User Tag List

Likes Likes:  0
Page 1 of 4 123 ... LastLast
Results 1 to 10 of 34

Thread: Cleveland Clinic

  1. #1
    Join Date
    Dec 2013
    Location
    CT
    Posts
    20
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Cleveland Clinic

    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.

  2. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,371
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.
    Last edited by Pete; 12-21-2013 at 01:51 AM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  3. #3
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    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 ?
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #4
    Join Date
    Dec 2013
    Location
    CT
    Posts
    20
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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...

  5. #5
    Join Date
    Apr 2013
    Location
    Orlando, Fl
    Posts
    742
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  6. #6
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    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
    Life isn't about how you survive the storm, but how to dance in the rain !

  7. #7
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  8. #8
    Join Date
    Nov 2009
    Location
    South of Boston
    Posts
    797
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    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

  9. #9
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.
    Anne, dx'ed April 2011

  10. #10
    Join Date
    Apr 2014
    Posts
    1
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

Page 1 of 4 123 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •