Doctor says I'm killing my dad

[choijk]

Dear Friends,

I come to you today very ANGRY and FRUSTRATED.

My dad is considered a “low risk” patient, according to the IPSS score. His only blood line that is affected is rbc’s. His platelets and wbcs are still holding up. His only txmt is 1-2 pints of rbc transfusions every two weeks. My dad is seen by his hema every once a month and gets his CBC’s every 2 weeks. At this time, we have not proceeded with any aggressive treatment. We tried Procrit for a month and stopped since it wasn’t working.

Today, my father was seen by Dr. Alexander Shar of the Hematology/Oncology. He was unable to see his regular hematologist, Dr. Roberto Rodriguez as Dr. Rodriguez is currently on vacation.

To give a brief background, when my father was initially diagnosed with Myelodysplastic Syndrome( MDS) he was referred to Dr. Shar for treatment. My father was seen by Dr. Shar perhaps about 4-5 times before we designated Dr. Rodriguez as my father’s treating hematologist. The main reason we changed physicians is because my parents and I felt that there was a lack of communication between Dr. Shar and us and he made us feel uncomfortable.

Anyhow, my father currently treats with Dr. Rodriguez on a monthly basis but goes to Kaiser every bi-weekly for a complete blood check up and bi-weekly blood transfusions. Since my father was going in today for a CBC, he also wanted to be examined by Dr. Rodriguez as he discovered some red welts on his chest and thought the welts may be connected to MDS. No other physician was available and thus, we were scheduled to be seen by Dr. Shar.

I accompanied my father to his appointment today with Dr. Shar. Dr. Shar diagnosed the welts as Shingles and prescribed him some medication. Then we began discussing my dad’s current treatment plan for his MDS. I told Dr. Shar that we haven’t tried any chemotherapy at this time as we were taking a “wait and see” approach but it’s something that we knew that we would have to do in the near future. To make the long story short, Dr. Shar basically said the following:

1. I am “killing” my father and “someone should call social services as this is elderly abuse.”

2. He “never wants to see” me again as “there are 7 other physicians available.”

3. My father will “die within the next year” because of all the blood transfusions.

Please allow me to remind you that this heartless doctor is an ONCOLOGIST. While Dr. Shar was throwing accusation and allegations one after another, my father was sitting right there, listening to everything.
Obviously my father heard everything and his good spirits are just shot down.

My question for you is, is any of the members doing what we’re doing? i.e., blood transfusions and no other treatment? I would love to hear everyone’s story. I also want to prove this moron doctor wrong as he kept screaming BLOOD KILLS and those who are just on blood transfuions alone will die of heart congestive failure or liver failure or some sort within a YEAR.

Btw, to help with my dad’s iron overload, he is taking Exjade at this time.

Thank you for all your help!

[Frankie]

{{{{June}}}

Ths is horrible and abusive. You should tell Kaiser about it…use his quotes.
I was on transfusions for more than 10 years…every 2 weeks.

Frankie

[choijk]

Thanks Frankie!!! I did!!! I just filed a complaint with Kaiser on their member services online. I am so outraged!!!! I know that patients live for more than a 1 yr on blood transfusions alone! Many people on the forum are living proof of that!

But what makes me so mad is that, how he is speaking to a MDS patient like that! or any other patient for that matter!? I just find it so offensive!!!

Is anyone else out there who is not taking any chemo and just transfusions alone? I would love to hear your story!

[Frankie]

But what makes me so mad is that, how he is speaking to a MDS patient like that! or any other patient for that matter!? I just find it so offensive!!!
——————————-
Unfortunately, there are doctors in every field that think they can talk like that to people/petients.
I don’t stand for it…..and let them know in no uncertain terms. Please, rest easy, as I hope your dad will aslo, knowing this doctor is an a**hole.

Frankie

[bevotga]

This is my first post to this forum. I have been reading for a long time, but have never posted. I had to answer your post because my father who is 78 years old and has been living with this disease for 6 years now, is transfusion dependent. He receives a blood transfusion almost every week and has been for almost 2 years now. He started out on Procrit when he was first diagnosed and it seemed to work for him. About 3 years ago he received his first blood transfusion and he started out getting one every 3 months and then as time went on, he then started needing them more and more often. He tried Revlimid when it first came out and unfortunately it did not work for him. He still receives the Procrit shots weekly although they don’t seem to be helping. He is now as I said receiving weekly blood transfusions. He has since developed some heart problems, which we are currently having to see a cardiologist for, but he is here and surviving. I cannot believe this doctor had the nerve to say the things he said to you in front of your father. This disease is horrible and there aren’t many options for us. Just know that you are doing what is best for your father and that is how we are going through each day. I am glad you filed a complaint with Kaiser about this doctor. You are going through enough with caring for your father to have a doctor talk to you that way in front of your father. Hang in there!

Bev

[Mary4Mike]

June,

I am sorry to hear about the experience you had with that “doctor”. It sounds like you took the right measures in reporting his behavior. I would mention it to your dad’s regular doctor when he returns from vacation, however, don’t be surprised if you don’t get much of a response from him. Doctor’s in a group won’t usually say too much about each other that is negative. The way you described your “conversation” with this guy, I am sure you aren’t the first one to have a run in like this with him. Your regular doctor has probably heard this same story before. I am sorry your father had to sit there and listen to that load of ____! As far as transfusions, our doctor told my husband that he could keep him alive for a long time by transfusions alone…..plus Exjade. Mike is going to try everything that becomes available, but knowing this somehow gives us a little peace of mind. Keep up the good work with your dad, June!

