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View Full Version : What does Cleveland Clinic provide that local doctors do not?



csjknits
08-14-2015, 01:02 AM
I live fairly close (just a few hours away) from Cleveland and have been considering making an appointment. I am curious, though--what do you get there that you can't get from a local doc who is knowledgeable?

I am currently nearing remission (diagnosed late april 2015), if not already there. My creatinine and GFR are almost normal. Recent SED rate and CRP tests are normal. ANCA is between 1 and 20 now (was 512 in May). I am working with the nephrologist who saw me while I was in the hospital. I was working with a rheumatologist but we disagreed about treatment and I found him to be difficult to work with.

My nephrologist is up to date on latest treatments. He has experience with Wegeners and is working with other people who have it. He, and his office, are responsive. He shares articles with me that he thinks I will find helpful. He explains bloodwork. He is allowing me to make choices (within reason) regarding my treatment. I feel that he has a good handle on the disease. He also said that there are others in his office with experience should we encounter something challenging.

I don't want to jinx anything, but I feel pretty good right now. I feel so much better than I have for many months.

Is Cleveland still something I should consider? I don't feel like I need to go, but everyone here has such positive things to say about it that I doubt my decision.

Pete
08-14-2015, 02:47 AM
The biggest thing you get at Cleveland Clinic is research and experience in studying and treating Vasculitis. I see Dr Villa Forte there. She sees a dozen Vasculitis patients every day she works. I was diagnosed at Ohio State - a major teaching hospital - and they only see a few dozen Vasculitis patients in a year.

annekat
08-14-2015, 03:01 AM
csjknits, it sounds like you have done amazingly well in a short time, compared to many of us. Your nephrologist sounds very good and capable of handling the kidney aspects of Wg, and may have good general knowledge about other types of involvement. There is always the possibility of relapse/flares when you try to reduce meds, or if you come off of them completely. Flares may involve other parts of the body than the original ones. It would be good to have a competent rheumatologist, whom you get along with, to oversee your case. Some people just go to the CC or other specialist center once or twice a year and then manage the rest of the year with their local docs. If it is feasible, it might be a good idea to give the CC a shot, for the reasons Pete listed above. Especially if things should start to take a turn for the worse, even a little bit. The CC docs can look at your treatment history and current issues and give recommendations. Having their input could reassure you that things are on the right track. Best of luck, and I hope the good progress continues and you can avoid future flares.

Psyborg
08-14-2015, 04:50 AM
Also as a side comment. CC will be willing to work with your current doctors as well. I come up from Columbus to see them and I wouldn't exchange their knowledge for someone local now in regards to the Rheumy end of things. I have seen a Pulmonologist in Columbus and Cleveland and feel very good with either option.

If you don't have a Rheumatologist you really feel good about I'd say see CC for a Rheumatologist and keep your current Nephrologist that you like. But that's just my opinion.

drz
08-14-2015, 05:19 AM
I think the most likely outcome is they would confirm that you are getting good treatment. Such consultation at Cleveland Clinic would also serve to make future consultation easier in the unlikely event you should develop some new problem in the future. You might also be able to join some research projects at Cleveland to assist in learning about how to treat Wegs more effectively. I do this at Mayo.

Debbie C
08-14-2015, 11:01 AM
Hi and welcome to the group ! That is great that you have a dr. that is good and seems to have a handle on things. My kidney dr here is also good (although ...thank god ,I don't have kidney envolvement ) But you will find as time goes on that your list of drs. will grow. It is good to keep a check on things before it attacks,such as an ent, a pulmy, and an opthromalogist. Where at in Ohio do you live ? I am in Youngstown and I also go to the clinic although I see Dr. Carol Langford there. I just think she is wonderful ,as well as knowledgeable. Whenever I have a question she will get back with me that day and always says if I need her to call. And there has been a couple of times where she has called me to see if I am o.k. since my #s may have gone up a little. I personally think you should get established with one of the reumys up there just in case your dr needs a consult they are aware of you. Good luck on reaching remission.

csjknits
08-14-2015, 11:32 PM
Thanks everyone!
I do have an ENT that I have been seeing for 5 years. I also now have an ophthalmologist since I had uveitis and iritis prior to hospitalization. I had a great pulmonologist in the hospital but I (thankfully!) did not need follow up. I think a rheum at CC would be the greatest benefit.
I live in Western NY, not Ohio. About three hours away.
I know I am lucky at the moment. The plan is to switch to Immuran in a few weeks and I am terrified. As much as I hate cytoxan, it hasn't been all that bad and it worked.

Corrie

Debbie C
08-15-2015, 12:22 AM
Corrie,the one thing about ctx is that long time use can cause cancer. And also before taking Imuran there is a blood test they need to give you to make sure you are able to take it. Again good luck

Pete
08-15-2015, 01:24 AM
Hi Corrie,

I echo Debra's advice about cytoxan and immuran. One of the long-term side effects of cytoxan is bladder cancer. So stay hydrated and urinate as soon as the urge arises.

When I was switched from cytoxan to immuran, I was not given the blood test. I had a terrible reaction that caused a major flare coupled with pneumonia. I was pretty much out of it for 3-4 weeks. Found this forum about then and got a specialist at Cleveland Clinic to treat me. On her first examination, she said I was lucky to be alive.

csjknits
08-15-2015, 03:19 AM
Believe me, I know about the potential side effects of cytoxan. That is why I am so anxious to get off it. That, and I am really tired of losing so much hair. :) The plan for now is to try Imuran and keep rituxan if needed in the future. I am at high risk for relapse due to the severity of my disease and some other factors.

Is the blood test separate from what is in the regular bloodwork I do?

