First Appointment at MGH

Today was a very long day.  But it was worth it.  I really like the clinic at MGH and I am going to stay there.

I had a full PFT appointment at 8:30 am so I had to be up and out the door by 6:30.  It has been raining for 3 days and I knew traffic would be a mess.  It was.  PFTs went well, I have not changed since April which is good.  They did a post as well and I shot up 3% from 37% to 40%.  It doesn't seem like much but it is a 9% increase which is huge!  I got a little panicky in the booth when they blocked the air for the test.  But I only had to stop once.  The woman was very nice and didn't get annoyed thankfully!!!  I never had that happen before.  Good old anxiety haha!!!

At 10:30 I had my clinic visit.  I saw the nurse and we went over everything.  It was probably close to an hour we chatted.  I had to give a history and medications etc since I am new.  I talked about some of the issues I have and things I would like to focus on.  We are going to do another OGTT to see how my sugars are.  I am going to monitor and log my sugars so when I see the Endo I have a good idea where I am at.  I scheduled an appointment with her for September.  I am making an appointment with the PT to do an exercise tolerance test and to set up an exercise plan.  I am going to see a gynoendocrinologist who focuses on hormones etc after menopause.  I never knew someone like that existed and I think it will be great to meet with them.  We are going to do an overnight O2 study to see how my numbers are when I sleep.  I haven't been using O2 when I sleep the past month or so and I have been feeling OK.  But I want to be sure I am not hurting myself by doing this.  I got a prescription for Ativan which I loooooove.  So thankful they gave me one for my anxiety.

After the nurse, I met with my new CF doctor.  He was great.  Very personable and open and I felt very comfortable with him.  We talked about everything, my history, action plan etc.  One thing he wants to do is have a 24 hour urine collection done on me to see how my kidneys are actually functioning.  Since IV Tobra has been off the table for a while but my kidney functions have always looked OK, he wants to see if there is a reason why they stopped the Tobra.  I was never really given a reason just that my numbers were off and we tried different doses and times to fix it but it didn't work.  So he wants to see if maybe there is some kidney damage that isn't showing up on my blood tests.  His main concern is that I am treated by the same family of antibiotics instead of getting two families in there.  So if we can add Tobra back in that would be good.

Overall I was there for 3.5 hours and I feel like I got so much accomplished.  I felt very comfortable there, not like I was out of place at all.  At BCH you get shoved in a room and I always feel like I am a caged animal.  AT MGH clinic I was put in a room but I was able to leave to use the restroom and when I left I didn't feel like I was just another person waiting to check out.  I chatted with the woman at the desk and it was nice.  I felt like they cared and like I wasn't just another patient on the list.  I missed that from my old clinic in PA.  I am so glad to have it back.

So a shout out to my 3 great Cysters to answered my numerous questions over the last few months and helped me get set up to move!!!  You ladies rock!!!

Now to send a good bye letter to BCH...

Finished Processing

OK so the long awaited, or not, update.

I have had over a week to process all my information and I think I am at a good point.

The thing is I HAVE to get this cyst from my pancreas removed.  The thing is pancreas surgery is a BEAR and I may or may not be in good enough health to deal with it.  The surgeon is worried, and rightly so, about my lung function and bacteria growth in my lungs, and recovery.  Bacteria from my lungs can cause all sorts of issues with the healing of a sliced up pancreas.  My low lung function means I could never come off the vent or I could die.  But not having it removed means I may never get a transplant and I may get cancer.  Neither risks I am willing to take.  I may not be 100% sure I WANT a transplant, but I know I don't want the option taken off the table.

The stats on this surgery are crazy.  30-60% of patients experience post-surgical complications.  5% of patients die during surgery.  Roughly 5% die from complications after surgery.  Scary to me, but I also didn't ask about the stats when I had the hysterectomy.  It seemed simple and easy.  Though when you Google the stats it seems just as scary.  So maybe I have nothing to fret about.

My cyst right now is on the head of the pancreas and the whole head will need to be removed.  The size is 2.6cm right now and we will see in May if it has grown to the magic number of 3cm.  3cm and the surgeon told me they remove it.  But because I have Lynch Syndrome and they are recently learning the affects of LS on the pancreas, they would recommend it coming off, if I did not have CF or transplant to think of.

