Rant - Cleveland Clinic

[BookNut]

I was scheduled to have a chest CT and a Methacholine Challenge test today. In order to have the tests I had to be off some of my meds for several days and my most important meds since last night. I had a MISERABLE night. Very tight and short of breath. The tests were scheduled for 2 pm today. Well - today financial called to let me know they have not received approval from my insurance. Upon investigation, it looks like the doctor's office neglected to put in a request for approval. Meanwhile, I have been in Ohio since July 17. I was not able to get an appt till August 19, which was ok with me, since I was here for the birth of my granddaughter, and I wanted a specific doctor. But meanwhile my life is going to be on hold for who knows how long now. Not to mention I will have to go through the whole medicine discontinuation again.

I just called the doctor's office. It is three hours before the test and it takes an hour to get there. The assistant said he would get back to me asap. I feel that they should just suck up the charges - but I know that will not happen. So, we are going home this weekend and I will have to make the 6 hour trip all over again. It will be fun to see even more of our precious granddaughter - but it would be nice for life to go back to normal. To top it all off my husband broke his collarbone and his right arm is immobilized, making it impossible for him to do much. And I am sure my daughter would love to have her pretty baby room back! It is covered with our junk for a long term stay. Grrrrrrrrrrr!!!!!

[annekat]

I'm so sorry to hear this, Jacquie. It seems like more and more we are at the mercy of bureaucracy, inefficiency and lack of attention to detail, at the hands of all kinds of entities that are more powerful than we are. I'm glad you ranted, and wish there was something that could be done about it all.

[BookNut]

I am really angry about this. I am just glad that I have a good excuse to come back to Cleveland to see my family. But wouldn't you think they would have been extra careful for someone who has to make a 6 hour trip to get there! No one has called back, so I called the labs to make sure the appts were cancelled and that I will not be charged a penalty for missing them. Thanks for your sympathetic words. And you are sure right about being at the mercy of bureaucracy!!

[annekat]

I don't blame you at all for being very angry. I am angry lately, too, about the shortcomings, general sloppiness, and lack of caring of different companies, etc., that I have to deal with. But nothing that involves a 6 hour trip! I, too, am glad your granddaughter is another reason for the trip. Otherwise, I'd think you might be tempted to just cancel the whole thing and try to get the same tests closer to where you live. In the old days, whenever those were, you'd have gotten a lot more concern for your situation, I'd think. I think a letter to the doctor and/or someone high up the ladder at CC might be in order. His staff should be reprimanded for their oversight and you should certainly get some consideration for having to go through all this. Best wishes to Bob, too, on the healing of his collarbone!

[godgirl]

That's unacceptable! I work in billing for a provider, and this should have been done long beforehand. You may want to call and speak to the Patient Advocate about this. I know it doesn't help today, but they may be able to get you in earlier than just calling the regular scheduling departments. They also need to know what happened in the billing office. And most importantly, they should know that with you discontinuing your meds, this has now become a patient safety issue. Meaning, you had health problems because of the prep work for this and now you need to do this again.

Something else to consider is calling your insurance company directly before discontinuing your medications next time. That way, if they have negelcted to get an authorization/certification for the procedures, you'd know before you stopped your meds. They should have taken care of this, but better safe than sorry - especially since it's happened once!

Just my two cents...

Jen

[BookNut]

Thanks Jen! This is good advice. I certainly will verify coverage directly with my insurance myself next time. I DID email the doctor so he knew that I just did not skip out on the appointments. The financial person evidently called me on Friday. i was on the road and had low cell phone reception and the message didn't work either. I called her back and left a message. I then left 4 more messages on Monday and Tuesday. She called at 8:15 on Tuesday and again did not leave a message. SO frustrating. But hopefully I will get it settled. The one bright spot is that it is great to have an excuse to see more of our granddaughter than we thought we would! Thanks again. I will definitely follow your advice!!

[vdub]

Unfortunately, I have learned that most people can't be relied on to do what they are supposed to do or say they will do. For whatever reason, mostly unintentional, things just don't get done. So I follow-up on everything. Not to the point of being a pest, but I certainly keep my issue in the top basket.

Fortunately, on pre-auth's, I can monitor the progress on-line. I'm on TriCare.

[BookNut]

Well, we are home right now facing a new set of challenges. I emailed the doctor about my displeasure and he apologized and promised to get it all worked out before scheduling the tests again. Thanks everyone for your responses, and I will as per Vdub and Jen - be SURE to check on the progress frequently. I did find out that I DO need to continue my allergy medicine AND my Singulair. I had questioned their value prior to this. I am still not doing well - but should be able to get back on my feet soon. Now my biggest issue is my mother-in-law who has fallen and needs constant attention. We will be relieving my husband's brother, who is dealing with this every day for at least this week. Although she is mentally competent, she has NO UNDERSTANDING that both her children are now in their 70s and not as able to cope with things as well. She is endlessly demanding. My poor brother in law has Parkinson's and a wife with disabling COPD, and he is having to go to his mothers all day and make her meals for her. We will do that through next weekend to give him a break. I was there for two hours. She is always cold, so the house temperature is about 82 and humid.,,,and she is wearing a heavy WOOL cardigan. I was in severe breathing trouble within and hour of being there, as heat, humidity are my worst enemies. We will bring food tonight and eat on the porch while she eats inside. I will be looking into getting additional home health aides to deal with the situation as Bob and I go back to Ohio to pursue medical treatment for my asthma problems and his broken bone issues. Ahhh. Life is never easy!!

