Our Trip To Gainesville = Disappointment

Our drive up to Gainesville was nice but filled with anxiety. We had no idea what to expect with the new Rheumatologist (Dr. Richards). We were very happy after our last visit (to see Dr. Segal) and excited about the possibilities of the two Doctors working together. Unfortunately the visit did not go well.

Dr Richards actually runs the Lupus Clinic. He was very condescending to us and treated Lori more like she was there to help them with their research rather than treating Lori for her illness. He ignored me completely (this was not a big issue as many of the Doctors we have seen ignore me on the 1st visit). He also hardly spoke to Lori. He directed the majority of his comments to Dr. Segal and the Resident that was there. Even that we could deal with. Many Doctors don’t have a good bedside manner. Also, if his job is focused on teaching, he would address his colleagues more than the patient. These issues alone would not stop us from continuing to see him. There were, however, other  problems that came up.

When the nurse took Lori’s vitals, her blood pressure was 144 / 102. Very high (for most people that is). As you know high blood pressure is unacceptable with any type of Kidney disease. As I have previously written Lori’s BP goes from super high to almost non-existent due to her POTS. On our last visit Dr. Segal appeared to know all about POTS and did not seem too concerned. In fact some of our fears were alleviated when he told us the POTS would get better as the Kidneys improve. We’re not so sure he knew what he was talking about now.

When the Doctors came in the examining room (they both came in at the same time) the first thing they said was “we have to get your blood pressure down” they reviewed Lori’s BP medicine and wanted to put her back on one of the meds the Cardiologist took Lori off of a while back. When I pointed out that “Lori’s BP was high because she was sitting and if they wanted a lower reading all they have to do is have her stand up and take it again” they completely dismissed my ability to understand Lori’s condition. Dr Segal just looked at me and then turned back to Dr Richards (who had his back to me). No comment was made to Lori or I. They started talking to each other about changing her meds and which one to add back to Lori’s daily dose of meds. Again and I reiterated my point. “If you want another reading it is as simply as changing positions. You will get three different readings if you have her lie down, sit up, and stand, with the standing reading being the lowest”. Dr. Segal, appearing not to believe me, said something to the effect of “Let’s see it”. I told them Lori would have to stand for about 2 minutes and then they will get a nice low reading.

Lori stood up and the resident got up to take her BP. About a minute later she took Lori’s BP. As expected (from both Lori and myself) Lori’s BP dropped drastically. The reading was 103 / 52. Both Doctors looked at each other with a strange look on their faces (I couldn’t see Dr Richards’ face but Lori said he looked quite surprised). They stopped talking about lowering Lori’s BP and immediately switched to “What is the Cardiologist doing about this”? We again told them that her treatment is to remove Lori from both BP medicines and keep her on a high salt diet.

At this point it looked to us as though they did not know what to do. Dr. Richards changed the subject with a “ What else do we have to address” type of comment directed to Dr. Segal. Dr. Segal asked Lori what else was going on. Lori told them about the “Pain in the ass” she has been having (the way she put it was quite funny though no-one but me laughed)

Their diagnosis was either Sciatica or Piriformis Syndrome, which is a cause of Sciatica…I think. CLICK HERE FOR LINK  They said Lori’s best option is to go to Rehab for treatment and pain relief. Dr. Richards wrote a prescription for rehab. When Lori asked if there was anything they can do to help alleviate some of the pain now they said “No”. I specifically asked about a cortisone shot (which has offered temporary relief in the past) Dr. Richards replied to Lori with ”You have pain pills at home correct? Just use those”. When Lori pointed out that the pills make her nauseous neither Doctor made any suggestions. When I add Lori’s reluctance to use Vicodin on a daily basis (so she doesn’t become addicted) again there was no response other than “Rehab is the best method”. So, no relief anytime soon I guess.

On his prescription Dr. Richards also put “General Conditioning” as part of the rehab. Dr. Segal suggested Lori start walking and try to get to 2 miles a day before our next visit. Dr. Richards suggested a Stationary Bike and / or Treadmill.  HUH!?! 2 Miles?!? Treadmill?!? Stationary Bike?!? Lori can’t make a sandwich without almost passing out from her low BP.

At that point, both Lori and I knew it was a lost cause. Without speaking we could tell by looking at each other we were on the same page. We both stopped asking questions and just wanted to get the appointment over with. There was one last thing Lori and I both took issue with. As we ended the appointment Dr. Richards asked Dr. Segal “When are we going to have “This Patient” come back. “This Patient”!?! He had her chart right in front of him with Lori’s name all over it. I could see her name from where I was sitting, yet he refers to her as “This Patient”. Unbelievable.

On the ride home we discussed it quite a bit. Right now the plan is to get an appointment with Dr. Peditto to discuss the Sciatica and treatment for it. We also have an appointment with Dr. Kuo (Cardiologist) to discuss and “rehab”. We will follow Dr. Kuo and Dr. Peditto’s advice on both.

As far as going back for our next appointment (3 months from now) it all depends on what we find when we receive our copy of the Doctor’s notes. The Clinic manager said it would take about 10 days for the labs to come back and she will fax us all results and notes at that time. If the notes are good and there appears to be a good understanding of Lori’s conditions and a treatment plan listed then we will probably give them another try. If not we will again be looking for a new set of Doctors.

In the mean time Lori still can’t get comfortable. She took a pain pill. It helps a little. Next stop Dr. Peditto.