My Boyfriend

I ran into my Pulmonologist in the hospital last week as I was leaving a friend’s room. She just had a baby girl. I was surprised to see him and didn’t know that he came to the hospital to see patients.

“Hey, how are you doing?” he asked as we began to walk together. We both said we were doing well. Oh, the title. I have no romantic interest in this doctor, I’m just silly and sometimes call people by a different name or title. Somehow he got the name/title “my boyfriend.” I don’t call him that, of course.

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I see him for my sleep apnea. I still don’t know how I ended up with sleep apnea. I don’t even snore. I can’t use my humidifier (I have a full face mask since February of this year). Sometimes my nose gets stuffed/ inflamed and I need to breathe out of my mouth so I can’t use the nose pillows. I’ve been so tired for years that if all I have to do is wear a silly mask while I sleep, I will. And I really don’t like the sensation of waking from sleep and feeling like I’m struggling to take a breath. At first I was surprised that I didn’t feel claustrophobic when I wore it. But lately with the miserable humidity, I can’t use the humidifier or the mask. The humidifier blows warm air in thorough the mask so I haven’t been using it. Just paying a “co-pay” for that and my machine monthly. But not being able to use the mask in two days really concerned me. He told me a quick story about how a patient mentioned how he would put ice & water in the humidifier. Instead of just water. That was an awesome idea & I couldn’t believe it never occurred to me to try it. It feels much cooler, doesn’t keep me up at night, and I can breathe and not feel like I’m only breathing in really hot air.  More

Atrial Fibrillation and Warfarin (Plus Kidney Update)

An Atrial Fibrillation is basically an irregular heartbeat which can cause poor blood flow to the body. AF is associated with heart palpitations, shortness of breath, weakness, fainting, chest pain, and/ or Congestive Heart Failure (CHF). The risk of stroke for people with AF increases five times and can even be a greater risk if high blood pressure is also present. The risk of stroke goes up each year. There are different treatments depending on the Individual’s risk for blood clotting and stroke. Some people are advised to take baby Aspirin, others may be prescribed Anticoagulants like Warfarin, the use of pace makers may be necessary, etc. Warfarin is a medication that helps reduce the risk of blood clotting and stroke. The danger in using an Anticoagulant is that it may increase the risk of major (sometimes fatal) bleeding or can cause a blood clot if not monitored carefully. This is very general information and does not include all the risks and side effects of being diagnosed with AF, the use of Warfarin, or other Anticoagulant medications. If you have any questions or concerns, you should speak to a medical professional.

This is based on my experience with AF and Warfarin. A couple of months ago, I started to feel like something was wrong with my heart beat but I wasn’t sure how to explain it. I couldn’t even tell the doctor if my heart was beating faster or slower. It was just weird. Different. On one of my hospital visits, I told the Hospitalist about this and he said they would monitor my heart during my stay but no one ever mentioned it again so I just let it go. I’m not sure if they were really monitoring it or not, but the tests that they performed previously came out fine. I figured it was just another strange Lupus occurrence that remains undetected (which makes me look like a Hypochondriac). My PCP (Primary Care Physician) later gave me a referral to see a Cardiologist.

By the time I saw my new Cardiologist, I had already completed a recent EKG and Echocardiogram during one of my hospital visits. The tests came back fine. He wanted me to wear a holter monitor for two weeks to record any “events” that might occur. For the most part, if I felt anything strange with my heart rate, I was supposed to manually record it on the device. There was also a drop down menu for me to record what I was doing at the time of the “occurrence.” It was a real pain to wear that thing for 24 hours a day for 2 weeks (actually, I could take it off while I showered), but still. If I remember correctly, the only thing that the monitor would pick up on its own was heart arrhythmias. I was so happy the day that I could finally take that thing off. I figured I would receive a phone call from my Cardiologist’s office to tell me that nothing was detected. Instead I received a call advising me to start taking baby Aspirin and to schedule an appointment as soon as possible.

I went in the following week. My Cardiologist made it very convenient for me by agreeing to see me on the same day that I was going to be at the clinic for an appointment with my Neurologist (even though he didn’t normally see patients on that day of the week). He told me that the holter monitor had picked up an Atrial Fibrillation and that he wanted me to talk to my PCP about prescribing me Warfarin and giving me a referral to “Health Management” (the department that I work in) to monitor my INR levels. He kept saying that I was too young to have this problem and that this was more common for elderly people. I kept thinking that anything was a possibility for me despite my age because of Lupus.

