MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Sounding Off

Home forums Patient Message Board Sounding Off

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
  • #46259
    Donna Clabaugh

    I’m sorry, I just need to sound off.
    I am a 74 year old widow recently diagnosed with Myelodysplastic Syndromes & Myelofibrosis with a JAK2 mutation.
    My platelets have been steadily dropping for the last year. Due to my age and frequent bouts of diarrhea my primary doctor referred me back to the gastroenterologist (Dr B) that did my last colonoscopy 3 years ago. I informed her of my low platelets (this was before the bone marrow & diagnoses). She insisted I needed a colonoscopy and EGD. Her nurse scheduled it but they failed to send the request for clearance from my hematologist (Dr K). I requested they do this on 3 occasions after I had to postpone the procedure, they were not even aware that they still needed clearance. In the meantime when I asked my Dr K about it he did the bone marrow and said he would clear me for the colonoscopy if Dr B would call him so that they could discuss the possible need for a platelet infusion if she planned to do a biopsy. When I asked her to call him she refused, she said he could fax it to her. During this time my primary doctor had me take a note from her to Dr B requesting something else and a cologuard be done first. Dr B handed me back the note and said I had to have the colonoscopy. My primary doctor ordered the cologuard test which came back positive so she said I really needed the colonoscopy. I was scheduled to see Dr K again so I asked him about the clearance because of the positive cologuard. He agreed I needed to have it done and wrote out the clearance and gave it to me. I was not happy with Dr B’s refusal to call Dr K but my primary doctor really likes Dr B and I had had this procedure under her before so I convinced myself it would be OK. She had scheduled it as a outpatient high risk at the hospital because I also have a heat murmur and high blood pressure.
    I checked in Monday morning and felt all was well. The staff at the hospital were all very nice and I made sure they knew about the platelet issue. They noted it on my chart. My blood pressure was a little high but I told they I had not taken my Losartan that morning. The procedure went well and as soon as I woke up they removed the IV and told me I could get dressed and go home. I dressed and was discharged. MY daughter and I went to a near by restaurant for a lite lunch. When I went to the restroom I was bleeding. We went immediately back to the hospital to report this. Dr B was in the middle of another colonoscopy but the nurse spoke to her. She said I should go home and rest. She had done removed a polyp and done a biopsy. Some bleeding was to be expected. She said if it wasn’t better in awhile to either call her office or go to the ER. I went home where I began to have severe chills. I took my blood pressure to see if it was dropping because of the bleeding, it was 173/89 and my daughter took my temperature which was at 100* The bleeding seemed to be lest but was still there. I called her office and spoke to the nurse who contacted her at the hospital. She said again I should stay in bed and drink lots of fluids and to take Tylenol. I took the Tylenol and my blood pressure meds and stayed in bed. The chills finally got lighter and my blood pressure dropped to 155/73 so I did not go to the ER. The next morning the bleeding had stopped and I was just very weak. When I reviewed the discharge summary they gave me it said she had removed 2 polyps with biopsy and did random biopsies for colitis in the colonoscopy and she had done more random biopsies in my esophagus and stomach as well. No wonder I had bleeding. I plan to find another gastroenterologist as I do not plan to continue as her patient. I have said all of this just to say that we all need to be very careful who we allow to act as our doctors. It is not like it was in years gone by when we went to our family doctor who knew the whole family and everyones history. If you had to go to the hospital they were your doctor and came to see and treat you there. I don’t much like the medical profession now. Sorry for the rant, thanks for listening.

    Roy Powell

    Don’t be sorry for the rant… we have all been there. Some Docs will stand on a pedistal and and tell you what to do but any final decision is always yours … always. Don’t be bullied by a white coat.
    82 yrs.

    Melinda Johnson

    Donna, You have every right to be frustrated and angry. It is absolutely unforgivable and ridiculous that medical professionals do not coordinate properly. Since you are managing a few health issues and advocating for yourself so effectively, I hope that if it is at all possible, you go to Mayo Clinic. There are 3 Mayo Clinic centers in the US. The emphasis is on collaboration. The experience of being there, having tests scheduled back to back and results available within a day so that your health team can meet with you an COORDINATE your care is unlike any other institution.

    Keep up the fight!

    Donna Clabaugh

    Just wanted to say thanks for the support. I have notified my primary that I will not go back to DR. B.
    The good news is both the colonoscopy and the EGD found no cancer. Thank you Jesus.
    After seeing my primary to get the results she has said that her plan is for the hematologist to always be our first source and whatever he says rules.
    I can’t go to MD Anderson (not that I want to) they are not in my insurance network. I really like my hematologist and he is also an oncologist.

Viewing 4 posts - 1 through 4 (of 4 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.



Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert