Hurler syndrome treatment in 5 Oncology clinics in United States

Easily the most efficient medical facility I have ever stepped foot in. Everyone is friendly and professional…the campus is a very nice place to spend time if you have to spend the whole day for a bunch of testing. Food service has recently been revamped and has dramatically improved. When you consider the volume of people seeking specialized medical care IN ADDITION TO a very active ER, I find it is nearly miraculous that I have never waited more than 15 minutes past my scheduled appointment time to see my Dr, and that is coming twice a year for the last 7 years. Not once…

Amazing experience at Mayo Clinic Jacksonville!! After three trips to our local ER all resulting in an undiagnosable abdominal pain and seeing literally one dozen doctors, we were blessed with a referral to Mayo Clinic and my husband was healed!!!!! No more prescriptions! No more weight loss! No more issue! They found the problem on the first visit, had it removed three weeks later and no more pain praise God!!!!! Thank you to the entire staff from the gentleman at the entrance with his cheerful greetings to the kitchen staff who keep even the most grumpiest of patients happy and fed we appreciate all of you there at Mayo!! Thank you from my family to yours!

The ER/ED staff is dismissive, taking forever to treat patients. I have been sitting in this damn hallway for 5 hours. Yes they have ran tests, no medication to treat any of my symptoms. Trying to discharge after doing nothing… Had to CRY to the doctor about how I felt my care wasn’t up to standard and then she eventually gives me meds. Mind you. After 5 hours. Thought Mayo was one of the best hospitals in the south. Will never be back.

Dealt with this hospital for several years. No matter what day or what doctor I've always been left with the same experience; cocky doctors playing God with the absolute worst bedside manner. Never again.

My husband was a heart transplant patient here. One time they failed to give an accurate report for him to adjust his warfarin accordingly. Subsequently he suffered a stroke and had to have intracerebral hemorrhage surgery. My husband overlooked a lot of things and this hospital had the nerve to kick him off the transplant list. They called an old number and then said that since they couldn't get in touch with him he was non-complaint. I gathered so much proof to show that they were the ones who made an error. I got all the phone records and proof that we updated his information but it was evident that they just wanted to get rid of him. I wanted to sue so bad but I left them all to God. You should have been in that break up meeting. By the grace of God he got his transplant at an excellent hospital in CA.

Lynn at the gift shop was extremely helpful and made ordering flowers a seamless process. She was so kind and patient too. Thank you Lynn!

We were at Vanderbilt before transferring to Mayo. This has been an amazing experience! It’s like it’s a requirement is to be super nice; Vanderbilt, not so much. I would recommend anyone to come here, and I’m so glad we chose to switch. The doctors, nurses, and even the staff (cafeteria, welcome center, etc) were by far nicer than Vanderbilt. They are so knowledgeable, thorough, and patient. Very impressed!!!

The Mayo Clinic is such a special place! It’s a medical facility that could also be a museum of art museum, history, and architecture. People travel from all over the world to be treated here, but what makes it truly special are the compassionate, skilled, and dedicated employees. I stood outside the Mayo Building and watched bus after bus pull up to the staff entrance - and watched countless everyday heroes get off those buses and go to work performing “miracles” at a place that provides hope to people who need it most.!!

I had 7 uterine fibroids removed by Dr Khan. Well done. No complications. After six weeks I was back in gym doing great. Dr khan is the best. Great doctor. Nurse Logan day shift and Susan night took good care of me.!!

My brother was in this hospital because he had appendicitis and had to get surgery and He said the nurse was nice! I think this place is really nice because it's clean and Its nice looking, I know that because I was there to visit him in the hospital. I also want to thank you for saving my Brother before more consequences happened to him and that he could've died.. but thank God this hospital was there! Once again, thank you for saving him🙏🤍 Also I definitely Recommend this place if you want nice doctors and want to feel less anxious and comfortable here.👍

This hospital isn't what it used to be! It seems to be loosing patient focus and fast. We've been a CHLA family for 11 years and I think it's time to switch. My autistic son was SCHEDULED for Dental Surgery. Originally it was supposed to be at 1pm and us be here at 11am. When we got the call from the nurse last night that we needed to be here at 530 AM we were like no one told us! But we got here right on time. We'll let me tell you that they took him upstairs to Surgery PreOp it took over 4 hours to get him into the the surgery room, because he needed to be admitted after surgery and no beds were available. This hospital needs to have better planning for these types of things OBVIOUSLY there will be emergencies that come in over night THAT SHOULD'VE ALREADY BEEN ACCOUNTED FOR!!! Maybe you need more staff and more beds!!! Because to have a child basically starving because you couldn't plan Accordingly is just plainly ridiculous! Then when I spoke to the Charge Nurse in the Surgery Dept she tells me that if my autistic son has an outburst that the anesthesiologist and nurse are there to help give him something to calm down. So basically if my son has an autistic outburst they will just drug him up. I'm like realistically drugging my son just to calm him down because your hospital didn't plan accordingly is uncalled for and unnecessary! Again I am seriously contemplating switching hospitals even though my son is on the Heart Transplant List!!! -A Frustrated Autistic Heart Mom

Ok so I had open heart surgery 20 years ago. I was well cared for and was in icu for three days and then went to a step down room where I was later discharged home after only three days at the hospital. My team was so amazing and so supportive and loving. And a picture of me twenty years later.

