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Post by jpcello on Jul 13, 2014 16:11:00 GMT -5
Thanks for the update. Sending hugs.
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Post by MsVee on Jul 14, 2014 8:24:20 GMT -5
Thanks For the update Sharyl. Please let Lisa know that she remains in our thoughts and prayers.
MsVee
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Post by PrettyGirlBounce on Jul 20, 2014 16:49:17 GMT -5
Hi all.
Well today marks one week that I have been home from the hospital in Los Angeles under the care of Dr. K.
I do have a PICC line and TPN nutrition around the clock. Also, I have a home health care nurse coming every few days which is awesome beyond words. I have only gained 1.5 lbs so progress is slow but their goal is 2 lbs per week. Yesterday, based on my labs and weight, the pharmacist made several changes to my TPN recipe including increasing my calories from 500 to 1500. They start low with nutrients and vites to get a baseline and then adjust it as needed thereafter.
Even though the scale shows little improvement, how I feel overall is like night and day. My color is returning from grey to normal, my eyes are no longer sunken in and the dark circles are going away slowly but surely. Also, the IV nutrition has given me a much needed boost in energy resulting in an increase in my interest in eating and drinking - HALLELUJAH.
My pain has not yet subsided but Dr K says just be patient since I just had another major open surgery on May 1 and the pain is just residual. Still, it sucks and I'm over it but I just stay focused on my nutrition and try not to think of it too much.
It was wonderful to see my dear angel Sharyl while I was admitted. I know it was hard for her to see me like that but her support during this difficult time has remained steady. I appreciate her beyond words.
Actually....on that note...I appreciate ALL of the support given and offered here by my proboards family. Trust me, although I have not felt well enough to post often, I am here reading everything and I am lucky to have so many people that care. So... THANK YOU!!!
I will keep everyone updated more often now that I am feeling a bit better. Take care!
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Post by meq815 on Jul 20, 2014 16:54:28 GMT -5
Ah Darling! So nice to hear from you! What a tough few months you've had. Sounds like you're on your way back, though. I think of you often, and am sending prayers and positive vibes for continued healing!!! :kiss kiss:
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Post by PrettyGirlBounce on Jul 20, 2014 17:09:29 GMT -5
Thank you M.E.!!! I totes missed you guys too. Glad to feel well enough to be back posting. Xox
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Post by historytracker on Jul 20, 2014 18:43:18 GMT -5
Cheryl:
Thanks for the update.
Lisa - take care of yourself and I hope you have a fast recovery.
Goodkel - great article. I think the whey protein is something to include the rest of your life for the DS patients to ensure you get enough protein in.
Cindy
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Post by illinids2 on Jul 20, 2014 19:22:53 GMT -5
So glad to hear from you and that you are on the road to recovery. I know this has sucked and still isn't easy, but it certainly sounds like you are better and have a strong plan.
Take care of yourself!
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Post by teachermomolp on Jul 20, 2014 22:27:49 GMT -5
Glad to see you!
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Post by Leonie on Jul 21, 2014 2:01:40 GMT -5
Feel the, love,hugs, prayers and fuzzy feelings coming to you from the tip of Africa.
It is a long way out from surgery to still have pain, but your body has sure taken a bashing! Soon your cheeks will be rosy, and the bounce in your step will match the bounce in your heart.
Are they still experiencing a shortage of micro-nutrients for TPN? I have been reading that pharmacists skip those because they are hard to get, and do not realize how critically we need them.
Have a piece of chocolate on me.
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Post by nursemelanie on Jul 21, 2014 2:38:16 GMT -5
PGB soooo happy to know you are feeling even the least bit better. Continued prayers for you! I was never the cheerleader type lol....but I'm cheering for you! Muah!
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Post by jpcello on Jul 21, 2014 4:53:37 GMT -5
Glad you're starting to feel better. Slow and steady. WELCOME BACK!!!
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Post by OnMyWay2Thin on Jul 21, 2014 6:13:20 GMT -5
So glad you are on your way back to being the bouncy individual that you are. I'm new but have followed your progress getting better; soon, very soon you'll be yourself again!
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Post by Girlrocker on Jul 21, 2014 10:06:04 GMT -5
Honey girl, so good to see you! Here, and, in person. You know what was harder? NOT seeing you, being able to hug you. It's been a LOT to deal with, you've had so much to process, but you're on the other side now. Treating, mending; steady as she goes, and I know you're going to go the whole way.
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Post by PrettyGirlBounce on Jul 21, 2014 13:59:01 GMT -5
You too! So glad that I feel a little bit better every day. Also, I sent you a PM when you have a second.
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Post by PrettyGirlBounce on Jul 21, 2014 14:33:35 GMT -5
I was sickened this morning while finally catching up with what is going on with our dear DeeDee/Diane. I posted this:
"Omg I've HAD IT with incompetent doctors!!!!! I feel horrible that she has had to endure such pain and discomfort. I can fully relate...my experience is fresh and still palpable. It's traumatizing and very hard to get over."
