll tell her that.
Title: Re: I need some good thoughts and prayers, please.
Post by: Kathy11 on September 06, 2009, 10:40:15 AM: Dore.
Thanks for sharing about your friends conditions with me.
It sadden me to hear about her, especially at this young age,I hope she makes the right choice and do what is best for her,In the meantime I will join you in praying for her health and ours.

I hope that she is getting good medical care.
She needs a good dietician to advice her about the type of food she can or cannot have.

Ulcerative colitis if I'm not mistaken its called" chrones'disease" in many ways, it can have many bad effect on any one's body.I wish her goodluck.
Take care Kathy
Title: Re: I need some good thoughts and prayers, please.
Post by: Dori on September 06, 2009, 11:46:55 AM: Quote from: Kathy11 on September 06, 2009, 10:40:15 AM
Dore.
Thanks for sharing about your friends conditions with me.
It sadden me to hear about her, especially at this young age,I hope she makes the right choice and do what is best for her,In the meantime I will join you in praying for her health and ours.

I hope that she is getting good medical care.
She needs a good dietician to advice her about the type of food she can or cannot have.

Ulcerative colitis if I'm not mistaken its called" chrones'disease" in many ways, it can have many bad effect on any one's body.I wish her goodluck.
Take care Kathy

Thank you Kathy,

Sadly Crohn's is a different colon disease. It's less painfull then UC. With UC you got a colon full of ulcers. To be honest, I dont know how, but they took their whole colon out. I dunno about UC but Crohn's is related to arthrose (sp). and reuma.

:hugfriend

Dore
Title: Re: I need some good thoughts and prayers, please.
Post by: Kathy11 on September 06, 2009, 09:39:33 PM: Thanks Dore,

I hope this web site help your friend with some info.http://www.medicinenet.com/ulcerative_colitis/index.htm.

Kathy :hugfriend