Got first-rate care, had a great experience and a positive outcome! Kudos to the Nurses, Doctors/Surgeons/Anasthesioligists, Physical Therapists, Dieticians/ Food Service, Fellows, Interns and Students.Special shout-out to my postoperative caregiver- Karina Valentine. She kept me going through the most challenging part of my surgical journey- enduring procedures to facilitate the OUT in outpatient. Lest we forget the unsung heroes that keep the hospital so hygienically safe and superior- I must now sing my praises to the custodial technicians: 🎶We could eat off of the floors But we don’t have to They give plates and forks Don’t spill dessert (I got strawberry shortcake 🍰)

Duke has reached a new low in Health Care. I'd give them stars in the minus categories if I could. My son had eye surgery and every time we went for an appointment we waited over 2 hours to be seen. I can tell you I read 150 pages of a book on one visit. We actually saw people leave without being seen because they had waited so long. My son objected to the long wait one day and was told by the surgeon that he was ruining her day. Because of the wait he asked to talk to the manager or an administrator. While waiting the police came made him leave because they said he raised his voice. He was not allowed to talk to the administrator and was escorted out. This is not the first problem we have had with Duke. My son was in the emergency room waiting for the specialist on call when the Emergency Doctor came in and told him that the specialist on call was already home and refused to come in to see him. We were told he should go to the specialist's off the next day. We did that and he was seen for less than 10 minutes and told to go back to another doctor. Seems the specialist could have cut through the chase and just told us that to begin with. My impression is that almost every one in the hospital system is very impressed with themselves and seems to think it below them to interface and deal with patient who have some real problems. I can, in no way, recommend any Duke Service. I could continue with examples but it would sound repetitive. I practiced Nursing for 45 years and never came up against any care that is this poor in quality. Giving them -5.

There is good and bad. I recently gave birth at Duke University Hospital and I want to say that my experience with Doctor Clifford, and nurses Lexi, Brenna, Tabitha, Josephine among others was phenomenal. I was blown away by the care and compassion I received so I will say it was a four star experience. However, I have one major complaint about the experience and feel it's important enough to try to voice it. The postnatal recovery rooms are terrible. They are the size of walk in closets and if you have a support person such as your husband staying with you, they have to sleep on what is essentially an airplane chair. My husband could not do it, and it made the end of my experience at Duke hard because I needed him there with me. I felt like me and my baby were locked in a cell and I was going crazy by the time I was discharged. Thank god I was discharged early. There were many people coming in and out of my closet those last few days and nights, and it was definitely too many people. After receiving an emergency C section, I felt I was improperly educated on the repercussions. I had no idea I would have trouble producing milk after my blood loss in surgery and I was not informed about any of the medication I was prescribed. Again, it would have helped if my husband could have been there because maybe I actually was given information but was too out of it for it to sink in.

Have been passed around from test to test for 3 months trying to get clearance for surgery without any treatment for my condition. Seems like all they want to do is test and not treat problems. Impossible to contact doctors offices by phone. Ordered tests without telling me. Asked for referral to hand surgeon and they sent me to shoulder specialist. Asked for referral to ear doctor and they sent me to throat doctor. Did multiple tests on heart and all good but they are ordering more tests. Think they are more interested in generating revenue than healthcare

My first bad experience, I have been admitted here several times and my stay had always been good, until today that I already have 6 days admitted with my son here we had a double room where the first nights I was touched by very decent and respectful people, the last two nights I have been touched by a couple with their son who leave the light on until late at night, they spend the day in phone calls and with a very inadequate tone of voice, the husband stays to sleep and has an awful snoring because those that are very difficult For me and my baby to have rest time! I talked to the manager who didn't do anything, I don't talk to people or take the delicacy to even see if she could move us to another room I don't care if it was with another person maybe they weren't as indecent as these which the sick people have told her that please if they can keep their composure and they don't even change! The truth is that I would have liked to have another person to help me and be more condescending with the situation, because I have seen empty rooms since last night even double, but according to the person I spoke they were not available! I'm still here and I can't take a break! As a hospital you need to put some rules like do not let man stay at least in double bedrooms, do not permit loudly noise in the room and for the residents on the rooms to keep respect to others and peaceful space appropriate for recovering!