Again - thanks to all for the sympathy and great ideas. LOVE this forum SO MUCH!!

[annekat]

We love you, too, Jacquie, and I always look forward to your updates. I'm sorry you don't have more good stuff to report, though. I'm glad the doc apologized and am now assuming you won't be charged for those missed appointments. I'm sorry for what your mother in law is going through and the effect it has on all of you. And I wish you yourself were feeling better! Here's hoping that all the current problems get sorted out so you can make your trip back to Cleveland without any anxiety, both get your medical issues dealt with, and see your adorable granddaughter again.

[vdub]

Since you are in Rochester, have you considered going to Mayo? They are the ones who gave me my first DX and then UofU did the confirmation. Sure would be easier to drive across town instead of going to Cleveland.

[BookNut]

Thanks, but Mayo is the wrong Rochester. I live near Rochester in upstate New York. The Ohio trip takes 7 hours with pit stops. Not too bad...but nothing we want to do every week. It is great that my daughter and family live about 40 minutes from the clinic so at least I don't have motel and restaurant expenses!!

[vdub]

Have the docs concluded you don't have wegs?

[BookNut]

My current docs concluded that I do not have Wegs over a year ago. I had one doctor who said I had "mild wegeners" about the time I joined the forum. She wanted me to take Imuran, but I refused to take it till I had a second opinion. I went to a pulmonologist who ruled it out. I have only seen the Cleveland Clinic doctor once, but he had already reviewed my records and says he see no indication of Wegeners. I stay on the forum because I do have some of the same symptoms, so find many of the posts very helpful. Plus - I really enjoy this community of brave and generous people.

[BookNut]

Well ... the saga continues. I just received the formal denial from my insurance company for the CT scan requested by the Cleveland Clinic doctor. According to the wisdom of my insurance company, it is "unclear" that I have significant respiratory symptoms such as shortness of breath and cough. I guess a 40 mg prednisone taper prescribed 7 times in 10 months for shortness of breath and irreversible wheezing and cough is not significant. Silly me. Must be I am just a hypochondriac.

Additionally, I am getting a serious run around from the doctor's office. They told me to call back and check on the progress on Tuesday, if I don't hear from them first. I plan to give them one more chance to get me the tests I need and another appointment with the doctor. If I get nowhere, I will assume that the doctor is not interested in having me as a patient. I will go back to New York and see if I can at least get the methacholine challenge test ordered and done there. Then I will take great pleasure in composing a letter to the doctor about the extreme incompetence of his staff.

[Dirty Don]

Then I will take great pleasure in composing a letter to the doctor about the extreme incompetence of his staff.

Don't forget to 'cc:' your 'lawyer' too...that usually wakes them up...

[BookNut]

That sounds like an excellent idea!!

[annekat]

Right on, Jacquie! No holds barred in giving them a piece of your mind.

As for the insurance, I think I am doing better on Medicare than you are with your company; I've had two CT scans and an MRI in the last 6 months and there didn't seem to be any problem, no waiting, or anything. I guess having WG could have made the difference. But you are not absolutely sure what the heck you have and are trying to find out! This is ridiculous! I wonder if the doctor could call them and appeal that decision.

[BookNut]

I am hoping that the doctor might appeal the decision...though that will take time. I plan to ask if they can just submit a new request with LOTS more detail and see if that is approved. It might be faster than waiting on an appeal. I have never had trouble getting a CT before. I am actually more interested in the methacholine challenge test which seems to be completely lost in this whole mess. I am not looking forward to it, having already been through stopping my meds. But if it will determine something it will be worth it. Evidently it is good at eliminatinng asthma as a cause of breathing problems and that might be helpful. If nothing else it would force doctors to look at other possibilities.


I am particularly upset because every day reveals some way that the sob has affected my life. I went out two days with my daughter to doctor appts for herself and the baby. Both days we tried to do a little shopping. Nothing big. A look around Crate and Barrel one day, and a quick trip round Whole Foods the next. Even leaning on a shopping cart in Whole Foods I felt like I had a huge knot tightening in the middle of my chest, and had to stop multiple times on my way to the car. I was totally spent by the time I got home. Frustrating.

[annekat]

I just don't understand it, Jacquie. I'd think that the doctor himself, knowing the condition you are in and his reasons for wanting a scan, would bend over backwards trying to get the insurance company to change its mind, or like you say, to submit anew request with a lot more detail. I think CT scans are very commonplace and insurance companies should be prepared to cover them when requested by a highly respected doctor at the CC (although I understand that YOUR respect for him has dwindled).

