Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> Support and Encouragement >> Surgery http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1353310933 Message started by Anaphylaxing on 11/18/12 at 19:42:13

Title: Surgery
Post by Anaphylaxing on 11/18/12 at 19:42:13

Having surgery to remove my gallbladder on the 28th if anyone can send some mast cell stabilizing vibes and/or prayers my way they would be VERY appreciated.

:)

More details here

http://mastcellactivation.blogspot.ca/2012/11/its-coming-out.html

:) :) :) :) :)

Title: Re: Surgery
Post by iamnotalone on 11/19/12 at 04:55:11

Ana;
Prayers on the way !!! Positive thoughts too !
:-*
lori

Title: Re: Surgery
Post by PepperPOTS on 11/19/12 at 14:07:21

Ana,

I subscribed to your blog a few months ago and have been following it with great interest. Your posts have helped normalize my experience of MCAS and I'm sure many others have and will benefit from the detailed information you share about your life with mast cell issues.

I am sending you massive amounts of mast cell stabilizing vibes! I'll be thinking about you and continuing to send good thoughts your way.

Title: Re: Surgery
Post by Doozlygirl on 11/19/12 at 18:07:34

Ana,
I am sending you lots of positive healthy vibes and prayers for an uneventful and successful surgery, and amazingly quick recovery. I too follow your blog, and just tried the microwave potato chip recipe, which was tasty.

Please let us know if you need anything, especially research, while you are recuperating. You have come so far, great job!

Thanks for all you do, you are one of my heros.

Lyn

Title: Re: Surgery
Post by Anaphylaxing on 11/19/12 at 19:18:27

Thanks so much everyone!

So kind of you!!

Lyn-- did your chips turn out? So glad you tried them! They have really made the restrictions so much easier! I have them and yam chips at least once a week. Maybe they'll be my last post surgery meal. So great that they're fat and additive free too. I appreciate all of your help along the way.

Title: Re: Surgery
Post by Doozlygirl on 11/19/12 at 19:47:21

Ana,
My pleasure.

I love the crunch of chips, but hate the sulfites, even with the "natural" chips. So this recipe jumped off the page at me. My first batch of chips were fantastic! Just perfect, not too dark, but crunchy. I used a quad sided hand grater, and the sliced were uneven, but tasty. The second time, I wanted to use up several older potatoes, used a salad shooter, and they didn't turn out so good. I overbrowned them, which was odd, since I cut down the cooking time. Unfortunately, half of this this batch had a distinctive carcinogen taste. Will have to try yams, we've got several in the house.

Hey, I read your blog and was enthralled with one particular pearl of wisdom - furnace room expediting the offgassing of several plastics. Pretty cool. I wonder what kind of furnace filter do you have? I wonder if the filter zapped up those little VOC buggers, like a mosquito zaper? What do you think happened?

What are you doing about food post op? Will they serve you your own foods?

Here's to hoping you get to eat an expanded menu by Christmas!
Lyn

Title: Re: Surgery
Post by Joan on 11/19/12 at 20:50:28

Hi Ana,

I hope all goes well. You've certainly done your homework on the subject! Will look forward to your post about how well you did after it's over! :).

Title: Re: Surgery
Post by Anaphylaxing on 11/20/12 at 13:52:01

Thanks Joan and Lyn.

Yes I am bringing in my own food and water. They know to get me to fresh air as soon as I'm able to ambulate. I hope I'm extubated quickly post op. I will bring food for 2 days. The water is a mega hassle as there are so few containers for water I can tolerate.

Some last minute glitches with the planned drugs which is stressful but trying to stay calm.

just recovering from a reaction from meeting in a room that smelled like cleaner. Just hate the hospital it kills me slowly.

I now have an industrial mask that I can tolerate (from putting it in the furnace room--I think it is the heat Lyn as I had been advised to put them in the sun by doctors familiar with chemical sensitivity) I wear the mask in the common areas. It gives me low grade symptoms but nowhere near as bad as the hospital air. The regular masks do nothing for me.

I think it is the phthalates on the plastics. I obtained Tygon from a company called Saint Gobain and it is plasticizer free and I do not react to it, but it is not yet available in medical plastics.

The wild cards are just knowing I react to all the plastics and they'll be breathing for me and running through my veins. Ick. And the meds most of which I've never had.

Debating about whether to have an arterial line. Anesthesia would like. Allergy advised against and I'm just not sure!

Bringing in my air filter into the room. They are having me go straight to an ICU room for premeds that will be washed with baking soda and water and hydrogen peroxide. Taking everything unnecessary out of the room etc

I can't WAIT to be on the other side. The severity of my reaction from a meeting only is not encouraging to say the least. Let's go premeds!!

