Buyer's Remorse- My Horrible Road To "recovery" Post Sleevectomy

[Chuckles 28]

Jsd I am so sorry to hear what an awful experience it has been for you. The support group I go to has guest speakers and the last one had an experience as bad as yours. She was in the hospital for months for failure to thrive, but luckily made it through after months on a picc line at home and multiple hospitalizations. I hope you have no more problems. Love and hugs.

[Pinky Green 260]

What exactly is a PICC line and TPN?

[NDN_RN 527]

What exactly is a PICC line and TPN?

Picc line is an IV that it inserted in the arm and threaded to the subclavian vein which directly brings blood into the heart. It is for longer term IV infusions, chemo, and TPN. TPN is total Parenteral Nutrition. It is a mixture of Protein, fats, carbs, and Vitamins made in a sterile environment that is directly infused into your blood through a picc line. Bipasses digestion and absorption.

[jsd2 39]

What exactly is a PICC line and TPN?

A PICC line is a peripherally inserted central catheter.....what it is basically is slightly thicker than a normal IV line that can have multiple ports, or openings, and can stay in a vein for weeks to months at a time. The PICC line is inserted through your arm most often by a vein surgeon using ultrasound. A wire and catheter are inserted into your vein through a small incision and it's guided through several feet until it's a short distance from your heart, usually centimeters.

The PICC line is prone to infection and unfortunately can lead to blood clots like my case. In order to keep the line open you need to flush it several times daily or keep something pumping through it continuously like TPN. I used one of the ports to push medication along with saline and heparin which is a blood thinner to try to prevent the tiny end of the line from clotting off...obviously not enough for me. We also used an enzyme called Activase which is supposed to power through and dissolve those tiny clots or bits of tissue on or in the line. I was sad to find out Activase is not covered for Medicare patients due to prohibitive cost, apparently it's upwards of $800 for a single dose and multiple ports/lines require seperate doses.

TPN is the abbreviation for Total Parenteral Nutrition. It is used as either your only food/nutrition or as a supplement if you aren't getting enough food or Protein in or have malabsorption/malnutrition. It is a creamy white liquid full of lipids, sugars, Protein, Fluid and Vitamins and minerals. It comes in a big heavy duty IV bag and each of my bags weighed roughly 10lbs- they broke a shelf and a drawer in my refrigerator from the weight of storing them. The liquid sort of looks like a big bag of Ensure. Because you get the nutrition intravenously, it is already broken down and requires very little processing by your body, its just straight fuel. TPN was a Godsend for me but it also prevented the most substantial weight loss for the first couple of months.

[StrangelyNormal 182]

This is totally off subject but have you ever thought about writing? As a career? You have a way of reaching your reader that very few writers possess. As I read your posts I'm literally enthralled with the story. It is akin to watching a suspenseful movie and sitting on the edge of your seat in anticipation. I do hope you continue to keep us updated on your health and appreciate such an eye-opening account of what can go wrong.

[tonya9969 38]

Please tell me you exaggerated to be dramatic!! This just sounds unreal- I'm so glad you had your daughter there to help you- that hospital should be shut down and the quacks that work there shouldn't practice medicine in a testing lab!! My prayers go out to you and your daughter. God I hope there's a silver lining some place- besides the fact that your lucky n blessed to still be alive- is there one positive you can tell us about??

[x4achange 3]

Please stay strong. I had complications after my surgery that took me 2 months to recover but not without my God, family, friends and this forum. When no one physically around me understood my pain, I expressed myself here and found some comfort from people who knew some of my pain and helped me heal by providing me with information, questions to ask my doctor, information on some of my symptoms...etc. My heart, blessings and prayers go out to you!

[kerrysway 46]

I too am completely horrified at everything you've had to endure, I'm so sorry.

I am in the pre-op process with surgery currently projected for mid-late September. I am in SouthWest Michigan too and upon reading that that's where you are, a feeling of dread swept over me, worried that maybe I've set myself up with the same surgeon/hospital you were with. I'd really be grateful to you if you would reveal who you went to.

Please do keep us informed of how you're doing, I sincerely pray for you that you have overcome the worst of it and will gradually improve with each passing day.

[happytohavethesleeve 9]

Oh my heart goes out to you. I think the worst part is the not knowing exactly what the heck is going on. At least for me they knew what it was. I was the less than 1%! I had a twisted stricture. Unable to eat/drink anything from August 2011 to Dec 2011. Mashed potatoes and gravy Christmas Eve. Never tasted anything so good in my life. I have had it all. Feeding tube that was skillfully put through my noes and into my instestines and a feeding tube that went directly into my tummy. TPN. Stents. Stent removal from migration. Ouch. That is two operations right there. I think we were up to 8 endoscopies. At one point they couldnt sedate me for an endoscopy because my vitals were to low. I spent just over a month in a hotel and went to see the clinic during the day. I was very blessed to be under the best care in the world with the best doctors. I think of them so fondly. They finally did something pretty much unheard of. A strictureoplasty. They cut the stricture out and put both ends back together. They kept me over night and I had 24 hr nurse care. Oooh I love them so much they were kind to me. And they fixed me! I am so happy now. I LOVE my sleeve. And I know that while you are going through a hard time you think that you wont ever feel that way. It sounds like you are having a hard time to get good care. My heart goes out to you. We are very very rare. While I had my stay at the clinic I saw droves of people get the operation and then go home. No problems. Prayers for a speedy recovery.

