Tuesday, December 13, 2011

Follow up to my 2 Year Visit

So...last Thursday the 8th...a week after I had my follow up visit with Dr. Nan, she called to say that my blood work does not look all that great. My CRP (C-Reactive Protein) is out of whack. Normal is less than 5 and mine is 46. It indicates inflammation...somewhere. Could it be that since I had 2/3 of my stomach cut off (I had a vertical sleeve gastrectomy on Nov 16. You can read about that at www.wakemeupwhenimthin.blogspot.com) that I'm having inflammatory issues???? I think so. Also, after two years of NEGATIVE ANA tests all of a sudden I get a positive test. What the heck? How does that happen? Can it happen? Could someone else's name have been put on my little vials of blood?

Soooo...today I went to have another blood draw to see if the levels are coming down, still the same etc. I am praying that everything is going to go back to where it came from. I DO NOT want to go back on any more medication than I have to. I certainly don't want to start steroids again.

In a few days we'll see what they say.

February 19, 2010

 Couldn't figure out how to put this post and the following one at the beginning....so...this is from last year.

Things change day by day.

Today even after receiving all of the blood products yesterday my hematologist came in first thing this morning to say that things didn't really change from taking all that stuff. My ability to clot is a
REAL problem. They explained to me that I could literally bleed to death if I started and it got out of control.

It's very scary.

I was also supposed to get a new IV line today but because I will probably be here for at least another week and that my veins are blown the decision was made to put in a PICC line. Here is what mine looks like and here is an explaination of what it does... http://picclinenursing.com/picc_why.html

It was pretty cool to have it done. The gal came in and basically set up my room like an O.R. and was done within about 30 minutes. It will be GREAT not to have to be stuck every time they need blood.

Tonight I had scary experience. I got a bloody nose that would not stop. I ended up laying back so far that I was almost sliding off the bed. It took almost 2 hours for the bleeding to stop. My heart was racing and I had a hard time breathing.

While I was laying still for that Allison noticed that my PICC line was bleeding and that it had gotten on the pillow under my arm. The nurse came in and decided to change the dressig. Apparently it happens to some people but to me it almost caused me to convulse...I just kept laying there thinking I was going die laying on this bed with my head practically falling off the bed with a giant nose plug sticking out of my right nostril! What a sight!

The nurse came in and changed the dressing and said that she pulled a clot off the PICC line that was about 3 inches long. Nice huh?

I'm hoping that tonight will be better. Tomorrow I will have to get a blood transfusion and have another round of dialysis.

OH....as for my face...it is now peeling like I've gotten a bad burn. I wondered if I should blog about my illness like Nie Nie does about her burn experience. I thought about callling it "In Sickness and in Health."

One bright spot in my day was receiving a beautiful flower arrangement from my friend Donna.Thank you so much they are beautifull!

Keep those prayers ascending to Heaven.

February 18, 2010

BELOW is the first post I made regarding my illness. I can't figure out how to get it at the beginning of the blog so you'll have to read this and then go back to to the beginning of the blog. I've got one more to post from 2/19/10 and then you can read from the beginning of the blog.

I was admitted to Dallas Presbyterian hospital on Monday 1/15 suffering from vomiting and then the discovery that I was in renal failure. This hospital was the closest one with a dialysis center in the hospital. It's been blessing for me to be here...the doctors are wonderful and thorough and caring.

On Tuesday when my creatinin levels didn't come down it was decided that I needed to have a temporary port put in so that I could do dialysis as soon as possible. I was in the procedure for that by 9:30 a.m. and had my first dialysis from 1-3.

Erik was supposed to leave for a business conference in San Diego Monday and I encouraged him to go...that I'd be fine and he would be back a few days anyway. When he left I was just dealing with the vomiting and by the time he landed at noon our time I was in acute renal failure and being transferred in an ambulance from one hospital to another. He made the decision to leave San Diego and fly back to me that night which he did. He got in around 11:30 pm after having been up since 3:30 taking me to the
ER in the morning. How I love this man!

My initial dialysis made me feel a lot better and my kidneys put out a lot of urine...which they had not been doing. We were all hopeful that this would just be a short battle. I've had 2 more sessions including todays. Today was a little rough though.

I have a new complicaton unrelated to the kidney issue. It's a blood disorder called D.I.C. It's a clotting problem that can be caused by a variety of things, one of which is this autoimmune problem that I have. You can read about the illness here....http://www.merck.com/mmhe/sec14/ch173/ch173h.html

Today I had 4 units of fresh frozen plasma, fibren and platelets. It kind of made me fee crummy.

On top of that I am also dealing with an allergic reaction to Bactrim. It's caused me to look like the Crypt Keeper. My facial skn is so dry and tight that sometimes I cannot open my eyes and mouth. I look like someone has poured glue on my face and let it dry. NOT pretty. It's a shocking sight to most people who deal with me. I now have a picture of myself as my wallpaper on my cell so that I can show people the "real" me. You know it's bad when your Hematologist says.."Oh my...look at our face!" first thing in the morning!

I'm hoping for good news tomorrow but realize that this is going to be a process. They are telling me to expect to be in the hospital through next week.

Thank you all for your love and prayers! You'll never know how each little note brightens my day. I am humbled to know that so many people love and care about me. I'll try to keep the notes up to date as well as my status.

Saturday, December 3, 2011

Two Years Out

I had what amounts to my 2 year check up with my rheumatologist. Back in August when I saw her I had been off of my Plaquenil for a few weeks and was doing great. She wasn't too happy about me being off the medication and recommended that I go back on the medication since we didn't have a diagnosis and she didn't want me to relapse.

