And We Are In Range Again!

This weekend, I avoided going out in the sun, took my meds, took it easy, at least somewhat, I’m never good at the taking it easy part. I took 30 mg of Prednisone From Friday until today. I started feeling a little better yesterday, and somewhat better today. I decided to take my 30 mg dose this morning, then I went and checked in with Dr. C. Thankfully this appointment showed improvements. My INR is back in range, it’s 3.5. That means I can resume my normal dosing schedule of Warfarin for the rest of this week, unless I start getting ‘the bad’ headaches. Some warning signs of low INR for me is really bad headaches, silent migraines, and splinter hemorrhages under my fingernails. Those things all show me I need to go to the doctor and get my INR checked, even if I’m not due for a check.

I was so happy to see 3.5 on the INR test machine this morning. I’m pretty sure I would have cried if it had still been low. Cindy wrote down my INR, made notes in my chart on the computer as we chatted and then she left the room. Dr. C came in a little while later and was happy to see my INR had returned to range. We discussed if I was comfortable returning to my regular dosing schedule and I said I was. He then asked if I was feeling better, and I told him a good bit but still not completely. He said he wanted me to stay on Prednisone a couple of days longer so-called me in another prescription for them. He said it would hopefully knock this flare the rest of the way out. He asked when I wanted to come back and get my INR checked and I said in a week since I was on Prednisone, and that med is known to cause spikes in INRs. He the told me that either Friday or Monday would be okay and that Cindy would come back and schedule that appointment with me since the majority of my INR checks will be through her with him calling me later in the day, unless there’s a drastic out of range reading like we were getting last week. I told him how much I appreciated him stepping in Friday when the reading came back so low, and he said not a problem and that the appointment went exactly how he was hoping the set up would work. He’s hoping if the majority of my INR readings are with his nurse we can keep my insurance company from getting fussy later on down the line. He will still want to see me once a month to check in. He then explained that if I ever need to talk to him or if anything happens like it did on Friday then Cindy will come get him and He will either step in at that time or I can wait in the waiting room until he can see me. At least there is a concrete plan of action. That makes me feel more at ease.

Now let’s hoping a day or two longer and I can be done with Prednisone. It causes my usually stable with treatment BP to shoot up. This morning it was something like 144/92 and my pulse was 111. That’s with taking my daily dose of Lisinopril. So needless to say I can only do short treatments with Prednisone. Besides, it causes too many other issues if you stay on it long-term. Wonder drug that it is, it still does some pretty nasty things to a person’s body over time.

When Cindy came back to schedule we decided to do my next check on Friday because she is off next week and I would prefer to deal with her since she is most familiar with me and my issues. It gets old having to explain everything to new nurses, and doctors. So if I can continue dealing with primarily her and Dr. C this will cut down on my stress level as well. So I’ll head back to see her at 9am Friday to see if my INR is still behaving.

Coming up this week in the list of appointments:

  • Tomorrow: Therapy….It’s going to be an interesting appointment. This is the first session I’ve had with her during a flare. Will be interesting to see how discussions go when we have an actual flare to discuss instead of the anticipation of one, or the aftereffects of one to discuss.
  • Thursday: Ophthalmology appointment. Dr. B 6 month Follow up, plus a check to make sure Plaquenil isn’t building up in my Retinas.
  • Friday: INR Check with Cindy.

Full week ahead still plus….all of the other life stuff that I need to accomplish. Yep folks, it’s going to be another busy one!

Tilt A Whirl Kind Of Day

The answer as to why my INR was low yesterday….. the beginning of a flare. Today I was hit with spells of dizziness that landed me back at Dr. C’s office. Dizziness was one of the things on the list he told me I should return before Friday if I started experiencing. So when I started having dizzy spells this morning around 11 I called and got his last available appointment at 4.

