Serious breathing issues and lousy medical care...

[OneStepAtATime]

I may delete later.  My mom is very private.  I am worried, though, and uncertain how to proceed.  (Also, I may have misspelled some of the drugs I list in the below post.  Sorry.)

 

My mother has been suffering with breathing issues for months.  She does not smoke and never has.  She suffers from seasonal allergies.  Her local doctor treated her issues with over the counter medications at first then eventually delved deeper and determined she has asthma.  She treated her with Albuterol, a rescue inhaler containing xopenex, plus Zopenex and Advaire.  

 

When that didn't really clear things up she sent her to a pulmonologist (apparently the only one available in our area and he actually has his office over an hour away but comes here once a month).  The guy ran a slew of tests then was supposed to see her on Friday.  After waiting 4 hours past her appointment time (and the front office had already closed) he finally met with her and told her that her lungs were in terrible shape but did not tell her why, even though she asked.  He put her on Prednazone, Alegra, Flonase, Spiriva, Montoclast and seemed to indicate she should continue the previously prescribed meds as well.  She asked for a plan in writing and he told her to call back Monday.  She asked for more information and a chance to really talk over her situation but he again insisted she call Monday.  She was exhausted so she left.  

 

She called today.  Not helpful at all.  She was told by the front office today that she should just take the meds and he would see her when he returned to town in a month.  When she tried to get an appointment at his main office over an hour away she was told it would still be weeks before he could see her and she should just take the meds.  She asked for something in writing to say when to take what and why she was taking them and was told she would have to talk to the doctor when she saw him in a month.  My mom doesn't even take aspirin unless she has to because she reacts strongly to medication.  When they previously put her on steroids she had severe issues with depression and impaired cognitive function.  They know this.  She has told them several times. Some of these are powerful drugs they are prescribing and there are a LOT of them.  And she is TINY.  She is not young anymore.  She does not want to take all these medications without a plan.  

 

What says the HIVE?  Take all those meds?  Wait until she can see the doctor in a month?  Keep trying to find another doctor?

[wapiti]

IME, it can be hard to find a good doc for breathing issues.  Very few even take a glimpse at possible underlying causes.

 

I don't know much about older people and asthma, but in my way-outside-the-box thinking, late-age onset of asthma, that crept up and now has been going on for months, brings to mind questions of infection (the gamut of viral, bacterial, mycoplasma, etc.) and of immune system function, or both.  just my two cents, not that it helps...

[Joules]

Find another doctor! Not because those meds are necessarily wrong, but because she needs a doctor who has the time to develop a treatment plan and explain it. If she can't find another pulmonologist, maybe try an ENT or allergist. There is some overlap in practice.

[prairiewindmomma]

I am not a pulmonologist, nor do I play one on tv....but my kids and I have taken all of those drugs at one point or another for various reasons.

1. What were her spirometer readings saying?

2. What is her diagnosis?

 

I'm going to break these down by function to help you understand them

 

allergy medicines: allegra & flonase--I have no problems with those, other than I have to use Zyrtec because Allegra does nothing for me.

asthma preventative medicines: Advair (which is combined with long lasting albuterol)--I have no problem with this either and it's good advice

bronchiodialators: albuterol, xoponex, spiriva---those are some heavy hitting drugs. I don't doubt that she needs something from this class, but some helpful advice on what to use when would help. At her age and fragility, just overuse of albuterol can be a problem. 

anti-inflammatories: montelukast (which blocks leukotriene) and predinosone (which is a corticosteroid)--Again, she likely needs something from this class, but that's a lot to mess with.

 

I'd keep on looking for another doctor given her issues with medicine....not that she may not need those, but she needs some guidance and an action plan.  Does she have a living spouse or someone who can help monitor her?

[prairiewindmomma]

At minimum, she needs a peak flow meter to chart her breathing and a thorough ruling out of other issues as well.

 

And, because she is elderly and fragile---how clean is her house? We had some breathing issues resolve in elderly family members when they were moved out of their home into a cleaner and less cluttery place. The dementia had made keeping the house too challenging.

[Arcadia]

My mom had asthma due to work conditions (dirty air-con vent right above her nurse station) and had lung scarring due to her asthma not being monitored well.

