My Missing Month

Joefnh · Post by **Joefnh** » Fri Jul 18, 2014 4:55 pm

Thanks again for all of the words of encourament, your notes have been such a great source of encouragment.

Zizzle I had a feeding tube put in and it was a liquid diet with the tube and I'm sure some of the hydraton through the IV's. In looking over the notes I had 7 IV lines hooked up to me....Zizzle I was fully unconscious during that time and really do not remember basically the first 15 or 16 days. They took the feeding tube out on day 20. Overall MY GI system was in a total state of chaos with all of the antibiotics and foods that I am not used to and am sure were not trul GF, SF & DF.

THings are settling down now that I am back to eating own foods etc...

Joe

Joefnh · Post by **Joefnh** » Fri Jul 18, 2014 5:25 pm

Tex I saw you had a post up asking the same question as Zizzle, but that post disappeared.

As mentioned, and I think unlike your experience with the ventilator, I was totally knocked out for those 13 days (I was given propofol, fentanyl and a drug to induce amnesia, not sure of the name) , and really do not remember a thing for those 2 weeks. I do have hole in my side where the feeding tube was put in. The original intention and their fear is that i was most likely going to have a tracheostomy with a breathing tube surgically put in my throat below the voice box. Basically the 'rule' they have is no more than 14 days on the ventilator with the tubes in the lungs after that they put in the breathing tube through an incision in your neck hooked up to the pump. As part of that they chose the feeding tube put in through my side right into my stomach. Initially I had the nasal NG tube going down into my stomach.

The good news is that I did not need a tracheostomy and could eventually eat regular foods.

Post by **tex** » Fri Jul 18, 2014 5:41 pm

Hi Joe,

You answered Zizzle's question before I could finish writing my post, so I didn't see much point in leaving my post up there, especially since you were using a feeding tube, which wasn't the case for me. But since everyone reading this will now wonder what the heck I said, (and why I felt obligated to remove it, LOL), here's a copy of that post:

Zizzle wrote:Joe,
I'm so glad you're home!! Question about the food...how did they nourish you during the 13 days you were sedated and on the ventilator?

I'm curious about that also, because when I was in a similar situation after my last surgery, they expected me to eat regular food (that is, regular GF food, such as chicken, rice, etc.), and it didn't work for me. With surgery on your guts, they don't allow you to eat for a day or 3, because your digestive system completely stops. For at least the first day after the surgery, I ate nothing (not even any water). I'm not sure whether it was the second or third day (the sedation kind of messes up one's ability to accurately judge time) that they allowed me to have some water and liquid foods, but after that, they expected me to be able to eat normal solid food.

Either the first or second time I tried that, I choked on it, and I coughed up the NG tube and the ventilator tube. Trying to eat with that stuff in the way was rough. Fortunately I managed to cough up whatever was blocking my windpipe (which surely didn't help my stitches any), but they wanted to stuff the ventilator tube down me again, which I argued against. The only way I was able to get the doctor to agree to leave the ventilator tube out, was to agree to take a PPI each day (supposedly to prevent me from choking on my own vomit, as the nurse put it), so I caved in and took it. Luckily I was able to continue breathing on my own, because eating was just plain hell with that tube in the way.

So Joe, how in the world were you able to do that for so many days?

Tex

Thanks for responding anyway — you're faster than I am.

Tex

Lesley · Post by **Lesley** » Fri Jul 18, 2014 8:29 pm

I was so sure I posted here, but it seems I didn't.
I hope you are going from strength to strength. Who is with you? Helping with food etc? How is Nurse Nestle?
Next pictures from you - I hope they will be of you sitting in the garden with Nestle next to you, looking like the old you.

HockeyMom · Post by **HockeyMom** » Mon Jul 21, 2014 8:00 pm

Joe-
I'm so glad to hear you are home and healing. I myself am one of those evil physical therapists! Just keep taking steps in the right direction.....no matter how small those steps are they add up.

HockeyMom

mbeezie · Post by **mbeezie** » Tue Jul 22, 2014 5:08 am

Joe,

Sad to hear about the health struggles you have been enduring. Glad to hear you are at home and feeling better.

Hugs,

Mary Beth

Zizzle · Post by **Zizzle** » Tue Jul 22, 2014 10:31 am

Regarding the feeding tube, I wonder if those of us with many food intolerances/allergies can have an advanced directive requesting a hypo-allergenic elemental liquid diet in the event we are unconscious with a feeding tube? Is this even an option?