[BookNut]

I think part of the problem is that I never seem that bad at most doctor's offices. My asthma doc has seen me at my worst, and that is why I think she is the one who pushes the most to find an answer. Typically when I go to the other specialists it is for a three month check up. Often I am at my best. Wheezing like crazy upon deep exhalation ( that is a given, 24/7/365) .... but with good o2 levels and lung capacity tests. By the time I am sitting in their offices, I have already navigated my way across the parking lot and through the hospital corridors. I get into the examining room and usually wait about 10 minutes....enough time for the shortness of breath to dissipate. Two years ago when I only had the wheeze and cough, a technician gave me a lung capacity test, followed by a brisk walk around the hospital, and then another lung test. I did well because sob was not a problem then. I will definitely ask my pulmy to repeat that test now that I have such persistent sob.

Thanks for listening, and also responding to questions helps me to sort out various ideas. I will let you know how things progress. Bob has another ortho appt. in two weeks, so we are in Ohio at least that long anyway. Can't believe that by that time we will have been working on this problem for 8 weeks!!

[annekat]

It is so true that docs often get very little of how we are doing based on that short window of time in their office. The pulmonologist who is treating me for WG said that I sounded "pretty good" when I had severe lung involvement before anyone knew I had WG. Another doc suggested WG based on some tests, and this jerk of a pulmy still didn't think I had it; I always seem to sound "pretty good" in his examining room no matter what I go through the rest of the day. If I hadn't suddenly noticed a saddle nose and been able to show it to him, and if I hadn't gone to the ENT on my own for a positive biopsy, then I might still be undiagnosed and untreated, or dead!

[drz]

I think part of the problem is that I never seem that bad at most doctor's offices. My asthma doc has seen me at my worst, and that is why I think she is the one who pushes the most to find an answer. Typically when I go to the other specialists it is for a three month check up. Often I am at my best. Wheezing like crazy upon deep exhalation ( that is a given, 24/7/365) .... but with good o2 levels and lung capacity tests. By the time I am sitting in their offices, I have already navigated my way across the parking lot and through the hospital corridors. I get into the examining room and usually wait about 10 minutes....enough time for the shortness of breath to dissipate. Two years ago when I only had the wheeze and cough, a technician gave me a lung capacity test, followed by a brisk walk around the hospital, and then another lung test. I did well because sob was not a problem then. I will definitely ask my pulmy to repeat that test now that I have such persistent sob.

Thanks for listening, and also responding to questions helps me to sort out various ideas. I will let you know how things progress. Bob has another ortho appt. in two weeks, so we are in Ohio at least that long anyway. Can't believe that by that time we will have been working on this problem for 8 weeks!!

Wouldn't a lung function test show your problems clearly? Or a stint of pulmonary rehab where an expert would observe these problems first hand and document them in your record.

[Jaha]

I want to once again express to you how important that it is for you to help the drs. office fight for these tests to be done. Your insurance company doesn't want to have to pay for anything if they aren't forced to. I suggest that you spend your time calling them every day maybe even twice a day. You need to be in contact with your nurse manager at the insurance company and raise hell with them. You are the insured, you have paid for your policy, so they are working for you. Yes the office's can screw up pretty good sometimes, but They deal with 1000's of patients and probably 100's of different ins. companies, with a lot of different loop holes to jump thru. If you want answer to your illness sometimes you have to take the bull by the horn and go to the one not complying. I worked in the insurance billing field and own a billing company for over 32 years, so I know all the tricks the insurance companies pull to get out of paying for something that the policyholder needs. There were a certain % of claims that the policyholder always needed to fight the company to get paid. They will do more for the policyholder than the will the office. I'm just say'n get strongly involved with the approval process, with your insurance company. Best of luck to you!

[BookNut]

Wouldn't a lung function test show your problems clearly? Or a stint of pulmonary rehab where an expert would observe these problems first hand and document them in your record.

The biggest puzzle has been the fact that my lung function tests are pretty good. I think if I could do a test after doing some exercise it might change the picture a little. My asthma doctor bugged my pulmy about doing a bronchoscopy. At our first meeting he looked at the lung function test and my records and said that he really did not see a need for it. Then he listened to my lungs for a minute and said "When do you want to schedule the bronchoscopy?" The bronchoscopy showed mild bronchiectasis and also some infection.

I have only just heard about pulmonary rehab and i tend to ask my pulmy or ENT at home about that. Thanks for that input. It will keep it foremost in my mind.

