Sunday, August 15, 2010


I'm feeling tired today. When I got transfused on Friday, I felt more energetic in the days following the transfusion. Now, I feel tired again. Not as tired as before...but still tired. Dear God, I seriously don't have time for a lupus flare right now (does anyone with lupus ever have time for a flare?)

But I have so many things to do- NKE exam, transplant...even my upcoming trip to florida (which I feel I REALLY need).

Please lupus tests, please come back ok.

Saturday, August 14, 2010

Ah c'mon

I got a call yesterday morning from Stella, one of my dialysis nurses. She asked me if I could come by the hospital to do a cbc. What? When I was at my rheumatology appointment I SPECIFICALLY asked the fellow/doctor that saw me that I had gotten a blood transfusion the week before and I needed a repeat cbc done. Sure, sure, she said.

I told Stella to check again which she did. She saw my c3/c4 as well as my double strand DNA blood work "pending", but nothing for cbc. Bah! I couldn't go downtown to the hospital on Friday as my Dad was unable to take me, so I have to go and do it on Monday. Geez!

In other news, I called my pharmacy and they managed to get a hold of the fellow and my medication dosage problems were fixed. Thank Goodness.

I felt a bit better last week, but I feel like I'm getting tired all over again...almost as if my hemoglobin is perhaps dropping again. If I had gotten the CBC done on Thursday like I wanted, Stella could have had an idea as to how urgently my appointment with Dr. Cino, gastroenterologist, should be. I just want it done now. I'm supposed to go to Florida at the end of the month and I really want to go. I definitely need a break...and we're only going to be away for about 10-12 days.

Hopefully everything works itself out. It usually does..

Thursday, August 12, 2010

This Just in

I went to the pharmacy today to pick up my prescription. When I got there, I found out that the pharmacy does not have that particular medication, and therefore they would need to order it in. It would arrive tomorrow. Ok, no problem.


"Um ma'am, the doctor didn't write the required dosage on your empracet. We don't know which one to order...we'll have to call your doctor and wait for them to call us back. Usually that takes a few days".


Is it possible that some things just weren't meant to be?

I went to see my rheumatologist today. As per their normal protocol, I had to see the lupus clinic nurse first. She took my blood pressure, asked me a bunch of questions, including questions about my diet. She seemed surprised to learn that I'm not currently being followed by a dietician (no additional appointments needed, thanks). I'm not sure that there is anything substancial that a dietician can tell me now that I haven't already learned over the last 14 years. I got slightly lectured on diet, cholesterol, etc. It's always a bit of a pain to be told things you already know...but I guess everyone needs to do their job.

I went on to see the fellow first. She asked me which medications I'm on. Le sigh...the nurse I just spoke to asked me all of that. I told her that the nurse asked me all of that and I gave her all the information. The fellow flipped the page and saw the written notes.

After a few more questions and reviewing my blood results from last week, she explained to me that my c3 c4 values were a bit low *gulp*. They were not totally low, but not within range. An additional blood test was done today to re-check it. I pray that I'm not having a flare. I've been flare free for some time and I'd like to keep it that way. Cross your fingers for me.

In the meantime, Dr. Fortin came in soon after and suggested I take percocet for any joint pain since I cannot take naproxen. I should have asked if there is anything more permanent that I can take, as doping myself all the time isn't necessarily the best option. In the meantime, I'm content to take anything that will help with the pain.

If you've been following my blog for a while, you'll have read stories about all my hick ups that occur when it comes to transplant. Let's revisit/summarize.

1-The first time, we were good and ready to do the transplant...and then I had a lupus flare. Lupus flares push transplants back. This particular flare consisted of a growth on my brain, which resulted in me not being able to walk, move my arms properly, or talk at a normal rate and without drooling.

2-The next time, I was fine, but then my Dad was busy with work for a while, so that put the transplant on hold.

3-After that, both Dad and I were willing and waiting to do the transplant, but Dad was found to be ineligible due to his borderline blood pressure.

4- I was put on the transplant list. My blood type is B-, and I have a lot of antibodies in my blood, so I was forcasted to essentially expect to be on the list for at least 10 years.

5- Here I am after just having finished all of the testing...then I have to get a blood transfusion (which, at the very least, will require me to re-do the cross match with my brother). I have bleeding in my stomach, and my c3 and c4 are not within range.

I spend good amounts of time being "fine". Then, when the word "transplant" comes up...something always seems to happen. What's up with that? Am I destined to be on dialysis forever? Does God have another plan for me, or perhaps He simply doesn't want me to have this surgery? I'm a strong believer in the fact that if something is meant to happen, it will happen, and if things are not supposed to happen, they won't...but geez..I really want a kidney right about now. I really want to travel and do spur of the moment things without having to think of dialysis. *sigh*

Tuesday, August 10, 2010

Results are in...

