Doctors Appointment - How it Went

Well, I had my follow up appointment with my doctor since being put on the ventilator in February. Overall, she believes I'm doing very well. She had the ventilator report and the report from the overnight pulse ox. She said she is pleased with the results. She said she can see that I've been using the ventilator almost every night, averaging 6-7 hours per night, with an occasional 8-10 hour night here and there. I told her those were weekends and she took the time to look at the report again and agreed it looked like about once a week that I had a long night. She also looked at the waveform chart from my overnight and said that I stayed between 95-100 most of the night, with occasional drops. She said that the one time my oxygen nosedived AND my pulse skyrocketed looked more like an artifact to her. I expressed that I wasn't so sure because I remember and I woke up during that timeframe. She said okay and wrote a note next to it on the report indicating that I was awakened during that episode. But overall, she is pleased with my progress. Fair enough -- so I brought up some of the things we've been discussing here.

My doctor is very good and has an excellent reputation -- I like her and I trust her. However, she is very reserved and a little "quiet" when it comes to certain things. She WILL answer questions and answers them fully, but depending on the question, her answer is carefully thought out. For example, she will not say anything bad or negative about my DME or my former RT. She may "hint" at how she feels, but she's very, very careful about what she says. I think part of this is who she is, but I wonder if she's been burned by expressing her feelings about a situation and having it come back to bite her in the butt later on. But I don't know. Anyway --

DME/RT Situation: The owner of my DME told me that he has contracted with a hospital RT to provide service for his patients PRN and that's all he's going to have. As of earlier this past week, she still needs training on my ventilator and I've not met her. It's been over 5 weeks since he contracted her. My doctor did express concern over this situation and asked me if I wanted to change DMEs. I'm on the fence, but she did say it really wasn't a great situation to not have access to a full time RT. With her expressing concern, it may give me what I need to make that change.

Alarms: I told her the situation with the alarms. When I explained that I had set the low tidal volume as low as it would go (40) and it still would go off several times during the night, she raised an eyebrow at that. She thought for a minute and said that while the alarms would be helpful, because I breathe spontaneously, the alarms weren't a critical point right now. And the fact that the reports are indicating I'm doing well, she decided not to worry about them right now.

Comfort Setting Changes: I expressed my frustration at trying to get permission to make changes to comfort settings on the ventilator. Even in an ideal situation, it was taking a week to ten days to get permission to make any adjustments at all. And with the RT gone -- well, I told her that I was frustrated by it. She gave me permission (and I've written the owner of the DME to tell him, cc'ing my doc on the email) to modify the Inspiratory Time and Rise Time as much as I deem necessary until I find the most comfortable settings. We agreed that I won't change them in large increments AND I should try the new settings while watching TV and relaxing to make sure they are okay. I find this a victory because now I can feel comfortable "playing" with those settings until I feel comfortable. No more back and forth with the RT over it.

Pulse Ox Monitors and Overnights: I told her that I had purchased a monitor. I also told her that I did my own test the night before my DME and the results were almost identical. Basically only one major desat that was about the same and lasted about the same amount of time. I told her that I test a couple times a week just to make sure things are okay and asked if she would consider taking the results from MY monitor if the results became concerning. She asked if it had reporting capabilities and if I could print them out. When I explained it was almost the same report as the DME gave AND the fact that I had compared the two, she was agreeable to it. So, I can be a little more comfortable knowing that if MY monitor starts showing an issue, I can fax/email the report to her for her to consider that we may need to make some changes. That gives me a little more piece of mind.

So, we leave the therapy settings where they are and I see her again in August. I feel the appointment was productive and she's given me a little more leeway in monitoring my condition AND to adjust the comfort settings as I deem appropriate. I also believe that if I express a concern to her, and can back it up with my reports from my monitor, she will allow me to make therapy changes if they are appropriate.

I was very tired last night and not feeling well so I didn't make any changes to the settings. But I plan on changing them for tonight. I'll have to look back through previous threads to see what some of advised as far as those settings. I think I remember, but want to be sure. But any new input would be greatly appreciated.

Congratulations, madalot, on having such a good doctor - a doctor who uses information from you and listens to reason. Congratulations on being capable of communicating with her so clearly thus making the two of you a team, and congratulations on having your therapy progressing well.

O.

Thanks Ozij -- I think initially, my doctor was letting my RT take the lead in figuring out my treatment. But with the RT gone, my doctor seems more willing to deal directly with me. Plus, my doctor will communicate via email, which can be helpful at times.

One of the things I mentioned, when we were discussing my frustrations with how long it sometimes took to get changes made, is that when I was first put on AVAPS, my RT set that ventilator "wide open" with the tidal volume at 550 AND maximum pressure at 30. The first night, I woke up terrified because the machine was trying to kill me, pushing pressure at 28 to keep the volume up. The RT made SMALL downward adjustments, but I was still having problems. When I finally talked to my doctor after a few days of this, she turned the tidal volume down to 400 (the RT said it could not go below 475) and it's been MUCH better ever since.

My relaying this to her kind of showed that there will be times that I need HER, not the RT, to address a problem and need it to be done quickly. She appeared to understand and agree.

