Discussion Board Forums Introductions! My Introduction to the club and trouble finding help for my son

Viewing 11 posts - 61 through 71 (of 71 total)
  • Author
    Posts
  • #80649
    makua
    Participant

    Kathy, thank you so much for your reply. My son’s doctor this time was Dr. Kenzo Hirose, so not the same as yours. And we will absolutely ask for a different doctor when he has to return at some point. He has an appointment tomorrow to see about the port in his chest, somewhere up in our area. He was supposed to be slowly weening himself off of the IV nutrition, but has not been able to do that because he is still vomiting, 2 times yesterday.

    I am so sorry that you had such a hard time in the beginning. I am glad you were finally able to get satisfactory help. That is a blessing.

    No, I do not have access to records online, never heard of them, but will check on that and mention it to my daugher in law. She is handling everything. The woman she spoke to at JH last week, about trying to get a sooner oncologist appointment was very disagreeable and rude to her, and she was not able to change the appointment. I just don’t understand how it is possible for her to be running into so many extremely disagreeable people now when we need help so desperately. Everyone at JH was so wonderful 2 years ago.

    It is difficult to not have first hand info from the doctors myself, but at my age, 81, she has much more energy and resilience than I do for handling all this, She is getting really tired and frustrated at this point tho, seemingly blocked at every turn . Not only is the disease devestating, but the struggles finding effective care, all the roadblocks and red tape, make it even more difficult than it is already because we wind up so angry in addition to being heartbroken.

    UH OH!! Uh oh!!! I just this minute got a text from my D in L, my son has had to go to the ER and may well be admitted to the hospital, Robert Woods Johnson U hospital. They are waiting on blood results. And he may well have a CT to check the stent placement too. I’m glad about that.

    He has a fever, and they suspect the Picc line is infected. AGAIN dr. Hirose, should not have sent him home from JH for IV nutrition without a port!!! since the picc lines can get infected. That man has done nothing right, it seems!!! Yes, I am sooo angry with him.
    OK, I will tell another reason why I am so angry with this man for wasting our precious time. Probably not PC, but here goes…

    For many weeks we were unable to get Dr. Hirose in JH to take the time to consider my sons condition. Prior to his being admitted this time, over the course of MANY long weeks of vomiting and inability to keep food down, and an endoscopy up here, we were unable to get Dr. H to reply to calls from our physicians up here, tho the local doctors had sent images and records of their attempts to help him. He simply did not reply, no calls back. He just didn’t seem to want to bother with my son at all, and didn’t return calls from my desperate D in Law either. Because of the extremely complicated surgery he had had 2 years ago, (the rouen-Y and lobectemy etc.) these local doctors were hesitant to take any steps, and wanted help from JH. Our doctors up here felt baffled, and I think that is understandable considering the complexity of the surgery he had in 2012 and how few hospitals do that sort of surgery.

    Their GP up here, a caring and responsive man, had an endoscopy and cat scan done and sent those to JH, but still no response from Hirose. Finally after desperately taking him to an ER in our area to be hydrated, the next day, beside herself with worry and still having received no contact with JH, she finally just put him into the car and started down to JH, a 3 1/2 hours drive, calling first to say they were on their way and giving JH a heads up.

    Hirose had his nurse call back as they were driving and said to turn around, go back home, and take some milk of magnesia, and a couple enemas, that he was probably constipated. He did that, and as a result wound up in the ER again, even more dehydrated, and was admitted to the hospital in renal failure.
    How he could recommended Milk of Magnesia and enemas to someone who had been unable to keep food down for several weeks, and who had already been in an ER to be given fluids for dehydration, I do not know!!! Seems absurd to me, but yes, I know i am not a doctor, still…..

    If he had not been sent home and had been admitted to JH, he could have been treated several weeks earlier. as it was, It took Centra State up here almost 2 weeks just to get his numbers back to normal. We are lucky he didnt’ have a heart attack, we are so lucky we didn’t lose him then. Finally when they did get his numbers back to normal, they were able to contact JH, and that time they had to wait a few days for a bed, and of course the snow storm. He was finally transported down by ambulance.