I spent the day between the before the appointment taking it easy. Doug and I watched How To Train Your Dragon, ate lunch and assembled my Medical Bracelet that finally arrived. Stay Tuned for a separate post dedicated to it! I continued to have dizzy spells throughout the afternoon, even after eating, and making sure I had adequate fluids. We thought it might be my blood pressure dipping too low so we checked it at one point and it was 123/77.  Yesterday at my appointment it was 130/86.

Doug and I got to Dr. C’s office and went in after Mellow called as he got off work. I signed in and we sat down to wait for the check in process. A little later I was called up and one of the ladies signed me in. It never fails when this lady checks me in she argues with me over if I have a copay at their office or not. Even though she can clearly see on their copy of my card I have no copay for my PCP. The convo this afternoon went like this

Receptionist: “Do you have a copay today?”

Me: “No.”

Receptionist: “Are you sure?”

Me: “Lady I’m here at least every other week, I’m pretty sure I know what my copays are.”

Receptionist: “Are you here for a physical?”

Me: “No”

Receptionist: “Are you sure?”

Me: “You can see the reason for my visit on your screen.”

Receptionist: “Are you sure you don’t have a copay?”

Me: Blank stare on my face

I’m usually a lot nicer and chattier with the front desk ladies. Dizziness does not make for a friendly version of me though. The lady that usually checks me in was quietly smirking behind this lady at our exchange. At one point she mouthed, ‘I am so sorry.’ Finally she finished her line of questioning and printed off my paperwork for the nurse and let me go sit back down. Which was great, because I was starting to get really dizzy standing there, and I told her that a couple of times. It would not have been good if I had of fallen out in the floor.

A different nurse processed me for this appointment, a nurse I had never worked with. I’m so use to Cindy, Dr. C’s main nurse that it always catches me off guard when a different nurse calls my name. She came to the waiting room says “Nicole” I just sat there assuming she was asking for someone else. After several seconds in a more urgent tone she goes “Nicole Davis!” Oh that’s ME! Doug and I stood up and followed her to the scales. Weight was down a lb from yesterday. Then off to the room we went. No fever, good sign. Pulse was okay, O2 was good. BP was 116/77, even lower than it was earlier in the day. I mentioned to the nurse that Dr. C probably wanted my INR checked and she said she would go ask Cindy. She left said that he was running a little behind and told me to be patient and hang tight. We are good at entertaining ourselves while waiting in the rooms at appointments so it was all good.

We were busy chatting when Doug pointed out that my butterfly rash had returned. My face had felt warm for a little while, I took a look and sure enough there it was across both cheeks and bridge of my nose. A few minutes later we heard Dr. C ask Cindy if they had gotten an INR on me, they told him no and in he came. “What happened?” ……Wait is this a repeat of yesterday? “I missed you so I came back.” I blurted out. Yea I’m an awkward individual. Then I told him about the dizziness and he pointed out the butterfly rash, asked about the level of joint pain which were hurting a good bit. Then he asked if I had increased the amount of time I was spending in the sun over the last few days, activity level, and questions about other known triggers of Lupus flares. He then said Cindy would be in to get an INR and that if it was any lower than it was yesterday we would be doing a Lovenox Bridge while we rebounded to my target range. I was so happy he brought this up because if he hadn’t, I was going to suggest it myself. He said other than that we were looking at doing another round of steroids because it was becoming evident we were dealing with another Lupus flare. Why on earth my INR drops like this when I flare, I have no idea but it’s a definite pattern that we have documented.

He went out to take care of another patient or something while Cindy came in to check my INR. To our surprise it was 2.7. It was up a whole 0.4 points from yesterday! When Dr. C got back to the room he said luckily we didn’t have to do the Lovenox bridge, but we would keep that in mind for future dips like this. He did tell me to go ahead and do the extra day of 17.5mg tonight as planned. Then I go back to my regular doses the rest of the week. It was the end of the day so he sat and talked to me a bit. He gave my medical bracelet his stamp of approval. He also is sending a referral to another Dermatologist that accepts my insurance. Apparently the one my Rheumatologist wants me to see doesn’t take my insurance, even though my insurance says he does, that makes no sense to me. The appointment at least calmed the worry that my INR had fallen even lower than it was yesterday, confirmed that I was flaring again, and allowed us to discuss a few things at a leisurely pace since I was the last patient there for the day. It’s up to me if I want to take Prednisone or if I want to ride this flare out since it’s not as severe as my last one. We will see how I feel tomorrow and I’ll make a decision about the steroids for tomorrow in the morning. They come with their own risks and issues so we try not to use them unless I absolutely need them.