 

I had asthma both pre-teen and when I was 22. Both times heavily monitored and my lung xrays were good when taken for TB screening when I was 31.

 

My mom has rheumatoid arthritis and she does not react well to steriods and medication in general. She has frequent checkups and blood draws every time they change her medication just in case. My mom is 5"2' and less than 110lbs with blood pressure on the low side of norm.

 

I'll find another doctor.

 

I have seasonal allergies and taking long term allergy medicines have make me immune to most medicines. Now I just live with the allergies rather than medicate.

 

ETA:

I am allergic to prednisolone and also react to penicillin. I'll be wary of trying out drugs without medical supervision.

Edited February 15, 2016 by Arcadia

[prairiewindmomma]

FWIW, the spiriva makes me think COPD is a possibility. Spiriva is rarely used outside of moderate to severe COPD.  My kids have taken ipratopium bromide which is a kissing cousin to tiotropium bromide when albuterol was causing them to have tachycardia.

[wapiti]

The more I think about it, something isn't adding up.  How much prednisone was she prescribed, a 5-day course or something else?  That may be to tamp things down to a cleaner slate. (BTDT.)  But, I'd wait until finishing that to add back in the Advair (by the way, my ds can't take this due to it causing him major, major insomnia).

 

For that many prescriptions, I would expect the patient to be quite severe.

 

Why not try the Flonase for a few weeks first before adding Allegra, for example, for the upper respiratory angle.

 

And don't albuterol and xopenex perform the same function?  That should be on an as-needed basis unless she has a cold or is always wheezing.

Edited February 15, 2016 by wapiti

[OneStepAtATime]

For clarification, the appointment on Friday was SUPPOSED to give her the details of all the zillions of tests they have run.  All results were supposed to be in and they were SUPPOSED to give her written results and a written plan of action.  She got almost no details at all except that her breathing is bad and no written plan of action at all.   She had been on antibiotics but those didn't really address her issues.  My dad is dead.  She lives alone and is very private.  She does not let me go with her to doctor's visits but I may try and insist next time.  She has cats and there is dust in the house.  The house is too big for her but she doesn't want to move because Dad died in that house.

 

She was told to take the prednizone until she saw the doctor again in a month (I guess daily?).  Some of the others are twice a day or as needed or daily, etc. but no written plan and she is very worried about combining all of these things.

[OneStepAtATime]

A good pharmacist might be able to talk to her about all the meds, and her worry about combining (a justified worry, imo)

 

Can she go back to her GP and ask the GP to contact the specialist and get a plan that way ?

 

A month taking lots of meds with no plan is wrong, and the doctor is irresponsible for  suggesting she do just that.

I will suggest she return to her GP and talk to her pharmacist.  The GP isn't bad.  She only works 2 days a week, so it is hard to get in and she is always rushed, but Mom likes her.

[OneStepAtATime]

Thanks so much for all of your responses.  I am out of my depth here.  My mom is an awesome human being and I hate to see her suffer and I worry about her health.  I very much appreciate the feedback.

[melmichigan]

That is a lot of medication to add, all at the same time, for an elderly person.  I would have serious concerns about this specialist.  I would recommend she contact her general practitioner at the earliest possible time.  Have the GP call over and get the notes from the specialist, along with the test results.  The GP can then review the plan with your mother.  

 

I would see if your mother would be open to help with cleaning the house? 

Edited February 16, 2016 by melmichigan

[TravelingChris]

I take spiriva and I have just asthma, not COPD,  It is used for asthma too just not advertised that way.  I specifically asked my pulmonologist about this since I was afraid that he was saying I had COPD.  No, I just have bad asthma which is kept under control with montekulast, advair, two nasal sprays and spiriva when I am having worse breathing problems.  And of course, I have albuterol for short term bad breathing issues,

[blondeviolin]

Spirits can be indicated in asthma. It's an awesome drug. But, yeah, I would assume with all of those meds, her spirometry was probably crud. I would have her take the prednisone because it really can help. A lot. If she's had a history of seasonal allergies, I'd keep up with the Flonase and Allegra. If not, I wouldn't worry about taking them as much as the inhaled medication as well as the oral steroids.

 

I will also say that some of us will never have full lung function. And that's sad.

 

My disclaimer, though: I'm not a pulmo or allergist. Just a fellow severe asthmatic.