    I have no confidence in this man at all. Our new doctor already said he couldn’t understand how JH could send him home without a port, and now we are seeing the results of that bad judgement with this possible picc line infection!!

    Ok, I vented, Maybe I shouldn’t have, but it just seems that by his unresponsiveness to all the pleas from our doctors and my D in L over the last couple months we have lost precious months when my son should have been getting proper treatment. I pray that all this lost time will not impact my son’s treatment too badly. Really sorry if I have said too much. Yes, my info is all 2nd hand, I realize that, but my D in L has kept me informed at every move they make. Poor woman is emotionally exhausted at this point, and their little 7 year old daughter is suffering too from seeing her father in such awful condition, over the last couple months. I must stop, this is much too long. Forgive me.

    #80648
    chezwrightaol-com
    Participant

    Hi again,
    I am so sorry you are having this concern and all the frustration of time elapsing! It all feels so helpless. PC = Politically correct…..but we should all be aware( I believe) of where we might bump up against walls and sharing these can be helpful to others. My first doctor was Andrew Cameron whose father is John Cameron who is presented as the doctor who has done more whipples than anyone else in the world. He certainly is well-known (John that is)..I have had several friends who have gone to him and not found him personable..but as I mentioned before, if he does the trick, forget the bedside manner. I am not sure why I was given Dr. Andrew Cameron at the beginning…a very young guy and really specializing in liver transplant which was never presented as an option. He had never done any surgery for bile duct cancer and therefore would not do anything without the cancer board directive and every time he came back, he said another ERCP…and it always took several weeks to get any news back and then there really was no news ..except not enough tissue to get a definitive answer..etc. So if for some reason you got Dr. Andrew Cameron, my guess is he is not who you should have. On the other hand, you might try Dr. Tim Pawlick. Do you have access to records on line? If not, sign up for them. You can send a message for appointment or consult and so far, I have always gotten an answer from them in 24 hours. There is also a number to call. Request an appointment.
    Sorry I can’t be of any help about relief for your son right now. But others here who’ve had more experience will definitely help you.
    Sorry to be long-winded. We are keeping you in our prayers.
    Kathy

    #80647
    makua
    Participant

    I just spoke with my daughter in law, and she said that my son is not feeling well again today, he is having some discomfort in his stomach, and threw up again this morning. I have swollen glands and don’t want to go near him till I am better.

    Someone I know who had lung cancer and has been being treated for 6 years now, said that her doctor, Dr. Nissenblatt, whom everyone loves, but who is not taking new patients, prescribed Marinol, (medical marijuana) and that it was a tiny little pill and it helped a great deal with her vomiting. Since she used the same service where my son is going at the moment, we are hoping that perhaps his doctor, Dr. Phillip Reid, will be able to prescribe it for him too, tho my son was hoping he would not need it.

    Has anyone here had any experience with Marinol??

    I am sitting here, feeling more discouraged since hearing he is not feeling well again today, and is so uncomfortable again, and I am helpless to do anything about it.
    Tomorrow, I will try and call Dr. Schulick in Colorado a third time, but I doubt I will hear back.

    I feel we have wasted so much precious time, when he could have had chemo a couple months ago, but did not get treated simply due to what I consider neglect, and disregard, or worse by this doctor, and I fear how much the CC has progressed during this wasted time.

    #80646
    marions
    Moderator

    Makua….sometimes you have no other options, but to engage a physician in contacting another physician. Your GP or GI doc may be able to help you out or any other doctor involved in your husband’s care.
    Good luck,
    Hugs,
    Marion

    #80645
    makua
    Participant

    Kwolland and others, I want to thank you all so much for your replies, bless you KV, and I pray that your husband feels better soon. The endoscopists did go in and look and said that the stent was still in place and working, and that they could tell that there was some food emptying from the stomach, which was why they could not understand the continued vomiting.

    My daughter in law and I have both called and left messages for Dr. Schulick, but so far after a couple weeks, we have not heard back from Dr. Schulick. When I called, the lady said that he is chief of surgery and has a very full schedule, but she would leave the message.