After the appointment on Tuesday, the surgeon began a chain email with my GI doc, genetics doc, tx team and CF doc.  I was pleasantly surprised he started it that day and did not expect to see my CF doc on Wednesday and hear what had been discussed.  Tx was asking a bunch of questions, as I would expect.  Dr. D. does not see any serious risks (besides the vent thing) to me having the surgery and vowed they would do all they could to be sure my lungs were in the best shape possible.  Luckily I see the transplant doc early May, before the MRI and surgeon again.

As far as CF clinic went...I was down a bit lunch function.  At 32% again, 1.00L exactly.  She wants to see me monthly until the surgery to be sure I am ready.  As she said, I am stable, I dip here and there but nothing drastic.  I am not on O2 full time and only require a small amount with sleep.  Thanks to exercise my resting heart rate and O2 have gotten better so I am in good shape for surgery.  But I am still scared.  I will be scared until the surgery is over.

The transplant coordinator called me earlier this week to let me know that due to all of this, they want me to get up to date on all of my transplant tests again.  So back to the dentist I went, back to the PCP I go for those tests and I get to spend a day or two wandering around BWH getting all my tests done again...except the cardiac cath and pH probe thankfully.  I can deal with CT scans, echos, PFTs, labs and meetings with docs.  I don't know what this means for me.  Do they want to reconsider my case and list me?  Or disqualify me?  I won't find out until May 2nd.......................................

Love to you all...

In the Process of Processing

I met with the pancreatic surgeon yesterday and my CF doctor today.  There is a lot of information to talk about.  But I need some time to process it all.  Once I do I will post an update.

Feeling Better...Almost Normal

Well let's see what has been going on the past two weeks?  I was admitted on the 28th, Friday.  Originally I was supposed to go in Thursday, then it was pushed to Monday then it was Friday.  Luckily they did Friday because there was no way I would have been out on time for the 4th festivities had I gone in on Monday, the 1st.  My TOBRA levels were high after just two doses so they stopped it for one day and restarted me at a lower dose and every 36 hours.  I am doing that schedule now at home too.  I am also on Zoysn every 8 hours.  My normal IVs schedule.

I had clinic follow up today.  My numbers are back up to 1.10L, where May and June I was 1.13L and 1.11L respectively.  So I am pretty much back to base line.  We are doing one more week though to see if I can get anymore from these old blowers.

I also got a new toy!!!  The NP gave me a spacer and an Rx for a duoneb inhaler.  So now when I am out and need a treatment I don't have to fret, or breathe like shit.  I can keep it in my purse and use it when I need it in place of a nebulized treatment.  This will be great for amusement parks and the beach!!!

As far as feeling better, I am getting there.  My O2 is almost normal with exercise, but my tolerance is way down since its been almost 8 weeks since I had to slow my pace.  So I need to build that back up some.  I am coughing up a storm, all dry inflammed coughs.  No fun.  I miss my mucusy cough from when I was a kid...

Till next week.....

I Wanna Bulk UP!

No not really!!!  But let's hope my plan of action doesn't make me.

Clinic was a bit disappointing.  As I posted last time I feel like ass, like complete and total shit.  So what happened at clinic?

Nothing...ok stuff happened but I am eh about it all.

FEV1 the same.  I went from 1.13L to 1.11L, 39%-38%.  Nothing worrisome there.  But no one seems to care that when I have an appointment at 9:30am my numbers are going to be waaaay better than when it is at 11am (this was a moved appointment so I had to make it that early if I wanted to go before June 26th).  2 hours post-treatment is great for me in the mornings.  4 hours post-treatment not so much.  Get me in the afternoon and that is my PERFECT time because that is pretty much how I feel from about noon till I go to bed around mid-night.  9am is NOT my normal lung feeling, nor capacity.  But that doesn't matter in the medical world apparently...Anyway.

When I explained my symptoms I felt like my doc was thinking I was lying.  Like I was looking for IVs for fun.  Yeah fun.  Let me tell you how much fun diarrhea, nausea and pure exhaustion are.  But they are worth it when you feel great after.

So instead what did I get?

An x-ray to make sure nothing was wrong in there.  Only some extra smudge on the lower lobes.
2 weeks of 750mgs of Cipro twice a day.
1 week of 20mgs prednisone twice a day
1 week of 20mgs prednisone once a day
30 days of 30mgs of Prevacid twice a day (been having a lot of extra heartburn lately)

Hoping the prednisone opens me up.  If it doesn't I am going to be so mad.  I can't fit a hospitalization in until beginning of September without missing classes and  I don't want to do that.

Oh well.  Camping this weekend and maybe the steroids will make it easier for me to bike ride, go on a scavenger hunt, and swim....