Bev,

Welcome to the posting portion of this forum! One word about Procrit. Our doctor told us that if no response is seen within 6 to 8 weeks, it isn’t going to be beneficial to that patient. Thought you would be interested in another doc’s opinion.

Mary

[shellbivens]

June,

I just read your post and am just as outraged as you! My daddy pretty much refuses to do any kind of chemo treatment. He has been getting by on Procrit shots and occasional blood transfusions. His hemotologist and nurses FINALLY understand that he is NOT going to do the chemo. They pushed and pushed him for many months about starting chemo. Like I said, daddy is doing well, so far. He does have days when he knows his blood is getting low and tries to just take it easy. He goes to the doctor every Monday for blood check and Procrit shot. He did have to have a transfusion last week (blood was down from 11.7 to 10.3). He has heart problems and has a standing order from his cardiologist that states he is to receive a transfusion anytime his blood is below 10.5. Hang in there and try to keep your spirits up for your Mom & Dad.

[Debster01]

Hi June! What a complete idiot. It amazes me that people like that are allowed to practice in this day and age. I just read an article about a man who lived 15 YEARS on blood transfusions and lived a pretty normal life. And is he sure it is shingles about those welts? Are they painful? I just would not trust a thing this man says. You are being a fabulous advocate for your dad-keep up the great work!!! Debbie

[Dick]

June

I’m boiling mad just reading your last post! Hard to beleive a Doctor could have such a horrible “bed side manner” . . . just unforgivable.

Might be good to send a copy of all the replies you have received to Kaiser. Even if you do not get a positive response from them, it will go in his personnel file and I’ll bet it will not be the first they have received.

Dick

[Mary4Mike]

June,

After rereading your post, I wondered if Dr. Shar was upset/offended/whatever that you and your parents ultimately went with Dr. Rodriguez?….not that that should make a bit of difference…just curious.

Also, having had shingles myself, are the sores on his chest kind of crusty and oozy and extremely painful? Did he prescribe Valtrex or Acyclovir or did he prescribe a steroid? Just wondering, because shingles is more than welts.

Keep your chin up, you are being a great daughter!

[choijk]

Thank you for ALL your warm responses. I am still bothered by the doctor’s comments. Not really for me, but for killing my dad’s spirits. It upsets me that now , my dad has doubt in his mind that he might not overcome this. =(

Those shingles… ouch so painful. My dad was prescribed Acyclovir. His red welts are now big blotches of puss filled looking warts. =( It’s all over his chest, underarm, and to the back. The underarm one bothers him the most because when he puts his arm down, its extremely painful for him.

[choijk]

Bev, is your father doing anything about his iron? (ex: Exjade)

I am very encouraged to hear other members doing well with transfusions! Thanks for giving me my hope back!

[jga_socal]

Hi June,
Sorry about your run-in with Shar. Doctors are a curious lot these days. The good thing about Shar is that he reveals his strong bias… so you can move on. My doctor remains quiet about everything but throws in occasional quips that reveal his bias towards stem cell transplant. My counts have been remaining level. So on a recent visit he quipped “you are living a charmed life”… IE: my counts are bound to plummet any minute now. He doesnt like the fact that I’ve decided to wait for a negative trend in my blood counts prior to starting the sct process. Does he really know something or does his sct department desparately need my business?
But it still makes you wonder. Has your Kaiser been experiencing problems with their blood provider or blood administration? Have Shar’s transfusion patients been having a high rate of ‘problems’? This is not info Kaiser will be willing share cuz of …. yep; the accountants and the lawyers.

Oncologists/Hematologists make a pittance on our office visits. Even blood transfusions dont pay much because the blood is donated. The big payoffs are with stem cell transplantations and chemotherapy and it’s administration.

It is interesting to read the Hippocratic Oath that many doctors take prior to practicing medicine. In a hospital environment doctors have to answer to higher authorities who did not have to take such oaths.

[shellbivens]

For the shingles, go to the pharmacy and see if they have any BLUBORO or Domboro. It is a powder and when you mix it with water and apply to the lesions it seems to help. If the pharmacy does not have any, you could ask your doctor for some. It is originally used for foot soaks. But my mother gets shingles occasionally,only on her face and this seems to help along with a topical medication. Just mix a packet with about 1/2 cup h2O and shake. After dissolved, apply with a cotton ball. Put a lid on the container and use again and again. Always with a fresh cotton ball. Just seal and shake. Does the trick for my mom. When she feels/sees an outbreak, she immediately uses the stuff.
Hope this helps.

[shellbivens]

For the shingles, go to the pharmacy and see if they have any BLUBORO or Domboro. It is a powder and when you mix it with water and apply to the lesions it seems to help. If the pharmacy does not have any, you could ask your doctor for some. It is originally used for foot soaks. But my mother gets shingles occasionally,only on her face and this seems to help along with a topical medication. Just mix a packet with about 1/2 cup h2O and shake. After dissolved, apply with a cotton ball. Put a lid on the container and use again and again. Always with a fresh cotton ball. Just seal and shake. Does the trick for my mom. When she feels/sees an outbreak, she immediately uses the stuff.
Hope this helps.

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