Wednesday, April 14, 2010


Let me tell you about one of my doctor's at my transplant clinic. I will not use her name but her initials Dr. DD. She is one of those people that talks to you like she is better than you. Anyone that knows me understands that this is a major no no!

My first encounter with her was pre-transplant. It was even before I got listed. She was trying to convince me how important it was not to wait too long before going active on the transplant list. you would think this was a good thing but I was still in denial of needing a transplant. I still thought that I could get better. In not the exact words she said...If you don't get listed you will die. Then in the next breath she said but remember this is a serious decision because of 50% of people are alive 5 years after their transplant. Not did she say this one in the visit but 4 times until my husband spoke up and said "we understand the risk and the statistics but you don't need to keep repeating that and if you say it again we are leaving." Keep in mind Brian was trying to get me to go active on the list. The entire visit with her pre-transplant was very negative.

Now fast forward to today. The nurse coordinator, Kathy came in and asked if I was ready to get my last drain tube out. I was happy and couldn't wait. Kathy needed to have the okay from the doctor before we proceeded. So then the attending came in and did my check up. He saw no reason why the drain would not be pulled and would find out about the staples. He left and returned about 2 minutes later with Dr DD. I immediately remembered her from my pre-transplant visit and knew we just did not mesh. She started off by going over my medicines. Saying something about voriconazole and I asked if she was taking about the medication that the pharmacist and I was just talking about valcyte. She quickly let me know that I was confusing voriconazole or v-fend with valganciclovir or valcyte. while doing this she spoke to me in a very condisending tone of voice. I tried to just shake it of. My dad also caught the tone she spoke to me. So I know it wasn't a prednisone overreaction moment.

Of course then I had a few questions. Brian wanted to know what date the limitations started transplant date, my last surgery or when I left the hospital. For example, I should be able to drive in 8 weeks as long as the doctors approve it and I am off all pain killers. We didn't know when that 8 weeks started from. Dr DD answer was "you can drive when we say so!" No kidding that wasn't my question. Then I wanted to know how long I had to sleep at a 30% angle. Her reply "when we tell you that you don't need to." Next question, should I go to my dentist appointment next week to get my temporary crown replaced with the permanent one? Her reply, "Thank you for telling me about your temporary crown since I will be doing your bronch next week and no change your appointment because you are on a super high dose of prednisione." I asked when should I change it to? Her reply, "I don't know, until we tell you it is okay to have oral work done." Thanks for the help Dr DD. I ended up changing the appointment until June 8th. Let's hope my temporary crown will last.

Alright now to the piece that really bothers me. Last week, Dr. Camp the big wig and my surgeon told me my drain tube would becoming out this week along with the staples. Dr DD decided she did not want to do either without talking to Dr. camp tomorrow. He is on a much needed vacation but you would think that she would have brought up my case with him this morning when they did the phone conference with him. I let this pass and figured I didn't want to rock the boat with her especially sine she is the one doing my bronch next week. So to really drive the nail in to the coffin Val, my NP at the clinic called to tell me that I need to increase my prograf again. During the phone conversation I brought up what happened at the clinic. She told me that clinic protocol was to remove any drain tubes that drained less than 30 cc a day for more than 3 days in a row and that herself or Kathy could pull the drain tubes. Then she said it is also protocol to take out staples after 30 day. I have had mine for 28 and she said she would have removed them especially sine Dr. amp and i talked about it last week. So Val is going to make sure my drain tube gets pulled during my bronch appointment and also make sure the staples can be removed.

I have decided I am going to ask for an advance notice of when this Doctor is in the clinic so I can prepare myself from blowing up at her. I love most everyone else I have encountered at my transplant clinic but I could definitely live without her there. Well, I hope you enjoyed me blowing off some steam.


BreathinSteven said...

What a piece of work this DrDD is!!! Clashing with doctors is not good for your mental health and stress levels, which is also not good for your physical health... If I were you, I would make an appointment specifically with the head guy or Dr. Camp (I'm not sure if they're one in the same...) And ask him innocently whether you can not see DrDD at your clinic appointments -- pose the question in a very sincere way, not flippant or bitchy... He will very likely ask you why -- and your door is open...

Write yourself a little, consise note of your interactions with her and what bothered you -- and read them to him if you have to... Don't make it a bitch session or venting session -- list the things that bother you... She speaks down to you - she gives you vague, insufficient answers - you feel she's generally negative in her approach... You are a professional patient with your CF -- you've been a patient, in a medical environment far longer than she's been in medicine (I'm kinda making the leap of faith that she's young...)

Don't ask for advance notice to prepare for her -- honestly tell them that you do not want to be cared for by her...

I hope you're doing well, Steph!!!

Love, Steve

Stephanie said...

God Bless you! I think I would have put that doctor thru the wall! LOL! I have been known to make surgeons stand with their nose in the corner for throwing 3 year old temper tantrums.

You know you can absolutely refuse to have this doctor treat you. There is nothing she can do about it. You can also report her attitude to the "Risk Management" depratment @ the hospital - they may call it something else there, but the people who try to talk folks out of suing the crap out of them. LOL!

Anyway, you have been through enough without having to be stressed out about seeing this doc when you go in. I would ask your regular doc that she not be allowed to treat you from now on. I tis your perrogative.

Good luck! We will keep you in our prayers!

Steph & Christopher

Emma said...

There's a doctor a lot like this at my clinic, we just asked the secretary to schedule us for days with my doc, and it became such a problem that now if you only want my doc you get a sticker on your chart. You definitely dint have to deal with her again! She sounds obnoxious.

Anonymous said...

Hi - You do not know me but I've been following your blog for a while. I also have CF and have been to B&W to start the lung transplant process. The first doctor I saw was this woman you are referring to - I went through all of the evaluation procedure and then she called me AT WORK to tell me the results of all the reasons they couldn't list me right then. I cried all the way home on the train it was awful. I feel really bad she treated you like that - I wish she understood how new all of this is to you and could be more comforting.

Anonymous said...

Hi -

I just found your blog. Congratulations on your new lungs. I received mine 12.5 years and am lucky to still have an FEV1 of 100%.

I have been followed at BWH for 11 plus years and of course know of whom you speak. I have actually had very good interactions with her and think it might be worth another chance. Just my 2 cents.

Good Luck

CFsteph said...

Just a follow up. I have had this doctor for 5 weeks in a row and she is growing on me. She actually pushed for an early bronch/biopsy which discovered my mild rejection.