marylloyd
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Kristen,
I have not had time to post the past month or so but have been reading about your trials. All I can say is that if this was happening to me or my Tom I would be raising holy ****. Seriously, I do not think this is “normal” or some thing you just have to “live” with at all! There have been some pretty appalling stories on here lately about what people are being put through and yours is one of them. Tom had many external drains during the first 6 months he was diagnosed and they NEVER leaked, not a bit. Pain is not normal either. He had some pain when he had two drains placed for brachytherapy but that was because it layed too close to a nerve. That was just a temporary drain for a few weeks. I really, really think you need to go to an expert at these procedures. I don’t know how big the hospital is where you are treated but the bigger the better as far as I’m concerned- when it comes to this. The more practice they have and expert they are the better! I can’t imagine what you’re going through and am very sorry to hear all of this when you’ve been doing so well for so long. I hope you can get this taken care of as soon as possible. I can’t even imagine a Dr. telling us Tom would just have to live with bile leaking all over him all the time. No way!! Is it leaking inside you too?!! It must be just running out of your liver. That’s absolutely crazy. Please go to a University Hospital or somewhere else where they can take care of this for you. Sorry for being overbearing but it really, really isn’t normal!!! Take care, MaryHi Marion,
Sorry Narinder, but yes that is the correct e-mail. We’ve been very busy selling plants seven days a week for the past 5 weeks. We’re done now and Tom is having an ercp next week to remove the stent placed in April. I will write when we get through that. Fingers crossed for no drama this time- just easy like the good old days. MaryThat’s wonderful that your Dad is doing so well. Your Dad’s initial diagnosis and treatment sounds just like my husbands.He was diagnosed with a klatskin tumor 4 years ago in June ’06. They initially did surgery but also decided removing the tumor was too risky. They followed up with intensive radiation and brachytherapy and his tumor went away and he remains tumor free. They still won’t say he is cancer free( he actually now has early prostate cancer) but they have not found anything after repeated biopsies so we think he is “cured”. I also believe very strongly in the benefit of foods and supplements in fighting cancer and this one in particular.In a lot of ways my husband is healthier now than pre- cancer diagnosis. His cholesterol, blood pressure. weight are all better.If it weren’t for scar tissue and now this prostate issue he would be fine for 62 years old. Thanks for your story and I hope your Dad continues to have good health. Mary
Wow Betsy,
I really need you and Tom to correspond. You sound exactly alike. I can’t imagine what you guys have to go through! Last Monday AM he was waiting in his hospital room (after hanging out there all weekend for them to decide what to do) and the team of residents came in, he asked if they knew when he was going to have his ERCP, they kind of looked at him blankly and he told them to get out if they didn’t know anything. He said they just looked at him shocked and he said, I mean it, just leave, all of you! Ha! He said the nurses were eating it all up. I guess they enjoy seeing the patients get angry at the Docs instead of them all of the time. Anyway he gets tired of the constant poking and prodding too and last weekend was kind of the last straw. I think the Docs got the message loud and clear. Sometimes you just have to get forceful for them to tell you what is happening. At least the abcess cavity is geting smaller. Hopefully it will continue to shrink and they can take the drains out. Your situation sounds very confusing. You need to have the Docs sit down and literally draw you a picture of what’s going on. We’ve had them do that quite often. Take care and vent whenever you feel the need. We all understand believe me! MaryThis is great news Kris. My husband had wonderful luck with external beam radiation, xeloda and brachytherapy. I hope it all works every bit as well for you. Take care of yourself, drink lots of fluids and get plenty of rest during radiation. It does tire you out. That was really the only side effect he had other than some heartburn too. Best wishes- keep us updated! Keep those Swedish Drs. on their toes!! Mary
Betsy,
Tom and I wish you the very best. I really hope you have healed with no need for surgery. Anyway I have been reading your posts to him in order to scare him enough to really take it easy while they have this stent stretching his duct. He really doesn’t want to go through what you’ve been going through. I’m glad they take such good care of you at the Clinic. My sister-in-law spent 7 weeks there over the winter and ends up there once in awhile now but mainly just out-patient. We must be getting old because we get together and talk about all of our health issues and experiences with Drs. Unfortunately there’s always lots to talk about!! Take care and keep us informed. I’m looking forward to hearing good news from you on Mon.
MaryTom’s doing better today. He looks better too. He says it’s the good home cooking! HA! One thing about the hospital, the accomodations are decent but the food really stinks. Anyway we’ve calmed down a bit and I don’t want to sound too negative about OSU , at least re: Dr. Bloomston, his main Dr. They literally saved his life down there! If he had gone anywhere else locally they would have only offered chemo and sent him home to die. It was their aggressiveness that has given him the past 4 years of relatively good health- we just want them to be a little less aggressive now. Everyone gets panicked about elevated tumor markers but we really aren’t. He has a badly scarred liver, it may be pre-cirrhosis and everything I read says that causes elevated ca19’s. Anyway he will get through the next couple weeks and who knows, maybe stretching this duct will really keep him from ever having a stent again. The pain probably is from the stretching. but boy it really seems like a risky thing to do. I don’t want him to lift anything or bounce around on the tractor etc. It makes it very hard this time of year for us. Oh well, I actually like driving our little tractor and mowing so I’ll do that and he can stand and water plants for 3 or 4 hours a day! Fun, fun!!