My sister had surgery at Columbia Presbyterian Hospital. Her surgeon called me at 11:14 to report that she was out of surgery, and that the recovery room staff would be in touch when we could see her. I did not hear from the recovery room, so I called them. The desk clerk rudely told me that the nurse would call. It is now 2:50 - almost 4 hours since my sister left the OR, and I still have not heard a thing from the recovery room nurse. It is inexcusable to treat family members in this way. In addition - they have a one way texting app for communicating with family members - useless, apparently, because they don't use it. I understand nurses can be extremely busy, but it only takes seconds to communicate to worried, waiting loved ones.

Dr. Bartlett and his staff were timely, professional, and courteous. The procedure was performed flawlessly and he kept the mood positive and humorous.

Want to give a shout out to the nurses and staff on the 17th floor. I was briefly there this past Thursday to pick up my uncle Juan who received treatment. It felt very welcoming and calm on the floor. I am assuming that they were nurses (I apologize if they’re not) as they were sitting in the central location and also running around taking care of patients. When we asked for a wheelchairs, they processed the request with a smile. One of the folks even asked how my day was going and asked about the Buffalo Bills. I know this may sound small but it’s the little things that can make a difference. I had some anxiety coming to visit and was exhausted from my 8 hour drive to get here, but all that went away when I entered the 17th floor of this hospital.

The nurses, admin team, patient care team I have no complaints about. I dread thinking how the doctors here have handled my Dads care since the very beginning of his AML diagnosis in April. To begin when he was initially admitted, he received his chemo and was discharged with oral meds that he was told to keep taking upon going home. Doing some basic internet research we discovered he was taking the meds for 20 days longer than he was supposed to. We had a teledoc visit with his doctor, she described it as a “misscommunication” and that he indeed took it weeks longer than he was supposed to. Also during this period, he was doing outpatient in New Jersey and never had any follow up from his doctor until weeks after discharge his initial diagnosis. I do not think this is standard. He was discharged with no Oncology follow ups scheduled or anything. When we finally did talk to his Doctor she said to move to a clinical trial that had not been successful on anyone, nor was it even available. She gave him more chemo that did not make any progress towards treating his disease. To say she was hands off is an understatement. I personally messaged about clinical trials that had success with patients with similar diagnosis and subtypes. We were told to reach out to hospitals that had them while she continuously kept stringing my father along without any real plan besides what was already not working. I asked about transplants she said it could kill him, now they have no viable plan as the chemo and lung issues (related) are too much to overcome. I continue to seek treatments for him. In short, I feel like we experienced a 1980s treatment plan, with no creativity or critical thinking applied to treating my Dad. He is a number to (most) of the doctors. They also will scheduled him for blood transfusions once a week on outpatient when he got them daily in the hospital. Extremely frustrating. Their bedside manner was also… abysmal. Offered little hope this whole time and didnt give confidence to other centers that would have been more capable in treating him. I would not recommend MSKCC and wished he went somewhere like Mayo or MD Anderson. Maybe they can be helpful for more straightforward treatment plans, but my Dad has a very rare subtype that made it complicated. Several doctors come off as thinking they are the end all be all of what is known about my father’s disease. Newsflash - we’re all capable of reading studies that show efficacy of treatments but your heads are too far up your own you know wheres to listen to family. They also give off a vibe of thinking they are the Almighty as well and it breaks my heart to see how they spoke to him and how it affects his mood, graces, and personal outlook.

Couldn't visit my grandpa in the emergency room. I drove an hour to get here and then they tell me there is a 2 visitor limit. There is little to no reception in the building so I couldn't even get in contact with who was in there. I called into the room and when I asked about someone leaving she pretended I didn't even talk to her and went mhm mhm and hung up. I love hospitals that won't let a grandson see his grandfather in the ER

I am deeply thankful for the exceptional care and attention I received during my recent visit to the emergency department at Brigham and Women's Hospital. The doctors and nurses demonstrated genuine concern and provided excellent care for my difficulty swallowing, gastric issues, and rapid weight loss. Their professionalism and compassion made a significant difference during a challenging time. I want to express my sincere gratitude to the entire medical team for their dedication and outstanding support. Thank you for helping me through this health concern with such skill and kindness.

During my dad's ICU stay at Brigham and Women's Hospital, the nurses provided outstanding care. They kept us informed and made us feel safe throughout a traumatic time for our family. The level of expertise, compassion, and seamless coordination between day and night shifts was remarkable. My family and I will be forever grateful for Nurse Bryan, Katie, Kayla, and Lauren from Unit 3B.