I continued to take baby Aspirin until I saw my PCP. My PCP asked me if I really wanted to be on Coumadin. I didn’t however with Congestive Heart Failure, high blood pressure due to my poor kidney function, as well as my other health issues, I did not want to have to worry about having a stroke too. Especially because I was told that the risk could increase by 3% each year (or something like that). He gave me a prescription for Warfarin and told me to make an appointment in one week at Health Management to monitor my INR levels. When on Warfarin, it is extremely important to follow up and to take the correct dosage of medication. The INR levels will show if your blood is too thin (risk of bleeding), too thick (risk of clotting), or just right. I had three visits so far, weekly appointments. The length between appointments that I have seen so far are anywhere from 3 days, 1 week, 2 weeks, 1 month, and 3 months. The last time I had an appointment (last Wednesday), my INR level was higher (which was a good thing), but my blood was too thin. Usually when they prick my finger, the nurse will have to gently squeeze it so that a little bit of blood will come out. This time, the blood was flowing and was going to drip so I turned my finger so that it wouldn’t fall anywhere. I then had to go to the lab to make sure that the INR level that the machine reported was accurate because it didn’t make sense for my blood to be that thin when my levels were higher than the last two visits. Again, my dosage of Warfarin was increased but just for the day.

INR Testing. I found this photo under a web search under "images." The caption said it came from gastroruas.com

INR Testing. I found this photo under a web search under “images.” It said the image came from gastroruas.com

All I know is that I need to be careful not to get cut or scraped (anything which would puncture my skin and cause bleeding), and if I hit my head I need to go to the ER in case I have internal bleeding. I just realized yesterday when I was thinking about making a dentist appointment that I can’t forget that I’m taking Warfarin. Depending upon what I may have to see the dentist for, I might have to either modify or stop taking the medication before the appointment. I know that when people on Warfarin have upcoming surgeries, they have to stop taking the medication. I’m not always the most graceful person. If possible I love to hike (where I may get scraped by a tree branch, slip on mud, trip over an exposed tree trunk), all of which has happened in the past. I also like to boogie board and paddle board (I would need to be careful not to get scraped by coral especially if I “wipe out” and am pushed into a big rock or coral while underwater by the strength of the wave). I’m just hoping that they’ll find that the AF was just a strange occurrence that happened during a Lupus flare and that I can get off this medication. There are just too many things for me to worry about. Since I’ve been taking Prednisone, I started getting a lot of scrapes on my hands. I could just softly hit something (like a table) by accident and end up bleeding. The last time this happened, my hand hit the end of the table so softly that if not for the blood, I wouldn’t have even realized that my hand even touched the table. The good thing is that’s not happening as often as it was before when I was on a higher dose of Prednisone. Earlier last week (before my appointment to check my INR levels), I was scratching my arm when all of a sudden it started bleeding a lot.

And here’s a random update regarding my kidneys… I received a short letter with lab results from my Nephrologist. He said that my “urine albumin leakage” (as he calls it) is much better and I could reduce my Prednisone to 15 mg. (I haven’t seen him yet to let him know that I have already started doing that per my Rheumatologist). He always has a graph to give to me which I like a lot because it also shows previous results. Right now the results are fabulous! I am so close to the point where I can probably stop taking most of my medication. I’m not sure what the unit of measurement is but on 12/14/13, my urine albumin leakage started off around 4300. Since then it has been going down gradually but between March through the end of April it significantly dropped to around 600.

Atrial Fibrillation Part II

I had my appointment today with my Cardiologist to go over the holter monitor I had to wear for two weeks and about the irregular heart beat that was picked up (Atrial Fibrillation). He explained everything to me and advised me to speak to my PCP about this so that my PCP can give me a referral (to be seen in the department I work in), probably put me on Warfarin, and have me follow up with the referral within a week or less. I was lucky enough that a spot was available tomorrow. I just wanted to get everything started before I have to go back to work next week Friday. I’m not ready however according to the Benefits Specialist who has our documented FMLA hours used replied to my email letting me know that as of May 2nd (when I return to work), I will not have FMLA anymore. I sent him another email just to re-confirm that but instead of asking for that, I asked him if I would be at zero or if I was already in the negative. I really don’t know how this happened since he gave me my FMLA unused balance over the phone before I submitted my TDI forms. When looking at my calculations, I thought I was safe to say that I had two weeks saved up that I would need to last me until mid November when I would need to get the FMLA re-certified.

I’m really not that thrilled about Coumadin, especially at my age. I don’t need to take a medication that is very important to manage as you don’t want your blood to clot nor do you want it to be too thin (especially if you fall and get a gash and start bleeding out). I remember reading someone else’s blog that also has an AFib and on Coumadin medication. If you have this, could you please tell me more about your story. Is it going to make my Lupus worse? Did you notice any more or worsening symptoms after you started the medication? Did you experience any crazy, notable, or merely something you had never experienced before while on Coumadin? I have done some research on it after I received the initial call from my Cardiologist’s nurse but most of it is “textbook” and because I have Lupus, I now know better than to listen to only what the textbook says. Especially since Lupus manifests itself differently in every individual at different levels. And sometimes the textbooks do not mention everything you may experience and Lupus is never predictable anyway.