[BookNut]

I want to once again express to you how important that it is for you to help the drs. office fight for these tests to be done. Your insurance company doesn't want to have to pay for anything if they aren't forced to. I suggest that you spend your time calling them every day maybe even twice a day. You need to be in contact with your nurse manager at the insurance company and raise hell with them. You are the insured, you have paid for your policy, so they are working for you. Yes the office's can screw up pretty good sometimes, but They deal with 1000's of patients and probably 100's of different ins. companies, with a lot of different loop holes to jump thru. If you want answer to your illness sometimes you have to take the bull by the horn and go to the one not complying. I worked in the insurance billing field and own a billing company for over 32 years, so I know all the tricks the insurance companies pull to get out of paying for something that the policyholder needs. There were a certain % of claims that the policyholder always needed to fight the company to get paid. They will do more for the policyholder than the will the office. I'm just say'n get strongly involved with the approval process, with your insurance company. Best of luck to you!

Thank you! My husband used to work in auto insurance claims, so he often works with the company on my behalf. We have never had any difficulty with getting coverage for tests before...even CTscans, so this was a real surprise. I think the doctor's office is at fault here. The doctor apologized for the first mess up and said that the requests for coverage are usually "pro forma" but he would be sure to make the next requests more complete. Well...the next time the insurance company denied the CT because there was not enough detail about my condition, and they never sent the request for the methacholine challenge test at all. I have called the secretary, the physician's assistant, and the financial secretary multiple times. They almost never answer, so I leave messages. No one has EVER returned one of my messages, or called on the day they promised they would. I am generally a pleasant person and have endeavored to keep my messages pleasant but to the point. I certainly hate to let the insurance company "win", but if they are not receiving the information they require from the doctor's office, they might not be to blame. I feel as if I am caught in an endless bureaucratic loop.

So, I will see what happens tomorrow and the next day. If I get nowhere, I will send another email to the doctor to let him know what is going on. If I get no help from him ( he never answered my last email) I will give the whole thing up. I have good doctors at home and there are a few more things that I think might work....pulmonary rehab as suggested in another post, an old fashioned med called Thyophyline, sinus surgery, or a scary drug called Xolair.

[BookNut]

OK...Still whirling round the rabbit hole. I was promised a call back AGAIN by last Friday or this Monday at the latest. Here it is Tuesday, and (as always) I have to call them back to find out what the H3!! is going on. The secretary, who seemed so empathetic when I first called her, tried to pawn me off on the financial person yet again. She came back to me to let me know that the financial secretary had her voicemail on...but she would get back to me. That is when I let her have it with both barrels. I said NO ONE, except the PA has EVER returned a single one of my messages. I have been on hold with this situation for 9 weeks now. I need something done NOW. "Yes, you certainly do. I will go find financial right now while you are holding. I hope I am not one of the ones who has never called back." I told her that yes she was. TWICE she told me she would be back with me on a Friday or a Monday. Both times, I have had to call her back. "Oh Mrs. Henry, I am sorry. I will get it taken care of immediately". So - the current situation is that they are "expediting" the request for both tests, but "unfortunately it will take 3-5 days to get it". So - we have been on the phone with insurance every day, bugging them about it. We don't know what else to do. I have told them that we MUST go back to NY next weekend - so they have until the 26th to get me the tests and another appt with the doctor to discuss.

Tune in tomorrow - but don't hold your breathe!! Double GRRRRRR.... DO YOUR JOBS CLEVELAND CLINIC!!

[annekat]

Right on, Jacquie! I hope for the best from now on. It is a shame they make people resort to the "double barrel" tactics before they will conduct business in a professional way. I hope this does not speak for the entire Cleveland Clinic. And your insurance company does not seem blameless, either.

[godgirl]

Hey, Jacquie, check this link out.

Patient Experience Programs and Services | Cleveland Clinic (http://my.clevelandclinic.org/patients-visitors/patient-experience/programs-services/default.aspx)

Click on the plus sign to the right of "Patient Concerns: Ombudsman Office". This might get some attention...

Jen

[BookNut]

Hey, Jacquie, check this link out.

Patient Experience Programs and Services | Cleveland Clinic (http://my.clevelandclinic.org/patients-visitors/patient-experience/programs-services/default.aspx)

Click on the plus sign to the right of "Patient Concerns: Ombudsman Office". This might get some attention...

Jen

OMG. Thank you SO much! This might definitely come in handy.

It looks like I have finally gotten their attention. I have received 2 call backs since my call this morning. One from the financial person to let me know that she had just faxed in the new request for the CT and that she had spoken with the insurance company who said the approval should be received in 72 hours max. I also found out from her that the methacholine challenge test does NOT require pre-approval. So, I COULD HAVE TAKEN THAT TEST BACK WHEN IT WAS ORIGINALLY SCHEDULED ON AUGUST 27. That was the test where I had to be off two of my asthma meds for 4 days, and off symbicort for 24 hours and my nebulizer of 12 hours. That led to a night where I got no sleep because I was wheezing and short of breath all night and unable to lie down. Now I have to go through all that again. However, at least I feel like I am moving ahead. I am awaiting a call from the secretary to find out if she can schedule me for the methacholine challenge test on Friday and also schedule me for the CT scan, in case the approval is received by then.

I feel that FINALLY the fire has been lit. But if they send me down the rabbit hole again, I will definitely make use of this information! This forum is awesome to the power of 100!!!