My experience with the staff was a very special and good one of course there were a couple of not so greats but as a whole I totally appreciated the experience and staff!

My wife and I welcomed our first child with John Hopskins and we were treated exceptionally. Our stay lasted 6 days. Nearly every member of the staff seemed to truly believe in the work they were doing and it instilled confidence in my wife and I. The student nurses were very helpful and what they may have lacked in experience they made up for in drive and enthusiasm! Two of the nurses, who helped my wife in labour, even visited us the next day to congratulate us and check up on the status of our child. It did get busy for the nurses the last few days and we would love to have seen more lactation specialists on staff available to help us but after this incredible experience I will certainly encourage my wife and other parents to include John Hospkins in future family planning.

We had a very nice experience here. Dr Kuwera and staff took perfect care of our toddler. He was competent, thorough and friendly-explaining everything as he went. It’s a large hospital, but with many helpful staff stations throughout, it’s easy enough to find your way around. Must register before entering, which ensures safety. Very thankful for wonderful healthcare.

I had a cardiac ablation done by Dr Blatt and the experience was excellent. From the moment we walked into the hospital and the information gentleman took us to the surgery unit, the intake gentleman, without exception every person we came in contact with was friendly and helpful. My nurses were all exceptionally great. The hospital's sophistication, cleanliness and features were top notch.

On 11/7/2023 During my 5 hour stay the dr and nurses gave me a horrible experience. My monitor was going off for a good while because I had a high heart rate and no one came to check until after 5-10min once the beeping got louder. After couple hours passed and I really needed to urinate, I wait to see if anyone would check on me because I know how busy the hospital gets and after that waiting for a long time and trying to wave down nurses who would just look at me and walk away or say we’ll be there when we can. Yet I seen them just hanging out talking in the hallway of the hospital from time to time. My curtains weren’t closed all the way hence why I could see what they were doing. I ended up urinating all over myself because I couldn’t hold it anymore and I wasn’t able to disconnect myself from my Iv and the other monitor with my blood pressure heart rate and the sticky stuff attached to my body that looked almost like an ekg machine to monitor me. I had to sit in my own urine for about an hour or so till someone came to check on me, I have never felt so neglected in my life. They offered me some wipes to wipe myself and some of the hospital underwear(not real underwear) they had also left a syringe w/o needle on the bed I was laying on. Then upon discharge they gave me my paper work went over everything briefly and disconnected me from the Iv but not the monitor and I was still connected so I had to disconnect myself and take it off. The dr stopped for literally a few seconds saying your labs are good and left. This was my worst experience ever!!

Front desk at the ER the lady where the "red star is" very disrespectful. The RN Kristy I had her today room 29 at the ER nicest person ever, she was great, attentive, respectful, explained every step, overall I felt cared off even though it was just a stomach pain. Thank you Kristy. 😊

You will roll the dice with anesthesiologists at this facility. I was "assigned" Dr. Traylor. A freakishly large, imposing and intimidating man with zero resemblance of care or compassion. I'm sure he chose this field because no one would EVER seek his services. His patients haven't a choice. He suggested a female doctor. Best suggestion he's ever made. In walks Dr. Sarah Cocoma complete with a raging eye infection. This woman SNUCK behind my bed, DISTRACTED me and FORCEFULLY shot VERSED in my IV. It burns given gently. To render me unconscious, without asking, warning or care. Filthy conditions in every area including the elevators. Stay away from the trauma this place leaves behind. You've been dutifully warned.

The worst communication. Terrible gaslighting. The INEXCUSABLE FILTH in this facility. It was everywhere. The waiting room, the bathrooms, the hall was littered with garbage type red biohazard bags. Even INSIDE my Operating Room...garbage on the floor. When I objected to what I was seeing, they promptly canceled my surgery. I couldn't get out of that place fast enough...but not before one last gross show of filth, the floor of the elevator was littered with 2x2 gauze pads...soaked in something orange. I quickly pointed it out to my husband so he can see for himself what I was trying to describe. He quickly understood as an employee's foot was standing over some ofthem. My biggest fears were handled BEAUTIFULLY by this pre-surg staff, they are willing, if able, to accommodate women patients with women doctors/ residents...they allow small gestures of modesty and that is commendable. And just so you know...all those personal questions they ask you? And all the personal questions you ask them? EVERYONE CAN HEAR YOU...as there only curtains for privacy. HIPAA laws must be out back on a smoke break with the 3 janitors this place employs. 2 thumbs down and shame on you.

Had a good experience. Brought my father in law into Rush to be evaluated from stroke he had 3 weeks ago. They had him in a bed in less than 30 min. He was admitted and put into their stroke rehab program in less than a week.