So What Is Expected With A Dr. Grubb Appointment???

[CharmedLinz]

Not sure if it's even possible for me to go, but my local cardiologist really wants me to see Dr. Grubb and I already have a referral from my normal Dysauto Doc, Watkins in Alabama.

Obviously it would be a ways out, but that's a very very long trip for us so would take some monumental planning.

So what happens usually with his appointments???

Especially for someone that already has a POTS/Dysauto/SFN diagnosis???

Both Docs referring me think that Grubb will have more ideas about auto-immune, Mast Cell, Metabolic, birth defects, Endocrine aspects of what is going on with me.

Does he order a lot of testing??? Or is mostly just a face to face discussion???

I know this is asking a lot, but any info would be helpful.

Thanks as always!!!

[Darlene]

I was dx with POTS in 2005 by a cardiologist at the FCHC. He referred me to Grubb. He is very compassionate, but I m not sure what the rave is about him. I don't feel like he is helping me. My next appointment I going to ask him to refer me the Cleveland Clinic. I would like to go to Mayo or Vanderbilt, but to far. I'm not sure what Dr. Grubb is going to do that Dr watkins hasnt done already. And no, he doesnt order a lot of testing. Grubb is not equipped an autonomic lab.

[Monstrosity]

Never saw Grubb. If your going to the Cleveland Clinic I currently see Dr. Jaeger and Polston. I've heard really good things about Shields and Fouad.

http://my.clevelandclinic.org/staff_directory/specialty_search.aspx

[rubytuesday]

I did see Dr. G. My cardiologist made referral first of March 2011. His wait list was year long. Both cardiologist and PCP (IM) told me I had POTS. By the time I saw my cardiologist in follow-up mid-Sept 2011, (still not getting any call for appointment confirmation), I was so debilitated from the course of summer (very hot with record breaking highs/high humidity, more syncope while cardiologist had tried many single agents that had not worked, in March he'd stopped the Rx I had been taking so nothing confused issues when I was seen by Dr G). that my cardiologist (who said he knew Dr. G, picked up the phone and called him personally. A few days later I got a call to come in first week in Oct. We drove a lot of hours to get there and were forewarned that we could have a 2 to 4 hour wait but that when he sees you--he sees you exclusively--no disruptions with phone calls or nurses knocking at the door.

We got there early since we did not know how long it was going to take to get into the place, so we went to the cafeteria after I'd signed in. It isn't far from his office. I waited over 3 hours (my son was getting aggitated but I had told him this was not unusual). It was well worth the wait. He spent all that time with me just up to the time it's lab closed. My cardiologist had already sent him my records and test results. I keep a graph of my BPs and HRs and print them off monthly. The only thing they did to tell me what was wrong was when I first went in the nurses took my BP sitting, then had me to stand, and then took my BP again. I had OH. He told me looking at my records while I had had POTS, I now had OH and that my ANS was failing. He told me I could anticipate (down the road) the need of a pacemaker and would have fewer warnings of faint. He told me falls were the 4th leading cause of death in elderly/people with this. He gave me restrictions and explained why I was experiencing the things I had. I intentionally wore sandals so he could see my purplish feet during his exam. He told me I pool blood and contrary to what I'd been told to do before, now I have to restrict my sodium (but still keep overhydrated). I think he asked about bruising and I'd mentioned I have had a life-long history of hemorrhaging and that hemeoncologist had 'diagnosed' it as Von Willebrands (even tho I did not have that factor)--the treatment would be the same. We talked about my EDS as having a component in my blood pooling (he is very experienced in EDS as well). He said he knew exactly why I was a hemorrhager and wrote down a lab test he wanted me to have there before leaving (which was why my appointment ended before the lab closed--and he escorted us the back way/short cut). He was exactly right. I have Delta Granule Storage Pool Deficiency. He sent me a letter about 6 weeks after the test, with the results instructing me to have my physician refer me to a hematologist. (I did see a hemeoncologist and I was given yet more instructions--before I have any procedure--even dental extraction, I need platelets infused first even though my platelet count is fine).

