kvolland
Forum Replies Created
-
Posts
-
Lainy –
Not knowing all of your story….and you may have answered this in another post but have you thought about an ostomy of some sort. Depending on where the worst of the disease it, it could be a colostomy or ileostomy. I know it seems rather extreme but I have had some patients in the past that have had to have it done for complications of some sort and wish they had done it sooner. And with the right Ostomy Nurse teaching it usually is fairly uncomplicated to deal with.
Just a thought coming from the nurse in me.
And half and half news is sooo much better than none at all.
Kris
Lainy –
We have done Remicade infusions at home on occasion through the agency I work for and the patients I have dealt with have not had any really problems so to speak. I know reading about all the what-if possible side effects can be scary but they got to warn you about any (and I do many any side effects ie. you might get a rash if the wind blows from the SE on an odd numbered day – totally tongue in cheek but that what it feels like). I think that it is with any new treatment….worry about the unknown.
Hope things go well for you and this makes things better for you. Good Luck and positive thoughts your way.Kris
Lainy and marions
We both say thanks for the Birthday wishes. It was a long drive home but worth it to put our feet up in our own chairs. Now for Chinese food for dinner….his Bday request so I didn’t have to cook either. House was still standing and fairly clean so I was happy. My son is looking good too so that made me even happier. Glad to be able to celebrate at home.
Thanks to everyone for your support and input the last few days. It has been greatly appreciated.KrisV
marions
I have a feeling that is the way things are going to go. They say there is nothing wrong with the liver right now (Liver function is better now that presurgery) and they don’t see anything on it….yet, because I know they can’t see it all. But I know they are already worrying about the stricture and wanted to put a stent in with ERCP last time we were in. That did not come up this time…mostly worried about the port. Just want to get to doing chemo but I suspect infection will be an issue.And he gets to go home today…..It’s his 50th Birthday today….what a way to celebrate it….coming home from the hospital.
Well, we finally have a plan. I convinced them NOT to pull the port out and we are going to due two weeks of IV antibiotics through it and hopefully that will kill it IF it’s in the Port or where ever it is in the body. It will put off chemo a week and I am not sure that the docs are all convinced it’s the right decision but it was given to us as an option.
marions – I tried getting them to just give us some antibiotics to have on hand but they aren’t at that point yet. They want to try to find the source and I suspect that he may have a small abscess in his belly from the original surgery. We had issues with the incision and a deep probably 7cm pocket that opened up in the middle of the incision. I just suspect that its a small something that they aren’t seeing on the CT scans. Just my hunch from years of nursing. Besides if they pull it we have to have another surgery to put another one in….I don’t want that. And I am driving him nuts with the temps, blood pressures and all that. He’s getting good and checking himself.
And I am so proud of my daughter for stepping up. This has been pretty hard on her and I have had to ask her to do things she not used to….along with the stress of two cancer and trying to raise her son.
Home tomorrow though! WooHoo and maybe back to work on Monday…for me. I can hope.
Well the docs are still standing and scratching their heads. CT scan came back negative for any abdominal abscess from the surgery and surgeon says he doesn’t see any reason to do the ERCP or any exploring right now. I have pushed hard NOT to pull his port unless we can prove that the infection is coming from there. Initially they said they had to pull the port to find out but now they are saying there is a series of tests that they can do that can pinpoint the port….okay let’s do that people rather than have to take the port then ANOTHER surgery to put another one in.
Talking about sending him home with IV antibiotics which is fine with me. I can deal with that.
Did get to go home last night….had to check on the son. He just spent 5 days inpatient for an abscess that developed in his neck after his thyroid cancer surgery. They opened him up a bt and now has daily dressing changes. My 22 year old daughter who thinks everything is yucky (changing a dirty diaper on her own kid about sends her over the edge) actually stepped up and is doing the change with no whining….amazed at that. Going to make her a nurse yet.Also you may want to look at other medications that she is taking. Some medications can increase bleeding times (taking longer to stop bleeding) such as aspirin, ibuprofen (Advil) and naproxen (Aleve). If it has been prescribed by an MD then I would talk about risks versus benefits before just stopping any medications. But a lot of people take those over the counter without thinking about it.
Also ask your pharmacist if any of the medications can cause thinning of the blood and longer bleeding time. Pharmacists are great resources when it comes to medications since it is their job.
Good luck !Oh boy, I wish I could do email that would make it so much easier but texting is the wave in our lives. Initially when he had surgery we had it all worked in a phone tree. One family member that would take a text from me or one co-worker and then they would forward it on. It worked for about 4 hours into surgery then when there were no updates everyone assumed that they just weren’t getting information so it reverted back to me (and after 14 hours it was awful). I narrowed it down again but I can’t seem to get his family to back off…..of course there is a HUGE history there. I have never been good enough for him and have battle that from day one. Now I don’t care. I give them information when I have it and ignore when I don’t. I also turned the phone off in his room so they can’t bypass me and bug him. Maybe it is overprotective but it’s not his job right now…..his job is to get well and beat this thing. I really just quit worrying about what other people or think or care, as long has Mark is comfortable and not upset.
I think I probably wouldn’t be so overwhelmed if it wasn’t both my husband and my son trying to wade through this. The nice thing is my son is able to deal with his friends so I don’t have to and that takes a bit out of it.My family has been pretty good. My sister spent the time to go online and read about it. I know she had been on this site and read up a bunch so that helps. So have a couple of the kids. I suspect that my husband’s sisters have but they want me to dribble out every bit of information and when I don’t then I am leaving them out of the loop. We tried the one person as the contact and then forward emails but people got impatient and bypassed the system. I now just tell them when there is news and ignore them where there is nothing to say…..plus I turned off his phone so they can’t bypass me.