[PinkyandtheBrains.]

While the doctors office cannot give you her medical information, you can call and complain and ask they clearly identify and write out the information needed for your mother.

 

 

 

I'm surprised they were so uncommunicative. I'd try and go with her to a new appointment, if possible.

[NoPlaceLikeHome]

I would probably take the meds since from what I know if she has severe problems I don't think they would be unreasonable. I would want to discuss with pharacist in the meantime to make sure she knows how to take these meds and to review everything the doctor ordered. The only thing I wonder is how much prednisone is ordered? Some people do need daily but often nowadays they will prescribe short term bursts of prednisone to get someone's breathing under control for about 5 days to even up to 8 weeks or so. However, there is a lot of evidence that 5 day courses of Prednisone may be effective for a lot of these patients from what little I understand but there may be reasons why she may be on a longer course. Plus I am not a doctor. I would hope that next time they give a list of all her meds with instructions as well as diagnosis and results of any tests such as PFTs.

[NoPlaceLikeHome]

I forgot to add that albulterol and xopenex are for all practical purposes the same drug so one would not normally be on both. Also, does she have a spacer to use with the inhalers and was she properly instructed on how to use the inhalers and spacer since technique is very important to ensure adequate drug delivery. Also, it is essentially to clean the inhaler holders at least once a week. I also hope the inhalers have counters on them so that she can tell whether there are drugs still in them.

 

 

Also, if she is using the advair discus, it is important to follow the instructions on how to use as well such as keeping the discus in horizontal position when using so that drug does not fall out of the dispenser.

 

Also, having a nebulizer on hand may be good as well since sometimes a nebulizer is more beneficial but not always.

 

I would also ask to make sure she does not have acid reflux which can exacerbate breathing problems. She may need prilosec. My doctor put me on it and it did help. Currently I am not on it but I was on it for quite a while.

 

Lastly, if she has a lot of mucus, plain mucinex with just guianefesin (sp?) is very safe and does help. Sjhe should check with her doctor. Also, ask if the acapella device would be useful for her and whether should should use green or blue one. The doctor could order this. for her. It helps to keep airways clear of mucus.

 

Also, ask about pulomonary rehab.
 

[Harriet Vane]

The others have given good advice here, so I will just reiterate here:

 

Fire the doctor. His behavior and that of his office is irresponsible and unethical.

 

A four-hour wait for an appointment is unacceptable.

 

A lack of diagnosis or written plan for something so complicated is unacceptable. And frankly, dangerous.

 

 

 

Like your mother, I am someone who also reacts badly to medications. If there is a weird side effect, I am the one patient who will experience it. I take medicine only as a last resort, and I usually take child-sized dosages. I actually believe in the miracle of medical science, but I personally do not seem to tolerate medications very well. I would be concerned about the effects of ONE extra medicine. If a doctor had the nerve to prescribe a cocktail like that without a full discussion on WHY and possible side effects, I would seriously go postal on him. It's quite possible that with significant breathing issues your mother may truly need all that stuff, but as she is the one who has to live with the medications, she fully deserves complete information.

[NoPlaceLikeHome]

Honestly I would not fire the doctor if he was the only one available since what he ordered seems like it might be reasonable. Now if you can find another that is great. In the mean time talk to the pharmacist since they are very knowledgeable in drugs. Does that doctor have a nurse to speak to since the folks who answer the phone may not be nurses and you often have to ask to speak to the nurse.

 

Also, webmd.com is very useful for medical info. As far as the drugs, if she has severe and even not so severe breathing problems, medications can be a godsend to at least help somewhat improve the situation. Also, keep in mind that every drug out there including many with decades of safe use have long laundry lists of potential side effects that usually don't occur so I would not be afraid of possible side effects but be aware and talk to pharmacist and doctor. She could also see her primary doctor and discuss what he ordered.

[SebastianCat]

My MIL had pulmonary fibrosis, and having a good pulmonologist was HUGE for her.   I echo others' recommendations to look for a new doctor, even if you have to travel several hours for the appointment.    At one point in her treatment, MIL traveled 2-3 hours to a teaching hospital for a consultation from a very well-known pulmonologist, and it was very encouraging for her to hear the same treatment plan from him that she had received from her main pulmonary doctor.

