Where to receive the best care - Stanford or Mayo Clinic?

[TamaraLynn]

My 2 week old Granddaughter was just diagnosed with CF. I've been reading as much as I can about the condition and feel completely devastated for my daughter and grandbaby. I just found out yesterday so I still need some time to digest it all.

Medical conditions are, unfortunately, nothing new to my lil family. I have 3 daughters. My oldest and her 1 year old son, my grandbaby, have Cavernous Angioma's. Many bleeds, a brain surgery and another surgery when she had a bleed in the base of her brain stem while she was pregnant with my Grandson. Unfortunately, my girls Daddy passed last October and apparently he had it also. Genetics can be cruel.

I am Grateful for the early diagnosis ready to learn how I can assure that my grandbaby gets the best care and how to best support my daughter through it all.

My Daughter lives near Sacramento CA and a couple of hours from Stanford in Palo Alto. I live within a couple of miles from Mayo Clinic in Rochester MN. I am hoping to get some feedback on where we can get her excellent care - especially if you've received care at either on of these locations.

To everyone reading this - My heart goes out to you and your family as you wouldn't be here if, like me, a loved one wasn't also being challenged with such a diagnosis. God is good and he loves our babies more than we can as humans.... God bless and hope to hear from you soon.

 

[Aboveallislove]

Dear mom and grandma,
first congrats on your new granddaughter. What a blessing. But I kno...we all know...how devasting this diagnosis is and how you ache for your daughter. One thing that helped me so much in the first year...the first few months were just getting a handle on things...but after that, I started researching the future and it is amazing. There is already one drug approved that makes the cf gene work properly...not absolutely, but really well. Many on it have had a complete change in life. A second drug will likely be approved by ewary next year and there are more drugs in the wings. This sent treating symptoms but fixing the malfunction of the gene. It is very important thus to know her specific mutation or mutations. If you post ill explain what I can.
Pre which center is better....the cff.org webpage lists all accredited cf centers. Only about 100. To be accredited they must follow center protocols. You can see details on the centers there re various comparators like weight etc. imy suggestion is to have her treated at an approved. Enter by home because shell want to have easy access. If its a matter of a move for family support, that's one thing, but if it is merely to get to a different center, when both are accredited I do t think that makes sense and traveling that far for a doctors doesn't make sense. Plus the doctor at one center might be better than another even if overall you think one center makes sense. Are you able to fly out and stay for a few weeks to gel her in the routine? If not, one thing I think is an awesome idea is to arrange for a case of disposable nebulizer cups so that while dealing with a newborn she doesn't have to worry re the constant cleaning and sterilizing...use and toss. Please write more if you have any specific questions. I am so sorry for all the health crisis and lose you have had...sometimes it just feels like the hits just keep coming...I call those my one footprint in the sand days...may God hold you tight. Know of my prayers for you and your family.

 

[Ratatosk]

Agreed, check out the CFF site and see how the clinics ranked. Mayo is a fairly newly accredited clinic. I know of several individuals who went there prior to accreditation because they felt U of MN was too big; however, I have NO idea what the quality of care is. One of my friends who sent her daughter to Mayo now goes to Children's of Minneapolis. I know of more individuals who've gone to U of MN's clinic from all over the country as they previously were known as one of the top clinics in the nation. So it's not unheard of to travel further for care. We have an accredited clinic about 5-10 miles from us, but they were too reactive and not proactive at all, so we drive 250 miles to the city at least twice a year for CF care.

 

[stephen]

TamaraLynn:


Let me also offer congratulations on your new granddaughter.

I know the diagnosis of Cystic Fibrosis in someone young is a real shock. However, there are differing severities of the disease and it’s not always devastating - especially today. Depending on a person’s particular mutations, and other yet unknown factors, there are quite a few of us around who managed to make it into their 50s, 60s, 70s and even 80s.

I’m a prime example. While I always had pulmonary and sinus problems, I did manage to make it to 63, thank G-d, before finding out that the cause was CF.

Also, as Aboveallislove said, there are amazing drugs coming out that provide “fixes” for some CF genetic mutations and restore their function. Again, I’m a prime example. I’m one of the fortunate ones to be benefiting from Kalydeco and it has almost made me feel like I don’t have CF anymore.