I found him to be very kind and compassionate. He listened to my questions and my fears. He was very calming. He told me that with this, there is a lot of trial and error but if one thing didn't work there were more things we could try. In Sept. my cardiologist went ahead and started me on Midodrine. Dr. G added Mestinon. I took the Mestinon for over a month and at the same time, he ordered a course of physical therapy (treadmil in aquaciser). The Mestinon made me so nauseous and I started having vomiting and some diarrhea. This was causing me to lose more weight and interfering with my therapy. I'd get through my therapy only to collapse when trying to shower to change into street clothes or be vomiting and stagger out of their shower room to the closest bench and just lay down.

I asked Dr. G who should manage these trials. He told me he could or my cardiologist--but added my cardiologist probably had fewer patients than he did. I tried to stay on the Mestinon and called my PCP to ask if she could give me something for nausea so I could continue the Mestinon. (But looking back, the BP was still occasionally bottoming out and the heart rate would go tachy on me--and my O2 sat would drop too low). My PCP told me she would not and that I would have to contact Dr. G. I spoke to his nurse who told me she would relay the message and someone would get back with me. It took nearly a month before anyone called (the nurse for his PA). They told me to stop the Mestinon since it was doing more harm than good and to let it get out of my system, then they would start me on another agent to go with the Midodrine. That was first or second week of Dec.--whole lot of worsening gut wrenching stuff while I still stayed on the Mestinon waiting for their call.

It is April and no one ever called to start me on anything else and warm weather is approaching. My BP still runs low on just the Midodrine. I asked Dr. G if I needed to see him again as I was leaving and he said, 'you'll get a blue card in the mail'. (Did not tell me in how many months I should expect that card--3 mos, 6 mos., 12 mos.?). Well I did get that card in March and have appointment this time with his PA this week.

I found it very overwhelming to hear all this stuff--excited to finally have something by expert in black and white (only as you can see by the forum, nothing is black and white). I thought of a million questions as we were riding home and over the next few weeks (and now I cannot remember any of them except to ask about these abrupt bouts of sweats where I am soaked, my hair is soaked, my bed is soaked and my pillow that I have to get into shower when strong enough/sometimes just happens anyplace--I was never a 'sweater before'). Also what did he mean my ANS was 'failing'--what happens then and what causes that (but again as you can probably see from the forum--so many tests and theories and studies and opinions and the only thing I can figure out is the other sypmathetic/parasympathetic nervous system may try to take over). I suppose this ANS stuff accounts for my sorely lacking thermoregulation which is why I get suddenly overwarmed in church or in the grocery store that brings me down. I have learned to carry water with me and a cell phone (DS got me one for Mother's Day last year while I suppose I was in denial about needing one). He gave me good instructions as to things I should avoid to lessen risks of faint. Some of those things I had already learned to do out of necessity--not taking hot showers and using a chair in the shower.

Even though he didn't run a lot of fancy smancy tests, I had had a general 'neuro' eval (albeit our neuro could not understand my request to get a seated MRI ordered for my 7mm years ago Chiari I, with my EDS, and whose to say the Chiari I isn't larger now or when I sit and gravity pulls--impeding the cerebral spinal flow). The neuro's note that she didn't find anything neurologically was sent to Dr G along w/ the other records/tests. We live in very rural area with no real neuro specialists here. I know it's something I have to pursue eventually but seeing the hemeoncologist was another 2 hour drive for us--he'd also referred me to a collegue, immunologist/pulmonologist/allergist and now I am receiving gamma globulin for hypogammaglobulinemia, plus she found I have vocal cord dysfunction and had to see yet another specialist to scope me and a therapist who specialized in VCD to teach me rescue breathing. All these trips are a 2 hour drive in city--some cites further away. I'd have to do the same to see a neuro specialist in Chiaris--and in getting to a standing/sitting MRI unit in network (which is why that's been on the back burner). DH drives me to appointments and drives for a living and even he has got lost in getting to some of the places.

