The Good, The Bad and The Ugly....but hey...I'm getting O.U.T.

My creatine is down to 3 something today. The renal doc on call this weekend came in to tell me that tomorrow they're taking out the port for dialysis and I can go home!!! I know all things are subject to change but I am SO ready to get out of here.

One thing I'm looking forward to is filling out the survey that the hospital will mail to me. We'll start with "The Good".

On the positive side....

1. My physician care has been superior with the exception of the doctor who was in the ER who admitted me. He's kind of a jerk and from what I gather doesn't have much respect from the rest of the physicians I've been dealing with.

2. Excellent care in dialysis.

3. A very comfortable air bed.

4. Attentive and caring nurses and patient care techs. One little thing though...men PCT's just don't make me feel too comfortable. I'd rather have a woman...just me.

5. A decent selection of free movies and TV viewing.

6. A cot for my loved ones.

7. Pretty decent food...except for cholesterol free eggs. Why bother even eating an egg if it has to taste like that? D.I.S.G.U.S.T.I.N.G. I just don't see how that little bit of egg yolk could have hurt me.

8. Getting my chest x-rayed right in my bed. That was a treat.

9. The nurse who put in the PICC line. Super good, super fast and right on the money.

Now for "The Bad".

I have a few suggestions to improve patient care.

Here are some of the highlights...

1. Do not wake people up at 5:30 a.m. to weigh them...especially since they're laying in a bed that will weigh them without disturbing them! Just push the freakin' button and weigh the person. Oh and do you really need to take away my pillows that weigh about 8 ounces? Is my weight that critical?

2. When you send someone in to take my blood why don't you have them just do the blood pressure, temperature, oxygen level, blood glucose and weight at the same time? Do I really need to have a different person come in to do each thing? It's like a parade of people in here beginning at 5:30 or 6 a.m. every day.

3. How about changing the sheets every day?

4. Whoever put in the toilet paper dispensers has obviously NEVER had to sit on any of your toilets and tried to get to the toilet paper. Reaching to your right and behind you is NOT a convenient place for the toilet paper. This is a pet peeve of mine since I used to put up these dispensers when I sold janitorial supplies.

5. Also...if you're measuring my urine output and you see that I'm making more urine...you need to empty the thing regularly. I do not want my urine overflowing while I'm using the facilities. EW!

And for "The UGLY".

1. This hospital was originally built in 1972. I am in the oldest section. The flooring in the bathroom is separating from the wall and is molded. Shouldn't a hospital bathroom be clean and pretty?

2. The toilet, well the whole bathroom, is not handicapped accessible. The first time I tried to sit on it I thought I was going to end up on the floor. Then I couldn't get off of it. They brought me a commode to put over the toilet but the bathroom is the size of a postage stamp so it's cramped in there.

3. Not a walk in shower...it's a regular bathtub and very small. The shower head hits you right on your chest.

4. The transition from the hard tile to carpet is about 12 inches from my room and every cart, bed, tray that comes down the hall has to be pushed across this threshold at such a high rate of speed and makes such a huge crashing noise that you think something has overturned every time they come down the hall.

Overall I have been VERY satisfied with my 2 week stint here in the hospital.

I was just asking my mom how much she thought this would all cost. She's thinking $300k. We shall see. I already have a stack of statements from the first 2 hospital visits that are about 2 inches thick...that is NOT a joke either.

If you have any guesses for the bill feel free to post your best guess.

I'm being held prisoner

Today's been a LONG day. I have been so bored. I am feeling much better and I am feeling ready to go home. I just want O.U.T.!!

My creatine level is still at a 4 but at least it's not going up. The renal docs say that I will probably have the dialysis port removed on Monday and then I can go home! That would be swell!

My rheumatologist, Dr. Kazi, came by today. I was totally impressed that he came to see me on a Saturday. He was off today but pulled up my chart from home and thought he should come and see me so he did. I like him a lot. Here is a link to his website...click HERE

Erik hadn't met him before and even Erik thinks Dr. Kazi is "charming".

Anyway...Dr. Kazi said that he thinks I am going to come out of the auto immune thing without any further problems. He's tapering me off the Prednisone and thinks once I'm done I won't need any further treatment. He also said that he wouldn't say that I'm out of the woods as far as the possibility of developing lymphoma. That will only happen if the next CT scan shows that my spleen and lymph nodes have gone down. I will have another CT scan in a couple of weeks and we'll compare that scan to the one I had back in December. I am confident that I do not have, nor will I develop lymphoma. I am grateful that he is my doctor. I like him a lot. It will be worth the drive to Dallas from my house to see this man.

