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Christine1219
12-21-2013, 12:56 AM
My husband saw his rheumatologist yesterday and she wants him to travel to the Cleveland Clinic. I am not sure how we will afford this trip or if he will physically be able to make this trip.

What are your experiences with the Cleveland Clinic? What are good WG docs there?

Thanks in advance.

Pete
12-21-2013, 01:49 AM
Hi Christine,

My experiences with Cleveland Clinic have been excellent. I highly recommend that you see Dr. Alexandra Villa Forte. At my first appointment, she spent almost two hours with my wife and me gathering my history, examining me, and having me tested (CBC, metabolic panel, ANCA, P-ANCA, C-reactive protein, sed rate, hepatic panel, and urinalysis). She and her colleagues are actively researching our disease and fine tuning their treatment protocols. When she wants to change meds, she explains why and how the change should be accomplished. When I first saw her, I had been on cytoxan (100-150 mg/day) for about 16 months. She said that was too long and changed me over to methotrexate (15 mg/week). She also kept me off all immunosuppressants for about two weeks until my system could clear the remaining cytoxan out before starting methotrexate. (I thought this was good because my previous doc had changed me from cytoxan to immuran without any transition period. This resulted in a major adverse drug interaction which precipitated pneumonia and put me out of commission, but not in hospital, for about a month.)

Others on this forum see Dr. Carol Langford, about whom I hear good things. There may be others. This practice sees over 700 of us weggies, so I think they know what they're doing.

As far as traveling to Cleveland is concerned, there is an Intercontinental Hotel on the Cleveland Clinic Campus. It's connected to the Crile Building (where the rheumys are) by a skywalk system. The Clinic is close to University Circle where there are several museums (if you're so inclined) and many restaurants and shops. The Clinic is on the east side of Cleveland (opposite side from Cleveland Airport which is on far southwest side). Cleveland RTA operates a train line that runs from the Airport and connects downtown to rail lines leading to the east side (probably not walking distance to the Clinic) and to a bus line that runs to the Clinic and University Hospital. There may be other accommodations nearby as well.

I've not experienced any of the housing and local transport accommodations as I live about a two-hour drive from Cleveland in suburban Columbus. If airfares to Cleveland are too high, you may want to consider flying into Akron-Canton (CAK). It's a little over an hour drive from the Clinic and has service from Delta, USAirways, and AirTran from east coast cities. The fares are generally lower since it's not a "fortress hub" for any airline (CLE is a United hub).

Hope this is helpful.

Debbie C
12-21-2013, 08:23 AM
Hi Christine, I also go to the Clinic and I see Dr. Gary Hoffman there. He also spent about 2-3 hrs with me the first time and everytime I go back I am there a couple of hrs. First to see his "dr in training" then he comes in for about an hour.He is probably a better dr. than I am a patient!!! I have just found I can not tolerate these drugs so I am only taking 5 mg. of pred. ( Thank God ,it's been working ) I am in remission right now ,I have lung involvement and some sinus issues but nothing near as serious as some have it. Dr. Villa-Forte fills in for my dr. when he is not there and I have spoken to her a few times on the phone and she is very nice. There are alot of places to stay near the clinic and they also have shuttles for free that take you there. If you have any other questions just ask..they can usually get you in right away. Good Luck. Oh and once you see the dr. in Cleveland,they can always work with your dr so you won't have to keep making the trip. The first one is important. But I just noticed you live in CT...why can't you go to Boston,there are some very good drs. there ?