[BookNut]

I have received EIGHT phone calls in two days. Amazing! Plus my hubby reaming out the insurance agency got the CT scan approved in 24 hours instead of 72. So, I am scheduled for a CT and two other tests for Friday. AND the doctor is phoning me on Monday morning at 8, and will be squeezing me into the schedule sometime next week. So....they are definitely capable of moving quickly! Thanks for your support!

[annekat]

Oh, Jacquie, this is great! It is just a shame, though, that they had to put you through all that stress and uncertainty all this time and that it was up to YOU to be aggressive and proactive in order to get things taken care of in any semblance of a professional way! It pisses me off!
And kudos to your hubby for straightening out the insurance company. Not approving a CT scan when ordered by a highly reputable Doc at the Cleveland Clinic is just lame. Best of luck from now on with this, and I hope you get some answers and better solutions to your breathing problems.

[drz]

The biggest puzzle has been the fact that my lung function tests are pretty good. I think if I could do a test after doing some exercise it might change the picture a little. My asthma doctor bugged my pulmy about doing a bronchoscopy. At our first meeting he looked at the lung function test and my records and said that he really did not see a need for it. Then he listened to my lungs for a minute and said "When do you want to schedule the bronchoscopy?" The bronchoscopy showed mild bronchiectasis and also some infection.

I have only just heard about pulmonary rehab and i tend to ask my pulmy or ENT at home about that. Thanks for that input. It will keep it foremost in my mind.

The pulmonary rehab will have you do exercises under supervision so any problems in your breathing or heart rate are noted and recorded in their records.

[BookNut]

Well after struggling to get a chest CT, methacholine challenge test and a nitrate oxide exhalation test it is mostly not to happen. It WAS scheduled for tomorrow. However, going of the meds as directed put me in a full blown gasping asthma attack. My family had to call the ambulance and I am now in Mercy Hospital for at least overnight. I SO wanted that test in hopes we could determine if it is real asthma or one of several conditions that mimic asthma.


So....I am feeling better but really sore. Hopefully I will get an appt with the doctor next week. The up side is that at least they did a chest ct here in the hospital.!


Hopefully I will feel better and not be in here very long. I just hope I can get some sleep!! HaHa. Hospitals are not known for promoting good sleep!

[annekat]

Oh, for Pete's sake! I'm so sorry it worked out that way. It must have been very scary suffering that asthma attack! At least now they know you really have a problem despite all the times you "seem OK" while in the docs' examining rooms. And the insurance company should feel properly chastised! I'm glad you got the CT scan, as something really does not seem right and they need to get to the bottom of this. My mother had terrible asthma from chemical sensitivities acquired at a workplace, and I don't know if anyone really ever understood what was going on. I hope today's medicine has better tools and knowledge for finding that out. I look forward to hearing how it goes with the lung doc next week.

[BookNut]

It just gets worse.

The good news is I am feeling better. Saw the staff Pulmonologist today. What an ass!

In a five minute listen to my lungs and history he decided I do not have asthma and I should go off all my meds and learn how to relax and I would be able to breathe normally. So I guess I will just take yoga lessons and forget my meds. He also said that I was clenching my vocal cords when I breathed out to make it seem like I was wheezing. In other words, I am faking it. He then had one of his staff of therapists measure my peak flow. It measured 175. She told me that Dr. Asshole had told her to set me up for release if it measured 300. I'm sure he thinks that I somehow am faking that. Again....what an asshole!


I hope to see Dr Culver at the Cleveland Clinic. Either at an office visit or a transfer from this hospital to the clinic.


The ct scan indicated enlarged lymph nodes which the PA in the emergency dept told us should be biopsied. She said my blood tests were all good making anything really serious unlikely, but a biopsy might indicate what is going on with my lungs.

[annekat]

OMG. I thought I had already met the pulmonologist from hell, but this guy sounds much worse. Yeah, right, someone would fake having asthma. Is he not aware of what happened when you stopped your meds, and how you ended up in his hospital? What is with some doctors these days, anyway? Sheesh. I hope you do get to see Dr. Culver next week and he listens thoughtfully to everything you have gone through recently. Good luck!

Also, about the CT scan and the lymph nodes..... hmm.... count on a PA to really say something helpful and realistic. I sure hope she is right that it is not likely to be anything serious and that it could provide some answers about your lungs.

[BookNut]

Thanks Anne. I will know more on Monday. Hope I can get some sleep with 40 mg three times a day. If I get bored I will just practice new techniques to fake wheezing. A skill everyone should know if they want to have a restful visit at the hospital spa!

[annekat]

That much pred? Wow. I hope you can somehow get some sleep.

[me2]

Jacquie,
I'm sorry you are in the wringer lately. Unfortunately I can relate to some of the treatment you are getting. Not just from doctors. A few years ago I was very, very ill with Wg and things were not working. So my doc was putting me in the hospital to get IVIG treatment. As I was getting ready to go to this hospital 100 miles away from home to get treatment to try and save my life my 'girlfriend' says "Oh, that will be a nice break for you". As if I were going to some Hollywood spa to get a facials and mud baths. It boggles the mind. She didn't say "Oh my god I'm worried about you." "This treatment sounds scary, I want to come up and be with you"-- no, 'nice break for you'.