...for the stool test.

Positive for blood.

What the heck is going on in my stomach? I wonder where the bleeding is coming from. While this is not good news, I'm sure many people who suffer from illnesses, chronic or otherwise, feel a sense of relief knowing that the source of mystery for so long finally has a source/an answer.

The likely culprit? Naproxen. To be honest, once I did the stool test, I had a feeling that it would come back positive and I know from past research that naproxen can cause bleeding in the stomach. I've been told to stop taking it, but I in all honesty ran out of naproxen about 3 days ago. I didn't run to the pharmacy to buy more when I knew I ran out...I wanted to wait for these results to come back.

That said, I've been feeling the effects joint pain wise. My knee and hip hurt. There's gotta be some sort of alternative. I'll have to ask the rheumy when I see him in two days. In the meantime, I'm going to call my boss and explain to her my MIA status for the time being...

Friday, August 6, 2010

I am transfused

I got my blood transfusion today. So that will definitely bring my hemoglobin up. Doc Richardson is also going to look at my mmf and my prednisone, as they are both known to drop hemoglobin as well.

On the way home, I asked my dad to stop at the 7-eleven to buy me a slurpee. While inside, another lady exited the 7-eleven and approached my half open window as I sat in the passenger side of the car.

"DO YOU HAVE ANY SPARE CHANGE FOR THE BUS?" she asked loudly. I told her I didn't. "WELL CAN YOU CHECK YOUR PURSE?!?!" she asked, again loudly, and in an agitated manner.

Mmmyah right. I'll pull out my wallet so this woman has the opportunity to stick her whole body into my open window and steal my wallet.

"I don't have any change" I responded.


Oh man..what's taking my dad so long with that slurpee??

"NO. I just got out of the hospital and I don't have any money..!" I said, a bit louder than before.


"LISTEN. I just got out of the hospital. See?" I pulled up my sleeve to reveal my gauze and tape covered fistula. "So please, I don't have any change so please leave me alone"'

she responded "Oh ok. Well then..." and then she sauntered away.

When my dad returned a few moments later, I told him about the ordeal. He told me that she had just gotten kicked out of the 7-eleven, probably for harassing customers.

Can you check your purse. WTH?

Thursday, August 5, 2010

The "current" verdict is....

Get a transfusion.

As I mentioned, I had to repeat my bloodwork and therefore got a repeat cbc done. On tuesday, my hemoglobin was 64 (or 6.4). Today, two days later, my hemoglobin is down again, 62 (or 6.2)

How very distressing. Why is it that everytime I'm on the right track where transplant is concerned, something always comes up? My nurse called me this afternoon and told me the news, and that my nephrologist Doc Richardson wants me to get transfused.

I felt so empty after. I don't want a transfusion. So I decided to call my transplant coordinator (Julie Cissell) and see what she had to say. She reassured me. Worst case scenario, I develop a bunch of antibodies and I need to go on some sort of a program for that which typically lasts 5 months. I don't like the idea of waiting 5 months...but at the same time, I've been waiting this long. What's another 5 months I guess..? That is, of course, assuming that the worst case scenario occurs. Let's hope it doesn't.


The mysterious, ever dropping hemoglobin

I'm sad to know that as of yet, I still don't have any answers as to why my hemoglobin is dropping. I just surrendered another 8 vials of blood to my clinic which is required for my up and coming (and slightly doubtful) trip. Unfortunately, even though I brought blood work in at the end of July, the clinic in Florida wants bloodwork that was done within the last 30 days...and the bloodwork I did in July does not qualify.

I went in and saw a doctor today who suggested I do a stool test. Perhaps, due to one or some of my medications, I'm experiencing some sort of slow bleed in my stomach, undetectable to the naked eye. So, I'm going to do that and submit it as soon as possible.

Some of the drugs that I am taking that are suspect are Naproxen and (obviously) prednisone.

My protein levels are fine and my platelet levels are also fine. I am not (visibly) bleeding from anywhere. Does anyone have any suggestions??? As someone currently being worked up for transplant, I am trying to avoid a transfusion at all costs...!

Sunday, August 1, 2010

Hair progress

So I'm still working on taking great care of my hair. As I may have discussed previously, kinky hair is quite fragile and needs to be babied. In addition to that...I have an autoimmune illness. I'm sure that doesn't help either. That said, my hair has gotten thicker and I'm quite happy about that. I'm going to attempt to post both pictures that I have taken with my blackberry. The first pic was taken on march 14 2010 and the second picture was taken today, August 1 2010.

Sent from my BlackBerry device

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