So I started taking the medication again for about 2 weeks. At that time I noticed that my eyesight went from being "normal" for me without glasses to being pretty foggy with or without my glasses. So I decided to stop taking the meds. I have had NO problems since then. I've had 2 surgeries and have managed to not experience any joint pain, muscle pain, no rashes or fever etc. I feel good about the decision NOT to take the medication.

My check up was scheduled for December 1 and my husband thought I should just cancel it but I went anyway. Of course the doctor asked me if I was taking the meds and I told her I wasn't. I told her about my experience with my eyesight and she tried to play that down telling me that only after people had taken the medication for 10 or more years did they have problems with their retinas and such. I told her that I didn't want to go back on the medication regardless.

She feels that because I am "undiagnosed" that I should remain on all this stuff for another 6 months to make sure I'm not going to get sick again. This may come back to bite me in the butt, but I'm just not convinced that I NEED to take medication for something that is undiagnosed "just in case". So she advised me that I needed to call her right away if I had an unexplained fever or rash. I assured her that I would and let's face it...I'm not all that stupid! I'm not going to let it get out of control.

A few weeks ago I looked down at my arm and thought I had a rash and honestly my heart sank and I thought..."OH NO!" It turned out NOT to be a rash at all but the impressions of my sweater on my arm! So anyway...if I notice any of those things I will call her. In the mean time...Just Say No to Drugs!

Monday, July 25, 2011

Giant Cell what?

.....Giant cell tumor of the tendon sheath. That's what the doctor thinks I might have on my left index finger. (that's "Pointer" for those of you who sang "Where is Pinkie"?)

This is not my finger but it's representative of what it looks like.

Pretty soon after I had began this odyssey with my health I got a lump near my knuckle on my left index finger. At first it was small but now it's like the size of a peanut. I finally went to the hand surgeon today to get it looked at.

There is also a possibility that this "mass" is a rheumatoid nodule. He said that given my history he would not be surprised to find out that after the "mass" is biopsied we find that it has been caused by rheumatoid arthritis. He said that he has seen a lot of patients in his practice with these nodes who have gotten a negative blood test back on the R.A. but the pathology of the nodes indicates otherwise.

We shall see. Tomorrow the nurse calls and we arrange for the outpatient surgery. I have to go to sleep for this. Oh boy....here we go.

Tuesday, March 8, 2011

What in tarnation?

So....I had to go back to the rheumy today. For the past 3 weeks I've been having a pain in my left elbow. At first I thought maybe I'd pulled a muscle or something. Although I couldn't remember how I might have even pulled a muscle...I mean you do have to lift or exercise or something right?....I just thought maybe I did something to my left arm. I also sleep on my left side and typically my left arm goes under my pillow and head and my hand kind of hangs out between the mattress and headboard. Maybe my odd sleeping position put a strain on the joint?

Anyway...it wasn't going away and in the meantime I also started developing more symptoms like REALLY swollen hands in the morning and just a couple of days ago started having bad hip pain and lower back pain.

Since the CRP level was slightly elevated in January I thought it best to follow up with the doctor. So, I called yesterday and got an appointment for 12:30. Dr. Nan examined me and noticed that my knuckle joints are swollen and my fingers are red and puffy. Not a good sign.

Off to the lab I went where they drew 12 vials of blood. She's repeating all of my initial labs to see if she can find out what's going on. I'm praying she can find out that my thyroid is out of whack and I need some thyroid medicine that will turn me into a Catherine Zeta-Jones body double! However, because my life is typically going in the wrong direction....

Instead of this........

I'm bound to get this from all the steroids:

I'll have an update next Tuesday or Wednesday.

Wednesday, February 9, 2011


Lucky for me follow-up visits have been uneventful. I had one a couple of weeks ago and everything looks like it's fairly normal. My blood work did show that my CRP levels are elevated. CRP tests indicate inflammation levels. I have been feeling pretty normal with very little joint pain although my hip bones have been more stiff than usual in the mornings or when I  get up from a sitting position. Overall I am doing 100x better than I was!

Yesterday while my husband was at work, he saw our beloved Dr. Kazi and chatted with him for a moment. Dr. Kazi inquired about my health. After my husband updated him on how well I am doing Dr. Kazi said, "I've never seen anyone in renal failure like she was make a recovery." BAM!

That kind of hit me like a ton of bricks. I thought I understood how sick I had been. I was there after all. I was the one getting poked, prodded, tested, transfused, dialized, and all the other things they did to me. In a lot of ways it's surreal.

 On Tuesday, Feb 15th it will be one year since I found out that I was in renal failure. My husband, ironically, will be leaving on another business trip that day, just like he did last year (at my insistance) only this year he won't have to come back because I might be dying.

Anniversaries cause you to think back and remember. Some anniversaries are sweet, like your wedding anniversary or the birth of a baby, or your first date. Some anniversaries bring a lot of grieving. I never grieved so much in my life as at the first anniversary of my father's death. I didn't even grieve so hard at his actual passing.

I try to be a spiritual person and I am active in my church. I have a deep faith in God and in His plan for our lives. I have felt His hand in my own life many many times. I think that God really protected me from feeling scared and unsure when I was sick. I don't think that I realized at the time the gravity of the situation I was in...and it is probably a very good thing.

This last year has been so full of blessings and goodness in my life. I am so thankful to have been allowed to remain with my family. To become a grandmother to two sweet baby girls. To be a mommy to my 10 year old son. To be a mother to my grown children. To be the wife of an amazing man.

I'm glad I didn't miss out on any of it. I'm thankful that even though I was so completely miserable for the first half of the year that I had them and that there was so much happiness despite the pain.

Life really is good.