He told me I could either keep my INR check on Friday, move it to monday and he’d be fine with that or I could move it to Tuesday, but he wouldn’t be all that happy with that but it was up to me. I am leaving it on Friday and we will go from there. I left out a bunch of things. I’m tired and my brain isn’t processing properly. I guess after being on a tilt a whirl all day that is to be expected.

What Happened? How Low Can We….NO.

“What Happened?”, he exclaimed as he stepped into the room. “Beats me, guess my INR got lonely.” I replied. That was the start of my appointment with Dr. C today. I had my INR check. It was the first one at the 2 week spacing. Today my INR was too low. No major changes in my diet, no changes to my medication, no real concrete explanation, just another frustratingly low reading. After almost 2 months of my INR being consistent and in the range of 3-4 it was 2.4 today. I didn’t like it, my doctor certainly didn’t like it, he kept repeating so throughout the appointment.

Some of you may be asking what an INR is. The international normalised ratio (INR) is a laboratory measurement of how long it takes blood to form a clot. It is used to determine the effects of oral anticoagulants, most often Coumadin(Warfarin) on the clotting system. It is used to determine if the dose is appropriate or if it needs to be increased or decreased. If you want to see what a Typical INR appointment sort of looks like for me Check out my post, Always At The Doctors. They are doing away with those snazzy little papers though, and transitioning to a new form. Plus Now instead of seeing the Nurse Practitioner (who no longer works there), I have been seeing Dr. C for my INR checks and the nurse oversees the test part of my visit then he comes and talks to me about the results, adjustments that need to be made and the time frame of when I need to schedule my next check. Eventually I’ll need to post new pictures of INR appointments! 🙂

I knew it was going to be low today, I woke up to a tiny little splinter hemorrhage under one of my fingernails. Even though last week my Hematologist said those aren’t of concern, I’m going back to my previous thoughts that they are a warning that my INR is low. That has been proven to me a couple of times. Low in this case is still in the I should be protected from major clots, however given the nature of Antiphospholipid Syndrome, I’m still in danger somewhat of microclots, severe headaches, dizziness, vision issues, and m/s like symptoms.

We talked about my diet over the last two weeks and the only thing that was really different is I had chickpeas. He said it is a possibility that I have an odd sensitivity to them so we will keep that in mind. He said it is possible that it might dip a little lower than what I’m at if I ate them on Saturday. He’s hesitant to bump me up more than what he did at this appointment, so he told me to take an extra dose of 17.5 mg this week. I’m taking 17.5 tonight, Tuesday (this is the extra dose), and Thursday. I’ll take 15mg on Wednesday. I go back Friday to get it rechecked, unless I start having severe headaches, dizziness, visual disturbances, etc. Then I am to call him and come in right away.

While there I showed him a rash that had appeared over the weekend and he diagnosed it as Tinea Versicolor and called in a prescription for a steroid cream. So for the next week I get to apply this cream 3x a day. He said the rash is pretty common in Lupus patients and I’ll probably see it again from time to time. Great? UGGG!

I also took the opportunity to ask a few questions that had been on my mind lately. I asked what physical activities I needed to avoid and he said it was more about weighing risk vs benefit. To make smart decisions and to keep him informed. I also asked if there were foods I should avoid since I am on an immunosuppressant. He told me no and explained that while we were suppressing my immune system we weren’t wiping it out completely. Essentially Imuran is keeping my immune system in check and making it act like a normal person’s would, instead of being in overdrive like mine is since I have the autoimmune issues I do have. He said if I wanted to though I could take Vitamin C. He then added to be really careful with Multivitamins because they have Vitamin K. Vitamin K will make my anticoagulant less effective.

