Baystate MA CF Center?

[shinkdew]

Has anyone here been/go to the Baystate CF Center in Springfield, MA? I just moved back to CT and my health insurance does not cover CT, so my options are Baystate, Worcester or Boston. I currently go to MGH in Boston and am less than thrilled with their response time, not to mention my doctor and RNP recently left the CF Center and it's 2 hours from my house. I've been to Worcester and didn't really like it. So, if anyone hear has been to Baystate, I'd appreciate any info.

Thanks.

 

[Emily65Roses]

Why won't your insurance cover CT? That doesn't seem to make sense to me.

 

[shinkdew]

The company I work for is based out of Boston and we don't have any offices in CT. I telecommute from my house in CT. It is pretty odd, because CT is the only state in New England that isn't included in the network. I've asked HR if they could include CT in the network and they told me no. If I went to the CF Center in Hartford if would be considered out of network and I'd have to pay 20% of whatever the costs would be. I'm really stuck because I want to get a job in CT, so I can see a doctor in Hartford, but I don't think I'll be able to find a job that has anywhere near the amount of flexibility my current job gives me.

 

[Emily65Roses]

Wow. That's really weird. I was going to say, because I live in CT and go to Yale and I like it just fine there. I don't understand why they won't include CT, that makes no sense. But I don't know anything about the clinics in Mass, sorry. Heh.

 

[cdale613]

Hi Jim,

I don't know anything about Baystate Med. Center, but I do go to the adult clinic at Boston Children's... I've been there over a year now, and have been very happy. They have made a huge commitment to minimizing cross-contamination risks, and have a great staff. I don't know if you have any specific questions, but I'd be happy to answer any that you might have.

Chris

25 w/cf

 

[anonymous]

Jim,

I have gone to Children's in Boston since I was diagnosed at 2 and am now 22. I am I guess in the adult program, my doctor is an adult doctor, and she is really great I like her a lot. The program there is good, and from what I read on boards and elsewhere it is one of the best. I have had a lot of CF issues in my life...surgery at childrens, b. cepacia, (which i dont necessarily fault them for) and numerous hospitalizations. I had the chief of pulmonary, Dr. Wohl, until she retired and I stand by the fact that she is the best CF doctor in the world. (!haha seriously though). My other doctors have been great (I've had 4 my whole life), and the other people there are too.

It is definitely a program that is on top of things and modern....very professional, etc. I would recommend them; plus the fact that its a children's hospital basically makes everyone SO nice.

Caitlin

- let me know if you have anymore questions. I am a wealth of information when it comes to that hospital haa

 

[cdale613]

Hi Caitlin... Do you have Dr. Donovan? There is another woman I had when I was in for a clean-out recently... can't remember her name... Anyway, I really like Dr. Donovan.

Chris

 

[anonymous]

Hi Jim,
We go to the children's clinic at MGH. I was just curious who your doctor was who left? We have had great response with Bennett's care but again, he is in the children's clinic. Thanks and good luck to you. Where I work they had a similar issue with healthcare providers until recently. Paula

 

[shinkdew]

I used to see Dr. Ruddy, I don't think she left MGH, but she no longer see's patients, she only does research...at least that's what they told me. I'm kind of in limbo in that I really don't have a doctor until January when a new one starts. The thing that bothers me most about it is I'm losing lung function at a pretty good pace and the nurse practitioner referred me to the transplant program at the end of August. I haven't heard from anyone at the transplant program and I've called them 3-4 times and no one calls me back.

 

[anonymous]

HI Jim,
I am sorry I don't have any info on the Baystate clinic for you. However, I am also a patient at MGH who saw Dr Ruddy and am incredibly frustrated with the program at the moment. I, too, am losing lung function and Karen mentioned I should start to think about transplant before she left, but of course things are in limbo now. I am hopeful that once the new physician starts in January things will improve but am concerned about the time between now and January. Supposedly, there are going to be 2 adult cf physicians as well as a nurse practitioner and a RN. I feel a bit skeptical, because I have been hearing this for over a year now, but I think if they do get these people in place it is going to be a good program. I would be very interested in chatting with you about this, I don't know anyone else at MGH and have been very frustrated with the way things have been. Here's my email if you want to be in touch...knunnari@comcast.net. Just put cf in the subject line. I am a former Children's patient and would be glad to give my opinions on that as well. Thanks!

Kim
40 w/ cf

 

[shinkdew]

Hi Kiim,
That is exactly what happened to me. I saw Karen her last week at MGH because I was in for a clean out and she gave me the transplant people's # and told me to give them a call since they never got back to me. I almost want to leave and go somewhere else because I really liked Dr. Ruddy and Karen. Karen was awesome, she worked insane hours and I don't blame her for leaving. She seemed to be running the whole program by herself. Like, I said my biggest concern is my PFTs were at 37 at the end of August and two weeks later I got sick and they dropped to 25. They are better now, but in the last three years my PFTs are down to the low 30s from the high 70s. I may shoot you an email later today/tonight.

 

[anonymous]

Hi Jim,
I feel the same way! I have called other clinics to get information on how they run things but have held off in part because I want to see how the program shapes up once it is in place. I think it was incredibly negligent of MGH to let this happen to their program. I thought Karen was great and don't blame her a bit for leaving, she was singlehandedly running the program, doing the job of a NP as well as an MD! I'm very sad she left. I saw her the day before she left and she said she thinks the program will be good once it is in place, sometimes things have to hit 'rock bottom' (her words) before they get better. I would certainly say we are at rock bottom now! Sorry you are having trouble getting response from the tx team. As I'm sure you know, Karen was the transplant NP as well.....Have you tried getting in touch with Dr Dorkin to see if he can advocate for you? Hope to talk to you later.

Kim
40 w/cf

 

[anonymous]

Kim and Jim,

I, like i said, go to Children's hospital and was just recently referred to the Transplant program over at the Brigham...if you are considering transplant, you might try to go there. Yes Jim Dr. Donovan is my doctor...i really like her, she is smart and doesnt just throw medicines at you without thinking...she really thinks about your individual status. My pft's when I was sick dropped down to 25 and the low 30's. However I am now back up to 48 FEV1 which is good for me and am going to slow down the transplant evaluation process.

Dr. Donovan is at Children's part time and the rest of the time is over at the Brigham. She used to be part of the transplant team over there up until a year or so ago, so I think for an adult doctor this is the best you can get...someone who sees a lot of different situations. She is also good since I have cepacia....which isn't very "typical."

I am very picky and of course have had some issues over the 20 years at childrens, but overall they are great. I know a few other people with CF in the area and they all go to Children's or Tufts, I dont know much about the MGH program.

feel free to email me if you have questions

Caitlin
catalinaohara@aol.com