So now I know that if I ever want to take up recreational wheezing I have someone who can teach me!! Good lord. Hang in there Jacquie. You are doing an amazing job of navigating this.

[godgirl]

What. The. HECK? Completely unacceptable! I am speechless.

Forget the wheezing. I want to know how you are faking the lymph nodes being swollen. That is a FANTASTIC talent. Can you teach me? Would yoga help with that?

In all seriousness, this really is unacceptable. I hope that doc doesn't kill someone someday.

And most importantly, I am so sorry you have to go through all this, Jacquie. I'm praying for you!

Jen

[BookNut]

Anne, Jen and Me2. Thanks for sharing. Anne, I actually slept 6hours! And thanks folks for making me laugh. Recreational wheezing and faking enlarged lymph nodes indeed. I am impressed with myself. I thought everyone had this skill! And some "girlfriends" need to be downgraded to the 'clueless idiot I know" category!

i would love to hear more about IVIG treatments as my allergist is looking at that for me. Dr Culver is looking at Pulmonary Fibrosis is a scary diagnosis. Research has also brought sarcoidosis to my attention. That can lead to PF and is much less serious than PF. My hope is that it might be sarcoidosis or a very mild case if PF that Treatment will keep from getting worse.

A different pulmy came came to see me today. He understood the situation. I will probably be released tomorrow. From there I hope to have some productive meetings with Dr Culver.

Thanks again my friends!

[BookNut]

I got sprung today!! The GOOD plumy came in, expecting to release me. My chest and breathing tightness had improved. By that i mean I was back to my chronic deep cough and loud rhoncorous wheeze, instead of the strained cough and high pitched wheeze I came in with. I always have a wheeze and a cough but the kind I had today gets me more air and less shortness of breath. So - whenever I am like that, I consider it a very good day. He did not consider it a good day at all, and he said I was worse and should stay at least one more day. I told him that if he expected me to get any better than I am today, he might as well hire me on as hospital staff, since I have had some sort of cough and wheeze every day for the past three years. So - he let me go home with the promise that I would see Dr. Culver immediately. Easier said than done, thought I. He is SUPPOSED to call me tomorrow morning at 8. I have my questions all lined up for him. I want to get these lymph nodes biopsied ASAP. Hopefully we can schedule that a little more smoothly than the other appts I have been trying to get.

So - off to bed with me. Phil and Alysia are constantly on my mind. I so hope a miracle will happen soon My prayers are with those two brave people!

[BookNut]

Had my phone consult this morning. Dr. Culver wants to see CT and hospital records before he decides where to go. I got a copy of the CT before I left the hospital, so my wonderful daughter drove over an hour to drop it off right at his desk in the facility he is in today. We figured, with our luck, it would get lost if we overnighted it via the post office!

He did say that he will likely want to biopsy the enlarged lymph nodes that showed up on the CT. I feel like progress is being made. I also was happy to get 4 hours of sleep last night and a 2 hour nap today.

As always - thanks for the support. Still checking on Phil and Alysia multiple times a day.

[annekat]

That's great, Jacquie! Dr. Culver sounds pretty good, once you've gotten past all the red tape involved in actually getting to see him! This does sound like progress. And your daughter is an angel for making that drive! And you got to be in charge of the baby while she was gone. I hope someone is holding down the fort for you at home in NY!

[Psyborg]

I hope he's able to figure something out for you Jacquie!

[BookNut]

The latest update. My appointment is done. I was NOT able to do the methacholine challenge test. Being off my meds ruined my breathing again. They have a bottom line lung capacity level and will not do the test if you fall below that line. Mainly because the test involves having you inhale a substance that might irritate your airways. I tried the lung capacity test 4 times and was not able to come close to the bottom line. So - all of this time has been for nothing. Three 4-day periods off my meds and feeling miserable, one hospitalization, and one more aborted try. SO FRUSTRATING. The doctor even told me to stay on one of my meds longer than the ideal, and I still was not able to make it. Even though I did virtually no walking. Bob and Kristin took turns pushing me in a wheel chair and pushing Lila in her carriage, thinking that if I didn’t walk it would save my breath. All for nothing. We were able to complete one small test which showed I had a high level of inflammation in my airways. No kidding. I don’t know if I will come back for the follow up appt. on Nov. 5 We will see.


We are planning to leave Sunday. I need tomorrow to gain back my strength and rest up. I will make appts with my doctors at home to discuss all this. There are a two different meds I could try before I am forced into long term prednisone. That is what I have been trying to avoid. As soon as I go on it, my sugar level jumps way up. It jumped from 100 to 250 overnight after my large doses of prednisone in the hospital.

The upside was a wonderful technician. If anyone could have coached me through the test, it would have been her.

