Posted , 52 users are following.
Hi Guys
I heard back from the Heptobiliary surgeon today
I am having my hepaticojejunostomy next tuesday sept 6th at University of Chicago.
I am nervous..but hopeful that this long nightmare of sickness and pain Might be coming to an end soon.I know it will be a hard recovery..But anything is better than nausea,fatigue daily.
2 likes, 217 replies
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peita1234 debra1711
Posted
Wow Lex, good luck for the op tomorrow, I'm sure you will do fine. And as your surgeon has said, being so young will definitely benefit your recovery. It will be good to get it over and done with and put it behind you! Best of luck, and I look forward to seeing your posts after the surgery !
lex42968 peita1234
Posted
Thanks so very much, hoping I will feel more confident about things in the morning
imelda1986 lex42968
Posted
Hi Lex,
don't worry too much about the long surgery. You will be deep asleep when the surgeon is doing the work and when you wake up it will all be ok. When I was in hospital I always listened to music to calm me down (before the surgery via headphones). I even brought speakers to my hospital room and the nurses loved the music and posit vibe - tbh the music helped me to stay positive and strong. I guess I know every 60s/ 70s and 80s Spotify playlist by now 😉 Maybe this might help you as well.
All the best tomorrow and keep us posted how you are getting on!
lex42968 debra1711
Posted
hey everyone, just thought I would come on to give an update. My surgeon mentioned the procedure would last about 2-4 hours. I was given the meds, and the next thing I knew I was waking up in recovery. I had an NG tube in, became so uncomfortable I had them take it out , but had to get it put in the next day. I was told I'd only be here 4-5 days. Here it is the 15th and i'm still in the hospital. Sadly the cyst was so close to my pancreas that it inflammed a little and has been leaking fluid.
I've had to stay here until it gets under control as it was also giving me high fever. This has been misery for me and the doctors came today to let me know they are doing their best to get me sent home ASAP. Hoping tomorrow will be the day.
Kredfan lex42968
Posted
it will get better everyday! have faith and remember a heating pad is your best friend on your tummy for the spasms.
kay80562 lex42968
Posted
i am so sorry to hear this. It sounds miserable. I reallly hope things start moving in the right direction. Am thinking of you and am sending prayers your way.
Kay
peita1234 lex42968
Posted
Hi Lex, great to hear the operation is all over and done with. It certainly is not an easy operation and the recovery is very difficult. You are in the best place, and it sounds like they are doing a great job looking after you and making sure you heal properly before sending you home. Whilst the few weeks following the surgery are very hard, all of a sudden you will notice that each day you start to feel a bit better. Just make sure you rest plenty, and listen to your body. Wishing you an easier recovery from here on in x
kristin84900 lex42968
Posted
That sounds like what happened to me. My cystic dilation was so large and so close to the pancreas that the surgeon really aggravated it in the process. I too had fever and fluid. Was in the hospital well past what they said. Stay hydrated and i hope you recover soon!
lex42968 kristin84900
Posted
About how long was it before your pancreas stopped leaking fluid? I finally got to come home yesterday without TPN but have to drink Ensures to build up my protein and nutrients before going back to solid foods.
robert_44740 lex42968
Posted
How long were you in the hospital ?
kay80562 lex42968
Posted
i lived on Ensure for a while after my surgery. I made smoothies with the chocolate flavor, greek yogurt and Almond Milk. They tasted good and had tons if protein.
So happy to hear you are home.
lex42968 robert_44740
Posted
10 days
lex42968 debra1711
Edited
Hey everyone. After being home a while, I started getting high fevers so I'm back in the hospital. my incision got infected and the infection spread a little. the surgeon had to go in and flush out all of the infection. they also did blood cultures and saw some bacteria. i'm still on liquid diet, but have had a couple vomiting spells from all the IV antibiotics. I pray this improves soon so I can continue to recover at home.
peita1234 lex42968
Posted
Hi Lex,
Just thought I would check in and see how you are feeling? How has your recovery been? Hoping you got over the infection quickly and are back into the swing of a normal life!