 

Also, you need to have a serious discussion with your mom about giving someone (you?) medical power of attorney to make medical decisions on her behalf if she no longer can.    And have her fill out the Hippa forms at every doctor to allow them to discuss her medical situation with you.   I would insist on attending the next appointment with her, and bring a list of written questions.   Write down all of the answers, and don't leave the office until you have a written treatment plan.   

 

In the meantime, seeing her GP (and even requesting an appointment with extra time, since she's typically rushed) sounds like a good idea to get things clarified.    Again, I would attend the appointment with her, write down instructions and answers to questions, and make sure she's indicated on the Hippa forms that they can discuss with you.

[jelbe5]

I have had asthma all my life and have never taken that much medication at one time.

 

The specialist is unprofessional. He needs to make time to speak with his patients. I agree with others to find another specialist or at least get a second opinion.

 

Prednisone reduces inflammation and can work miracles but can have very, very serious side effects. I'm concerned that the specialist just put her on Prednisone for a month. I wonder what the dosage is? It is not uncommon to prescribe a taper-down prescription where the patient begins at a higher dose and slowly weans down until he or she stops the medication altogether. Side effects include weight gain, sleep disturbances, mania and then depression. I have to be very careful when I take prednisone for my asthma (not very often) because I am very sensitive to it.

 

Do have her talk to her GP. She needs answers and information.

[Pippen]

I wouldn't fire the doctor until she's been seen by another pulmonologist. Specialists in some areas can take months to get into, so don't burn any bridges.

 

I agree that she should schedule with her primary care doctor immediately to get a review of the meds, and also a written plan of how to schedule those out. She also needs to be told exactly what symptoms constitute an emergency. Her PCP  may be able to get the answers and copies of test results that she should have in hand now. 

 

In most practices the doctor (or perhaps a nurse practitioner) would do the exam, review the tests, and do the prescribing, but it would be a nurse or nurse practitioner that would sit down with the patient and instruct them how to use the meds, and also to give them a written plan. If your mom has been pushing to see the doctor immediately for followup, that may be why they're putting her off. 

 

When it comes to asthma and COPD it's common to be on many meds up front, and then reduce them as the patient improves. This is totally normal. The idea is to tackle the problems from many angles with medications that work in different ways. It's counter-intuitive to the inclination most of us have to take as few medications as possible to get the job done, but I get it now. I let my asthma get away from me once, and it wound up requiring many more meds for a longer period than if I'd just medicated up front. No when it comes to asthma, my philosophy is to "drug early, drug often" at the first sign of symptoms.  

 

Steroids are a critical part of a treatment plan to reduce inflammation. I'm very surprised that her doctor didn't suggest a steroid inhaler for her (ie Flonase) long before it reached the point of her needing a referral. 

 

My one question about her drug list has already been mentioned, and that is unless the practice has changed, it's not usual to be on both Albuterol and Zoponex at the same time, unless one is for ongoing treatment and the other is used only as a rescue inhaler.

 

And also as previously mentioned, do make sure that reflux has been ruled out as a root cause. 

Edited February 16, 2016 by Pippen

[OneStepAtATime]

Thanks everyone for responding.  Mom is going to go by that office to try and pick up a copy of her test results then go see her GP.  I told her I would go with her but she said she would prefer to go on her own (did I mention she is extremely private?).  I couldn't convince her otherwise but she promised she would write everything down and talk with me afterwards.

 

For additional info since people were asking about acid reflux, she has acid reflux but they had to take her off of Prilosec because of pressure in her eye?  She had to take some sort of steroid eye drop and it made her totally loopy.  

 

She has cholesterol issues as well, even though she eats an extremely careful diet and has since breast cancer nearly 20 years ago.  I don't think she is currently taking meds for this.  

 

She also has Hashimoto's Disease (for maybe 3 decades).  She is on thyroid replacement meds.  

 

She exercises daily and as I said she eats VERY carefully but genetically she has some strikes against her.  

 

She is really short and thin.  She has always been very reactive to any medication so taking lots of meds scares her.  She has had some serious, unexpected side effects to meds in the past and also to some of the meds the GP prescribed for her for this issue.  