    Kathy, thank you so much, it is good to know that someone else had problems of the same kind and managed to get relief. I will tell my family about it. Hopefully we will be able to get a different doctor and team. You did not mention who the first doctor was, and I am wondering if perhaps we might have had the same person.
    You said, ” Maybe you were being PC to not mention who is doing the follow-up at JH.” I do not know what PC means. :-) I just did not know if it would be correct to mention his name.
    Thank you Willow, I will search for Lisa S.
    Marions, I went to the link and it seems to be the same building we called 2 times so far, but the number is different, so I will try again tomorrow. and thank you Lainy, I will not leave, I am so glad I found you all.

    #80644
    marions
    Moderator

    Makua…..I agree with the others – there is no reason not to contact Dr. Shulick: http://www.ucdenver.edu/academics/colleges/medicalschool/departments/surgery/Pages/ContactUs.aspx
    I have learned that biliary blockages can cause consistent vomiting, but there could be other reasons as well. And, that you need to find out. Therefore, I would mail the latest scans and physician reports to Dr. Shulick for review, as he is most familiar with your son’s current anatomy.
    Please let us know. We care.
    Hugs,
    Marion

    #80643
    kvolland
    Participant

    Dear Makua –
    Well come to this wonderful family. Never worry about what you post, this is a great place to vent and let everything out. We have all done it.
    I have no answer about doc’s to go to on the East Coast since I too live on the West Coast, but be the squeaky wheel. If you don’t like an answer then keep pushing and asking.
    As for the stent, he should be feeling better as the stent should be keeping the duodenum open so food can pass. The IV nutrition is a good stop-gap measure to rest his stomach some but should not be a permanent answer (although it could be if needed). Again I would be the squeaky wheel until your son gets some help.
    By the way, my husband just turned 50 and he is 9 months out from the same surgery your son had. I know how that recovery can be rough.

    KrisV

    #80642
    chezwrightaol-com
    Participant

    Have you tried contacting Dr. Shulick in Colorado? My doctor whom I adore at JH also left this past fall and I felt abandoned! , but before he left, he reassured me that I could always contact him in Texas if the cancer returns. I understand so well what it feels like to have the doctor who saved your life ..leave. We were referred to Dr. Tim Pawlick at JH for continued follow up…he has quite a bio and the nurse practitioner whispered to me that that is the one to go to. He is NOT Dr. Choti who was very warm, caring and an excellent listener but if he is competent, I guess that’s what is important. Maybe you were being PC to not mention who is doing the follow-up at JH. If you did not go to Dr. Pawlick you might want to try him as he does have considerable experience and seems well respected in the larger community. Marion may know of him.

    Do NOT give up. Call Dr. Shulick for advice or try Dr. Choti who is at U of Texas Hospital in Dallas or any of the other wonderful doctors people will recommend here.

    Keep us posted. I know you will hear from others who have much more knowledge than I do. This is an amazing site.

    Thinking of you,
    Kathy
    PS….I went to someone other than Dr. Choti at JH at first, but after 7 weeks of dallying around with NO progress and no decision, I switched and it made all the difference. Do not hesitate a moment to switch doctors at JH.

    PPS…I am just rereading your posting. That was exactly my first experience..two endoscopies, a stent which they removed for the second endoscopy and although I had protested the second endoscopy because I didn’t want the stent to be removed and replaced, I was told “a piece of cake.” End result…it couldn’t be replaced ! Then the same doctor wanted a THIRD endoscopy and a stent put in from the outside. I switched doctors as this was now 7 weeks from my first appointment and I was getting panicked at letting it go/grow so long. When I went to Dr. Choti, he was very professional but reassured me that whoever I chose, it was entirely up to me and to not worry about the other doctor. He operated within 5 days and no further endoscopies :) SO….it really does depend who you get. Call Dr. Shulick and ask for a referral to one of the other doctors at JH…or who he would recommend as you felt so much confidence in him in the first place.

    #80641
    lainy
    Participant

    Dear Makua, welcome to our extraordinary family but I am so sorry to read about your son. Glad you are no longer a lurker! Please do not apologize for your post, as a mother myself I probably would have exploded by now. We are here for you and your family, members come here to rant, rave, advise and get advice. There is no one monitoring our posts we are an open forum. I am really surprised at JH and SK as most of our members have gone to several Hospitals and the ONCs work together. The only other suggestion I could give would be to send Discs from both hospitals to Jewish Barnes in St Louis to Dr. Chapman and to MDA Houston to Dr. Javle and ask them if they can give you any advice. Wish I could tell you more but I know others will be posting, it’s always slow over a weekend. Stay with us, we truly care.