I liken Lupus to a hurricane. It comes full force at you, devastating every thing that stands in It’s way (any organ, tissue, one’s nervous system, joints), anything and everything it so whimsically chooses. And since everything that I have mentioned are a part of “me,” and possibly “you,” we are essentially under a vicious attack at times. After the first round getting my Lupus and Membranous Glomerulonephritis under control, I was doing much better in comparison to what I had at that time come to terms with as my newly defined “life.” I was eventually told by my Rheumatologist and Nephrologist that I was in remission yet I still had to take a few medications (nothing heavy duty) and all of the symptoms of the disease didn’t go away. However looking back, it was good to still be able to go to work and not have to call in, not needing FMLA for years, and it was no longer necessary at that time to take any of those extra prescriptions that made me feel like I had a “pharmacy” in my kitchen cabinet. Many times back when I was going through my first major Lupus flare, I often wondered if the side effects from the medication was even worth taking it. The pills were supposed to basically slow down the progression of a disease that had no cure and also had the potential to lead to more diseases that have no cure. The Prednisone was the worst for me and as I lie there in bed back then, I just wanted to hurl those pills into the trash. My quality of life was nothing, I felt like I was dying inside, not only physically but mentally and spiritually. I felt like “the living dead.” But finally the hurricane “passed through” and my Lupus ended up retreating for quite a while, I naively believed that I was in the clear forever and just had to deal with different pains (ranging from “tolerable” to “severely cruel and intolerable”), to nausea, exhaustion, etc. It’s crazy how sometimes it takes me a while to name all of the different symptoms I have due to Lupus since I’ve lived with it for so long now. I don’t remember life without all of these restrictions and limitations. After being weaned off all the medication except for the few, it felt like the hurricane was finally over. I was able to do more than I could in months. But just like a hurricane, I have found that it was the eye of the hurricane I was living in while I was in remission. As soon as the eye had passed, the worst part of the storm was quickly approaching to destroy more than it previously did.

I’m not sure if I’ve said this before but I really don’t like people to ask me how I’m doing. I have gotten tired of saying, “Ok,” “better than usual,” “Eh,” “better in some ways, worse in others,” etc. I am through trying to explain to everyone what it’s like to have Lupus and exactly how I am feeling that day. Who wants to hear a “list of complaints” anyway? Isn’t that what it seems to come down to if you have never experienced anything other than good health, maybe bronchitis or a severe cold at some point in your life? Today a handful of people asked me how I was doing, I tried to avoid as many people as I could. My nurse at the Cardiologist’s office knows me and asked me how I felt. Can you believe that she asked me that same question about five times? So I had to find five different answers, or I guess I could’ve used the same one as she was not listening to my very brief answers. It was very irritating at the very least. I’m not excited at all, more so a little afraid and disappointed that I have to start Coumadin. Sometimes I want to get a Girl Scout sash and make illness, procedures, and surgery badges. Mines would almost be full by now. A useless and morbid thought, yet if I get one more diagnosis I am going to scream. Someone asked me the other day if I had Diabetes and my answer was, “Not yet.”

Another beautiful sunrise.

Another beautiful sunrise.

Atrial Fibrillation

I took this photo over a year ago after a fun day at the beach looking for shells.

I took this photo over a year ago after a fun day at the beach looking for shells.

I received a phone call from my new Cardiologist’s office today regarding the holter monitor I had to wear for 2 weeks. He wants to see me sooner than our scheduled August follow up to discuss the findings. I have an Atrial Fibrillation, an irregular heartbeat. I’m a little concerned yet know that worrying about it won’t change anything or do anything positive for me so I should just wait until the appointment and listen to what he has to say. My first thought was “Warfarin,” as I work in a department that does INR/ Coumadin testing for many patient’s with Atrial Fibrillation as their main diagnosis. With me being prone to falling nowadays, I don’t want to take another medication, especially not a blood thinner. Then thoughts of having congestive heart failure in the left valve came to mind. All I could think of was, “Are you kidding me?” Just one more thing to add to my list. I know it may not be that bad so I shouldn’t worry about it. It may be nothing at all. The Cardiologist’s nurse called me back to confirm the appointment because he doesn’t work on the 23rd but it sounds like he’s booked out a ways and I had mentioned that I had another appointment that day. So he agreed to see me and wanted her to tell me to start taking Aspirin. I questioned it because I’ve been told from the very beginning not to take Aspirin, Motrin, Ibuprofen, pretty much anything besides Acetaphetamine. She said she was pretty sure he still wants me to take it to decrease chances of having a stroke however my kidneys and their progress is my number one concern and priority right now and I’m not going to compromise that because of a doctor’s oversight.