Update & Upcoming Surgery

Hi all,

I will be having surgery next week to change my roux n Y jejunostomy to a regular j-tube and to repair two large incisional hernias from my previous surgeries. I'm doing okay and fairly prepared but I am also very scared because I nearly died the last time. I have a good surgeon and good care so I think things will be Ok. I just have a lot to live for and I hate that this disease is trying to take it from me.

I'm still TPN dependent and have progressed a bit since last year. I have a Groshong tunneled central catheter now and have never had any line infections to date. I am in the process of being evaluated and treated for probable mitochondrial disease which can cause both gastroparesis/motility disorders and neurological problems including dystonia. Coenzyme Q10 has done wonders for my symptoms and nearly eliminated my migraines and slowed my neuropathy. It is possible that I will be having a muscle biopsy done during the surgery to test for mito.

I'm still working on my dissertation, although gastroparesis has set me back quite a bit. I'm hoping to graduate in May of 2010. I know some of you have asked about my son. He just turned 4 and is a great little guy. He loves Spiderman, swimming, baseball, books, bugs, friends, and riding his big wheel.

You can keep up with me on my caring bridge site at http://www.caringbridge.org/visit/jenelle

I hope everyone is doing as well as you can be.

Love and peace,
Jen

By mphotographer
Posted June 30, 2009 at 9:03 am
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Hi Jen-
I am so sorry that you have to have yet another surgery. It was really nice to hear that you are doing better in general though and that Coenzyme Q10 helped you. Amazing that you are working on a dissertation through all of your motility issues. I sure hope you graduate next year-what an accomplishment!

You hang in there and know that I am thinking of you and sending healing thoughts. I hope the surgery goes smoothly and that you'll be back on your feet in no time. Take good care-Mphotographer

By SueBee
Posted June 30, 2009 at 10:19 am
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Hi Jen,

I have to say that you are one amazing woman! How you can juggle being a mother and working on your
dissertation during all of this is so admirable. You are a true inspiration!

Good luck on your surgery next week. There are good doctors and bad doctors so I'm glad that you've done your research and have a good surgeon now. You'll be in good hands so I'm sure it will be a much better experience this time.

It's interesting that you are being evaluated and treated for probable mitochondrial disease. My older brother, who has been progressively ill the last 3 years, has been working with a leading doctor for mito at Columbia University (NY). He has had several muscle biopsies and they feel pretty confident that he has mitochondrial disease although it's difficult to get a 100% diagnosis. I'm pretty sure he takes a "cocktail" which includes Coenzyme Q10. My other 2 siblings are also ill so it appears there is something genetic going on - maybe we all have a variation of mitochondrial disease. I was the last to fall. If you would like the name of this doctor at Columbia, who is cited in all the research my brother has done, I would be happy to get it for you.

Hang in there and best wishes,

Susan

By MarieTwinTubes
Posted June 30, 2009 at 12:13 pm
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JenD,

You'll have lots of us prayig and caring fro you as you prepare to have your surgery. I agree with the others. What an amazing educaitonal accomplishment!

Blessings,
Marie

By JenD
Posted July 3, 2009 at 4:07 pm
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Thanks for the thoughts, prayers and support. It really helps me get by. I found out yesterday that the surgeon is going to let me run my TPN bag right after surgery to aid in recovery. THey will put in a PICC line on Monday. We will bypass my single lumen Groshong to try to avoid infection. I think I'm ready now. I'm feeling a little better about things. Still nervous but I think things will go Ok. I'll update again sometime soon. I'll probably be offline after Sunday night but I'll try to post as soon as I can after recovering and My family will post to my caring bridge page. http://www.caringbridge.org/visit/jenelle

By NancyL
Posted July 4, 2009 at 9:41 am
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Jen,
You are amazing. Raising a 4 year old, finishing college and dealing with yet another surgery. And a get attitude to boot! I hope this surgery goes picture perfect and that you are healed before you know it!
Nancy

By bettemarie
Posted July 4, 2009 at 1:07 pm
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HI Jen,

I wondered if things were okay when I did not see you at Oley this year, and then today I read about your up coming surgery. You are in my prayers!

Bette

By JenD
Posted August 1, 2009 at 7:52 pm
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Thanks again for your thoughts and prayers. I survived my surgery and I'm finally home and recovering. I put up another post and you can check out my caring bridge site too.

Best,
Jen

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