I will be so glad to have this episode behind me. Yesterday I realized that I will have spent half the month in the hospital. That's just crazy if you ask me.

For the past couple of days I've been venturing off my floor and going down to the gift shop. Last night I wanted a banana so I went to the cafeteria. There I was in all my glory, lovely oversized hospital gown, black robe and flakes of dead skin all through my hair! I am sure the people in the line behind me were wondering why I was downstairs spending .64 cents on a banana...which I had to put on my debit card because I have no cash with me.

I've been showering daily but the hair part is much more difficult because of the PICC line and the dialysis port. It's such an ordeal to wash my hair because the line and port need to be waterproofed with some sticky tape and my skin is so sensitive that I can't tolerate any more tape. This afternoon Erik helped me wash my hair and although it's by no means "flake free" it doesn't look the Abominable Snow Man is living on my scalp any more.

Hopefully I'll be "paroled" on Monday. I'll keep you posted.

Am I posessed or What?

Ok...so I told you that I was going to be graphic so this post might gross some of you out. You might want to skip this post if you're of a weak constitution.

Last week when my skin was peeling off my face I had to peel it off. I mean really....the skin was so tight around my eyes that I had a hard time opening my eyes and the skin around my lips was so tight that I couldn't open my mouth to take normal size bites of food.

Let me preface this story for a sec...

About 2 years ago I developed a "zit" on my upper lip. I tried to pop the thing for a long time and finally got something the size of a small bead out of the thing. It totally left a hole in my face which I poured peroxide in and it closed and went away. Then about 6 months later it came back. I tried and tried to get the zit thing popped. I even took a straight pin to it to try and pop it and give the "bead" out of it but all I ended up with was a hole in the zit thing. My uncle, who is a dermatologist, saw it and said it was a colorless mole. I told him I could squeeze it and that stuff would come out but he said he could just cut it off. We didn't have time for that when I was visiting last November so I came home and tried a few times to "milk" it.

Anyway...while I was peeling my skin, this little area on my upper lip was irritated and some pus started to come out of it. I pulled the skin and attached to it was a hard white "bead" again. It left a hole in my face again but it's closing up. It's the weirdest thing.

THEN the next morning I had a bite of Erik's breakfast. He had gone and gotten some eggs down in the cafeteria. A little while later I was looking in the mirror and noticed that I had something on the side of my tongue. I thought it was some food but when I touched it a hard yellow thing came out of my tongue and left a hole in it! What the?????

I told the doctor about it and she saw the hole in my tongue and was like..."I have no idea what that is...did you save it?" Guess I should have. It was just too weird. Between the skin thing, the zit thing on my lip and the thing in my tongue I felt like a total freak of nature!

As for my skin...I'm now losing the skin on my finger tips! This Bactrim has really done a number on me!

Today's health update is this....my creatine is down to 4. Dr. Rinnir asked if my family could live without me for one more weekend. He's thinking if I keep on the downward trend that I might be able to get the dialysis port out and go home on Monday? I can hardly wait. I'm tired of peeing into the "hat" in the toilet, I'm ready to eat some real food. I'd love a real scrambled egg.

They have me on a renal and diabetic diet. Thanks to the Prednisone I've developed a blood sugar problem. Anyway...do you know what you can eat on the renal/diabetic diet? Not a bunch. Not even a banana because the potassium can be rough on your kidneys when you're in renal failure. Thankfully Dr. Rinnir said I can have a banana. I also begged for a bagel with cream cheese and he said I could eat that too. I see light at the end of the tunnel!

How Dinosaurs Became Extinct

Today I kind of feel like these Dinosaurs. I've missed the creatine boat today.

My levels are still 5x higher than they should be. Dr. Rinnir, my renal doc, says that he was encouraged that the numbers didn't go up. He thinks they'll start coming down soon, that I can get the port off my chest and go home. He wouldn't commit to any certain creatine number but he is encouraged because I am making a lot of urine.

Dr. Rinnir is my hero today because I have been dying for some regular food. They're feeding me ok here it's just that I wanted a bagel and some cream cheese. He was like..."You can have a bagel. It's not going to hurt you." What I'd really like is a hamburger and fries, or some Chinese food...which let's face it is probably the worst thing for my kidneys now.

It hasn't been totally awful in the hospital. Luckily they have some free movies, I have the internet, Netflix and I'm resting a lot. I kind of feel narcoleptic because I can nod off mid sentence.

I've been getting up and walking more and more so that's good. Last night I went to the little kitchen area on our floor and met a nurse that had taken care of me early last week. She was visibly shocked and even said..."Oh my gosh, you're up...look at your face!" Tonight was the same thing, I was at the nurse's station and they were all commenting on how much better I looked. So I'm encouraged by that, I just need those stinking creatine levels to start coming down.