Had it not been for the lab test (and another black and white explanation for the hemorrhaging), that Dr. G had run, I would never had found out these other things. (I knew I had low globulins and selective IgA deficiency and that I failed a pneumonia vaccine challenge back in Sept. before seeing Dr. G. That ID specialist told me I needed gamma globulin and we'd 'talk about it in Dec. at my next visit'. Knowing I had to see a hematologist about this other bleeding problem, I sought out a hemeoncologist who specialized in bleeding but would also be familiar with immune systems treating patients with chemo, I took the ID test results with me for a second opinion--not really knowing anything about gamma globulin and thinking it must not be too urgent if it can wait from Sept. to Dec. Come to find out the ID had known since that March. Once I saw the hemeoncologist and he saw those results, he called to get me into his immunology collegue right away and she got the ball rolling right away.

One thing is for sure, getting something from an expert in dysautonomia in writing sure lends credence to your complaints to your cardiologist/PCP/neuro (should they suspect anxiety/depression/malingering--nobody ever said those words to me but I'd wondered in the back of my mind if they don't label a lot of us women this way in their heads). But my PCP and cardiologist especially were very good at checking systems/organs/endocrinology, etc. I'm so grateful my cardiologist didn't give up on me or drop the ball. I am the first POTS pt my PCP is treating in all her years of practice and the second my cardiologist has had in our small town.

I'm sorry to go on but IMO, I would be happy to drive all those hours to see him again. I hear his PA is excellent as well. I thought it was very well worth our time, expense and effort. He had told me to call his office in about 4 weeks to get my lab test results and I waited 5 weeks. They told me they weren't back yet. At 6 weeks not hearing from Dr. G, I called its lab to see if they were back yet and they told me they'd been sent to him a week ago. I called Dr. Gs office back/had to leave message for nurse. There seemed to be confusion on their end. A few days before they sent me my test results with Dr. G's letter, I got a letter signed by him thanking me for coming to see him, he was an integral part of my health care team, but more or less that if I needed anything to call on my PCP or cardiologist.. When I had called his nurse to tell her about the vomiting/diarrhea with the Mestinon, she was curt to me and said, 'Well, some people, we just can't get their BPs up. . .I'll get him your message. . .we'll get back to you'. Now that amazed/shocked me since Dr G had told me not to despair if some agent didn't work--they had lots of things they could try (quite the opposite of feeling I got from his nurse). I don't blame Dr. G for that--he probably never knew what was said but I would like to bring this issue up to his PA when I see her this week.

I wish you well. I do think he is great. I still am not sure--going a second time and with yet a second set of expert eyes, she may wish to have other tests run. I just take it all in stride.

[AllAboutPeace]

rubytuesday:

Wow, that sounds like it was a great and thorough appt! I'm glad that your cardiologist picked up the phone and called him - I wish they would make things happen like that more often.

Just wondering...did he give you a specific reason for limiting your salt intake?

[rubytuesday]

rubytuesday:

Wow, that sounds like it was a great and thorough appt! I'm glad that your cardiologist picked up the phone and called him - I wish they would make things happen like that more often.

Just wondering...did he give you a specific reason for limiting your salt intake?

He said with my EDS (Ehler's Danlos Syndrome) and the orthostatic hypotension (and the fact that my heart rate was now more typically ranging in the low 60s to low 70s when my BP plunges) that the muscles and veins in my legs are very lax (not strong enough to constrict sufficiently to pump the blood back up to the trunk). I have tried the Rx compression stockings but it is so hard getting them off and on it takes 2 of us, and every time, it pops a vessel on top of my foot that takes months to heal and makes it difficult to wear a shoe (sorry off topic). I also am to keep my legs elevated as much as possible to help prevent pooling. Seeing the discoloration and swelling in my feet and legs, he said I am pooling blood and that salt would make the fluid retention worse (I've got good functioning kidneys). That in turn of course puts more demands on the heart and lungs. In addition, I would have to take a diuretic more frequently to get rid of the fluid (which would drop my already low blood pressure lower). Dr. G ordered the therapy to try to condition/strengthen the legs. Well I could work up to 70 min. in the aquaciser but my legs still are weak when the blood pressure is low. I pump my legs periodically and get up and down a lot to try to keep the muscles toned and prevent clots. If I stand, because the legs are not strong enough to constrict and prevent the blood from pooling/return to the trunk, I am to stand with my legs crossed (as if I need to use the bathroom fast) and/or 'shevel' as he explained it to me--slightly swaying from side to side or front to back which shifts the weight from leg to leg again in hopes to slow the rush of the blood pooling. I am not to stand still, lift, or raise my arms above heart level, bend at the waist or squat or stoop as when I go to stand, the blood pooling rushes to my legs and I risk faint. I've even tried lesser strength compression stockings but they also burst that vein on top of my foot. Another thing the water pills do is make me a little more short of breath. Because of the orthostatic hypotenstion and the blood pooling, I was also instructed not to do the standing and kneeling at worship services. Just sit.