Hoping I dont' have a POTS flare also. But I'll take whatever flares as long as I live through it. :)

Title: Re: Surgery
Post by iamnotalone on 11/21/12 at 04:56:50

Ana;
Please remember as you are drifting off right before surgery...
There are people whom you've never met in person, that are sending positive vibes, & prayers your way! You will be in our thoughts til you are "back on the other side". I hope this eases some of the stress, that you have a peaceful Thanksgiving!!!
:-* lori

Title: Re: Surgery
Post by Anaphylaxing on 11/21/12 at 07:39:56

Lori, it TOTALLY helps. I am so thankful to be ill in the age of the internet. I have drawn immense support from all of you.

I think of Lisa and her aortic aneurysm repair surgery and all of you who've faced so many challenges and I gain strength.

I pray that in another 10-20 years we will be less of an anonymous bunch!

Title: Re: Surgery
Post by PamH on 11/21/12 at 08:22:36

Ana, please keep us updated when you are up to it ofcourse! You have done so much to help yourself so stay positive! Prays for you! :)

Title: Re: Surgery
Post by Anaphylaxing on 11/23/12 at 07:23:27

Thanks Pam! I appreciate it.

Title: Re: Surgery
Post by Lisa on 11/23/12 at 17:41:24

Gosh, I hate to be offline for so long, I miss all the "fun"! Sorry, Ana my computer crashed for good and I´m only now getting back online more consistantly!!!

Yep, Ana, as you know I went through the Daddy of all surgeries and survived it and it wasn´t due to any positive thoughts or well wishing on my part which did it. I have my religious beliefs I could talk about but I won´t for I don´t think that´s necessary. However, what I do think is the MAJOR REASON why I managed to get through that surgery is due to the incredible care and planning which was done by all of the doctors and their crew who took my concerns and my disease very seriously!!! Once they began to show me their serious attitudes and their willing to listen to me I began to LET GO AND RELAX!!!

But the success of this wasn´t totally theirs, it was also mine due to all of the prior homework I´d done to get things to this point that also was a major contribution to it all.

However, this is a team project and now that you´ve done all that you possibly can to assure that things are ready, you have but one more job left to you, that of LETTING GO AND RELAXING!!!!

Ana, as you well know those pesky, rebellious, defiant and angry MCs just LOVE a party based on anxiety, strong emotions and lack of sleep!!! You have but one more job which is to get yourself into that surgery IN GOOD SHAPE!!! And that means RELAXED and WELL RESTED!! You must find some kind of means of getting your anxieties and concerns under control, making sure you are very well rested prior to your surgery. You can´t go into it tired and anxious and if that means you have some "artificial" help, meaning meds, then so be it!!!

Once I was hospitalized a week or so prior to my surgery to prep for it I told the doctors that I WANTED medication for sleeping at night. Hospitals are notorious for being horrible for a good night´s sleep - my husband jokes that this way nobody thinks it´s a hotel so that they want to stay! Well, knowing how vital sleep is to keep MCs quiet I knew that I was going to need help if I would sleep the night through, so I didn´t care what they thought about this, I asked for meds to help me sleep! I also took ear plugs to make sure any noises going on in the hallway would not waken me (nor my roommate for that matter!). This helped me to be in good condition for my surgery. And it was a good measure too cause my nerves went into HIGH GEAR from the point I was hospitalized and I was flushing just due to my own anxieties knowing what I was willingly going into. I was not to the point of needing anti-anxiety meds, thankfully, and I had my computer and was able to keep my mind well occuppied and entertained with friends and family and movies, etc. I did plenty of Youtubing and caught up on a ton of reruns of Johnny Carson and other old programs which kept me in good spirits and laughing! I didn´t have anyone to visit me since I was in Sao Paulo and 5 hours away from everyone I knew and loved, but in keeping my mind occupied and busy I didn´t allow time for my emotions or thoughts to go into the wrong direction. If I had begun to feel emotionally overwhelmed, however, I would have asked for anti-anxiety meds in a blink!!! So it was through these means that I kept my reacting at a very bare minimum and I went into my surgery IN PEACE and RELAXED and CONFIDENT for I knew my doctors were totally on board and that I had nothing more to do but to LET THEM DO THEIR JOBS!!!

So, this is your homework, from now until the hour of your surgery, this is all that you have left to do!!!! It´s not an easy task, but I can assure you, an important one!!!

I´m praying for you and am CONFIDENT that you will be FINE!!!!

All my love!!

Lisa

Title: Re: Surgery
Post by Anaphylaxing on 11/25/12 at 18:56:10

Thanks so much Lisa. You are an inspiration! Thank you for sharing all of your experience and knowledge.

I look forward to being pleasantly sedated throughout the whole experience

:) :)

Title: Re: Surgery
Post by Joan on 11/26/12 at 18:38:36

Hi Ana,

I will be thinking of you on the 28th!