People really don’t know what to say but some of the things they do say are outrageous. I had one lady asked how long they gave him to live. (uh, duh he doesn’t have that expiration date on his behind so I have do idea). Also have people say that it’s too bad he’s such a drinker and he never really has been then you get the look of pity thinking you are in denial. I want to print pamphlets up to hand out.
It’s just crazy. I am glad I found you all….this has helped so much. I always tell my patients to find something….a support group or something so people can compare stories. If you have a problems someone has dealt with it and has ideas. Love it.
I have had an appt with my doctor twice in the last two weeks to see about getting something but I end up having to cancel it because we are back in the hospital with one or the other. I try really hard not to take meds at all….well except my blood pressure stuff but I think something to take the edge off will help. I am very lucky that I have a great counselor that I have been seeing off and on for several years so I already have a great bond with her. She will even just do phone calls if I can’t get into the office. It helps to be able to vent to someone who makes no judgement on what I say.
I have come up with things I will never say when this is all over with….the top of my list is “How are you doing with all this?” I fight the urge to scream and say “HOW THE …… DO YOU THINK I AM DOING?” but I control myself and am polite always. And then the fact that his family is not overly supportive does not help (They would be happy if I disappeared) so I get caught in the middle trying to keep them and him happy then taking the blame when things aren’t right.
And of course they all think they have medical degrees so despite the fact that I have RN behind my name, I have no clue what is going on and am being too smothering and overprotective of him.Sorry to vent…..just had to deal with family stuff again so by dander is up a little.
I want something other than hospital food…not complaining because it’s pretty decent food just tired of hospital food. So CarmelKorn, Cracker Jacks or whatever would just be good. Figured out last night that I have spent 24 nights in this hospital since June 2nd with either my husband or my son. Some of the staff have even started to recognize me.
Blood cultures just came back and the two peripheral draws came back positive for gram-negative rods…..my guess is the Klebsiella again. They are getting ready to do another CT of his abdomen to see if there is an abscess in there that they missed two weeks ago. I still think it is probably the anastamosis of the small bowel and the bile ducts. The GI doc thought they might be narrowing and causing issues thus needing stents with an ERCP. I hope not but that’s about where it goes.
Feel like I am verging on my own nervous breakdown now…..this plus my son’s cancer….it’s just about too much. Especially trying to be in two places at once. I actually just hoped they would be in the hospital at the same time.Ahh, Lainy I am so sorry that it happened that way for you. As a home health nurse (and home hospice if needed) I so very understand the importance of listening to and following what has worked for the family. It’s part of the reason I stopped working in nursing homes because sometimes their focus was on the wrong thing. I guess we are lucky in our area….while the company I work for doesn’t have an inpatient Hospice they have worked around that in several ways and there is a great one in a nearby community. The unfortunate thing is that we all have to keep a close eye on our loved one’s medical care to make sure they all get it right. The sad thing is there is very little you can do to combat pure negligence and falsification like that. It would not be expected. I am glad you went after them as was well deserved.
Secret Agent, I hope you got it all worked out. That is really the last thing you should have to worry about.
Kris
I know it’s a pain but have the ONC write out an order for exactly when then lab needs to be drawn (i.e to be dawn every Monday or every other Monday)….I know 2 days prior sounds like exact enough but that may not be enough. It’s possible that the nursing home has a specific day that someone comes in and draws their labs so they have everything drawn on one day (like Tuesday). I have worked in nursing homes where the ONC gives an order for specific draws and the staff would contact the primary care MD to get the order change to suit their draw schedule.
Unfortunately you will probably have to stay on top of it and continue to ask questions. Just remember that the squeaky wheel gets greased and even if you can’t be there all the time, phone calls help.
Also remember that most states have an Ombudsman program that can listen to concerns and help work as an intermediary between you and the nursing home. There should be information on that posted somewhere prominent and if not then ask.Good luck, Kris
We are definitely looking at a second opinion if the subject of the ERCP comes up again. So far the last set of blood cultures are clear and his white count is normal. Temp crept up the other night but I suspect that is related to overdoing it and not drinking enough fluids.
I am seeing that infections do seem to be a bigger issue after the resection which I wouldn’t know unless I had read about it here. It was not something that we were warned about after surgery. Well other than the initial concerns of infection after any surgery. We are continuing to keep an eye on it and it sounds like the oncologist is going to keep a good eye on it.Kris
Thank you all for your support and thoughts. It’s very nice to be with people who understand this so well.
We had our surgery at Virginia Mason Medical Center in Seattle, Wa with the most wonderful group of doctors. The lead surgeon was Dr. Flavio Rocha and he has been absolutely wonderful through all of this. We really did not get the final diagnosis until after surgery since they did not biopsy prior to surgery. They were basing it all on the imaging – MRCP and CT scans so no one would say absolutely until after surgery. The surgeon was pretty blunt about what he thought it was however plus risks, benefits and survival rates.
As far as the initial possible diagnosis, it was done by an ER physician at Providence St Peter Hospital in Olympia, Wa and he really needed a better bedside manner. My husband had a CT scan for left mid back pain that I thought was a kidney stone (we still thought the RUQ pain was gallbladder). He handed me the CT scan report and said….Mark has dilated bile ducts, that is indicative of bile duct cancer so you need to follow up with your PCP. Oh and he doesn’t have a kidney stone. The doc then fled the room leaving us in shock. We thankfully followed up that week with an Olympia surgeon and GI doc who were on the ball. The GI doc finally said the words cancer and then explained what and why he was worried. He then referred us the next day to Seattle. I still say we were lucky that it moved that fast.And yes, it has been a crazy couple of months with both having cancer….Feel blessed that my son’s is ‘just’ thyroid cancer which has an excellent survival rate. We are just waiting to schedule the radioactive iodine treatment in the next couple of weeks.