Last summer was so debilitating to me and I think my cardiologist was worried something serious may happen if he didn't take charge. He's one of the younger ones in the large group of cardiologists that comes here from the big city but he's really thorough in his research/investigating things. He also told me if I couldn't get in contact with Dr G (altho he preferred Dr. G get things where he wants, then he--my cardiologist will be glad to manage), not to hesitate to call him. Dr G's goal with me is to make me hypertensive (and later work on the hypertension). I'm a far cry from that yet but glad to be going back before it gets hot.

After I responded to this post, I wrote down things I was thinking I need to ask when I go back this week.

[jlmahon]

I just had an appointment with Dr Grubb yesterday. I've been going to see him I think for about 8 years now. While I usually only see him once per year, he helps me more than my other docs I see frequently. What's really unique about him is he actually cares about each of his patients. I never ever feel rushed. He answers all of my questions and even tells me I can call if I ever have questions. His staff is wonderful too. They're really friendly and helpful. I really don't know how he can be such a great doctor considering his wife is very ill. I always leave my appointment feeling optimistic that there are still meds I can try to help me feel better and enjoy more of life. He always gives me advice on ways I can help myself. I know people complain about the wait time, but that's only because he cares and doesn't rush anyone. I truly wish he could train other docs to be like him.

[jlmahon]

I forgot to mention that he was right on with my diagnosis at my first visit with him years ago. He told me then that he thought my autonomic dysfunction was due to autoimmune causes. Since then, I've been diagnosed with rheumatoid arthritis and autoimmune thyroid disease. He really looks at all symptoms and tries to figure out the cause.

[rubytuesday]

Had my appt. with his PA today. I really, really liked her albeit a resident was doing a lot of the interviewing/explaining treatment plan under her supervision. Unlike my appt. w/ Dr G, there were interruptions once I was in the exam room. She tells me next visit (about 4 mos) I will see Dr G again--that they typically alternate each visit. Again, my issues were w/ nurse who must have been hard of hearing--had to loudly repeat (multiple times) and spell names of new medications. They did not have all my meds entered from the last visit, nor all my allergies and the doctor I saw today started first to add a drug I have an allergy to and then to one that was tried but made me too hypertensive. The doctor decided to try Lexapro added to my Midodrine. Makes me a little nervous since I read that it can cause insomnia, drowsiness and extreme fatigue (problems I already have)--in addition to very vivid dreams. But she was encouraging and gave me three medication reports of other agents they may try if Lexapro is not effective.

[CharmedLinz]

Thank you for all this information you guys, it's very helpful.

It will probably be a wait and see about whether we can get up there or not. Might have to wait until next year.

[Angelika_23]

I see Dr. Grubb and Cleveland Clinic. I have to say CC has been more helpful to me in that they have done more testing and found things out that I would not have known otherwise. Dr. Grubb is a good man and a great doctor, but I felt like he just wanted to keep giving me pills and SSRI's and I felt like I needed to figure out what was wrong FIRST before taking meds because I am very sensitive to them. On subsequent visits, Dr. Grubb did spend a lot of time talking to me about the test results from CC, which I appreciated because I could understand them a lot better. He did change his strategies based on the testing CC did, so that makes me think the testing IS important. Dr. Grubb is very compassionate and understanding, as are the doctors I see at CC.