I didn't want to hijack her thread so I will continue my thoughts here:
At least 3 G.I. surgeons and 3 attending physicians read my CT & MRI cd's and reports and came up with nothing. ZILCH. Dr K sees it and immediately identifies a major obstruction in my bilio-pancreatic limb and I head to the OR for emergency surgery. HOW DID 6 DOCTORS OVER A 6 DAY HOSPITAL STAY MISS IT? HOW?
Dr.K literally said "Why are you still there? They are doing NOTHING FOR YOU! Can't you get transferred up here to me?" After looking into it we decided that it was easier to just request to be discharged and head up to LA immediately. So that is what I did, thankfully.
Would I have DIED due to those doctors' incompetence if I didn't have Dr K to shake some sense into me and get me up there to be under HIS care? I think about it daily. I cry about it often. I need to move on, but it's difficult.
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Post by meq815 on Jul 21, 2014 14:46:03 GMT -5
You've been through a living nightmare. Of course, you cry. You will move on in time. Just cry. I've cried for you. It's called PTSD.
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Post by west4thavenue on Jul 21, 2014 14:56:58 GMT -5
I was sickened this morning while finally catching up with what is going on with our dear DeeDee/Diane. I posted this: "Omg I've HAD IT with incompetent doctors!!!!! I feel horrible that she has had to endure such pain and discomfort. I can fully relate...my experience is fresh and still palpable. It's traumatizing and very hard to get over." I didn't want to hijack her thread so I will continue my thoughts here: At least 3 G.I. surgeons and 3 attending physicians read my CT & MRI cd's and reports and came up with nothing. ZILCH. Dr K sees it and immediately identifies a major obstruction in my bilio-pancreatic limb and I head to the OR for emergency surgery. HOW DID 6 DOCTORS OVER A 6 DAY HOSPITAL STAY MISS IT? HOW? Dr.K literally said "Why are you still there? They are doing NOTHING FOR YOU! Can't you get transferred up here to me?" After looking into it we decided that it was easier to just request to be discharged and head up to LA immediately. So that is what I did, thankfully. Would I have DIED due to those doctors' incompetence if I didn't have Dr K to shake some sense into me and get me up there to be under HIS care? I think about it daily. I cry about it often. I need to move on, but it's difficult. It is appalling. I have had many similar experiences myself, and particularly so when I was caring for my mother. Negligence, failure to diagnose, failure to test, failure to inform the patient... I do not wonder why you cry! It is a nightmare.
Thank God you did not give up or accept the lack of action!
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Post by newyorkbitch on Jul 21, 2014 15:12:04 GMT -5
...and it's getting worse and worse.
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Post by Girlrocker on Jul 21, 2014 19:40:21 GMT -5
Which is exactly why I was glad to see you! You have been through hell, it's AWFUL. I have thought of you and Deedee484 often, just dumbfounded. I'm so relieved you're doing better, in good care. That you're back, and you know you don't have to go through this alone. I know it's very hard for you as positive person to talk about all this, but it's not negative, it's your LIFE and we care about that and you, very much. Yes, I was very worried about your lack of nutrition and the weight loss, and the only thing that was hard is to see you hurting. Relieved you're getting the right care now, that's all that matters, you getting well.
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Post by illinids2 on Jul 21, 2014 19:54:22 GMT -5
After nearly 4 years of much of this same shit with my son and myself, I can't tell you how common place this ridiculous bull shit there is. For every Dr K there is an arrogant Dr Dumbass who thinks because he or she has MD behind their name that they are a freaking genius, when in fact some of them flat out suck at what they do. Many of these fools are ashamed to admit they don't know what is going on and instead send you home (unless you fight like hell and tell them not until you figure out what is causing this problem). It is unfortunate but you must have an advocate who is not afraid to get in a Dr's face and demand answers. I feel so sad for those who don't have that advocate...it shouldn't be needed but our "best in the world healthcare system" requires it.
Lisa, I feel for you and Dianne so much and am glad you both are on the path to recovery.
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Post by nursemelanie on Jul 22, 2014 1:31:43 GMT -5
After nearly 4 years of much of this same shit with my son and myself, I can't tell you how common place this ridiculous bull shit there is. For every Dr K there is an arrogant Dr Dumbass who thinks because he or she has MD behind their name that they are a freaking genius, when in fact some of them flat out suck at what they do. Many of these fools are ashamed to admit they don't know what is going on and instead send you home (unless you fight like hell and tell them not until you figure out what is causing this problem). It is unfortunate but you must have an advocate who is not afraid to get in a Dr's face and demand answers. I feel so sad for those who don't have that advocate...it shouldn't be needed but our "best in the world healthcare system" requires it. Lisa, I feel for you and Dianne so much and am glad you both are on the path to recovery. You preachin' it!!
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