Have you thought of bringing water in glass bottles or jars? I save my glass spring water bottles (and lids) and refill them with filtered from my house for trips and walks. Or, any store that sells wine or beer making equipment will have new gallon glass bottles with handles on them.

Looking forward to hearing from you post-op! I'm sure you will feel so much better when that pesky gall bladder is gone! It's just been causing too much trouble >:( !

If nothing else, you've certainly done your homework on this, so everything should go really smoothly.

Title: Re: Surgery
Post by iamnotalone on 11/27/12 at 05:29:02

ANA;
Yep, we will all be thinking of you & wishing you a speedy recovery tomorrow !!! :-*
lori

Title: Re: Surgery
Post by Anaphylaxing on 11/27/12 at 11:15:45

Guess what?delayed until next Wednesday

So that was a false start

I tolerate silicone better than the usual plastics so waiting for that to come in

Title: Re: Surgery
Post by Joan on 11/27/12 at 18:15:06

That sounds like a good thing if the silicone is safer.

I promise not to make any jokes about silicone! ;D

Title: Re: Surgery
Post by iamnotalone on 11/28/12 at 05:07:37

ANA !!!
Okay, well that gives us a week more to send good vibrations your way ! ;)
Joan; :D ;D :D
have a good day ladies!
lori

Title: Re: Surgery
Post by phyre on 11/28/12 at 06:08:18

Well, now you know you are as prepared as you can be. :)

Sending good health vibes and prayers your way for successful surgery and a quick recovery.

Title: Re: Surgery
Post by Anaphylaxing on 11/28/12 at 17:11:33

Thanks again all of you!

Wouldn't mind the odd nip/tuck while I'm under Joan ha ha. ;)

Title: Re: Surgery
Post by Joan on 11/28/12 at 19:15:27

I'd like a major overhaul! If I weren't high risk for surgery....

Title: Re: Surgery
Post by iamnotalone on 11/29/12 at 09:14:45

Joan;
Maybe we could get a group deal on a "nip/tuck" for masto patients...
:D ;D :D

Title: Re: Surgery
Post by Anaphylaxing on 11/29/12 at 10:02:44

Totally agree

If I didn't have a major aversion to any medical person touching me anywhere or an awareness of the risk of death with any medical procedure....or the resulting possible complications....

lol!

Title: Re: Surgery
Post by DeborahW, Founder on 11/30/12 at 02:51:03

How are you doing today???????? Hope you are feeling a-ok!

Title: Re: Surgery
Post by Anaphylaxing on 11/30/12 at 09:38:42

I'm ok thanks Deborah. Surgery was postponed until next wednesday Dec 5th

will let you know...

Title: Re: Surgery
Post by Anaphylaxing on 12/04/12 at 06:42:12

premeds today. go time tomorrow. .. ;)

Title: Re: Surgery
Post by BlueSkies on 12/04/12 at 08:43:47

Thanks for keeping us updated! We are all thinking about you. You've done so much prep work - it will all go well!

BlueSkies (newbie here, but already enjoying your posts!)

Title: Re: Surgery
Post by Doozlygirl on 12/04/12 at 16:21:33

Thinking of you!!! Plese let us know how you are doing as soon as you can.

Lyn

Title: Re: Surgery
Post by DeborahW, Founder on 12/04/12 at 17:27:42

Good luck!!! Don't forget, mind over matter helps control errant mast cells! Check in with us when you can. :)

Title: Re: Surgery
Post by Joan on 12/04/12 at 18:47:31

I agree with Debbie. Keep a positive attitude and remember that you've done everything you can to stay safe. Try tomfeel confident that the pre-meds will work! They have for me, even through a couple of major surgeries.

Good luck tomorrow!

Title: Re: Surgery
Post by Anaphylaxing on 12/06/12 at 06:29:58

I survived! All the pre-planning meant the day was a near breeze!

Full story here http://mastcellactivation.blogspot.ca/

Thanks so much for the help.

Title: Re: Surgery
Post by Doozlygirl on 12/06/12 at 12:42:28

Ana,
I've been cyberstalking you for the past 24 hours looking for word. Thank you so much for posting. I'm relieved it went like a breeze. Congratulations for all your hard work!!! Will now check out your blog. :)

Lyn

Title: Re: Surgery
Post by Joan on 12/06/12 at 14:36:36

Yay! That's great news! ;D :) ;) :D

So glad you planned ahead as well as you did. A few years ago we were all waiting with breath held for Lisa to get out of her heart surgery. Happy we didn't have to wait as many days.

Be sure to take extra good care of yourself for a while so symptoms won't creep back in as you discontinue the prednisone.

Title: Re: Surgery
Post by DeborahW, Founder on 12/07/12 at 13:29:27

Time to celebrate because Ana is back! :D [smiley=2vrolijk_08.gif] [smiley=thumbsup.gif] So glad that everything went smoothly!