Christine1219
01-04-2014, 01:14 PM
Debra, I was thinking of you today. I spoke to a woman with WG who said just what you said: "why can't you go to Boston?". She sees Dr. John Stone at UMASS General. It seems that a 2 hour 45 min car ride is much more reasonable than trying to get poor, sick hubby on a plane to Cleveland. She did frighten me when she said that the Docs here where we live know nothing about WG. :( She also said that Imuran (spelling?) does nothing. My husband just started that yesterday. I did ask her when she began to feel "right" again and her answer was consistent with all of yours on here at 5-6 months. Really pushing for my husband to start the SS Disability application process. He is being his usual stubborn self. Also pushing to sell our house and my parent's house and purchase one house where we can all live (with an in-law set-up for my parents). Again, he is resistant. I feel that he is in NO position to be resistant of all of us sacrificing so much to make things doable. Oh boy - not sure what is going to happen with us...

windchime
01-05-2014, 09:37 AM
Dear Christine, It sounds like the reality of situation hasn't hit your husband yet. He thinks things will eventually get back to normal, but instead he will experience a new "normal" with limitations he didn't have before. Has he done much research on the disease? Perhaps you can print some pertinent articles for him to review. Good luck with the UMASS docs and I hope he will be able to make the trip. If he is real weak maybe going up the day before and spending the night would be helpful. Not as expensive as flying to Cleveland at any rate. Keep us posted.

Debbie C
01-05-2014, 11:52 AM
Hi Christine,so did you google any of the drs. in Boston. I remember when I last saw my doc. at C.C., I had mentioned some research being done in another country with wg that was posted somewhere on here and he kinda got pissed off at me and said what some of the best hosps. for wg were and he mentioned Boston. Bost I can't remember if it was at the unversity of Boston, Boston Mass. or what, but just google reumys in the Boston area that deal with w.g. and see what comes up. You definately need to get your hubby moving on disability since it does take awhile.How is he feeling now adays ? What drugs his he on besides Imuran ? I took it for a couple of weeks but couldn't get used to it ...like all these other drugs. You might want to see if there is a good kidney dr. in your area,even if he doesn't have any involvement there,they can be the best drs. sometimes. I like mine here more then the dr. at C.C. and he is very familar with w.g. Good Luck and keep us posted....I hope he finds a good doc. soon

rebekah
01-05-2014, 02:31 PM
Hi Christine,
I went to the VF symposium in July and Dr. Paul Monarch was a guest speaker. He is a rheumatologist at Boston University; just throwing another name out there if you're thinking about going up to Boston. In regards to CC, like Pete and Debra said, Drs. Langford, Villa Forte, and Hoffman are all excellent doctors. They were at the symposium too and are really knowledgeable. I'm actually going to make an appointment to see one of them myself.

I know plane tickets are expensive, but if you want to go to Cleveland Clinic and can't afford it financially, there are organizations such as Angel Flights (a quick google search will bring up many others) that will arrange free transportation for medical treatment. Whatever you choose, I hope you find a doctor for your husband and he is on the road to recovery and feels better soon.

renidrag
01-05-2014, 10:14 PM
Although in remission, Christine, I also visited with Dr. Monach at Boston Medical Center and Dr. Stone at Mass General. Both were incredible. Boston Medical is associated with Boston University Hospital so there are studies being done there. I would highly recommend either of theses Doctors and apparently as soon as possible.
Dale

annekat
01-06-2014, 04:53 AM
I know that the Cleveland Clinic is world renowned and all, but I would love to have someplace like the Boston Medical Center and the University hospital or Mass General, and and their docs, available to me. If I lived in that area, that is where I would want to go, rather than making the trip to CC.

lola24
04-08-2014, 12:38 PM
Hi there! I absolutely love the Cleveland Clinic!! I see Dr. Villa-Forte and she is absolutely wonderful and truly cares about her patients. I live in Michigan and it's about a 5 1/2 hour drive there and another 5 1/2 back. However, I have received the best treatment there. There was not one doctor in the state of Michigan who could diagnose or properly treat me. After 3 years of being extremely sick, in and out of hospitals, having multiple surgeries and nearing my own death, I was desperate for help and decided to go out of state to the Cleveland Clinic. After spending over three hours with me, I left there with a treatment plan and most of all, I left there with hope and confidence that my health was in the care of someone who is extremely knowledgeable about this disease. I would strongly recommend the Cleveland Clinic and this specific doctor with your husband's health care. Whatever you decide to do, I hope that your husband finds a good and caring doctor that meets all of his health care needs as he travels down his road to recovery. Good luck to you both and I wish you the best.

