New Doctors, New Clinic, Renewed Hope

We had a pretty good experience on our trip to se Dr. Segal this week. Our initial impression was a good one. He comes across as being very mild and soft spoken. He seems to know what he is talking about. Even when we threw the POTS diagnosis at him he had a response for it. There was nothing we asked that he didn’t know about or even hesitated when giving a response. Speaking of POTS, Dr. Segal said that some of the Orthostatic Hypotension could be caused by the Kidneys not working properly. It is his opinion that, once we get the kidneys back to functioning properly Lori’s orthostatic intolerance will improve.

He spent about 30 minutes with Lori and me mostly talking. It was obvious he had read all of the information we sent up to him by the questions he asked. He took a complete history of Lori’s Lupus, from the diagnosis until now including any and all treatments. He simply asked questions and took notes. No comments were made on any previous treatments or Doctors.

Once he completed the history he talked about his treatment plan and what they actually do in his office. As it turns out, he works as part of a Lupus Clinic that is run in conjunction with the Rheumatology department. From the information we have right now it looks like the Rheumatology Department actually runs the clinic with the assistance of the Nephrology department. This makes sense since a Rheumatologist is the Doctor who treats Lupus in general. The research grant I linked to in the other post (click here) is actually run by the Rheumatologist in charge of the Lupus Clinic. His name is Dr. Hanno B. Richards (info link).

Dr Segal asked who Lori’s current Rheumatologist was and if she would be willing to be seen at their clinic for both her general Lupus treatment as well as her Kidney involvement. We were more than willing to go with this route. In fact it was great! For the 1st time in over two years we will have a Rheumatologist and a Nephrologist working together! You wouldn’t think this is a great accomplishment but it is. We have seen 5 Nephrologists and 4 Rheumatologists in the past 2½ years and they all (with the exception of Dr Segal) question the other professions’ ability to treat or method of treatment regarding the Lupus and/or the Nephritis. Now we will have 2 doctors who not only will agree on treatment but will work together to get the best overall results!

So we will be seeing Dr. Richards as well as Dr. Segal starting next month.

In addition to treating the patients the Lupus clinic is very active in research. Dr Segal asked Lori if she would be interested in participating in any applicable studies. Lori said she would be more than happy to help in any way she could. Dr Segal was happy to hear that and, when he was done with his exam, he introduced us to one of the research assistants. More on that in a minute.

Dr Segal was pleased with Lori’s proteinuria level. It was down at 1400. For those of you who don’t remember it was as high as 12,000. It should be less than 150. The 1400 reading is the lowest it has been since the diagnosis of Nephritis. (Yay!) We were amazed at the results as well since Lori has not had any medication to treat her condition in over 6 months! Dr. Segal said he was sure the decrease in protein was due to the Chemotherapy treatments from the beginning of the year. Dr. Tumlin also said it could take a few months for the effects to be seen.

The next course of action is a heavy dose of CellCept® ( Mycophenolate ) CellCept® is an immunosuppressive drug that was developed to help the body aid in healing and prevent rejection with transplanted organs. Lori was on this drug previously. The dose she is taking now is higher than the previous dose. No prednisone or other steroids were prescribed at this time however Dr Segal did hint that they may be in Lori’s future (again). We’re not sure what other treatment Lori will be undergoing once she sees the new Rheumatologist (Dr. Richards).

Our follow up visit with Dr Segal is January 17th at 10:30. We also have an appointment with Dr. Richards at 10:45 the same day. Dr. Richards’ nurse said we would probably be seeing both at the same time this visit, followed by alternating Doctors with each successive visit.

Now, back to the research studies. Lori was asked it she would be willing to participate in two different studies. She was very excited about this. With all of the trips to Emory we were never asked, nor was any mention ever made, of any specific research studies.

The 1st one was a simple, one time donation of blood for a DNA study. Lori’s blood will be added to a bank that is used for DNA comparisons research. We were assured that no clones of Lori would be created. (HA!)

The 2nd one will be ongoing. Lori will give a couple of tubes of blood each time she is at the clinic. The blood will be used to aid in proving or disproving any new treatments. As it was described to us when there is a new treatment in the works they can use the stored blood to see how or if it truly will work. With a store of blood that carries different diseases in different stages they can do a lot of research quickly.

As Lori said anything she can do to help with any research she would be happy to. At this time there is no benefit for Lori directly other than helping Lupus research in general. Lori got a laugh out of the assistant when she asked if her “blood donations would be tax deductible”.

Between the blood for Dr. Segal’s orders and the blood for the 2 studies Lori had to give 12 tubes of blood. A new record!!! Her previous record was 9. After a serving of cranberry juice I wheeled Lori back to the car and headed for the hotel to rest.

The trip to Gainesville itself was quite pleasant. It is going to be much nicer than driving to Atlanta. The 8 hour drive was just so long. It took a lot out of Lori. This one is a breeze. We should be able to make our future trips very enjoyable. Most we will do as day trips but we did find a very nice Holiday Inn Express right down the road from the hospital.

So that’s about it for our trip to Gainesville. The bottom line is we, once again, appear to be heading in the right direction.