What the…???!!!

It seems like it was about two weeks ago that my Rheumatologist was trying to get in touch with me and we were playing phone tag for days. It was about lab results so I was curious as to what was so urgent that he was calling me about labs now? But it was nice to think that any doctor would take the time to go over his patients labs with them after the initial visit. It ended up that he was reading my labs results that my Nephrologist ordered. He will always send a report to my PCP and Rheumatologist. So my Rheumatologist received those reports I had just gone over the previous week with my Nephrologist. The labs showed that the protein being filtered through my kidneys had greatly reduced and my kidney function went down a little. This is after restarting Plaquenil 200 mg/ twice a day, another 1,500 mg (full dosage 3,000 mg) of CellCept and Prednisone 60 mg and taper down 10 mg every two weeks until I get to 10 mg and I would see him again on February 4th I believe. He initially said he had just placed labs and to do them today. It was to measure protein and kidney function again but when he realized these labs were just done a week ago he told me to totally disregard the labs. Not even do it before our next visit, he hasn’t ordered anything more than the labs he ran on me the day I first saw him in November. The reason I mention these things is because he wanted to base his decision about changing my treatment plan due to labs looking a little better overall that was done a month apart and I don’t see him again until February. So at the time there were still about 1-2 times that I could do it and I bet it would go up and down just like my Nephrologist said. Since we were looking at reports from my Nephrologist- let’s call him Bob, I asked my Rheumatologist if he received Bob’s message about who was going to set up the Infusion because if no one was doing it he would set it up for me. My Rheumatologist sounded confused and asked, “But your labs are better. Why would you still want to go through the chemotherapy.” He proceeded to tell me that we could continue with the CellCept (you know- the one that “failed”), and throw another medication in the loop. Oh the perks! I said I was still considering it because when I went over these labs with Bob, he said that he would still go with the chemotherapy because my labs go up and down all the time from month to month. I asked him in a couple different ways if I should continue on this course since we seen an improvement and monitor the progress or results and make changes as needed or if he would still strongly suggest the Cytoxan. Bob asked me on that visit why the long wait? And asked me what my issues with Cytoxan was. I said there were a number of things but what I realized is that if I have the possibility for my kidneys and maybe even my Lupus to go into remission then I have to take it. It’s been a long time and I know it can be even longer. Even if my kidneys only go into remission for a couple of years or less, that’s still better than the protein destroying my kidneys on an almost daily basis. I didn’t want to waste any more time. I just wanted to do it already. I felt like I had the luxury to process a lot of what chemotherapy entails to me. I am not one to deal with anything negative. I would rather suppress it. But I knew I needed to process this one the right way or I might end up feeling like I’m going to have a breakdown later when I’m going through it. So my Rheumatologist said he would write a message to Bob and tell him the course of treatment he thinks I should do. So until I actually see him again on 2/4, I will not know what I’m doing. And if it is Bob that needs to talk to me about that then I have to wait until around 2/16. It makes the baby issue more unsettling to me. I mean sure I don’t want to go through Chemotherapy. Nobody does. But when I have three doctors telling me that they agree, the benefits outweigh the risks including getting cancer (which runs in my family). So it upset me that we had this in depth conversation about it and he kept acting as if it was so dire and I had to do this or it would be a shame to be on dialysis at 50 years old. And then the use of Prednisone among other things in one month makes him think they will continue to get better? I had no protein in my urine for the first time I knew of since 2001 just a few months ago and my kidney function was down but that’s still a good deal. Then the next time I saw him within maybe 3-4 months, my protein was high again and still bad kidney function. If there is a way that doctors can stop saying the worst things and are so quick to prescribe chemotherapy and then when there’s a slight improvement there’s all of a sudden another option that was clearly not an option before. I was crying everyday even if I shed a few tears as a thought crossed my mind or I remembered something for over a month. And what? Was it just not as serious as he made it sound? You can’t just throw these kinds of things at people as their only option unless they are sure! It’s not fun and games. I was referred to an Oncologist  when I lived in Las Vegas,  my doctor said it was because, “I think you might have cancer.” And with family history of all types of cancer run in my mom’s side of the family our generation has been lucky so far- knock on wood.

snapseed

I did so bad on the Prednisone this time. I started at 60mg and my PCP brought me down an extra 10 mg early because I was having problems breathing, I never really got to lose all the weight or hardly any of it since I got off Prednisone over a year ago. I don’t have any more room to “grow.” My face: cheeks, chin, eyes, look swollen. Next Wednesday I can go down to 20 mg. I’m still on 30 mg now. I was soooo grouchy, emotional, I started to have the crazy vivid dreams again. I wonder if it’s the CellCept? I felt like I was having possible issues with that med too. They make me feel horrible and there are so many of them.

I am falling asleep over here. I will proofread later; I know that’s a little backwards but I haven’t written in a while. Take care everyone and have a Happy (upcoming) New Year. 🙂

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.