Alysia
04-08-2014, 04:19 PM
Hi there! I absolutely love the Cleveland Clinic!! I see Dr. Villa-Forte and she is absolutely wonderful and truly cares about her patients. I live in Michigan and it's about a 5 1/2 hour drive there and another 5 1/2 back. However, I have received the best treatment there. There was not one doctor in the state of Michigan who could diagnose or properly treat me. After 3 years of being extremely sick, in and out of hospitals, having multiple surgeries and nearing my own death, I was desperate for help and decided to go out of state to the Cleveland Clinic. After spending over three hours with me, I left there with a treatment plan and most of all, I left there with hope and confidence that my health was in the care of someone who is extremely knowledgeable about this disease. I would strongly recommend the Cleveland Clinic and this specific doctor with your husband's health care. Whatever you decide to do, I hope that your husband finds a good and caring doctor that meets all of his health care needs as he travels down his road to recovery. Good luck to you both and I wish you the best.

welcome to the Forum, Lola :) if and when you feel like, you are invited to tell us more about you. (you can start new thread at the "new members introduction").

mmthomm
05-03-2014, 03:09 PM
Hi all,
My rheumatologist has raised the possibility of sending me to Cleveland Clinic for further evaluation and confirmation of the current treatment plan (15 mg prednisone, Methotrexate, and RTX every 6 months after my initial 4 doses in December 2013). I was diagnosed with Wegener's in November 2013 and I have a lot of intracranial involvement - severe dural thickening, inflammatory mass extending to skull base and cerebellum, and a couple of blood clots just to make things more exciting. I know a lot of people on the forum recommend Dr. Villa-Forte but I'm curious if anyone is aware of other docs at Cleveland who work more specifically with WG patients with cranial involvement - I still have daily head pain, hearing loss, and balance issues related to the mass effect in my head. Supposedly I'm in medically induced remission but I feel like I'm teetering on the edge of a flare as my CRP has been rising recently as my prednisone dose has been decreasing. Any recommendations would be greatly appreciated!

Debbie C
05-04-2014, 12:25 AM
I am sorry you are going thru such a bad time with this. I go the Clinic and see Dr. Gary Hoffman,he is a rheumy but it sounds to me that you also may need to see a neurologist. Maybe you can make in appt. to see them both the same day. Good luck and keep us updated .

Pete
05-04-2014, 02:57 AM
I agree with Debra about trying to see a rheumatologist and a neurologist on the same visit. I see Dr Villa Forte and am very pleased with her.

You may want to talk to your doc about returning your pred dosage to the last dosage at which you were free of symptoms.

drz
05-04-2014, 04:58 AM
Consultation with some experts is always desirable. The clinic can help you determine who is most suited for your needs but also do your own research. One of the Weg experts can advise on who else might be appropriate for you to see at their clinic. Get an appointment with one and then send your case file to them and ask about getting a dual appointment with who ever else they advise.

Debbie C
05-13-2014, 11:08 AM
I have an appt at the Clinic on Sept. 10th. Just wondering if anyone else was going up there then,we could meet up !

pberggren1
05-14-2014, 07:54 AM
Where is the clinic?

Pete
05-14-2014, 08:33 AM
Where is the clinic?

Cleveland Clinic is known locally and colloquially as "the clinic".

pberggren1
05-14-2014, 08:35 AM
I sure wish I lived close by, then I could meet all you nice folk.

Debbie C
05-14-2014, 11:32 AM
Wish you did too Phil !!

Debbie C
12-12-2014, 02:12 PM
Going to Cleveland Clinic on Tuesday at 11:30 to see my new rhuemy Dr Carol Langford.....anyone going to be there then ?

