Grubb Patients

[mully2014]

My file was sent to Dr. Grubb in the beginning of November and they still have to start reviewing my case. Has anyone else had their file reviewed by him and about how long does it take? I really want to know what suggestions he would make to my cardiologist for my treatment plan. Hoping to hear from them soon and hopefully he himself will have reviewed my case. Please let me know what I should expect!

[rubytuesday]

mully, this was my experience.

My cardiologist made referral in first of March 2011. He filled out/faxed paperwork but was not contacted (so he tells me) by Dr G's office to send my records until near the end of March 2011. At the time of the referral I was told his wait list is about a year out and they do not really 'triage' (probably unless you are were in UTMC hospital or ER). My cardiologist said I had POTS (my symptoms began in Jan. 2009 but I dismissed my occassional near syncope until April 2009 when I had to be hospitalized).

I asked if Dr. G had a cancellation list and was told by my cardiologist and Dr G's office that he does not. So I waited patiently. My cardiologist told me that he'd referred a patient to Dr. G in Feb. who got in to see him in June, so he was hoping I'd be in before my follow-up appointment with my cardiologist in Sept. Summer came and went and I grew to be so debilitated that by Sept's end, when I saw my cardiologist (taking with me my graph of BPs/HRs from MedHelp), he was so concerned that he called Dr. G's office himself. (At first my cardiologist told me he didn't want Dr G's PA to see me but Dr G himself--not diminishing the expertise of his PA, but by Sept's end, he must have asked for either to see me and the reason I say this is because Dr. G's office called me within a couple of days making an appt with Dr G on Oct 3rd 2011. When I saw my cardiologist in follow-up about a week later, he asked me who I saw at UTMC, expecting that it was probably the PA since they got me in so quickly and he just wanted me to at least get a foot in the door. I told him that it was Dr G who saw me.).

I had a long ride to get there for my 1 p.m. appt. and was greeted by a receptionist who told me when we arrived early that Dr G was running late (but gave no estimate on time frame--only that we had time to go lunch). Around 3 p.m. DS asked about what time and we were told he had just seen his 10 a.m. patient at noon so it should not be much longer. I got in to his exam room around 3:30. He was very thorough and very kind, a good listener, patient with my questions. He diagnosed me quickly and provided me with some reassurance that this had been the worst summer for all of his patients due to the high temps (90 and over) and humidity (I didn't know anything about this cause/effect on diagnosis itself as it was all new to me). By this time, I moved from POTS (which I still occasionally have) to OH with the HR typically running slower. He told me that it would be likely I would need a pacer in future. He did not make me feel rushed except that he needed to run a lab test and lab closed at 5:30. He escorted me personally. He Rx'd additional medication and explained his goal. I asked him if I had problems with the faints or BP if I should call him or my cardiologist. He told me he would be happy to help but that he was certain my cardiologist had fewer patients than he. My cardiologist preferred Dr G to get my BP to his target range but if I could not get in communication with Dr G, told me to call him(my cardiologist).

When I left his office on the very long ride home, I was overwhelmed with everything we went over and realized I had a lot more questions but none urgent enough to disrupt his practice. I did ask before leaving about any follow-up and his nurse just looked at me and said they would send me a 'blue card' when it was time for me to make a follow-up appointment. Dr G told me to call his office in 3 weeks for my lab results. When I called, I had to leave message on nurse line. She called me back days later asking which lab I had test done at and when because there was no record in my file. Then I got letter in the mail (form letter, thanking me for chosing him to be part of my health care team, and that if I needed any disability forms completed to have my PCP fill them out??? That was not applicable to me). In the meantime I was still having syncope and vomiting from the new med and other Rx increase. It took them nearly a month to get back with me (nurse for PA) telling me to stop the one med as it was doing more harm than good (I had dropped from 102 to 94 lbs. (not to mention the erosion to my esophagus/throat and larynx). She told me they would let the med get out of my system before initiating another agent. That was first week in Dec and I've not had any word from them re: starting any other med. (I am having fewer faints but now it is much cooler weather and am not dealing with high heat/humidity--but still deal with issues when standing very long--especially wearing heavy winter coat. And I did have syncopal event in prepping Christmas dinner.

My cardiologist should have faxed my records to Dr G at the time they completed and faxed his referral form (IMO). I didn't really blame anyone as good specialists (he is also knowledgable about EDS which I have) are hard to come by but honestly I thought I might wither away and die before being seen. I appreciate very much his willingness to take me as a patient with the complex medical history I have. I have no regrets at all and am hopeful that he can help me get to where I can have fewer incidents. He also Rx'd aquaciser treadmil (or wrote Rx to get me into water program but we don't have any here with temps conducive to my fibro/arthritis--yet not too hot) to condition my legs and build endurance. When I saw my cardiologist in follow-up after Dr Gs visit (about a week or two later, he had had no consult note from him as yet).