So here we are, another dip on the INR rollercoaster, just when it looked like we had leveled out. My thoughts are it’s either the chickpeas, stress, hormones, or an impending Lupus flare. My husband inquired if it could be the fact that I have spent extra time in the sun this past week. Who knows really. All I know is I hope it is back up on Friday. We shall see.

Follow-Up with Dr. C

He wore purple for Lupus awareness! Have I mentioned how awesome my doctor is?
Dr. C wore purple for Lupus awareness! Have I mentioned how awesome my PCP is?

 

Shirt we made Dr. C for Lupus Awareness
Shirt we made Dr. C for Lupus Awareness.

It made my day today when my doctor walked in and pointed out he was wearing not one but two purple shirts for Lupus Awareness! One of them being a shirt we made for him! I wish I could have gotten a picture of him in it, but I at least have a picture of the shirt from before we gave it to him. There is a story behind it and hopefully he won’t mind me telling it on here. My friend Penny and I ran into him one day at lunch and were chatting with him when the waiter happened by and asked him what he did for a living. He replied “I’m a Family Physician at HFP”. The waiter looked at him and then asked, “Is that like a doctor?” Dr. C replied “Yes it is exactly like a doctor”. After the waiter returned inside much laughter ensued. It was rather amusing. After I told my husband the story, being the screen-printer he is, it quickly because a shirt slogan and I gave it to Dr. C at my next INR check.

Today was a follow-up appointment with him. This appointment was on the books a month ago and was supposed to be the appointment where we talked about the fact I had started Imuran and caught up on notes from my last Rheumatology appointment. Since I started Imuran ahead of schedule we didn’t have to do that part. For the most part we have already seen the impact it is going to have on my INR and warfarin dose. For me it appears very little impact is occurring. One this I did forget to mention at my appointment and I will make a note to tell Dr. C next time is that this is absolutely the max dose of Imuran I’ll be on because of how my test results came back when Dr. L tested how I metabolize Imuran. That is the one piece of information I forgot to mention today.

I did tell Dr. C that Monday’s appointment overwhelmed me, left me in tears, and that it was like a completely different doctor had walked into my appointment than the Dr. L I had met at my previous appointment. I told him about Dr. L’s sudden change of mind that we really need to track down the antibodies to prove Lupus and that it caught me off guard a good deal. I showed him the information on the Dermatologist that Dr. L wants me to see for the skin biopsies. We talked it over and he is leaving it up to me unless it comes down to Dr. L requiring me to have them done to continue treatment. I showed him the codes that were on my paperwork that I had to give to the checkout lady at Dr. L’s office and he was able to explain what the medical codes meant. I was correct that the first code meant Undifferentiated Connective Tissue Disease and the other two codes were apparently just reminder codes to my insurance company that I am on high risk medications (Imuran & Warfarin). With that being said, he did tell me that both himself, Dr. M and of course myself still all believe this is Lupus. He reminded me that Dr. L is one of the older doctors, so his Dr. M but not all of the older doctors are stuck into the older way of diagnosing Lupus. I told him that I had learned through looking at my medical records from Dr. L that my ssDNA (single strand DNA antibodies) were moderately high when his lab tested me for Lupus a few weeks ago. The problem with this antibody is that I A) didn’t test positive enough for their likings and B) it is not specific to SLE. It CAN show up with Drug induced Lupus,  Rheumatoid Arthritis and Chronic Hepatitis. Today we discussed that we are pretty sure I don’t have Hepatitis (We have had many conversations over liver issues because my aunt died from Autoimmune Hepatitis and I am terrified of liver issues now),  my Rheumatoid Factor does not support a diagnosis of RA. I am on one drug that can sometimes cause drug-induced Lupus. Here’s the thing though, at the time of the test, I had not been on it for very long, certainly not long enough to cause DI-Lupus AND all of my symptoms predate the start of Lisinopril. So we are again pretty sure this is SLE. I also have anticardiolipin antibodies, which is part of my Antiphospholipid Syndrome, the blood clotting disorder. However, this antibody is pretty common in Lupus patients that also have APS. Confused yet? Yep my medical conditions overwhelm me and cause me to research and ask lots of questions.