[AutumnPunkin 313]

My heart goes with you. Sounds like the nurses curse to me anything that can go wrong will go wrong. Is it getting any better?

[zenoosh 112]

Omg, your story is total agony, mixed with a monstrous cluster-f*** = REALITY. I agree with others, you should really think about being a writer. Your descriptions were so raw and I really felt your pain...(I know I didn't, really, but the stream of consciousness way you express yourself is true talent. Im not a religious person (probably because of times like these when all you do is pray and nothing happens....) but I will be thinking about you, and vibes will flow your way. I also think you should contact a lawyer. Do it now, before time runs out, just so you know if there's something that can be done. It won't help you fix the issues, and it won't take away the pain and suffering you've experienced, but it could help you emotionally and financially.

I am so truly sorry for your agonizing journey. Makes me feel very grateful for good days, and my bad days will mot seem as difficult to overcome. Thank you for sharing.

You are a f***ing WARRIOR.

[jasleeve 440]

wow. just wow. i thought my story was bad

[jewels1227 20]

I am so sorry that you had to experience this. I as well had a very rough time. I was in fact determined that I was totally screwed. You have to remember why you decided to get this in the first place. I know it is rough right now, continue to pray and trust God, He LISTENS AND WILL ANSWER! He did not bring you this far to leave you! You will have a testimony....................Trouble dont last always. I will keep you in my prayers! I think you really need to give your self some healing time, and get some rest. Resting and staying hydrated seems like to most hardest things to do but try your best. Your body needs time to heal, and it sounds like you are a ginue pig...God knows that is how I felt! Keep the faith! You will not have buyers remorse after while!

[jsd2 39]

Please tell me you exaggerated to be dramatic!! This just sounds unreal- I'm so glad you had your daughter there to help you- that hospital should be shut down and the quacks that work there shouldn't practice medicine in a testing lab!! My prayers go out to you and your daughter. God I hope there's a silver lining some place- besides the fact that your lucky n blessed to still be alive- is there one positive you can tell us about??

I wish that I was! Unfortunately, all of the problems, crap and complications are true. I knew what the potential problems were prior to surgery and took the risk because @ 347lbs I would have died from complications due to obesity otherwise- diabetes, heart disease etc. Although I was fat I was relatively healthy, not diagnosed with anything besides mild sleep apnea that didn't require treatment. I was afraid I was getting fatter and fatter and would wind up riding around on a scooter like the fat chick on Family Guy before succumbing to some type of disease.

There is absolutely a silver lining- my daughter started school this fall- she's premed and planning to go to Columbia University for med school and a specialty in cardio-thoracic surgery. Prior to my surgery she was a nursing student, mostly just because I had been a nurse and not because she had the real desire. She is totally on fire for medicine now! If this was the only positive from my experience it would be worth it. When she made the decision to change her major she said "but can I really make a difference, I'm only one doctor and there are so many bad ones" I told her although she was only one, she would teach and impact thousands of docotors and nurses she would work with and someday a young girl like herself would come in with her mom as a patient and look to my daughter as inspiration to enter the medical field. I thank God every day for the gift of being her mom.

Other silver linings? I can fit clothes that sat in my closet with tags on them, a really cute pair of size 22 jeans. When I lost most of my hair and my daughter begrudgingly took the scissors and helped me cut it while we both cried, I thought I would wind up shaving the rest like Joseph Gordan Levitt in 50/50. The upside was a really cute super short cut by a sweet girl at a $6 salon and a box of medium ash blonde haircolor that made it so I could look in the mirror without crying and go out in public without being embarressed. Advice for anyone else going bald- coloring your hair a color that is closer to your skin tone really will camoflage the bald patches!

I'm not a debbie-downer, I don't want to discourage anyone. I have appreciated all of the comments made, getting my feelings and story out and being listened to has been the greatest thing for me! I'm less depressed and more hopeful which is really the best upswing.

[ladiJ 83]

Thank you so much for sharing your story. I am sending out prayers of comfort and healing. I wish I could say your story was unbelievable but being a nurse myself I see and understand the multiple mistakes and lack of follow through in the health care industry on a daily basis. I notice you said you had surgery in 2008. What is your current health status today?