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Doctors, doctors and more doctors..... woe is me.


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#1 miocean

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Posted 25 April 2012 - 08:21 PM

So, in less than one week I have had my GI doctor prescribe probiotics one day that my nephrologist tells me the next day that I can't take and prescribes me a steroid spray for sinuses that moved to my lungs so I went to my primary who said the nephrologist should tell the GI doctor not to prescribe probiotics to transplant recipients and what does a nephrologist know about sinuses..... :emoticon-dont-know:


Sorry for the run-on sentence but that is what my life is like. When I re-read that it is funny in a warped way.

:temper-tantrum:


I need a good Internal Medicine doctor fast!

miocean

P.S. I would like to hand over the "most ologists" award to someone else. :high-five:
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#2 Sweet

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Posted 26 April 2012 - 09:04 AM

Oh my goodness, what a mess. It's so hard to know at times what to do! Each appointment I walk into I have this big binder with all the info from previous appointments, with all my doctors. I ALWAYS have to open it up, and correct someone, or fill them in on something they had no idea about. For the most part it goes smoothly because all my "ologists" are in the same building and they are now using EMR (electronic medical records). So it's getting better.

Hang in there!
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#3 debonair susie

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Posted 26 April 2012 - 09:42 AM

Oh mi!

Just like Sweet said...if all these "ologists" were located within the same facility, it would sure be a better deal for you AND them! WHEW!!! :emoticon-dont-know:
Also, that's why I have chosen not to go out of network so they all have my records at their fingertips. Oh yes...electronic medical records really ARE the greatest ever! :emoticons-clap:

If that's not the case in your situation, I surely do hope it can happen!
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#4 Amanda Thorpe

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Posted 26 April 2012 - 10:22 AM

Hello Miocean

Nope, the 'Ologist award is yours forever! I have a friend who was told about a drug she could take to stop vomitting but it can cause the side effect of...nausea. For real? Oh and Ma once had a medication after her heart attack that could cause chest pain. What? If it's not one thing it's another, you can have a drug to help with one symptom you won't be able to have it because of another symptom or another medication. It goes on and on and on...

Take care.
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#5 Joelf

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Posted 26 April 2012 - 10:50 AM

Hi Miocean,

The only real very tiny gripe I have with the NHS is that the left hand is invariably unaware of what the right is doing! There was a scheme to have all medical records together on one data base but then there was a change of government and I believe the whole thing's been shelved. Like Sweet, I keep all my records together and am then in a position to update any of my consultants/doctors should the need arise. Thankfully, I've found that the ones lower down in the 'pecking order' have not had large egos and are quite happy to follow the advice of the more specialised ones, which is very fortunate as then I don't get conflicting advice. (It's no good having more chiefs than indians!! ;) :lol:)

Kind regards,

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#6 Teatime

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Posted 27 April 2012 - 12:05 PM

Oh my! I'm so sorry! I think a lot of us can relate. :( I have 3 ologists on my back and hip pain right now but still have back and hip pain! All 3 only agree in what area -- pain pill prescriptions. And I'm not a big fan of taking those regularly! I do hope you get it all sorted!

#7 Climber

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Posted 29 April 2012 - 12:58 PM

Sorry, Miocean about all your complications with your different 'ologists. How challenging it is to have to second guess your 'ologists recommendations because they aren't understanding the big picture and your other medical issues.

It seems because there is so much medical knowledge now available that health care has become kind of like a factory with each specialist mostly understanding only their own specialty and not understanding the other medical problems we have and since our body systems all work together this is not always the best program. It's a shame that they are so busy and most don't have the time to coordinate with each other and for the most part it seems to me like our primary care providers are not much help either. At least mine isn't, not that he isn't a nice man and doesn't want to help but he doesn't seem to do much in coordinating or communication between my specialists. The only thing my primary care physician seems to be there for is minor acute problems like respiratory infections or UTI's or the like.