Jaha
12-16-2014, 12:26 PM
Wishing you all the best with your new rheumy tomorrow Deb!:thumbup:

Debbie C
12-18-2014, 11:24 AM
Thx. Jana. All went well. I think I had a sinus infection with this wonderful Ohio weather ! Dr. Langford is very professional. I like her

jakekell
12-22-2014, 01:37 PM
Iola,

I live in the Kalamazoo area and had a terrible doc there. I know go to Villa-Forte and she is wonderful. My first Rhemy in MI was ok then got someone that had no idea what she was dong. I headed for CC and was the best thing I ever did with my WEGs.

jakekell
12-22-2014, 01:43 PM
My rhemy should have sent me to CC, but sent myself instead to Dr. Ville-Forte. This was the best move I ever made she great and Wegener's is very involved in Wegs. Good luck with your journey.

Mary

Debbie C
12-24-2014, 03:54 AM
Well I got a call from Dr. Langford at CC yesterday and she starts out by saying " How you feeling ? " well I thought I was fine before you called !! When I was up there last week she had me do another urinaliysis ( microscopic ) and she called and said she has noticed changes in my bladder and wants to to have to more tests done by a urologist and is going to mail what tests she wants done. She said so far there is nothing to be alarmed about ,that these things happen to people that have been on cytoxin !!! I was on that for 6 months and that was almost 4 years ago ! So I don't know what she is looking for or the tests but I wanted everyone ( like all of us ) you have been on cytoxin at some point you might check about your bladder ??? I will keep you informed when I learn more, I have an appt . on Jan 26th. Staring the year out right :(

Pete
12-24-2014, 06:19 AM
Hi Deb,

Hope the further tests turn up nothing serious. However, one of the side effects of long-term ctx use can be bladder cancer. When I had visible blood in my urine in April 2012, I had a cystoscopy that turned up no issues. I was treated for a UTI, and the problem cleared up. Now, a urinalysis with microscopy is a part of my monthly test battery. Dr Villa Forte said that the blood cells in the urine caused by wegs are different than those of cancer.

A cystoscopy is a test where a thin tube with a camera is inserted up the urethra into the bladder. It's uncomfortable but not painful. The lidocaine before the test helped.

Hope all goes well.

Debbie C
12-24-2014, 06:31 AM
Thx for the heads up Pete. I always seem to have a trace of blood in my monthly tests but the other rhuemy I had up there never said anything about it. I am sure it will turn up nothing so I will not begin to worry. The scope thing doesn't sound fun though !!

Dirty Don
12-24-2014, 07:04 AM
a thin tube with a camera is inserted up the urethra into the bladder.

Ouch...vaguely remember that part!!!

Debbie C
12-24-2014, 11:33 AM
Good maybe I won't remember it either !!!

annekat
12-24-2014, 12:29 PM
Yikes, I was on CTX for quite awhile, maybe 8 months, maybe more, not sure. I look forward to hearing how this goes for you, Debra, and really hope it is nothing to be alarmed about.

Jaha
12-24-2014, 12:58 PM
Deb,

I'm sorry that you have to worry about this, seems that she is right on top of things. It is better that it is checked out and that she will be very attentive to what could be a problem. Wishing all the best with the results and I know it will be alright. Take care!:hug3:

me2
12-24-2014, 01:09 PM
I would not be real alarmed at this point. Changes to the bladder from Cytoxan are not uncommon- cancer is much more uncommon.
36 years ago I was on Cytoxan for close to two years and had bleeding from my bladder and was then forced to quit the Cytoxan. Good news is I had remission at that point.

Many years later I had several months more of Cytoxan. It caused me intense bladder pain , presumably from the old Cytoxan damage, until I used Mesna ( and several herb supplements shown to protect the bladder against Cytoxan in mice. I'm not a mouse but I thought it couldn't hurt). The Mesna was really incredible. It protected my bladder so well I never felt the slightest pain.

The moral of my story is- some bladder trouble is possible but cancer is much more unlikely.

Hoping for the best has served me better than fearing the worst- although it is much easier to say than do.
Take care.

Debbie C
12-25-2014, 03:39 AM
Thanks ya'll for the concern,but I am not going to worry about it. If there's one thing I've learned from this disease ( and in life ) that if it's gonna happen it will and there's nothing worrying about it will change. I will let ya'll know what the results are. Until then ENJOY THE HOLIDAYS !!!!!