The doctor appt I have in Nov. is with a different doctor. I believe Dr. Culver is passing me on to someone else. Not sure if I have the heart to bother....

[annekat]

Thanks for the update, Jacquie. I don't know what to say. It should be obvious to everyone that you are not "faking it"... although I'm forgetting some of the circumstances of that episode... I know you were at a different hospital and not the CC. It is disturbing that they cannot figure out the root of your problem and you might have to go on long term pred. I'm sorry things didn't go better. I wonder if any other well known lung docs that we have heard of could figure it out.

At least I'm glad you get to go home. But not for long, if you are returning in November. There is always the saving grace of Kristin and Lila! I wonder who the doc is he is passing you on to and if he is any good. Will be thinking of you and hoping for the best!

[Velma]

It is a sad side effect of having this disease that we have to be super organized, think two steps ahead of everyone else, and fight like hell to get someone to listen to us, all the while checking and re-checking the details. I am sorry if I am bothering you.. lady in the dr office.. but this is my life and I want to be sure you are doing your job. I have even gone so fart to have refused to let interns touch the inside of my ears and nose as they have done more damage then help. I tell them they can look but no touching and I know I come across as a witch but it is my body and I am not their guinea pig. My kids love taking me to dr apts with them because I mean business and no one messes with me much any more. Lessons learned the hard way.

[me2]

I have been wondering how you were making out Jacquie. I was hoping for something more definitive for you. I don't understand everything you are working on but I do understand you are not satisfied with things. I would side with you.
I don't know the answer to your situation but I do know from my own experience that getting passed on to another doctor doesn't feel great but sometimes could be a good thing. Think of it like dating- you have to kiss a few frogs until you meet your 'prince'.
I put prince in quotes because your 'prince' could be a woman in today's medical world. Some of my best doctors have been women.
I don't have a proper understanding of your situation but that won't stop me from throwing around ideas. I read up a little on methacholine challenge and my imperfect understanding is this- the point of the test is to definatively diagnose asthma.
I'm guessing that the point of finding asthma is that once they know THAT they can put you treatment specific to THAT.

Well, you were not able to perform the test (which is risky) so my question would be - how risky would it be to try and treat you with asthma medication for a period of time? If you felt better then might we assume you have asthma even though you were not able to do the challenge? Or , even if you don't have asthma but you feel better isn't that worth doing to keep you from increasing your prednisone?
Not wanting to increase prednisone isn't some kind of proof you aren't sick - its proof you don't want more complications than what you already have. Any good doc will know that and encourage you to stick with that.

Please take all my ideas with the biggest grain of salt you can find. I'm not totally understanding everything but I do understand that you have not arrived at the point of diagnosis and treatment that gives you some peace of mind. I trust that feeling. Please continue to look for better answers once you are rested up.

[drz]

Thoughts from reading the above posts. The main thing I learned from almost dying from Wegs is not to settle for answers on what my symptoms are not, and to search for a doctor with more skill, motivation to help, and expertise who is willing to give the extra effort to give me a diagnosis and treatment plan that gives me peace of mind. One time after seeing two doctors for symptoms that concerned me and being told what they weren't, I told them their answers weren't good enough for me and that I needed some one with more expertise and experience to tell me what my symptoms were. So I challenged the next doctor i searched out by telling him I learned what I don't have, but now I am looking for some one with more expertise who is wiling to put in the effort to determine what i do have and what I need to do about it. He did take the time to give me an answer that satisfied me. He asked enough questions to determine what most likely caused my symptoms and reviewed my lab results to reassure me my condition seemed stable so unless the symptoms changed there was no need to do anything. But now I had peace of mind.

As for interns and residents practicing on you, it is expected in most large hospitals which are also teaching facilities. The senior residents often give you the best care since they seem more motivated and they have access to their supervisor who is usually the "expert" but some times you may get a new intern or resident with little or no experience. When I was really sick in ICU, my guardian angel questioned every one who came in to do any procedure on me. One time a new resident was going to try insert a PIC line but when my daughter found out he had never done one before she told him you are not practicing on my dad so get some one else. And he did. One time I let some one try do a blood draw since i had easy veins for getting blood and I wanted to get it done so I could go back to sleep but after three tries I told her to get some one else. She already had made that decision she said after I ask her.

It is your body and you have right to try set boundaries on what feels right for you. Being a Weggie though also means you likely to be exhibit A for a rare disease and it is helps to try educate new doctors about our disease in order to save some other Weggie years later.

[BookNut]

Thanks everyone. My doctors at home never seem satisfied that they have found a definitive answer for me. Hence Thry thought that it might be wegeners, but ultimately ruled that out.

I guess it is somewhat unusual to be fine all one's life, never smoke, be walking up to 5miles a day, and then at age 65 suddenly develop asthma. My allergist always refers to it as my asthma-like illness. I have very few, and very mild allergies to the environment, so that is also a puzzle.