It's interesting many of my 'ologists will ask me to have my other 'ologists send them their reports and things but none of them will volunteer or ask who they should send their reports to. I was refreshingly surprised when the cardiologist I visited for testing asked me to list all my doctors and told me he would be sending the results from all my tests to all my other doctors. Sure enough, when I went for my chest x-ray he had listed all my doctors were to get copies of my x-ray report. The girl at the desk looked at me and said "Do we really have to send copies to all these doctors?" She seemed kind of annoyed and I hesitated for a moment but then said yes. After a recent rheumatologist visit I received a phone call that my Vitamin D level was very low and I was given a prescription. I asked if the rest of my blood work was normal and the girl said yes. I almost let it go but then asked if she could send a copy to me and then to my GI doctor and Hematologist. She said she would have to check with the Nurse Practitioner who I saw to see about sending the labs to the other doctors. I'm thinking -- why -- they are my labs if I want my other doctors to see them isn't that what should be done. As it turned out when I received my copy I found both my Hemoglobin and Hematocrit were low again -- both things my GI doctor and my hematologist are concerned about and need to know about. Because the levels were not dangerously low they didn't bother telling me or my other doctors.

We really need to be our own advocates -- it seems doctors are just too busy these days -- even sometimes for things that are part of their specialty. I was recently started on Plaquenil (about 3 months ago) and I know I need to have my eyes checked for a baseline. So at my recent rheumatologist visit (with the PA) I asked about a referral to an opthamologist. She said -- Oh you don't need a referral -- just look one up in the phone book and call to make an appointment. Then I asked -- won't my insurance need me to have a referral. She said she didn't think so but if anyone should do the referral it should be my primary. This makes no sense to me since she's the one who prescribes the Plaquenil not my primary. And also -- if I hadn't said anything about needing an eye exam she would never have brought it up. I wonder how long she would let me be on Plaquenil without checking if I had ever had an eye exam. I guess we really need to be on top of our own health care. It is really scary for those who either don't inform themselves and keep track of things themselves or those who have difficulty understanding and comprehending such things or are too ill to even think straight (I've had those days)!!

#8 Amanda Thorpe

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Posted 29 April 2012 - 01:20 PM

Hello Climber

I have a friend who has been on plaquenil for ages and also has macular degeneration and her eye specialist said you don't need to worry about plaquenil affecting the eyes until year 5. Apparently the drug builds up in the system and takes time to affect the eyes. Although it is a listed side effect it is a rare one.

I have just started hydroxychloroquine myself under the consent of the Royal Free and they never said anything about eye tests neither did my general practitioner.

I am one of those patients too ill to be an effective self advocate, it has taken me months to get a prescription for hydroxychloroquine and gabapentin. My digestive issues, that began last July, are just being looked into because having raised them once with a general practitioner who did nothing it's the Royal Free who have got this ball rolling. I was never well enough to go back and make my general practitioner do something so I waited for my Royal Free appointment to roll around and mentioned to them that I don't eat properly and am loosing weight without wanting to.

I recently saw a general practitioner who wanted more information from the Royal Free about the abdominal investigations and was going to write to them until I piped up and suggested he ring them and gave him the number so he could do so. The difference in time could be weeks and it's weeks in which I could be feeling better. It's bad enough being ill it's totally unacceptable to not be feeling better because someone is dragging their heels. Of course I am assuming I will feel better once they do whatever they are going to do but there is no guarantee I will.

I think it's just life that doctors have too many patients and not enough time. Here in the UK we all know the NHS is bursting at the seams, struggling to provide even basic health care these days.

Take care.
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#9 Climber

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Posted 05 May 2012 - 05:04 PM

Thank you so much Amanda for putting my mind at ease on the Plaquenil. I'm not in any great hurry but I think I will ask my General Practitioner for a referral to an Opthamologist for a baseline next time I'm in to see him just to be safe, but since I don't have any appointments coming up with him I won't worry about it right now.

