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I Am Too Complex Case For My Doctors


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8 replies to this topic

#1 Kamlesh

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Posted 09 November 2007 - 07:15 PM

I feel fortunate to have very excellent doctors locally here in East Bay, California – specifically Rheumatologist, Surgery, GI and Pulmonary specialists. As many of you know that I am exploring Nissen Fundoplication or partial wrap to help reflex related syndromes such as interstitial lung disease, severe cough, etc.

All four doctors are extremely cautious about the surgery and have suggested I am too complex case for them and I should seek help from UCSF (University of California at San Francisco). I am really happy to see sincerity and passion from all my doctors.

I have seen Dr. Jeff Golden (Lung specialist), and Dr. Kari Connoly (Rheumatologist) at UCSF. Both of them are wonderful doctors. Dr. Jeff Golden has been suggesting me to explore surgical option as stomach fluid is damaging my lungs. I am planning to see Dr. Marcos Patti at UCSF specialized in such surgery end of the month.

I find myself fortunate to have institution like UCSF only 40-50 miles away.

But, I am really sad to learn I have severe health issues which can only be dealt by few experts. I am really finding it difficult to accept this reality. I wish more can be done spread awareness of the disease.

My hats off to all Scleroderma patients! You are a real fighter.
Kind regards,

Kamlesh


#2 Peggy

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Posted 10 November 2007 - 07:21 AM

I am so sorry! I am new to this forum and have just been diagnosed. I will keep you in my thoughts! I am just beginning to find the extent of my sclero as it took a year of doctoring for them to figure out it was sclero with sjogren's, raynauds, and mixed connective tissue disorder.

Keep the fight and stay strong.

Warm hug.

Peggy

#3 jefa

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Posted 10 November 2007 - 07:47 AM

It has been a rough path for you, Kamlesh. Still, you are very lucky, considering how unique your health requirements are, to have such excellent doctors and research facilities close enough for easy access. Try to keep a positive outlook and big hugs to you.
Warm wishes,
Jefa

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#4 MicheleM

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Posted 10 November 2007 - 11:56 AM

Hey Kamlesh - It gets very hard to keep a positive attitude when every step you take is so difficult. BUT, it's the positive attitude that keeps most people going when the weaker of minds would not. It sounds like you have doctors who are not only educated but who care about you and that is a rare combination. When you are feeling low, allow yourself those feelings for a while, but then remember you are blessed to have awakened to another day. I hope that the sun shines warm on your face and makes you smile! Feel better, there are many, many people who are pulling for you! Michele
Soft hugs your way,

Michele

#5 truman

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Posted 10 November 2007 - 03:00 PM

Kamlesh:

You were one of the first wonderful welcoming individuals on this site, at a time that I was so confused and afraid.

I am glad you are on the right tract of doctors and diagnostics during this time. Please PM me at any time should you wish to.

The beautiful thing about this site, is that no matter what fear, apprehension, anger, etc. we have with our illness, someone here has had it, and will share experiences.

This is a haven that I never would have believed could be available to us, and through it, I have met friends that I now converse with on an outside basis.

Thanks to the creators and monitors of this site. Such a wonderful way to unite people with others who can relate and support.
Tru

It is what it is...........

#6 barefut

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Posted 10 November 2007 - 06:38 PM

Hi Kamlesh,

I agree with Jefa. You are lucky to have such great specialists so close to you. And your regular doctors are great to not try to get in over their heads. Sounds like you are in very good hands.

I'm sorry you have to deal with all of this. I can only imagine how hard it must be.

I'm keeping you in my thoughts.

Take Care,
Barefut

#7 jefa

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Posted 12 November 2007 - 08:20 AM

Hi, Kamlesh. Just wanted to let you know that Janey just posted an article which may be of interest to you called:

Comparison Of Surgical Approaches To Recalcitrant Gastroesophageal Reflux Disease In The Patient With Scleroderma

It suggests that a different procedure may be more effective than the wrap. Perhaps you'd like to show it to your doctors.
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#8 Kamlesh

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Posted 12 November 2007 - 09:05 AM

Janey and Jefa,
Sincerely appreciate your proactive approach.
I am trying to understand what is a difference between Fundoplication and RYGBP (Roux-en-Y gastric bypass). Looks like RYGBP is primarily used for weight loss.

I have a real difficulty in interpreting the conclusion (CONCLUSIONS: A high complication rate was seen among patients undergoing esophagectomy. Both reflux control and dysphagia rates were improved in the RYGBP group compared with fundoplication. This finding suggests that RYGBP may be an option for the primary management of scleroderma-associated gastroesophageal reflux.).
Please help.
Kind regards,

Kamlesh


#9 janey

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Posted 12 November 2007 - 09:18 AM

Kamlesh,
I know what you mean. So much of this sounds like gibberish. You get more information from the RESULTS than the CONCLUSION on this one. It's clearer also. The "results" section seems to clear it up. Here is a summary of the results.

No major complications occurred in any patient undergoing either fundoplication or RYGBP...Decreased dysphagia and improved control of reflux were observed in the RYGBP patients compared with those undergoing fundoplication.

I hope this helps.

Big Hugs,
Janey Willis
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