Title: Re: Surgery
Post by Anaphylaxing on 12/08/12 at 14:41:33

Thanks so much everyone.

The day went so much better than I expected. Now almost off steroids and biggest issue has been a tiny rash from the dressings which is near miraculous considering what I was expecting!

The staff literally bent over backwards to protect me from scents and all of my triggers.

Had a rapid steroid taper. Took 50 mg Benadryl every 6 hours for first 24 hours then decreased to 25 mg for a day and stopped today and back on regular antihistamines. Just trying to roll with things and hope for the best!

Really helped to know everyone here was rooting for me. Appreciate it! :)

Title: Re: Surgery
Post by iamnotalone on 12/09/12 at 08:49:29

Ana;
Yaaay !!! :D I was wondering how it went.
Ditto what everyone else said ! ;)
lori

Title: Re: Surgery
Post by Anaphylaxing on 12/21/12 at 23:34:30

Just to update... I had rashes around two of the incisions after a few days post op but they faded in a week. I took some extra meds (Benadryl) off and on during the first week, but have been off it since. use Tylenol for a few days and am now off.

My diet has progressed more rapidly than it has since I first got sick, so so far no complaints.

I have lost my radial pulse from the arterial line site. Us mast cell people are at higher risk for vascular complications from vascular access. I tried to refuse the line, but they were so worried about a hypotensive episode they really wanted to have one which makes sense. But seems it occluded my radial artery. I'm really hoping it will recanalize in time as I don't want to be down to one hand artery, BUT even if I am it's better to be alive I suppose.....but I didn't have any hypotensive episodes, so they theoretically could've just checked my BP with the regular cuff.

If I have another surgery I will likely try to insist that they go without unless they run into complications to prevent losing another artery for prophylactic reasons.

Just want to put this all out there in case anyone runs into similar things with surgery in the future

Title: Re: Surgery
Post by DeborahW, Founder on 12/22/12 at 02:17:18

For those of us who know nothing about this type thing, can you explain what an arterial line and radial pulse are?

Title: Re: Surgery
Post by Anaphylaxing on 12/22/12 at 18:31:52

Of course sorry for rushing through it.

An arterial line is like an IV (these go into veins) except it's in arteries and generally used for different purposes. They poke it with a needle then put a catheter (plastic usually) into the artery. The least invasive and most commonly used ones are at the wrist where you normally check your pulse also known as the radial artery. They are put in during surgeries on "high risk" patients and not generally used for normal healthy people unless it's a very complicated surgery.

Their intra-op purpose is for "real-time" blood pressure monitoring. Instead of waiting 1-5 mins or whatever interval for the BP cuff to inflate. They could catch the earliest signs of low or high blood pressure this way. And, if someone becomes very unstable they can keep a closer eye on how the patient is responding. So you can see all the benefits to having one.

That being said, they have a higher complication (running into issues) rate than IVs. The poke can cause a clot that blocks the artery, Can spasm the artery, can throw clots the the arteries "downstream" from the poke site killing the tissues, or can tear the wall causing some ballooning known as pseudoaneurysms, and can be a source of bleeding. So that's why they dont' just throw them into anyone. Many mastocytosis papers recommend having them for surgery. That being said, I have developed clotting, infections and reactions to every IV I've had, be it the foreign body or plastic or what's injected through it so when I discussed this with my mast cell docs the advice was to avoid the arterial line if possible. Us masto folk have a higher risk of vascular complications anytime a vessel is manipulated. So it was my instinct to avoid it. But I could understand why the people taking care of me would feel safer with it.

Can be a bit of a grey area depending on the situation.

Anyway, I've run into complications from mine--my radial(wrist) artery has clotted and I no longer have a wrist pulse. Could be worse though. Thankfully there are two main arteries to the hand (radial and ulnar) so when one goes, the other takes over, but you are more dependent on the one artery in that situation which can be a dicey situation if anything ever happens to that artery such as with age or a nearby broken bone etc

There is a small chance my body will breakdown the clot or whatever's going on and recanalize it long term. You could theoretically have a study of the hand arteries using x ray dye to see how it looks and give heparin or something if needed, but I am not going to get xray dye given that's how I ended up here! And don't want the complications of another procedure.

Hope that makes some sense. If it doesn't, just let me know and I'll try again :) I keep rushing through so am probably too scattered.

Still overall could be SO much worse

Title: Re: Surgery
Post by Anaphylaxing on 01/08/13 at 22:53:11

5 weeks post op and doing GREAT

only issue is subcutaneous dissolvable sutures not dissolving and poking through incisions and kind of delaying healing. Might remove them in the next little while

praise God 8-)

Title: Re: Surgery
Post by DeborahW, Founder on 01/09/13 at 02:19:27

Yay! So glad to hear it!!!! [smiley=2vrolijk_08.gif]