So where we stand today is much like I said earlier in the week, It’s still Lupus. We are treating it and hopefully things will slowly start to improve as we continue to do so. Speaking of treatments I told him I thought one of the things that upset Dr. L was that I hadn’t been taking Naproxen as he had instructed me to do between appointments. The thing is I’ve had conversations with both Dr. C and my Hematologist, Dr. M and both of them have in the past laid out the risks of taking Naproxen while on Warfarin. So I’ve erred on the side of caution and used the methods that Dr. C and I have figured out worked for me. I have a topical gel that he prescribed that does wonders when my joints start swelling and it has the benefit of being an NSAID that I can apply directly to the afflicted joint and it’s not systemic so I don’t get the interaction with Warfarin that I get when I start taking Naproxen. I also have a pain med that Dr. C prescribed and when the pain gets too bad I take it. The truth is most days I just deal with the pain because I hate taking pain meds. Even when I need them I hate taking them. I’ve spoken of my dad’s drug issues in the past, just knowing what his addictions did to him cause me to question if I should even get near pain meds. I know there is very little risk in me becoming an addict, I don’t have an addictive personality, unless you count my scarf obsession, my yarn collection, or silly things like that. Still they make me nervous so I don’t take them unless I need them. The last time Dr. C called in a prescription for Tramadol he gave me two refills, I have yet to use the first refill. I still have most of the first prescription left. Granted we ended up having to do a round of steroids in the midst of all this but even those aren’t a long-term option to fixing my pain. Luckily though Dr. C is understanding where I come from with my issues with pain meds. I explained to him the deal with Naproxen and that Dr. L wants me to start taking it at the rate of 1-2 in the mornings and 1-2 in the evenings and that he seemed upset that I hadn’t adhered to this treatment plan. I told him that Dr. L had also said that he has plenty of patients on both meds that have no problems. We both agreed that he probably does, but perhaps none of them have Dr. M telling them not to take Nsaids. I do have a follow-up with Dr. M coming up at the beginning of June so I will also talk to him about all of this then as well.

INR SheetWe also checked my INR at this appointment. It has been 10 days since my last INR check. We had been doing it every week but recently Dr. C said we could start spacing them every 1-2 weeks. I’m not comfortable enough yet to go the full two weeks so I’m splitting it up and going every 10 days for now. I also want to Dr. M about this before I go making too many changes to the frequency of my INR checks. I figure if I’m going to have a Hematologist I should ask him these sort of questions. Today my INR was 2.9. My goal range is 3-3.5(ish). We don’t tend to freak out if it’s a little over. We decided to leave my dose the same because I’m pretty sure the dip is due to this stress induced flare I have brought upon myself this week. Word of caution, stress is not good for folks with autoimmune conditions. It tends to cause a flare in their symptoms. For me it has caused a flare in my joint pain and fatigue and a small dip in my INR. The really cool thing about this dip in my INR, was even though it was lower than we want it to be it didn’t dip me into the range that causes me to have major issues with my APS. Until recently my INR was still in a range where if it dipped it was dipping low enough I would have transient clotting events, dizziness, migraines. This time, it was comforting to see that even with this flare the dip took me just below my target range, and that was still high in the therapeutic range which means clots are of very low risk! Next week I have therapy with AL on Tuesday, then my next INR check and the labs Dr. L is having Dr. C run for him are on 6/2, Dr. M is 6/9.

Overall it was a good appointment. He was able to reassure me and remind me that I still have some control in this insane situation. Plus he wore Purple! Yes he is that awesome! He has another patient that has Lupus and it is sweet that he is showing support for us. Not many doctors would have gone this extra step. It was a small act that says I care! That goes a long way and I hope he realizes how much that means to me.