I'm so sorry you are doing so poorly that you can't self advocate. Do you have any family that are willing to learn the medical jargon and advocate for you? I do understand, I also have those days and while my husband is a wonderful caregiver he does seem lost when it comes to medical terminology and not too interested in learning. But I think (well I hope anyway) that if my bad days become so many that I need him to that he will educate himself to advocate for me (maybe??).

I also understand the GI problems - that was what started my whole road to diagnosis -- I lost 30lbs in a few months and was only maybe 10-15 lbs overweight to begin with. Besides Reflux I also have gastroparesis and I struggle with controlling it with what I eat - lots of pureed foods and smoothies. Ocassionally I take Metoclopramide but the side effect profile of that drug is scary so I try to stay away if I can. I have gained back 8 of the 30lbs and my GI doctor is pleased. I hope things start looking up for you with the GI symptoms and loss of weight. You are in my thoughts.

Also I agree that doctors have too many patients and not enough time -- it's the same in the US see my new post on Shortage of Rheumys.

Hope you are doing better!

#10 Amanda Thorpe

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Posted 07 May 2012 - 02:58 PM

Hello Climber

Getting a baseline with your opthamologist is an excellent idea, I might even do it myself, better to be safe than sorry for sure!

It's so hard when you can't self advocate as you say so I have started taking Ma or most recently my husband with me to general practitioner appointments. For the Royal Free it's always hubby or my sister.

I recently had a general practitioner appointment and hubby came in, well I managed to be my own advocate for sure but tipped over the edge a bit and did apologise. Since being ill I have lost my ability to manage conflict and can become hysterical, aggressive or argumentative (also why hubby comes in so I have a counter balance, he always tells me when I've tipped over the edge!) and with the general practitioner became the latter at one point. Nevertheless I left with everything I felt I needed and I have written to this general practitioner to apologise but to also explain that I have to do what I think is best for me and will continue to do so.

Thank you for your encouragements and take care.
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#11 miocean

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Posted 10 May 2012 - 10:13 PM

Update:
I went off the statin and the magnesium and had labs done too about two weeks later (a week ago today.) The nephrologist called the next day and told me my creatine went up to 1.6 (when it went this high a year ago they did a biopsy) my glucose is climbing, my lipid profile skyrocketed and I have bacteria in my urine (no UTI that I know of.) He lowered my prograf dose by .5 mg, so down from 2.5 2x's/day to 2.5 a.m. and 2 p.m. He said prograf can cause all these things to go out of whack. He sent me a prescription for labs in two weeks.

The next day I began a new medication for depression. I had severe diarrhea all day. The next 3 days I was bedridden with a headache, probably a migraine, making it the second one in my life. I slept off and on until three days when I called the neph. I was told by the nurse if I was not any better to go to ER the next day.The doctor personally called me a little while later to find out how I was doing and told me to force fluids and if no change go to ER.

I had a scheduled appointment the next morning with my primary care physician to go over my cholesterol. I dragged myself out of bed and my husband drove me. Since my numbers may be out of whack because of prograf, which he knows nothing about we discussed how I was feeling and he said it was possible I was having an adverse reaction to the new medication and requested labs but I insisted on going to ER per neph's order.

My husband drove me to the hospital where I spent hours in an extremely overcrowded place on a stretcher in the hallway getting an infusion. It was so crowded they ran out of pillows and then ran out of stretchers. The nurse didn't start the infusion correctly, after having to stick me three times to get the IV in. The doctor asked it to be checked because it didn't seem to be flowing, a nurse came over and said it was right and "doctors don't know." I said "that's scary." The doctor came back and said again the IV wasn't running and another nurse came by and finally opened it up. All of this took about two hours so all that time I wasn't getting fluid. And the things I heard and saw on a stretcher in the hallway. The woman behind me was crying " I'm 92 years old, why do I have to go through this...?" (getting to the quality of life issue.) When the nurse took the IV out it popped out really hard and she said "you don't have AIDS or hepatitis, do you?" I said I was screened for all of those before the transplant so no, why, and she said blood went in her eye...