When I did call Dr. G about the faints still and the vomiting, his nurse seemed 'curt' and said 'well some people we just can't get their BPs up' (quite the contrary to what Dr G told me--that 'we have lots of things we may have to try and use to get you hypertensive).

I wish you all the best. I was as patient as I felt I could be given all circumstances and believe that it took a serious phone call from my cardiologist nearly 6 months after my initial referral to get me in so soon. In fact, when I answered the phone, I thought it was a dentist's office returning my call and when the lady told me her name--I proceded into the reason for my call to dentist when I froze in time and uttered 'did you say you were calling from Dr Gs at UTMC?. I apologized profusely and we both got a big chuckle but I figured they'd write a big 'L' for looney on my chart.

[mully2014]

Wow! Thank you so much for taking the time to respond to me. Do you know if he has many pediatric patients?

[kclynn]

It is a known fact that it takes approximately a year to see Dr. Grubb. Do some get in sooner? It happens for various reasons, someone who is really close can sometimes pick up a cancellation opening, someone's dysautonomia is in crisis stage, but the vast majority wait. You need to get on his waiting list, call for cancellations, see his PA Beverly (she is fantastic and sometimes this gets you to Dr. Grubb sooner but don't expect that until you have a follow-up), and try to maximise your other available medical care. Then when you do see him don't expect miracles. I think sometimes the expectations are really high. I think most people have a pretty good experience with Dr. Grubb and Beverly Karabin, and also find working long distance is difficult. This is not unique to their office but is pretty much the situation for most of the specialists. It can take a month or two to get the notes from the visit (we don't have ours yet from this past visit a month ago) and that also isn't unique (Mayo took almost 2 months). If you need the notes sooner be sure to call. The patient load is very heavy and also very demanding. Thank God these Drs. have taken on this specialty, there aren't nearly enough, and an occasional note of appreciation would be really welcomed by them.

Dr. Grubb's wife has had a brain tumor and this why he isn't seeing so many patients. Beverly has seen thousands of POTS and dysautonomia patients, has worked by his side for years and is listed on his research papers. She is also a PHD. Her medical advise is sound.

[bkweavers]

Many of the things that happened to RubyTuesday happened when my daughter was a patient of Dr. G's.I agree that he is an excellent doctor who really listens. We didn't mind having to wait for our appt.knowing that we were seeing a knowledgeable doctor. However, we always felt like my daughter saw him, she was given new meds, and we were off. We were left to fend for ourselves! My daughter's physical therapist tried by phone, fax, and letter to get some info from him andthey were never contacted! I understand when a doctor has a huge patient load,not to mention a sick wife but this is my daughter and if I can't get a hold of a doctor with questions & concerns, it just doesn't sit good with me.

My daughter now sees someone only a hour away.He contacted my daughter's physical therapist and pediatrician the same week that we saw him to give them the info they needed. He gave me his email address the first appointment and he usually gets back to me the same day! He has office people and a nurse who are civil to me and are quick to get back to me as well. That means a lot to me!

Brenda

[kclynn]

Brenda, So glad you were able to find someone closer and also responsive! You so right about needing someone who will be there. We also have been able to find a wonderful Cardiac Electrophysiologist closer to home, but even he said my son is complicated and doesn't respond so I thought it would be worthwhile to go see the Drs. in Toledo to consult, since an appt became available and I had sent in paperwork ages ago. Hopefully we won't need to return and can have a better team. I am glad we did. My comments were also from my own experience with another very good Dr., good when you are in the office, not very responsive once you have left.

[mully2014]

I think part of the job is taking the time to answer your questions and reply to you in a timly fashion...if a doctor has a lot of patients and doesn't get back to their patients quickly then in my eyes they are only doing part of their job with all of their patients.

My cardiologist that wanted some input from Grubb is amazing. She puts in so much extra time to take care of every single one of her patients as best as she can! It will be an extremly sad day when I have to go to regular cardiology and stop seeing my pediatric cardiologist but luckily I have a while until that happens!

[MightyMouse]

I know patients who've been able to pick up cancellation spots, but his office does NOT keep a 'will call list' because of the volume of people wanting an appointment. They way the folks got those appointments was by calling the scheduling folks from time to time, and always being pleasant while asking about openings/cancellations.

I have been a patient of Dr. Grubb's since 2001. I have found that when I'm there, I have always had his undivided attention. But being 10 or 11 hours away is far from optimal.

I made it a priority to find a local cardiologist who's willing to learn about my disorders and become a better expert--that way if I'm in a crisis, it's much easier for me to get treatment in person as a well established patient. FYI, it took me a few tries to find the right cardio -- and the few before I found him were horrible. One actually told me I was perfectly healthy and to go home and have a nice life and stop going to the doctor. Right. That worked out well. NOT (sarcasm).