Take care all, MaryBetsy,
How are you doing? Has the tear repaired itself? I saw that you posted the other day. I’ve been thinking about you and hoping for the best.
MaryHi Guys,
Thanks. Tom actually wants me to get an appointment for Pittsburgh. He got home a little bit ago. He’s still jaundiced and having pain but is a little better. He is on antibiotics so hopefully he’ll be better in a few days. I guess the docs actually made it seem like he wasn’t really all that sick but his billirubin was 6.1 on Fri and his urine was brown plus the pain. I just don’t get it. He was fine a week ago and they made him sick, then acted like it was all in his head! Like he wanted to sit around in the hospital for three days- they obviously don’t know my Tom. I’m worried he’ll go out and do too much and rupture something! I like Dr Oz. I wish we could go see him. Sometimes a little common sense goes a long way. Take care all. MaryThey’re sending Tom home today without really doing anything. In four years I have never felt like the Drs. have brushed symptoms etc off, ecspecially since we’ve never been ones to jump to conclusions or be hypochondriacs, but I feel that way now. He has a bilirubin of 3.2 when a week ago it was 1.2, his liver enzymes are out of wack and he’s having pain when he has never had pain before and they’re telling him he’s fine. I hope I’m wrong but I assume I’ll be hauling him back to Columbus in a few days. The problem is I am to the point that I think it’s time to switch to Pittsburgh for his care. I really don’t want him to go back to Columbus because we are actually concerned about them being too aggressive. We’re not worried about the cancer as much as we are that they will kill him with all of their dilations, scoping, biopsies etc. I wonder how Betsy Kubbins is doing ? She had a tear in her duct which is what I am really afraid of for Tom. What a mess!! I wish he had just gotten up off the table in Feb. like he said he considered doing. He really didn’t want them to do all of this and I don’t think it’s right for them to do it without your knowledge. All we thought Tom was getting was a stent change or removal on Weds and here they stretched him to the point of him having all of this pain, he has another infection and they scraped him looking for cancer cells when they just did it 2 months ago. Just venting… I’m very tired. I have a greenhouse business that I really need a little help with and last week I had my 23 year old son and a healthy Tom , I’ve been on my own except for my 11 year old dog since Tues and I’m feeling stressed with everything. I just wish they had left him alone…do no harm!!! Mary
I’m so glad you are back home Kris! It must feel really wonderful after a whole month! Take care and have fun filling in your “droopy” butt!! I wish I could help you out by donating some of mine! We love having you back!! Best wishes for a speedy continued recovery so you can get started with radiation!! Mary
Well, I just got home from Columbus. Believe me, happiness is Columbus in your rear-view mirror!! Tom got up at 3 this morning and was itching, jaundiced,etc and they said to bring him back down. He is to have another ercp tonight or in the morning. This will be his 24 th ERCP!! I couldn’t believe it when of the Docs said he reviewed his chart checking to see how many he had over the years. He thought maybe 4 or 5 was the norm but he was really impressed that Tom has had 23 soon to be 24. No wonder his poor liver is scarred and damaged. Hopefully this is it!! Mary
Kris and Hans,
I just ditto everything everyone else has said above. I hope you get back on your feet asap and they will be able to start radiation. It can really work as Kristin says, so don’t lose hope! Take care. MaryWow Betsy, it seems like you have no “good” choices as to what to do. I hope they can figure this out without causing you more problems and without major surgery. Keep in touch and take care. Best wishes, Mary
Hi Betsy,
You are the “Betsy” from Cleveland right? Was the hole in your duct caused by them trying to dilate it with a balloon? I believe the last post I read of yours that was what you were having done. I’m very sorry for all of your troubles and hope you don’t have to go through more agony.When my husband had his dilatation, they mentioned that they could cause a “tear” and didn’t seem to make a big deal about it, just that he would have to have surgery to fix it. Sounds like it is a BIG deal. We are to the point ourselves that we don’t want them to go inside and do anything to him anymore. He has a stent in at present after being septic and in the hospital for 5 days after an ercp gone wrong. We just want them to take out the stent and leave him alone. Do no harm! I hope things go well for you. Keep in touch and take care of yourself. These infections really can drag you down! Take care, Mary
PS- As far as it repairing on it’s own, I doubt that it will, depending on where it’s located. Bile is so toxic that if there is any damage inside of the ducts it keeps the cells from repairing themselves. I think that is why my husband has rising tumor markers and cholangitis. They have taken so many tissue biopsies and done so much scoping I think his ducts just can’t repair themselves once the damage is done. They just scar.