My nephrologist came down to see me and explained between the high prograf and my system being out of whack, possibly the new medication and dehydration all these things occurred. Although I have some issues with him, I have to give him a lot of credit for being on top of thing and calling and visiting himself. My therapist has been right on top of all of this, calling to make sure I'm ok and talking about the shock my body has gone through and dealing with it.

I left the hospital with two new medications, one for the headache and another for nausea (? because I was not nauseaus) I was so weak, weaker than when I had the transplant and more than a month long hospitalization when I went into renal failure from scleroderma. I am slowly getting stronger, drinking a lot of water, and doing the best I can. Small tasks overwhelm me physically and emotionally but I am getting better. Lights and sounds still bother me.

I am trying to do my best. Although we've had our differences my neph has been right there so I think I will try to see how I can deal with him so we are not butting heads. My therapist is keeping a close watch. My husband deserves a medal for patience and support through all of this. My sister has all of a sudden realized the seriousness of all the medications I have to take and how it effects me physically and mentally (I hope, because I am tired of all her lectures.)

One step at a time.

miocean
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#12 Joelf

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Posted 11 May 2012 - 08:20 AM

Oh Miocean, you have been through the mill again; I'm so sorry. :emoticons-i-care:

It sounds like it was the new medication for depression that caused your dreadful headache and gave you such an awful flare up. Perhaps maybe there's another you could take that won't provoke such an extreme reaction? Thank goodness you have such good support from your nephrologist, therapist and also your husband.

I do hope you soon feel much better and that your symptoms settle down again.

:emoticons-group-hug:

My best wishes to you,

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#13 Amanda Thorpe

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Posted 12 May 2012 - 03:12 PM

Hello Miocean

I am so sorry, you could have spend your time on the stretcher bemoaning scleroderma and renal failure but of course you didn't, that's not you.

Girl, get your sister on this forum, she'll never lecture you again, about things which she knows nothing. Trust me.

Take care.
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#14 jad12

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Posted 12 May 2012 - 11:48 PM

I'm sorry you're having such a hard time. it sounds like you have a good doctor and a caring sister. I hope things improve for you soon.

#15 miocean

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Posted 18 July 2012 - 09:27 PM

I have a new up update to share...

I had my labs done and saw my nephrologist last week. All my levels are excellent except for my cholesterol being high. However my cholesterol ratio is good. My creatine is lower than it has been for quite a while, a sign that the kidney is working well at over 2 years out. Since I stopped taking 2,400 mg of magnesium daily (because it upset my GI tract so much I took myself off it) my magnesium level has GONE UP!!! I believe it is because now my system has some time to absorb nutrients in my food instead of passing everything right out of me.) My doctor said, "oh, I guess for you it works the opposite." We sclerodermians ARE special.

He and I are repairing our relationship. I hope he will take his experience with me and think about it in the future with other patients as well as myself. I have made an appointment to return to my transplant center for a complete evaluation but worded it with him as "I have taken your advice." He is a good doctor but has his own mind set and I don't fit the pattern.

I have also discovered that there are doctors near me who are now offering a concierge service. For a pretty hefty fee, not covered by insurance, they will manage everything for you. My neighbor began using one and then was diagnosed with a very progressive form of breast cancer. She said it was a life saver to have someone to manage everything. I am procrastinating looking into it.

My niece asked my why I seem to see more doctors in the winter. I explained it is because I have my PAP test, mammogram, all my pulmonary function and heart tests, and this year a colonoscopy, in November and December and then have to see all the doctors involved. I have decided to spread the tests out more this year and schedule the ones that can wait for a few months. I believe it will take a lot of stress off me to do it that way and get on a new schedule for the future. I have never missed a test and it has only been 3 years since my last colonoscopy. Because the anti-rejection drugs cause cancer (as Shelley would say "sigh") I cannot ignore them but I do not think a couple of months will make a difference.

