I need some good thoughts and prayers, please.

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Offline Andy Battaglia

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Re: I need some good thoughts and prayers, please.
« Reply #60 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?!.
Andy

All we are saying is give thals a chance.

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Offline Lyanne

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Re: I need some good thoughts and prayers, please.
« Reply #61 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
LYANNE :yahoo

Re: I need some good thoughts and prayers, please.
« Reply #62 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

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Offline Zaini

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Re: I need some good thoughts and prayers, please.
« Reply #63 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.
^*^Xaini^*^

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Offline Danielle

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Re: I need some good thoughts and prayers, please.
« Reply #64 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

Re: I need some good thoughts and prayers, please.
« Reply #65 on: May 24, 2007, 05:53:00 AM »
 :biggrin  "Right back at ya Danielle"   :biggrin
:hugfriend

  :bighug

 

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Offline ThalGal

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Re: I need some good thoughts and prayers, please.
« Reply #66 on: May 25, 2007, 02:51:00 AM »
Geat to hear from you Danielle.  Sending you positive thoughts!!!  :stars

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Offline jzd24

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Re: I need some good thoughts and prayers, please.
« Reply #67 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

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Offline Danielle

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Re: I need some good thoughts and prayers, please.
« Reply #68 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

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Offline Dori

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Re: I need some good thoughts and prayers, please.
« Reply #69 on: September 02, 2009, 01:11:39 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

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Offline Zaini

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Re: I need some good thoughts and prayers, please.
« Reply #70 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.
^*^Xaini^*^

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Offline Madhavi

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Re: I need some good thoughts and prayers, please.
« Reply #71 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
Love and luck to all...

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Offline Dori

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Re: I need some good thoughts and prayers, please.
« Reply #72 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 )

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Kathy11

Re: I need some good thoughts and prayers, please.
« Reply #73 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

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Offline Dori

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Re: I need some good thoughts and prayers, please.
« Reply #74 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.

 

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