As far as selecting a treatment center, you should definitely go to a pro-active accredited CF Center. They are aware of, and have access to, new drugs even before they become FDA approved. Again, I’m a prime example. The doctor at my previous center was able to get me started on Cayston almost three years before it got FDA approval. And just five months ago my current CF doctor prescribed Kalydeco even though I don’t have one of the FDA approved mutations.

Unfortunately, I am not aware of any data that discusses just how pro-active the various CF centers are. You might try Googling the doctors at the centers you’re considering and see if they have been involved in clinical trials or CF research. Living in New York, I can’t give you any recommendations. However others here probably can provide their experiences at the CF centers you’re considering.


Also, you don’t have to stick with one CF center. I’ve switch centers, for convenience, and have on occasion gone back to a previous CF center for a consultation.

 

[adomaille]

TamaraLynn,

I too live in Rochester! I myself was diagnosed at Mayo. Although I am sure Stanford can do a great job, I recommend Mayo over them. Mayo was ranked the TOP hospital in the entire nation. They have been my health care provider for many years and always exceed my expectations.

The U of M is also an amazing CF center. My cousin receives her care their and they are wonderful with children.

 

[Michael Klein]

adomaille,

First, sorry about the diagnosis I think the best option for your granddaughter and her family would be to go to the closest CF center to them. Here's why:
1.) If a CF center is accredited - it's accredited; there is no "bad" or "better" CF Centers
2.) Proximity is proportional to fastest care
3.) Pathogen exposure - You don't want to expose someone with CF, especially when sick, to a crowded uncontrolled environment (i.e. the airport). If their immune system is already hampered, their going to be more susceptible to opportunistic infections
5.) Cost - I'm not sure about the financial situation your family is in, and I'm not sure what kind of insurance they have - but CF (and I hope this isn't the case for your granddaughter) can get very expensive - having to pay for a plane ticket just to see a group of CF accredited doctors approximately every 3 months is just not economical
6.) Doctors who specialize in CF care are essentially all part of multinational network - they all communicate.
7.) I hope this doesn't sound cruel, but Mayo Clinic will tell your family to go somewhere closer. CF is a known recessive genetic disorder - If research needs to be done on a weird, wild mutated bacterial infection (God forbid your granddaughter will ever go through that) I promise you, your granddaughter's local CF team will get in contact with institutions that have more research credentials; there is no such thing as institutional "competition" or "glory" when dealing with CF.

I hope this helps - or at least provides some insight. I do want to say that your granddaughter is so lucky to have such an involved, caring grandmother like yourself in the family.

Take Care!

 

[stephen]

TamaraLynn,

Let me start by assuring you that a CF diagnosis today does not have to mean what it did years ago. There are miraculous new drugs and others are in the pipeline.

I agree with Michael that location is very important in selecting a CF Center. It’s nice to be able to easily get there whenever there is a problem, and not have to rely on another local doctor that is working with the CF center’s staff.

However, all accredited CF centers are NOT the same! Just look through these Forums. Some people have had really bad experiences..

In my opinion, a good CF center should:

• Participate in studies and have access to pre FDA approved drugs.
• Be pro-active in trying new treatments and prescribing off label drugs.
• Spend all the time with you that you feel is necessary.
• Timely respond to your calls and messages.
• Have appointment times open for emergencies.
• Accept when you seek outside opinions.

Unfortunately, these qualities are not among those used to rank CF Centers.

Living in the New York area I’m fortunate to have multiple CF Centers within less than an hour and a half drive from my home. I’ve been extremely pleased with three of them I’ve used. Changes were made only for convenience. Currently, the one I am using is just a 20 minute drive away. Occasionally, I still visit one a bit further away, just to get another opinion.

If possible, I suggest you visit more than one CF Center before making a decision. If you’re satisfied with the closest one, that’s great. Occasionally, you too can go to another center for a consultation, and then decide if you want to make a change. Don’t feel locked in.

There is a good chance that with today’s medical advances, you new granddaughter can have a happy and fairly normal life.