    #80640
    willow
    Participant

    Im so sorry for what your son is enduring. You have not posted anything inappropriate. This is a great forum to voice your concerns and ask for support. I don’t know how to help specifically with where to go in your area (I live on West coast) but clearly he is still having acute problems so I would seek a doctor (GI or surgeon) ASAP to eval that stent. I would be surprised the onc would proceed with chemo until his symptoms are under control and he can hold at least some food down. To answer your question about the stent, I believe the stent in the duodenum is supposed to help food pass when tumor is compressing it from the outside or even growing inside it. Which was case for your son? Sometimes surgeons will perform a (palliative) bypass surgery but not sure protocol for that. LisaS on this board had a similar problem last year and I believe she is doing much better. Try searching her posts under user name search.
    Sincerely,
    Willow

    #9640
    makua
    Participant

    Hello all, I am so happy to have found this group. I have been lurking for a few weeks. 2 years ago, my 50 yr. old son was diagnosed with bile duct cancer, and had surgery at John’s Hopkins hospital in Md.
    A wonderful surgeon Dr. Richard Schulick performed an 8 hour surgery, called:
    a unilateral hepatojejunostomy with Roux-en-Y anastomosis and left hepatic lobectomy. The wonderful doctor said that the pancreas was fine as were his lymph nodes, and all the margins were clean. The staff at JH was superb, very caring, and expert.

    After returning home after the surgery, he had several severe setbacks, which I won’t go into here, except to say he had terrible bleeds and had to be helicoptered down from Central NJ to JH twice and once by ambulance. All 3 emergency transports within about 4 weeks. It was touch and go whether or not he would live to reach JH, on one of the flights, but he made it. When he was finally able to return home to try and recover, and just as he was able to go back to work, Sandy hit us in NJ, and he wound up with 6 feet of water in his home and the family was displaced for over 6 months. Needless to say, that was not good for his recovery, but he survived, and now 2 years later, it seems the Cholangiocarcinoma has returned. I am not surprised after all the stress he has been under. My heart is breaking for him, his wife, and his little 7 year old daughter.

    The wonderful surgeon Dr. Richard Schulick is no longer at JH, he moved to Colorado and is chief of surgery at the University of Colorado hospital. If anyone is in that area, and wants a superb surgeon for this type of problem Dr. Richard Schulick would be a great choice. Now that my son’s CC has returned we miss Dr. Schulick more than we can say.

    Our experience at JH this time cannot compare with our experience 2 years ago.
    After several endoscopies, catscans, and a petscan, and placement of a stent in his duodenum, he was simply sent home, I feel peremptorily from JH, still vomiting and unable to keep any food down, with a pic in his arm for intravenus nutrition, and told to go home and find an oncologist for Chemo and that they could do nothing else for him, and it was GRIM. no other details. no referral, or hint who to go to for help. He was sort of “set adrift on a scary sea alone and frightened.” Well, we are all frightened.
    So tho they put a stent into his duodenum, it did not seem to have helped before they discharged him, and tho he could still not keep food down, they said they didn’t understand why.
    Has anyone had this experience??

    I will only say that we have been struggling desperately to find someone to help my son.
    Sloan Kettering says he would be a 2nd opinion patient, and that without a current biopsy, (which JH did not want to do) SK could not help him, and to find somewhere closer to home.

    Another wants to start chemo next week after putting a port in his chest. Thank goodness we found him, at least he wants to try and help my son.

    I am not sure how much to say, and if a moderator read our posts first to monitor them, so I do not say more than I should. tho I would not want another person to go through what we have, with this particular doctor. I am very upset after the experiences we have had, feel as if I am about to explode, and hope that I have not been totally incoherent.

    I have been lurking here for a few weeks, and am so happy to have found this site. Bless you all and good luck to all.

Viewing 11 posts - 61 through 71 (of 71 total)
  • You must be logged in to reply to this topic.