The Pity Look

You know that look.  When someone looks at you and you can see the pity in their eyes.  They cock their head to the side and shake it softly. 

I experienced this on Thursday when I went to see my PCP.  She is hard to get an appointment with since she is working only one day a week while waiting for the baby to come.  So I couldn't get in to see her but I got to see one of her team members (The place is HUGE but they are broken down into groups of 4-5 doctors so if you NEED to see someone and your primary isn't there you can see someone who is relatively familiar with your file).  I had to get some refferrals for upcoming appointments and also see about upping my anti-depressant dosing.  We were chatting and he listened to my lungs and asked how I was doing CF wise.  I told him how my CF doctor wanted me to meet the transplant team and gave him a brief synopsis.  That's when I got the pity-head-nod-stare. 

We also chatted about my depression, mood swings and irritablity.  We decided to try upping the Celexa to 40mgs a day instead of 20mgs.  So far I feel wonderful!  This weekend was the first weekend in MONTHS I haven't wanted to rip someone's head off and kick it across the lake.  Granted it was also the first real SPRING weekend we have had but we will see how this week pans out. 

What really impressed me was that my PCP called me later Thursday to check on me and make sure I was ok.  She had talked to the doctor I had seen and she wanted to just touch base with me.  She also promised to come in and see me on May 13th when I am there again for my follow up.  I really appreciated her calling me and I will be sticking with this place as long as I can!  I really liked her when I had met her before but this really solidified it for me.

Rough as the stormy seas

I had a very rough day today.  Not CF at all, thankfully, but emotionally hard nonetheless.  I have so much I want to write down but I don't know where to start nor how much I want to tell.  I am sure in due time it will all come out.  But until then I am keeping it clamped up inside, where it normally lies.  One good thing coming from all the turmoil in my wee little head, is I am searching furtively for a new psychologist to see.  So despite the bad, good will come.

Scratch Scratch, Itch Itch, Oh what a Pain it is!

It has been almost 2 weeks that I have been off of the IV antibiotics and I am a mucusy mess again.  It is only noticeable after a treatment with the saline, thankfully.  That means I have time to keep it there and not let it get out of control.  Funny how soon all that gunk comes back when you turn the big boys off!  My fingers are crossed that I won't need to schedule an earlier appointment with my clinic before my October 5th appointment. If I do so be it, but I am aiming to not need to.

One thing I have noticed this past week, which I don't remember ever being this bad before, is the itchy lung syndrome.  I posted about it on face book and not too many people had a clue what I was talking about.  It just feels like my lungs are itchy on the inside.  Especially after I cough, I can REALLY feel the itch.  Like the mucus is tickling the airways in there.  I am hoping this will go away soon because, while it may not be painful, it is certainly annoying.

My joints are also still a bit achy.  Fortunately it is only my knees and knuckles on my hands.  They aren't so bad I need to take Motrin but my knees make it difficult to bend and sit on the floor, then get back up.  So that is being added to my list for Dr D in October.

This fall is going to be chocked full of doctor's appointments.  I managed to finally pick a primary care physician, a gynecologist, eye doctor and dentist.  I have appointments with the gyno and pcp the first week of November.  I am excited about the gyno because I want to talk to her about the Lynch Syndrome and possible removal of my uterus.  And if she is not for that, then we will just do birth control again.  I hate BC because after a year I have to stop it and wait a few months to get my system back on track before I can start again.  Frustrating!!!!!!

That is all I have for updates with me.  In other news, please keep praying for our dear girl Cystic Gal as she is still retaining fluids and is having surgery after surgery to stop the problem.

Letter from a Doctor

A friend of mine posted this on CF2chat a few days ago.  It is a great letter and really lets you see into the doctor's perspective of "dealing" with us chronically ill patients.

A Letter to Patients With Chronic Disease

Dear Patients: You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?


I can’t imagine.


But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.


You scare doctors.


No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.


But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.


And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.


Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.


So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.


So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit. Sincerely,
Dr. Rob 
Post Script: This post has generated a huge amount of conversation and interest (as witnessed by the large number of comments!).  I very much appreciate the dialogue it has spawned both here and across the web.  I’ve subsequently written follow-up posts explaining my thoughts in more detail – largely in response to the comments here.  One of them discusses in more detail my own experiences as a doctor and the second talks of the importance of  knowing and being known.  Reading these will give you a better picture of my thought process and perspective on this.
Dr. Rob