 

An Open Thank You Letter to Dr. C

Dr C,

When I think back to our first appointment, you asked me ‘Why Us?’ I knew I didn’t have time to tell you the full story,  I only told you the short important parts. I had known for two weeks I had to find a new PCP.  When I first found out I was devastated. Dr. D had been my doctor for the better part of 30 years. Yes there was a gap in there when I thought, like many 20-something year olds that I was healthy and didn’t need a doctor, so I didn’t see him. In that 10 years, he closed his small town private practice and went into a larger practice ran by Novant Health. So when I became ‘sick’ in late July/early August and found myself under his care again, I was essentially in their eyes, a new patient. To us, I was not.  My older medical files, are locked in storage somewhere. I’m not exactly sure how to obtain those, that is a question I need to ask him at some point.

The day I learned I needed to change PCPs I was angry and scared. Having a rare condition can do that to a person. It’s hard to find doctors that understand or that are willing to take the time to learn about them, or that even want to. It took me two tries to find a Hematologist that understood Antiphospholipid Syndrome. My first Hematologist left me with an official diagnosis, a lot of questions, and a big ‘see you in 3 months.’ He would not answer any questions I had and did not see the seriousness in my condition because he was not familiar with it. Luckily Dr. D, had dealt with one other patient in the 30 years he had been a doctor that had APS so he was at least familiar with it. Dr. D was a new doctor when he became my doctor.  I was 6 weeks old, he saved my life then, and in a way, he saved my life this past year too. He did a lot of hand-holding over the first few months of my journey. It was a scary time, I know not many doctors would have taken the time he did to assure me I was going to be okay, but he did.

When I started my search for a new PCP I had a few requirements I was looking for. First I needed someone close by. We had spent months driving 1.5 hours to see Dr. D for my monthly appointments. He was over seeing my INR but we had found an independent lab down here that was doing my draws and then faxing him the results each week. It worked, but it was not perfect. After I started narrowing down practices that were covered by my insurance I started researching various doctors. Your name came up fairly quickly, because you’re in the C’s. The more I read, the more intrigued I was. A newer doctor, intelligent, I stumbled across your residency biography and interests and you immediately sounded like you would be a good fit. I considered it a benefit that you were a new doctor because I felt that it gave me a better chance at finding a PCP with more up to date information on APS. There were a couple of others that were on the list so I took a couple of days to decide, but eventually I decided to make an appointment with you. I called HFP to make an appointment, and the lady that answered the phone, attempted to set my appointment up with another provider. I quickly explained to her I had already chosen which provider I wanted to see and asked if you were accepting patients still. She excitedly said yes and set up my first appointment.

So there, that’s the real answer, to that first question you asked me, ‘Why, Us?’ and why I answered with “Well, this practice because it is close by, and you specifically because you are a new doctor, because of your clinical interests, and I am hoping that combination will give me a better chance of having a doctor with up to date information on APS and that I will be of interest to you.”

Appointments, even though mine are longer than average, are never long enough for me to say thank you adequately enough. Thank you. Thank you for meeting my expectations at that first appointment and every appointment since then. Thank you for being there on the days when I’m flaring and need to make impromptu appointments, and I’m having some of my worst days. It helps to have a doctor that is as compassionate and caring as you. It also means a lot to have a doctor that can take one look at me and tell if I’m having a ‘bad flare’ or if I’m okay. I know part of that is because I see you so often right now.

Thank you for taking the time to see me as a person, not just an illness. A lot of times when a person is being treated by a bunch of specialists for a chronic illness, that is what they become to their doctors, or at least that is how it seems. Thank you for having the ability to laugh and having a pleasant personality. Those things are important especially to patients that have to see their doctors so often.

Thank you for helping me get to a full diagnosis, and seeing that Lupus isn’t a textbook condition that takes the same course in every patient. So many doctors get locked into believing it has to present in a specific fashion and forget to look beyond lab results and listen to their patient’s symptoms and family history.