Thank you all for your kind thoughts. They have helped me to do better. I feel better physically and emotionally than I have in a long while. I am sorry that the way we drew lots we all ended up on the same team but it is a great team!

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#16 Joelf

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Posted 19 July 2012 - 12:52 PM

Hi Miocean,

Thanks for sharing your update.

I can see the benefit of using a concierge service (pity it's expensive!) As you do have so many medications and consultants to deal with (remember you're our 'ologist winner!! :lol:) perhaps it might help you and relieve some of the stress you're experiencing. Worth a thought anyway! ;)

I'm so glad that you're feeling better physically and emotionally; as I've said before the best thing about this bizarre disease is the fantastic people I've got to know through having it! :emoticons-yes:

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#17 miocean

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Posted 13 August 2012 - 08:37 PM

Almost a month has passed since my last post on this topic and it has been a very good month. Summertime has brought a lot of company and family visits, fortunately for me not staying at my place as my sister-in-law has a huge house. We went on a road trip that totaled 2,400 miles over 10 days, I have been swimming a couple of strokes in the ocean and seeing very few doctors. Although I have become tired, it is more the usual way people do, not the all out crashing that has happened in the past. I have also been pacing myself and taking time to rest.

The appointment with my transplant center is coming up next week. Here is my dilemma :emoticon-dont-know: :

I feel great. :yes: My labs are great. I have solved the majority of my issues with my doctors. The only concern I have is the rise in cholesterol, more than likely medication induced. My therapist advised me, based on all of this, to take the stress out of going back to the transplant center and to think about canceling, and to see if I could get some advice about the cholesterol over the phone.

I called today and was told if I cancelled I would not be able to get back in until the end of September. They are holding the appointment open until I speak with the social worker who was unavailable today. I left a message but it takes her a while to respond. I will repeat a call tomorrow. I feel so good and do not want to waste everyone's time to be told everything is fine.

I had a appointment with my pulmonologist today and everything is stable. I see my scleroderma specialist and nephrologist and have labs in September. So,,,any advice?

Thanks!

miocean

P.S. I am using Safari and have access to the forum with emoticons, fonts, etc. Thanks for fixing that issue!
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#18 Joelf

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Posted 14 August 2012 - 05:45 AM

Hi Miocean,

I'm so pleased to hear that you're feeling great and that your labs are also great and that you've been having such a lovely summer.

I can see your dilemma as far as your transplant appointment goes, but I think I would be inclined to keep the appointment, even though you're feeling so good at the moment. I'm sure you won't be wasting anyone's time, even if you're told everything's hunky dory; it's only the stress that it causes you that makes me suggest that perhaps you should wait for the social worker to get back to you and then see what she advises, especially as you have got appointments with your scleroderma specialist and your nephrologist coming up next month.

For myself, I always tend to do exactly what my Brompton consultant advises...(if she wanted me to stand on my head whilst singing the UK National Anthem I would!! :lol:) but I do have a lot of faith in her advice! ;)

Do let us know what you decide. :)

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#19 judyt

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Posted 14 August 2012 - 06:12 PM

Hello mio,

I guess I think that it is only fair to let your doctors know when you are feeling well too. If they never get any good feedback then life could be fairly bleak I would think. However that is just how I feel, I don't get stressed by all this stuff, in fact I quite look forward to our chats. Of course that is only meant to include the ones who are not egoists and can't see past their own nose!!

I have my annual chat with the Rheumatologist on Thursday and am quite looking forward to telling him that in spite of the bad start to my year when I was in hospital for days on end, I am now feeling better than ever.

Take care and try not to sweat the small stuff.
Love and best wishes
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#20 Amanda Thorpe

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Posted 15 August 2012 - 04:47 AM

Hello Miocean

Maybe I am missing the point but why wouldn't you go? There's no requirement to only have bad news to report to doctors, if all you have to say is "I feel great!" that's allowed! They might sign you off from their service and wish you well. Last time I saw the cardiologist all I had to say was "I feel great!" and they just signed me off. That's allowed.

Take care.
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