Post op Whipple care

My MIL was just diagnosed with PC and will likely be scheduled for surgery next week.  My husband and I are the closest family, and we live 1.5 hours away. I'm very concerned about the level of care that she will need after the Whipple.  Any information anyone out there has will help us plan how we can best care for her. (timeframe, round the clock, medical expertise needed, etc..???)  Thanks

Having been through post-whipple care with my own mom 9 months ago, I'd strongly recommend that someone spend each night with her while she's in the hospital (though if she's in intensive care for a night or two, they likely won't allow that, and that's okay as she'll get good attention there). My mom had great care, and fared really well, but even so - extra ears/eyes are necessary to make sure she's getting what she needs (pain meds, assistance walking, baths/fresh linens, etc.) and also key - hearing what surgeon/docs have to say when they make their early am rounds. Have a notebook and pen handy at all times so you can write what docs report, and have your MIL sign a release so you can request copies of pathology report and all records/tests before she even leaves the hospital. Prior to surgery, request epideural pain relief (anesthesologists do this) as your MIL will be most comfortable post-surgery. We found this surgery - big as it is - to be far more manageable than we expected. Hope things go well! Janet

Janet11 is right on with what to do after surgery.  Writing everything down really helps, and having someone there with the MIL all the time.  Nurses are great, but they can't always be there when you need to go potty or whatever needs done.  Also you can take shifts staying at the hospital.  Ask the hospital if they have some where you can stay real cheap.  We paid 25 a night in Jacksonville.  After I got home, I needed someone to help me at home for a few weeks.  Or have someone there until the people is capable of walking a few houses down the street and can take care of themselves.  God Bless!! Dawnella

Looking back to after I had my whipple quite a while ago; 1st, my wife and children were there at the hospital every day for the 10 days I was there. Next, when I came home, my wife was there, and by the way.....was fired from her job because she spent so much time with me!  My kids were home from college so there was always someone around.  It was January in NY and freezing outside but I wanted to go out and walk.  I walked down the driveway and got tired and had to turn around to go in.  Ok, in the hospital, every morning the surgeon and residents made the rounds and explained everything in detail to them and to me!  They told me that I would have Reflux after a while and I do.  I take Pepsid AC when I need it and Mylanta when it is not bad.  Tell your MIL that it will be lonely at night when you cannot be with her unless the hospital allows it.  That was the worst time for me.  My wife had to go home because the kids were in town.  She came back from Long Island into Manhattan early in the AM and left after rush hour traffic.  When I got home, I saw my Dr 2 or 3 times and he was available to talk to me whenever we had questions.  The hospital did not give me instructions or guidelines on what type of food to have so I ate everything and threw it all up.  My Dr threw a fit and told me to have mashed potatos in every form we could think of, pies,etc.  He told me to supplement with enfamil or some such product.  When I found flavored drinks, it was fine because they were like a meal for me.  They told me to have as many calories as I could to gain weight again.  What I remember most is the state of my emotions.  Tell your MIL that she will cry at the craziest times but don't worry about it, it is natural.  Her emotions will run wild.  I think these are things she should know, the others told you good information on the medical aspects.  Also when she leaves the hospital, it is as though she has no more protective net around her and that is scary but she will get through it.  If she has a lot of family and friends, tell them to keep calling and talking to her.  If she does not want to talk, she won't but to this day, I remember cousins calling me that I had not seen for 15 years and we talked like we just hung up 10 minutes ago.  I still have the family connection from this.  So from my point of view:  Emotions,Diet,Family support and remember, nights are the most dificult.  Please wish your MIL the best, sucessful surgery,easy recovery.

Remember also, 1 day at a time and it is what it is.....already! Now it is time to have the surgery and heal.

Larry

 

 

Thanks so much everyone!  I really appreciate your help and positivity.  It's easy to get down while researching PC and Whipple recovery.  You've really helped us feel like we can tackle this.  Luckily, there is a surgeon with lots of Whipple experience where she lives (Richmond, VA, Dr. George Parker), and we will be able to stay at her house which is very close to the hospital.   

My husband had a Whipple 5 years ago.  While it was necessary for me to continue to go to work during the day, I spent every night for 10 nights with him in Northwestern Hospital in Chicago, which bent over backwards to accommodate patients' families.  It's a good thing I did, too -- he was most uncomfortable and restless at night, and the overworked staff  could not be as responsive to his needs as was necessary.  One thing to be alert for: if it is used on your mother-in-law, a spinal catheter infusing pain medication has a limited "life expectancy" and it gets tricky when approaching the end of its usefulness.  Make sure to have orders for other meds in place BEFORE it ceases to work altogether. 

Upon return home, my husband (then 62) was able to function sufficiently to get his own food and do his own wound care with minimal assistance.  It helped that I had everything out that he would need for the day.