 

I honestly don't think ANYONE has really given her a detailed run down of how to take any of her meds and nothing has been in writing.  That was why she had told the office of the pulmonoligist when they scheduled her appointment Friday to review all the test results that she wanted everything, including a plan for her meds, in writing and for someone to review it with her.  They told her on the phone she would get it.  She did not.  She waited 4 hours to be seen, got a rushed visit with the doctor and a brush off, except for the really helpful statement that her test results were poor and her lungs were in bad shape.  When she tried to press for details and a written report they said call back Monday and it would be taken care of.  When she called back Monday she got the brush off and was told to just take the meds and see the doc in a month.

 

Anyway, thanks again for the feedback.  I really appreciate the support.  Mom hopefully will call soon with what happened.

 

Unfortunately, good medical care here is shaky at best.  

[NoPlaceLikeHome]

When she gets the test results I would also ask for her chart or notes from the lung doctor so she can she the diagnoses and prognoses and plan. She should keep a copy for own records and give a copy to her primary doctor (they can just scan or copy them).

 

As for the reflux there may be alternate meds she can use. I would want to check this since refulx xan definitely aggravate breathing problems. 

 

I would also ask about assessing for any possible sleep apnea because untreated sleep apnea can worsen breathing problems in COPD and asthma. Skinny people can have severe sleep apnea too, Possible signs of sleep apea  are fatigue, snoring, waking up with a dry mouth and others. CPAP  for my sleep apnea definitely improved my breathing overall.

[melmichigan]

Please be sure that your mother has a peak flow meter, is using it, and is recording her measurements.  That is the first step in an effective asthma plan, and sadly often overlooked with elderly that are perfectly capable of doing so.  Then she should have a documented plan of when to take medications based on those numbers.

 

Prilosec can increase ocular pressure, but there are other meds that don't have the same side effect that can be beneficial in treating reflux.  

[Carol in Cal.]

You have gotten very good advice here.

 

I want to emphasize something.  With asthma you take more meds at the outset to knock down the tendency for it, and then taper off of them.  This may be too much medication for her, but in general that's the strategy.  You have to get rid of the contributors to it--mucus, inflammation, allergies, reflux--all at once to be able to get it under control.

 

In addition to the good info here, I would suggest that one thing that would help a great deal if she is unwilling to give up her cat is to keep it out of her bedroom, and make that an allergen free zone.  That means hard floors that are wet mopped a couple of times a week, bedding that is washed in hot water weekly, no cats, no smoke, no other animals, and maybe a HEPA air filter running at night.  Additionally, to control the reflux which is a big trigger, the head of the bed should be elevated, she shouldn't allow herself to get overfull, and she should try to avoid eating within a couple of hours of lying down.  She should never sleep on her stomach, and sleeping on her left side is preferable to sleeping on her right, with sleeping on her back the best for most people, if possible.   Also, she can make tea from fresh ginger and drink it several times daily--that reduces the stomach inflammation that contributes to reflux.  These actions would reduce the allergy and reflux contribution to her problems, and hopefully mean that she could wean off of some of the meds.

[Reefgazer]

I would try to  find another doctor.  A doctor who does not want to discuss why meds are prescribed, how much to take, and their potential side effects, is a big red flag for me. 

I may delete later.  My mom is very private.  I am worried, though, and uncertain how to proceed.  (Also, I may have misspelled some of the drugs I list in the below post.  Sorry.)

 

My mother has been suffering with breathing issues for months.  She does not smoke and never has.  She suffers from seasonal allergies.  Her local doctor treated her issues with over the counter medications at first then eventually delved deeper and determined she has asthma.  She treated her with Albuterol, a rescue inhaler containing xopenex, plus Zopenex and Advaire.  

 

When that didn't really clear things up she sent her to a pulmonologist (apparently the only one available in our area and he actually has his office over an hour away but comes here once a month).  The guy ran a slew of tests then was supposed to see her on Friday.  After waiting 4 hours past her appointment time (and the front office had already closed) he finally met with her and told her that her lungs were in terrible shape but did not tell her why, even though she asked.  He put her on Prednazone, Alegra, Flonase, Spiriva, Montoclast and seemed to indicate she should continue the previously prescribed meds as well.  She asked for a plan in writing and he told her to call back Monday.  She asked for more information and a chance to really talk over her situation but he again insisted she call Monday.  She was exhausted so she left.  