Thank you for being an amazing doctor, and for being exactly what I need in a PCP. In a lot of ways, you remind me of Dr. D, and in a lot of ways, you are completely different. Both of those things, are the perfect balance. It was difficult transitioning from a doctor I had a life-long relationship with to a new doctor, but you made that transition easier in a lot of ways. Sometimes I forget you’ve only been my doctor since the end of January.

Thank you for going the extra mile, for remembering the little details, and making me feel safe.

 

Sincerely,

Dorothy (Oh I’m sorry Nicole)

Appt with Dr. C and The Student Doctor

Yesterday I had an appointment with Dr. C, my Primary Care Physician. This appointment took the place of an appointment that was scheduled for later in the month as a follow-up for my Chronic Illnesses and was meant to touch base over notes from my Rheumatologist, update him on where things stood there, and to start the process of getting my immunizations updated in preparation of starting Imuran next month.

This appointment turned out not to be a normal appointment. Not that my appointments are anywhere close to normal though. When Cindy, the nurse took my vitals at the beginning of my appointment she explained that Dr. C had a student doctor following him and asked if I minded her coming into my appointment with him. I said I didn’t mind at all. Truth is, it did make me nervous, but I also realized the value that is in the exposure student doctors get in their rotations during their rotations.

Cindy left briefly to go get the INR machine and she came back and we checked my INR, 2.5, great, low. No changes to my diet, no changes in my meds other than this was the second week of a lower Plaquenil dose. My target range is 3.0-3.5. I had gone 3 weeks teetering right around perfect, then all of a sudden bam, low. Some days I get so frustrated with APS, and Warfarin and this whole balancing act. My only theory is that I’m in a mild Lupus flare and perhaps that is impacting my INR.

After Cindy left, Claire the student doctor came in and talked to me while Dr. C was finishing up with another patient. She asked about Antiphospholipid Syndrome, Lupus, and how they presented in my life. I gave her the whole story. She excitedly exclaimed “WOW, that’s exactly how they teach it, and how it is in the textbook.” I was impressed. Finally! Finally doctors are being taught the truth about this damn disease! Not to sound ageist or bias but one of the best decision I made about my health care was the decision to go with a new (young) doctor when I had to replace my Primary Care Physician back in January. Now to make an overly technical analogy about it, it’s like upgrading your computer, you don’t usually replace your old system with an old system, you usually buy a new computer when you need a new one, so when you need a new doctor why not find a new one with the most up to date information who just recently came out of school. I chose to go with the new vs experience because of the updated information being taught on APS in recent years. Of course experience sometimes wins out, but It is amazing the experience they gain from med school, internships, and residency.  Talking to her was interesting, she had just done a small rotation at Duke Pediatric Rheumatology  and was familiar with Lupus and APS from being there. She asked me why I thought my INR had dipped and I told her my theory on my Lupus flare. She took notes and did her own exam and then went out to discuss with Dr. C.

A little while later Dr. C came in and did my actual appointment. My appointments with him are always longer than average. This one turned out to be closer to 2.5 hours long by the time it was all said and done. Dr. C has a good sense of humor, and that has helped a good deal. I can’t handle overly serious doctors. They intimidate the crap out of me. As he came into the appointment he settled in on his stool and leaned against the wall, in that manner of ‘yep I’m going to be here awhile.’ Then he made some comment about my INR, and I said “Uhh the wind changed? Uhm I looked at something green? The moon is full?” He laughed and I said  “Seriously, I think my allergies have my immune system pissed off and is causing a small flare” He agreed that this was likely the culprit as we have seen this happen in the past. This is by far not the worst of my flares and we decided the best course of action was to treat my allergies, so he prescribed a nasal spray. Then we talked about the referral put in for the group of therapists I want to work with, so I should get a call from them with an appointment in about 10 days. It has been a stressful time in my life, it’s not just the diagnosis, life really has been one stressful thing after another for the last few years. It’s been 3 years of things I really need to talk to a therapist about and to help sort through. It’s time. But a good part of it is due to the anxiety and the adjustment of life with chronic illness and there is no shame in that. I will come out of this a stronger person.