Kathy,

It sounds as though you really do have a good doctor and a good relationship, due in no small part to your own active participation in your treatment, I am sure. Do you feel good about how things went and how are you feeling generally? I understand that I cannot really understand, if that makes any sense, but I hope you are doing as well as possible.
Sounds like you will be coming to a decision about your DME in the near future perhaps?

Best,
Jeanette

Madalot... the way that you put about her not normally expressing a lot unless asked.... and yet she's asking about the DME. I'd guess that she's concerned... and would seriously look for a new DME if I was you.

cflame1 wrote:Madalot... the way that you put about her not normally expressing a lot unless asked.... and yet she's asking about the DME. I'd guess that she's concerned... and would seriously look for a new DME if I was you.

She didn't bring up the situation with the DME and RT -- I did. I asked her if she thought it was a problem that my DME did not have a full time RT on staff. That's what prompted that part of the conversation.

Madalot wrote:DME/RT Situation: The owner of my DME told me that he has contracted with a hospital RT to provide service for his patients PRN and that's all he's going to have. As of earlier this past week, she still needs training on my ventilator and I've not met her. It's been over 5 weeks since he contracted her. My doctor did express concern over this situation and asked me if I wanted to change DMEs. I'm on the fence, but she did say it really wasn't a great situation to not have access to a full time RT. With her expressing concern, it may give me what I need to make that change.

Madalot... I've bolded what I was referring to.

cflame1 wrote:

Madalot wrote:DME/RT Situation: The owner of my DME told me that he has contracted with a hospital RT to provide service for his patients PRN and that's all he's going to have. As of earlier this past week, she still needs training on my ventilator and I've not met her. It's been over 5 weeks since he contracted her. My doctor did express concern over this situation and asked me if I wanted to change DMEs. I'm on the fence, but she did say it really wasn't a great situation to not have access to a full time RT. With her expressing concern, it may give me what I need to make that change.

Madalot... I've bolded what I was referring to.

LOL -- I gotcha!! What I meant by my comment was that she was done talking and said I had some things I wanted to discuss with her, one of which being the DME & RT situation. I reminded her that the RT was gone, and explained what I had found out about the status. Then I asked her if I should be concerned about it. That's when she expressed concern, only after I asked her pointedly if I should be.

But this is just semantics and really not worth worrying about too much.

Since your Dr is concerned too, does she have recommendations for any other DMEs? Maybe you could interview them without making any firm commitments just to get an idea of the level of experience these RTs may have and your general feelings about them?

DoriC wrote:Since your Dr is concerned too, does she have recommendations for any other DMEs? Maybe you could interview them without making any firm commitments just to get an idea of the level of experience these RTs may have and your general feelings about them?

I've considered doing this. We only have a handful of DME's here, at least ones that aren't an hour away or more. I probably realistically have 2 or 3 that I could choose from.

I may go this route, but haven't made up my mind what I want to do. My biggest problem with the DME in the past was the RT. She's gone. Initially I was told that they would be hiring a new RT and was committed to sticking with them based on that. Now I'm told that's not the case and they'll simply use an RT from the hospital as needed. This is kind of new "news" and I am still considering my options.

the dme's are just service providers so i dont see any reason not to change to another if you ar enot getting the service you require. After all it is not like he or she is some kind of family member. I have to say kudos to you for doing what you have done to make sure you get the care you need. Folks like you are an inspiration to new people like myself.

pdean44 wrote:the dme's are just service providers so i dont see any reason not to change to another if you ar enot getting the service you require. After all it is not like he or she is some kind of family member.

If I were still living in a big city, I'd totally agree with you. Unfortunately, the area I live in is very "small town." You need to be careful about people and relationships! Just as an example, my daughter took horseback riding lessons and the first place she went, the woman that ran it was just nasty. We found her a new place that she was a lot happier. I was talking to a neighbor one day and mentioned horseback riding. The neighbor asked where she took lessons and I started to mention the first place, but didn't. Good thing, too, because it turned out that nasty woman was my neighbor's sister!!!

Just an example of how you can never be sure who knows who or what you do that might get back to somebody!!

pdean44 wrote:I have to say kudos to you for doing what you have done to make sure you get the care you need. Folks like you are an inspiration to new people like myself.

Oh, I needed a pat on the back today. Thank you!!

Jersey Girl wrote:Thanks so much for keeping us updated. I am so proud to know you, even a little through this forum. You have really taken charge of your therapy. It's not easy to ask all the hard questions, get the answers and then put them all down in a manner that shows you have really digested all the information.

I am sending you a "virtual" hug, and hope that you are able to continue to find all the little comforts you can along the way.

Jersey Girl

What sweet things for you to say. Pretty timely, too, because I've borderline gotten myself into that "I don't want to do this anymore" and "I just don't care" mood again. It happens sometimes that I find my life and it's limitations tiring and just want to stop all this.

So your encouragement came at a very good time. Thank you.

Sounds as if you did a good job of communicating with your doctor. Good for both of you. I agree it sounds as if your doctor is both careful by nature and careful due to experience. The phrasing and caution would tend to indicate that.

I'm pulling for you and praying that things continue to stabilize. Hopefully the RT/DME situation will also stabilize.

Best wishes!