Joefnh · Post by **Joefnh** » Tue Jul 22, 2014 12:05 pm

Zizzle you bring up a good point. I do have an advanced medical directive and durable power of attorney with a trusted individual. In that document the dietary issues are addressed as well as many other medical "what if's"

Certainyl when you are unconscious you cannot advocate for yourself and it is important to have a trusted advocate and to have your concerns andyour treatment 'wishes' clearly spelled out. Any attorney can help put those documents together and I would highly reccomend it. I am in the process of updating my medical proxy and DPA.

Zizzle you brought up an important point that many have not thought of

JLH · Post by **JLH** » Tue Jul 22, 2014 12:59 pm

We are just about to make new wills and this is certainly something to think about adding.

Zizzle · Post by **Zizzle** » Thu Jul 24, 2014 10:15 am

Joe,
MG is in the news today. Check it out:

New research finds pathogenic connection between autoimmune disorders and cancer

Autoimmune disorders may share certain pathogenic mechanisms with cancer, according to a new report by George Washington University (GW) researcher Linda Kusner, Ph.D., published in PLOS ONE on July 22.

http://medicalxpress.com/news/2014-07-p ... ancer.html

"

We found that humans with myasthenia gravis also express survivin in autoreactive lymphocytes," said Kusner, assistant research professor in the Department of Pharmacology and Physiology at SMHS. "We found these cells to be part of the dysfunction underlying the autoimmune disease."

Using a vaccine technique, the research team was able to eliminate the survivin-expressing cells and demonstrate improvement in the animal models with myasthenia gravis. Kusner's laboratory will continue to work to improve the inhibition of survivin as a treatment and one day bring survivin targeted treatment to patients.

"This study opens a new therapeutic approach for myasthenia gravis, as well as other autoimmune disorders," said Kaminski. "Conventional therapies may improve the disease, but have numerous complications. This discovery may lead to a viable treatment option for the millions of American suffering from these disorders."

MBombardier · Post by **MBombardier** » Thu Jul 24, 2014 10:18 am

Joe, I am so glad that you are better and home now. I thought of you when I read this article this morning:

http://www.sciencedaily.com/releases/20 ... 142411.htm

It brings hope for new treatments for MG.

I hope you continue to improve. I will pray for you. :bigbighug:

Post by **tex** » Thu Jul 24, 2014 11:00 am

I've been researching this association for my book, and it appears that the VDRs play a vital role in this issue. It seems strange that these articles don't even mention that connection.

Tex

Joefnh · Post by **Joefnh** » Fri Jul 25, 2014 9:23 pm

Thanks Lesley, Hockey Mom, Cory, Brandy, Joan, Mary Beth, Marliss, Tex & Zizzle and to many many more members here for all of the wonderful cards, emails and notes that I have received, they have been a great morale booster.

Zizzle it is known and to some degree feared that MG often develops as a result of a cancer (detected or not) and that those with MG have a higher risk of developing cancer. I am not sure what the rates are, but it is a point of discussion on the support group I am a member of. Thanks for the article, it explains why the increase in cancer rates exist, to date I had not found a good explanation. I was unaware of the auto-reactive lymphocytes and wonder if that plays into the Crohn's and MC?? Any thoughts on that Tex?

Marliss thanks for that article, I was unaware of this research, if that can be shown to be effective, safe and effective in trials that would be incredible not only in MG, but in other AI diseases as well.

Tex, what are VDR's ??

Post by **tex** » Fri Jul 25, 2014 9:55 pm

Joe wrote:I was unaware of the auto-reactive lymphocytes and wonder if that plays into the Crohn's and MC?? Any thoughts on that Tex?

As far as I'm aware, the term "auto-reactive lymphocytes" simply refers to T-cells that respond to specific antigens that are associated with AI diseases. IOW, the term refers to T-cells that cause AI syndromes. For example, multiple sclerosis (MS) is an autoimmune disease mediated by auto-reactive T lymphocytes that are specific for myelin antigens.

Joe wrote:Tex, what are VDR's ??

Vitamin D receptors. Here's a link to a discussion about them:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=19652

Tex

JoAnn · Post by **JoAnn** » Sat Aug 02, 2014 4:50 pm

Hi Joe, I've been AWOL from the board for awhile and had no idea you have been going through so much. I'm glad you're home and hope things will only get better for you. You have always been a warrior and an inspiration to all of us here. I'm glad you have your Nurse Nestle to help you get through the tough times. I have a golden retriever named Sadie who seems to have that special extra sense and knows when I need extra comfort and support. Sending you healing thoughts and prayers for a complete recovery. Love JoAnn