 Expect depression and volatile mood swings to last a long time -- goes along with any major surgery, and this is a MAJOR one!  Sue

 

I have just been diagnosed with IPMT of the pancreas and they have recommended the Whipple. I have had many pancreatic attacks over the years. I have been doing a lot of research about the surgery and the disease.  They cannot say one way or the other if it is cancerous, but my family history is not great.  My question would be did you have any second thoughts about having the surgery?  I am struggling, I don't want to wait and see because if it turns cancerous between the MRIs, then I will not longer be a candidate for the surgery.  Do you have diabetic issues now since your surgery, if so, are they manageable?  You sound like you had a great support group and that is just amazing.  I will definitely send this information to my honey as he will be the sole helper for a bit.  Its just very scary right now, the waiting for the surgery and all.  Did you have to do anything special before the surgery?

 

Regards,

Wendy

 

On 8/20/2007 WESJRB wrote:

I have just been diagnosed with IPMT of the pancreas and they have recommended the Whipple. I have had many pancreatic attacks over the years. I have been doing a lot of research about the surgery and the disease.  They cannot say one way or the other if it is cancerous, but my family history is not great.  My question would be did you have any second thoughts about having the surgery?  I am struggling, I don't want to wait and see because if it turns cancerous between the MRIs, then I will not longer be a candidate for the surgery.  Do you have diabetic issues now since your surgery, if so, are they manageable?  You sound like you had a great support group and that is just amazing.  I will definitely send this information to my honey as he will be the sole helper for a bit.  Its just very scary right now, the waiting for the surgery and all.  Did you have to do anything special before the surgery?

 

Regards,

Wendy

Wendy,

 I was diagnosed with IPMN in March of 2006.  I am 38 years old.  I was put in the hospital in September of 2005 with Pancreatitis-later they determined it was because the mucus being secreted from the tumor.  I had never had problems or symptoms of issues with my pancrease before this.  My doctor felt my tumor was likely benign, but strongly recommended that I have a Whpple as a preventative measure at the very least.  I had a pylorus preserving whipple on May 11, 2006.  My tumor was benign.

 I found myself in the emergency regularly after the surgery because I felt sick and uncomfortable often.  I was never admitted--just sent several hours under the watchful eye of the doctors and nurses.  The aches and pains I had after the surgery were so severe and unlike any I had ever felt before.  I think these new feelings and the fear generated from my surgery made me so fearful of complications so I went to the hospital  often for reassurance.  After the Whipple I was afraid of everything I was feeling--I was so afraid of the complications that could result from this type of major surgery.  About 6 months after surgery I started losing quite a bit of weight quickly.  I was told I had malabsorption and was given enzymes.  I am all better now--in fact I am 100%.  I feel great!  I feel exactly as I did prior to the surgery.  I have not had any problems since February of this year.  The recovery was not easy, but the fear and anxiety I had about the surgery and the outcome was much worse.

You have everything to gain from this surgery.  IPMN's have a fairly long life so there is a great chance that they found this before it because malignant.  I strongly recommend that you make sure you do your homework on surgeons.  Make sure you go to a surgeon that performs these regularly--several times each month at the very least with about 100+ under their belt.  I researched several surgeons, interviewed a couple, and chose the one I felt most confident and comfortable with. 

 Heather

Hi Heather,

 Thank you for your response.  I have done a lot of homework on this illness, sure is scary stuff.  I now have a date for surgery, Oct 16, so at least now I can start planning and preparing as best I can.  With any amount of luck they did catch it soon enough and that everything comes out clear of cancer.

 Your encouragement is greatly appreciated. The Toronto General is a great hospital to have this surgery done, and the surgeons involved are very good. I'm looking forward to being 100% again. 

 Did they say what the odds are for the tail becoming cancerous?

 

On 9/4/2007 WESJRB wrote:

Hi Heather,

 Thank you for your response.  I have done a lot of homework on this illness, sure is scary stuff.  I now have a date for surgery, Oct 16, so at least now I can start planning and preparing as best I can.  With any amount of luck they did catch it soon enough and that everything comes out clear of cancer.

 Your encouragement is greatly appreciated. The Toronto General is a great hospital to have this surgery done, and the surgeons involved are very good. I'm looking forward to being 100% again. 

 Did they say what the odds are for the tail becoming cancerous?

On Sept.11, 2007 I will be 2 months post-whipple for IPMN. Mine was benign and also benign lymph nodes. I have been a surgical nurse in a large hospital for more than 16 years and I never saw any patient with a Chevron incision, it is a semi-transverse scar. My surgeon tells me I should be walking 2 miles a day now but I am lucky if I make 1. Wal-mart trips help (ha-ha). The truth is, it's been a hard road to get here but the faster you get up and get to moving around the better off you seem to be and also it helps you feel better. I was in for 18 days, I had a UTI about 10 days out of surgery and had to have antibiotic therapy for that. Had a grest difficulty with nausea and had to have a PIC line put in for TPN because I couldn't eat. Have lost about 30 pounds and still occasionally have nausea and pain. My Dr. said not to take any more pain meds except for tylenol through the day and take the pian meds only at night. So I grin and bear it through most of the time. Prayer works and I am fortunate to have a large group of praying people around me. I pray all your biopsies turn out negative and you are felling better soon. I found out just how good apple juice is, and popsicles are now my favorite food group! Keep your chin up and remember to take one day at a time!