 

She called today.  Not helpful at all.  She was told by the front office today that she should just take the meds and he would see her when he returned to town in a month.  When she tried to get an appointment at his main office over an hour away she was told it would still be weeks before he could see her and she should just take the meds.  She asked for something in writing to say when to take what and why she was taking them and was told she would have to talk to the doctor when she saw him in a month.  My mom doesn't even take aspirin unless she has to because she reacts strongly to medication.  When they previously put her on steroids she had severe issues with depression and impaired cognitive function.  They know this.  She has told them several times. Some of these are powerful drugs they are prescribing and there are a LOT of them.  And she is TINY.  She is not young anymore.  She does not want to take all these medications without a plan.  

 

What says the HIVE?  Take all those meds?  Wait until she can see the doctor in a month?  Keep trying to find another doctor?

 

[Katy]

nm

Edited July 22, 2016 by Katy

[Tree Frog]

Gently asking only because I've seen it in my MIL. Is your mom at all forgetful or easily disoriented? Is it possible the doctor gave her his explanation in a way that made sense to him, but sounded like gobbledygook to her? I know she should have received something written, but it's easy to forget or not understand what is being prescribed when the dr is rushed and the patient doesn't understand a lot of medical stuff.

 

Also, I wonder if she would be able to receive written instructions if she asked the office manager or one of the nurses instead of the doctor to help. I've been known to call an office, state my problem, and ask who there could help me. Sometimes the person who solves my issue is not the person I was expecting.

 

I hope she is able to get the information she needs today!

[OneStepAtATime]

She got her results from the office and will take everything to her GP on Thursday.  Thanks everyone for the support.  I have been conveying info to her as we talk.

[Insertcreativenamehere]

 

 

My one question about her drug list has already been mentioned, and that is unless the practice has changed, it's not usual to be on both Albuterol and Zoponex at the same time, unless one is for ongoing treatment and the other is used only as a rescue inhaler.

Xopanex and Albuterol are very similar chemically with Xopanex having additional ingredients to alleviate the high heart rate that sometimes occurs with Albuterol. I can't see how it makes any sense to be on both at the same time. I'd think that it could actually be dangerous. Definitely check with a GP or pharmacist if the pulm is unresponsive!

[melmichigan]

In all honesty, I'm surprised your mother wasn't simply put on nebulizer treatments.  It's neither here nor there now, but nebulizer treatments with inhaled steroids cut down on the overall steroid load and decreased the need for additional long-acting bronchodilators.  So for instance, I take Pulmicort, which is my steroid, which also covers me for sinus by exhaling through my nose, so I rarely need Nasonex, (similar to Flonase as both are nasal steroids).  Just something to file away OP.  I keep my steroid load to a minimum so as to have minimal impact on my blood sugar levels.

 

Your mother is on a lot of bronchodilators.  I would seek clarification because you usually don't use a short acting bronchodilator, such as albuterol or xopanex with long acting bronchodilator, which are in advair and spiriva, unless you are in a rescue situation.  

 

If your mother has glaucoma, increase pressure in her eye, she definitely needs to bring these meds to the attention of her GP and her eye doctor so that they can continue to monitor the situation.  

Edited February 17, 2016 by melmichigan

[melmichigan]

Xopanex and Albuterol are very similar chemically with Xopanex having additional ingredients to alleviate the high heart rate that sometimes occurs with Albuterol. I can't see how it makes any sense to be on both at the same time. I'd think that it could actually be dangerous. Definitely check with a GP or pharmacist if the pulm is unresponsive!

Xopanex is the active isomer of Albuterol.  It's a component of Albuterol, not something with additional ingredients.

[trulycrabby]

I know she doesn't want you to go with her, but it sounds very much like she needs a patient advocate. My advice is to find another pulmonologist, and beg to go with her next time.

[Daria]

I wouldn't necessarily hold a 4 hour wait against a doctor, at least I'd want to give him/her a chance to explain.  But then,  I've been the parent whose child caused a multi hour backlog in the pediatrician's waiting room, when a routine visit stopped being routine.  I've also been the parent waiting what seemed like forever, with a fretful toddler, for the ENT.  It turned out he was performing an emergency tracheotomy on a kid in ICU.  Only much much later did I find out that that kid whose life he was saving was a student of mine.