Peita
lex42968 peita1234
Posted
Thank you so much for checking in on me! So the last time I wrote I was back into the hospital due to infection in my incision. This was on Christmas Eve, and I did not get to come home from the hospital until January 6th, 2020. It was rough and miserable but since then I had a wound vac put in where my incision was still healing and now it is almost completely closed up and just has a wet-to-dry dressing! My eating is getting better slowly, I have to eat smaller portions now otherwise I feel too full and my tummy feels a bit upset.
I had to do at home antibiotics when I was discharged last month to get rid of the remaining bacteria in my system from the blood cultures. I am much much better, and through all of the complications and overall surgery my lupus did not flare or become active so I feel very blessed and fortunate. I still have a couple more weeks or so before I am able to try spicy foods again, and I have to wait for my incision to fully close up in order to start driving again. Otherwise, I feel pretty good and just glad I have improved from where I was just a few weeks ago.
kay80562 lex42968
Posted
i am so happy yo hear that you are doing better! It certainly sounds like you are on the right track!
Best wishes!
Kay
peita1234 lex42968
Posted
Hi Lex,
No problem at all, I've thought about you a few times over the last few weeks and wondered how you were doing. It sounds like you are on the mend now. My surgeon put a vac dressing on mine after surgery and it helped a great deal.
I also had to go on antibiotics at home as i ended up with cholangitis after surgery, but so far so good! They jump pretty quick if you develop a temp or anything after surgery which is great. I haven't tried spicy food yet either and I love curries so I'll have to have one soon! And I can't eat what I used to either. I guess your stomach shrinks a bit after surgery and not eating. That's fantastic that your lupus did not flare up, that must have been a worry for you leading up to the surgery.
It's great to hear that you are doing so well, because it is not an easy surgery to have. I hope you continue to improve and get stronger every day!
Regards, Peita .
lex42968 peita1234
Posted
You're so sweet Peita thank you so much for thinking of me! I hope you continue to improve as well so you can get back to curries!!! keep in touch and God bless!
VeryBlessed peita1234
Edited
Hi peita1234 lex42968 and kay80562
Delighted to hear that you are ALL recovering well!! I had my HJ 10 months ago followed by Sepsis 3 weeks post-op. I have recovered now but I still struggle with severe bloating EVERYDAY and have not found remedy. Any feedback from our supportive community greatly appreciated. Wishing everyone Blessings and Healing.
heathernancy89 lex42968
Edited
hi lex. It looks like the last update was over a year ago. how are you doing now?
lex42968 heathernancy89
Posted
Hi there!! That is so sweet yet funny that you thought of me because I was thinking of everyone in this posts just a few days ago, but wasn't sure if any of you still get on here to write or check in! I'm doing pretty well I must say... Since my last post, I completed a Master's degree at UCF and just graduated last month! I'm still in full remission with my lupus, and my scar healed really well from the surgery, i'm just still a little self conscious about it but my husband tells me its beautiful all the time and to embrace it.
You all will not believe it but surprisingly last year I ended up pregnant and had my miracle baby (for so long I was told I wouldn't be able to have kids of my own due to my lupus). I gave birth in October last year to a beautiful baby girl and she is almost 8 months now! She was born with a couple of defects (VSD and one underdeveloped kidney) But otherwise she is completely healthy and the VSD went away on its own.
If anything, I will say i'm still trying to figure out food sometimes, alot of foods I used to eat before seem to make me feel bloated more now or they end up sending me to the bathroom by the time I finish a meal. I feel like I need a complete detox to just clear out my system completely. I had my follow up with my surgeon two month ago and he said everything looked great so I no longer need to see him.
**How are you? I hope everyone is doing well in this group!!
heathernancy89 lex42968
Edited
Thanks so much for the update, and congratulations on your daughter!!!!! Of all the accomplishments in my life, I am most proud of my daughter. It truly is so special. It's great to hear that you are doing so well. From what I've seen here and the Facebook support group I've found, it seems like most people are able to adjust well once they figure out what their food triggers are. Though, for many of us, this was a problem before the HJ as well.
lex42968 heathernancy89
Posted
that's great and nice to know there's also a FB group! I have noticed that i'm still having occasional abdominal pain and not sure if that is normal past 1 year of having the procedure? i was going to contact my surgeon and ask but when I do get the pain, it isn't often and happens at random times. i experienced it early this morning and it woke me out of my sleep because of how painful it was