I really appreciate all of your advice! It's nice to have other people out there going through the same thing I am.

annekat
08-15-2015, 03:51 AM
If it's found you cannot take Imuran, you could take methotrexate. It has worked well to keep my disease activity under control since stopping CTX. It carries some risks regarding liver function with long term use, but that can be monitored in blood tests, and it is better than staying on CTX. I think all the meds carry some risks and not everyone can take all of them. Best of luck in all of this.

drz
08-15-2015, 04:19 AM
The test is to be sure you the necessary enzymes to process the drug adequately. It can take awhile to get the test results so I was started at a very low dosage before the results were available. My doctors said that would quickly verify if I could handle the azathioprine OK. I have not had any problems with it except it does elevate your liver tests so I had to cut back on a statin drug that is also processed by the liver.

Birdie
08-15-2015, 06:15 AM
handle the azathioprine OK.

had to cut back on a statin drug that is also processed by the liver.

My cholesterol whent through the roof when I started treatment. I had 14 prescriptions at the time so no telling why. I had nasty reactions to statins as soon as I switched from cytoxin to azathioprene. So now I'm just living with the high cholesterol.

csjknits
05-18-2016, 02:40 AM
Well, a year later I finally made an appointment. I'll be seeing Dr. Villa-Forte. It's a long way to travel for a one hour visit but I will feel better knowing that I'll be seeing an expert. I like my local doctors a lot but I don't feel like I have a genuine "team" in place.
Can you tell me what I need to do for this appointment? What do I bring, all of my records? They did not ask for anything.
Thanks!

Pete
05-18-2016, 03:54 AM
You may want to take an autobiographical case history (symptoms at onset, initial therapies and response, flares, etc.), current medication list, and most recent lab reports. This will help provide structure to the appointment.

I see Dr Villa Forte. She's great. She will listen and make sure she understands you. She'll also explain her treatment regimen. All she sees is Vasculitis patients. She does general medicine on her annual mission trips to Latin America.

Let us know how it goes.

annekat
05-18-2016, 04:30 AM
You may want to take an autobiographical case history (symptoms at onset, initial therapies and response, flares, etc.), current medication list, and most recent lab reports. This will help provide structure to the appointment.

I see Dr Villa Forte. She's great. She will listen and make sure she understands you. She'll also explain her treatment regimen. All she sees is Vasculitis patients. She does general medicine on her annual mission trips to Latin America.

Let us know how it goes. I am just curious how it all works. Does this mean that they do not need the medical records, or that they will get them some other way? Carrying around one's entire medical records to give to new doctors, or deciding which ones are pertinent, seems like a daunting proposition. In any case, csjknits, congrats on making the call and getting the appointment set up. I wish I could see Dr. Villa Forte.

csjknits
05-18-2016, 04:31 AM
Thanks, Pete. I'll make sure to have my labs done right before then so I have current information. I'm looking forward to hearing what she has to say. Since I started treatment I've been really lucky (knock wood!)--no flares so far. My ANCA is high, though, and I keep getting sinus infections, so it will be good to get her opinion.

csjknits
05-18-2016, 04:36 AM
I was surprised--they didn't seem to want any records. They did ask for my primary, but they did not ask who is treating me for this. I asked if I need to bring anything and they said no. I'll bring it anyway, though--at least the most current labs. I'm sure they can get in touch with all of my doctors after the visit as well.
I am lucky that we live only a few hours away from the clinic. I'll report back after I see her.
Corrie

Dirty Don
05-18-2016, 05:20 AM
If CC is like other major research/care hospital systems, Mayo for one, they will do their own workups & their own dxes. They MAY consult your previous docs if there are questions, but since you will be in better hands for the most part, they are more confident in their own. Best to you.

Pete
05-18-2016, 05:45 AM
I am just curious how it all works. Does this mean that they do not need the medical records, or that they will get them some other way? Carrying around one's entire medical records to give to new doctors, or deciding which ones are pertinent, seems like a daunting proposition. In any case, csjknits, congrats on making the call and getting the appointment set up. I wish I could see Dr. Villa Forte.

Thanks to HIPPA, you can sign a release form and the docs at CC (or any other hospital) can get on-line real time access to your existing records.

drz
05-18-2016, 06:41 AM
I signed the release forms and Mayo got a lot of my records from other places. At my first visit though they gave me back several hundred pages of info they had received. I gather they either scanned them or took the info they felt necessary and returned all the papers to me.

Velma
05-27-2016, 10:33 PM
YES YES YES by all means go see them .. they are the top hospital in the world that deals with WG. If they don't know they will find someone who does.. You will get the best treatment there .. please make an apt and talk to them. Just try. You will be surprised.

csjknits
06-14-2016, 11:01 PM
I wanted to give an update on my visit. It was 100% worth the time and money. Dr. Villa Forte is so knowledgeable about this disease and it was clear how much of a difference that knowledge makes. She made a few changes to my current plan. For example, my docs have me doing blood work every 3 months and she said once a month is better, especially since I have kidney involvement. She thinks I might have a small flare at the moment, which my doctors were treating more as a sinus infection. I have an ok team in place but they are all specialists in their general areas--kidney, eye, ear--but don't have a good whole systems approach which she seems to have. I am really glad I went to see her.

drz
06-16-2016, 02:32 PM
I wanted to give an update on my visit. It was 100% worth the time and money. Dr. Villa Forte is so knowledgeable about this disease and it was clear how much of a difference that knowledge makes. She made a few changes to my current plan. For example, my docs have me doing blood work every 3 months and she said once a month is better, especially since I have kidney involvement. She thinks I might have a small flare at the moment, which my doctors were treating more as a sinus infection. I have an ok team in place but they are all specialists in their general areas--kidney, eye, ear--but don't have a good whole systems approach which she seems to have. I am really glad I went to see her.

i guess you found the answer to your question----experience and expertise. Glad you went!