 

I also don't know how realistic it is to get a firm diagnosis on a first visit.  I know that with my son, who had breathing issues as a baby, it took some time to figure out the issue, but that didn't change the fact that he needed help now, which meant heavy duty meds.  Only over time did the underlying causes of his breathing problem become clear. 

 

I do agree that if she asked for a plan in writing, she should have received one.  I think her plan of having her GP talk her through it is a good one.  I hope the new medications work and she gets some relief.

 

 

[Katy]

nm

Edited July 22, 2016 by Katy

[OneStepAtATime]

Only have a minute but to clarify, it wasn't the first visit.  He has seen her a couple of times prior to this visit and ran a slew of additional tests and repeated some tests that the GP had run.   He also had her records from her GP and the chest x-ray the GP had done (he made her do another one but wanted the GPs xray for comparison).  He was supposed to be discussing the results of all those tests with her and give her a written plan for her meds.  He scheduled the visit on Friday specifically for that purpose.  He did neither.  He rushed her through and gave her a lot of prescriptions without any real explanation.  

 

FWIW, the Prednisone was apparently scheduled for 3 times per day, slowly tapering off over 5 full weeks.

 

I agree, there may have been a valid reason for the 4 hour wait.  Who knows?  Since he hardly spent any time with her, she didn't have a chance to find out.  The office at least gave her her records so hopefully the GP can give her a rundown of what to do right now and what the test results were showing.  

 

She does have Glaucoma, I confirmed that today.  That was why there is concern over increased pressure in the eye.  

 

I will re-read the responses in the morning when I have more time.  Thanks again for the info and support.

[OneStepAtATime]

O.k. thought I would update for anyone who might be interested.  Mom's GP said that the biggest concern for her is the eye pressure issue and Mom should go to an ophthalmologist for a second opinion on the meds that might increase eye pressure because of her glaucoma.  Her eye doctor that she has seen for years and years and knows all of her eye issues is a developmental optometrist, not an ophthalmologist, but he was the one that found her glaucoma.  He is not a normal optometrist.  She would rather go see him but I know developmental optometrists are different than ophthalmologists so I suggested she might consider going to the other type of eye doctor.  She doesn't want another doctor running all the same tests that her normal eye doctor has already run.  I guess she could go to her normal eye doctor and if he doesn't have enough background knowledge he could refer her to an ophthalmologist...  The GP didn't have a really good rec for an ophthalmologist.  She said she has one they use but only because he is close by.  The GP also seemed really reluctant to say anything regarding the meds the pulmonologist prescribed, except to say that Mom needed to get her eye doctor involved.  Any thoughts?

[TechWife]

I hate to complicate it further, but I think she needs a new GP. It is the role of the GP to coordinate care. The GP should have the big picture of your mother's health and be able to explain things to her and to refer her back to a specialist when needed. At this point, the GP should get on the phone with the pulmonologist, let him know she does't understand her medication orders and that she is sending her back over and she needs to be seen ASAP. Your mom needs to get good information. 

 

Another resource might be a pharmacist. They can often explain things to patients so that they understand them better. Also, they can call the doctor and tell them patient doesn't understand and needs to be seen. The more voices in the chorus, the faster the doctor will respond in all likelihood. 

 

ETA: I also worry about the GP not having a recommendation for an ophthalmologist. A good GP will have a network of trusted peers in other specialties. 

Edited February 19, 2016 by TechWife

[JFSinIL]

Just that when my pulmonologist wanted me on prednisone for a while I mentioned that my ophthalmologist did not want me on them (I have odd eyes and am at high risk for glaucoma) and he smiled and said "Breathing trumps sight" which, I suppose, is true.

[kbutton]

Ophthalmologists are full-fledged MDs; optometrists of any kind are not MDs. My mom used to work for one. An optometrist should catch glaucoma, but I don't know that I would want them to manage it--maybe a consult with an ophthalmologist once in a while and follow-up with the optometrist in between? Some people have stable glaucoma for years while others have major, serious issues. It's common, but it's not something I would leave to an optometrist all the time and forever.However, if you don't have a good referral, find out if that's because it's not a good specialist or because the primary care doc just doesn't know who is good.