The test is dangerous. They would not allow my asthmatic husband in the room while it was being done. There are many diseases where wheezing and sinusitis are symptoms. The test is best at ruling OUT asthma. I thought if they could rule it out, we could start looking at other things more seriously. I like most of my doctors, but I know they see people in worse shape than me. I also tend to see them after a round of pred when I am feeling better. But better only lasts for about two weeks wnd then I get short of breath. I can never plan, because I have at least a 50% chance of being confined to the house because I get too short of breath to get across my house without huffing and puffing. It has seriously impacted my life.

So...I thought I would try Cleveland Clinic. Me2...I have been taking asthma meds for three years. None of them keep it in good control, except prednisone which I try to avoid. I may have to go there long term, but am trying to avoid it. I don't understand my pulmonary test very well. Near as I can figure, When I am on my meds and have recently taken a pred taper, my lung capacity is about 68%. When I am off my meds as just happened, the % goes down to 50% and only goes up to 51% when They give me 4puffs of albuterol.

I take the following every day: Zyrtek, Singulair, symbicort, clarithromycin ( long term, 3 x per week) and iproprium bromide via nebulizer(DuoNeb)

I am going to start using the nebulizer at least twice a day when I am feeling good, not just when I feel I am getting bad....hoping to avoid the every three week downturn.

So....I will try the other alternatives that have been suggested and hope for the best. Maybe my doctors will have more to say based on the tests I have been able to complete. Here's hoping!

[Jaha]

If the doctor that you are getting passed off to is Dr. Bohdan Pichurko, myself I would keep that appointment. He is an expert in COPD and has practiced at 4 other major Medical Centers. I have both Wegs and COPD and it was a mistake that I got in with him, instead of my regular pulmy I see there, really turned out to be a blessing. I asked him which was going to kill me 1st and he explained to me about how they can tell whether it is my wegs acting up or the COPD. I had been put on 3 inhalers and he took me off one of them because it dried up my air ways. It is really important to have moister in the air of your home. I don't know why Culver would pass you on, except that he might think that there is someone whom might be able to better help your case. Best of luck to you.

[Debbie C]

After my last visit to my pulmy,I don't know if I have copd or asthma. I know ever since I have come back from Fl. I have felt like crap. I have been given inhalers and puffers and a neublizer machine but I don't use any of them,I don't want to become dependent on them thats why I do yoga ( to help with the breathing ) and walking.
I just got a letter that my rheumy at Cleveland is retiring next month so I need to switch to another one. Maybe I should see about that Dr.Pichurko you mentioned. I just got my bloodwork back and my sed rate is 30. I don't know why it keeps going up:sad:. Jana how can they tell if it is wg or copd ? Have you made an appt. yet to go up?

[Jaha]

Deb,
My next apt is for Oct 27th to have a rtx infusion. He told me that a PFT is a very accurate test for COPD. He also said that even if my pulse ox was showing in the med 90's that you also have to take in acct for the CO2 levels, they could be bad and that would cause bad breathing problems. As far as the CT Scans Wegs shows up differently on them then COPD, it has to do with the tissue and little air pockets or blebs with COPD, where wegs is more nodules and necrosis or decaying tissue. I thnk that he would be a very good choice for you Deb.

[BookNut]

Deb and Jaha...I will keep the doctor's name in case. I have been referred to a dr teliericio or something like that. I just can't return to Cleveland for awhile. Hopefully the records will help my docs at home. Having been treated so poorly here is not making me enthusiastic for a return....but even if I were thrilled with my treatment I just can't manage it at this time.

[BookNut]

If the doctor that you are getting passed off to is Dr. Bohdan Pichurko, myself I would keep that appointment. He is an expert in COPD and has practiced at 4 other major Medical Centers. I have both Wegs and COPD and it was a mistake that I got in with him, instead of my regular pulmy I see there, really turned out to be a blessing. I asked him which was going to kill me 1st and he explained to me about how they can tell whether it is my wegs acting up or the COPD. I had been put on 3 inhalers and he took me off one of them because it dried up my air ways. It is really important to have moister in the air of your home. I don't know why Culver would pass you on, except that he might think that there is someone whom might be able to better help your case. Best of luck to you.

Thanks for the suggestion....but I am pretty burned out. I had another frustrating day today calling back myself when the promised phone call never came through. I have cancelled the upcoming appt with dr. Talericio to whom i was referred and have asked for a phone consult. I don't plan to hold my breath on getting that call either. Have also asked AGAIN for Dr. Culver to call me with his ideas on the CT scan and other tests. Once I know my doctors at home have received my records, I am going to let Dr. Culver know exactly what I think of his office staff.

i spent July 19-Oct. 12 in Cleveland and only managed to accomplish 1 appointment, 1 lab test, and three aborted pulmonary tests. Of the 4 administrative staff people I dealt with, only ONE person ever returned any of my calls as they promised to do. And after all of this, I am WORSE than I was before I went.

the one bright spot of today was contacting my favorite doctor at home. It was obviously a struggle for them, but I got three call backs today to make sure that I am squeezed in for an appointment with her next week. What a contrast!!!