We discussed my Rheumatology appointment, and I gave him copies of my lab results from the tests they ran. I told him that Dr. L was a little miffed as to why my Lupus test results were coming back negative, that I have 7 of the 11 diagnostic criteria for a diagnosis for SLE and that is why Dr. L had diagnosed me with SLE. I also made mention that he had reached out to the folks at Duke to see if there were other ways to test me, as he felt there as something genetic going on within my family causing us to test negative, as it is a trend that seems to happen with us. We discussed more about Lupus and it’s impact in my life and how it and APS coexist.

We talked about Imuran and that Dr. L plans on starting me on that in May. It may require me to bump up my Warfarin dose so we talked about the need to schedule an INR check 3 days after I begin Imuran, and then a week after. I have my INR checked weekly so that will not be too big of an issue. I’m just concerned about the increased Warfarin dose, my standard daily dose is 15 mg a day when my INR is behaving, to keep my INR around 3.

Partway through my appointment Doug asked Claire how she was enjoying her time at the doctor’s office and she said she was enjoying it and learning a lot and thanked me for letting me be involved in my appointment. Her plans are not to be a PCP, she is headed to be an Ear Nose and Throat specialist, but said now anytime in her classes they discuss APS or Lupus she will always think of me, and remember our discussions. Dr. C then proudly (at least there seemed to be pride in his voice) exclaimed ‘She knows her stuff and she is a good patient to talk to, she is open and honest, and she talks to other patients in her support groups and reads a lot of blogs about her conditions but don’t believe everything she says she’s a liar.’ This was said with a complete mocking sarcastic tone, and I followed that in suit with a heart filled mock handover my heart ‘oh that hurt Dr. C!’ We laughed and he goes ‘And I blame Doug for my sarcasm’ to which we all broke out in laughter. Seriously any other doctor of mine had called me a liar even jokingly I would’ve been highly offended, none of us have that relationship. Dr. C though, he makes me feel comfortable, he makes me feel safe to be myself. I’m not just a Lupus patient, or that patient with APS, or ‘OH god it’s that patient with the chronic illnesses again’ Or at least if I am he never lets on that he thinks that if he does.  Patient-Doctor relationships are important and it is important to feel at ease with your doctors. I know I tend to see my PCP more often than I do my specialists and a big part of that is he makes me feel more at ease. My specialists are all tall, older men, who are very serious and intimidating. It took me several appointments to get my Hematologist to smile, I’m still getting to know my Rheumatologist, and my Opthalmologist only needs to see me if I’m having eye problems. But for the most part they all are very serious, intimidating, and see me as a condition not as a person.

Even to Claire, I will forever be remembered as that patient with Lupus and APS. But more importantly, and exciting, I’ll be the patient that helped make these conditions real to her. I’m not sure how often she will see APS in her specialty, I suspect she’ll see Lupus more often in the context of some of the secondary conditions that can present with it, with the inner ear. Though APS can affect the inner ear as well. Especially for those who have micro-clotting issues.

I received two vaccinations while at the appointment yesterday, the pneumonia vaccination and the meningitis vaccination. When I asked what sort of side effects I could expect from these vaccines Dr. C said with me, he had no idea. He told me to schedule my next INR check with the nurse practitioner and to schedule a follow-up appointment with him in  1-2 months.

This wrapped up his part of the appointment, and we said our goodbyes and then the nurse came in and gave me the shots. I went to the checkout desk and scheduled my next two appointments.

My appointment next week is for monday afternoon, and I scheduled my next appointment with Dr. C for 3 days after I should start Imuran. That is the suggested time to have your INR checked for concomitant use of Imuran and Warfarin. It is known to require an adjustment/increase in warfarin dosage.

I left the office pretty thrilled I had the chance to talk to Claire, the student doctor. She is going to make a good doctor, I’m glad I had a chance to cross paths with her.