 

[Ratatosk]

It's my understanding that a few years ago, some of the staff from U of MN moved to Stanford's program. I know of people in CA who've had good experiences with that clinic. Input from some of my friends in MN indicate that Mayo is a relatively new program -- so some growing pains... There were also some people who travelled long distances to attend the U of MN program. Unfortunately, not all accredited clinics are equal. Fortunately the CFF has rankings on their site and with this site you can visit with others and gain insight on their experiences with clinics. We have an accredited center about 10 miles away; however, DS spent 6 weeks in the NICU in the city with one as well. Difference was night and day --- reactive vs. proactive care. So we travel by car 3.5 hours a few times a year for cf care. We still have labs and basic pediatric care done thru the local care center, but response time and care in the city is much much better.

If you can find a clinic closer that has a proactive program, staff that works with you, responds in a timely manner... Great!

 

[ladybird]

Hi TamaraLynn

Congratulations on your granddaughter! I agree with the other posters that your granddaughter needs to go somewhere close to where she lives. I used to live in Sacramento and went to UC Davis and was very happy with the care there. I have lived all over CA and have gone to UC Davis, UCSF, Stanford, and Kaiser.

UCSF has been the best as 1. They have all the patients wear masks to prevent cross-infection. 2. They are the only center that has aggressively treated my MAC infection. 3. They were the only center to suggest the use of the Minnesota protocol. 4. Since I have been going to them, and using Minnesota protocol, my lung function has improved 7%. (Also I am 38 and stopped working 1 year ago, which also helps.)

Stanford is the worst. Their team is run by Dr. Mohabir whose first concern when I met him was that I give him good reviews. He has 2 very grumpy and unprofessional nurse practitioners, Ms. Rad and Ms.Washowich do all the work, I.e the work of doctors and they get very upset if you ask the actual doctor any questions. I had an emergency, and then clinic manager walked me over to wait in the ER waiting room, rather than having a clinic doc see me, even though the clinic was open and doctors were present. I believe these practices stem from a lack of sufficient funding by Stanford I.e. no gaxillionaire has come forward to find their CF center.
While the hospital itself is very glam - free massages etc. - the CF care team is problematic.

Kaiser is well, Kaiser - health insurance for the healthy. They have no idea about what they are doing and almost killed me.

UC Davis is small, friendly and run by the very talented Dr. Morrissey. I recommend that your granddaughter go there as the stress of going into San Francisco several times a year from Sacramento is not worth it. It is very close to your granddaughter's family and that is important, especially if she is hospitalized.

All CF care centers are not equal, unfortunately.

God bless,

Ladybird

 

[Katie615]

I have not been to any other CF clinic in California other than UCSF. For 19 years I went to UMASS in Worcester, MA, but 10 years ago I moved to California and had a choice between Stanford and UCSF. I have not dealt with pediatrics there, only adult and they are great. They seem to know the newest and best things to do for CF. I do know one person in the pediatric department, the dietician used to do adult and pediatrics, but switched to only pediatrics and she is very nice, and has really good advice for CFers.

ladybird is correct about the stress of going into San Francisco often. I live far so my husband drives me an hour to the bart at 6 in the morning, then I take the bart and the muni to the hospital. Also, if there is an emergency, you want something close. When I have an emergency it takes us 1 1/2 to 2 hours to get the the hospital (I live south east of San francisco).

 

[CFSanDiego]

For what its worth, I have a 7 year old and we live in San Diego. I was not happy with the care here so we have been going via plane every 3 months to Stanford pediatric CF clinic and it is wonderful. My daughter's doctor is Dr. Milla who did indeed come from U of M. He is very well respected. We are happy with him and all of the nurses. They are so caring efficient. previous poster was speaking of the adult clinic at Stanford, but in all honesty I have heard wonderful things about them as well so maybe staffing has changed there? Anyway, Stanford children's is great. Everyone gowns and masks up and they think outside of the box. Hope this helps.

 

[ladybird]

I went to Stanford adult clinic in 2013. The awful Dr. Mohabir is still the director and the two dreadful nurse practitioners are both still there too, so I doubt anything has changed. I have a friend who also hated the weird and unhelpful attitude at Stanford and who also left in disgust. Don't be fooled by the cute burgundy uniforms, the Stanford clinic is the kind of place where serious conditions get overlooked because you are primarily treated by nurses who are illegally doing the work of a physician. The doctor just signs off after they have done the examination and interviewed the patient. In addition, being shunted off to the ER when you should be seen in clinic is a recipe for disaster. The Stanford name blinds the inexperienced CF family who doesn't know what is normal practices to the sick and harmful way that medicine is practiced in that clinic.