In the mean time my Mom is here staying with me. I feel badly for her sleeping on the cot they have in here. It's probably one level up from a prison mattress but she's been a sport staying with me. Tomorrow night she'll go to the house and stay there and I'll stay the night by myself. It's not that I can't stay alone...I just feel so much better having someone with me.

Tonight right before dinner the hospital chaplain came to visit me. He is from Nigeria. He spent about 10 minutes visiting with us. He said that several times a day he takes his patient list into the chapel to say a prayer for the people on the list. I was really quite moved.

I think that all of the prayers that have been uttered in my behalf have kept me from getting any sicker and that God has heard every prayer and plea for my health. I can't tell you how I appreciate them. There have been times I couldn't pray a complete prayer for myself and knowing that so many friends and family are remembering me has been such a blessing to me.

Hopefully tomorrow I won't miss the boat and we'll see those levels coming down.

Straight from the Horse's Mouth

Last night I finally had a rheumatology consult with Dr. Kazir. He is a very dapper looking man with pretty blue eyes. He wears glasses that come apart at the nose bridge. He came in to meet me and get my story. He said that medical charts lie. He said that people end up perpetuating theories and thoughts that may or may not be true so he wanted to get this story straight from "the horse's mouth".

He hasn't been back yet today but he wants to get me off the Prednisone. He also knows my current rheumy. They were "fellows" together at SMU. I trust this guy more than Dr. Nan. I know he's consulting with her and getting my history and her thoughts about my situation. I just have a strong feeling that he's going to figure this out.

As he examined me and spoke with me he asked me how I had such a positive attitude. I just told him that I felt that God was in control, that I had lots of people praying for me and that I was going to have to take one day at a time. Things are what they are and getting mad isn't going to change a thing.

Ok...he just came in. He said that he reviewed my chart for 2 hours yesterday and that he thinks I had a virus that is going to go away. He is tapering my Prednisone down 5mg a week until we're off. He thinks by then I won't need any medication. That would be wonderful! He also said that as he read the chart he wondered if they tested me for syphillis! WHAT????? Is he serious! NOT even a remote possibility! He also said something about a rare condition called sarcoidosis. He was just going through any and all possibilities. Anyway...I asked him if he would take me on as a patient once I'm out of here...he said yes so I will make the trip down to Dallas to see him once I'm outta here.

When I went to bed last night I had a lot of swelling in my legs. You could press them in and see a huge indentation. I worried about that thinking they might have to take me to dialysis to get more fluids off. Apparently my kidneys must be taking over. They are producing urine and I had to get up a couple of times during the night to use the restroom.

There is no more blood in anything so that's a HUGE blessing. Speaking of blood, my platelets are increasing so that's good and my creatine levels, which measure kidney function, are coming down. Normal is 1 and mine was 6.6 when I got here, it's down to 4 so I'm happy about that.

My mom will arrive tonight around 8 pm. I'm glad to have her be with me. She asks good questions of the doctors and will be able to remember what they say better than I am.

So there you have it...straight from the horse's mouth...Neighhhhhh.

Dialysis 101

This morning I went for another round of dialysis. I have a 4 hour stint down there. Thankfully I had at least gotten breakfast before I left.

Those nurses there are such a blessing to me. They smile and are happy and cheerful when they see me. I appreciate what they do for me. They're patient and kind to me.

One girl in the Hemodialysis unit is a young mom of 3, Victoria. She is Russian. I look forward to seeing her when I go down there. When I first get into the unit they make me comfortable in the bed and start cleaning off the leads to the port so they can hook me up to my artificial kidney.

For some reason it was difficult for Victoria to get the port to work correctly. I could tell she was a little upset that it wouldn't work but she kept trying different things. I quietly said a prayer that God would let those things work right and thanks to Him and Victoria she got the things going.

Two of my renal doctors were down there today too. I love these men for taking such good care of me. Pray for them too...Dr. Wall and Dr. Rinnir. They are really concerned for me and keep telling me to "Think Urine". As soon as I was done today I needed to pee so that was a good sign. They said that they're not planning on doing dialysis on me again...they're confident that in the next day or so that my kidneys will start working on their own. That would be SWELL!

One thing I learned today is that not only can the machine filter your blood and clean the blood but it also has the ability to suck off extra fluid from your body. Today they drained an additional 3 liters of fluid off my body...that's 1 1/2 Coke bottles of fluid! Come on kidneys....kick in there!

Still no rheumatology consult but I will be asking about that today. I need to get the rheumatological issues dealt with as well.

The blood docs say that my blood has stabilized...not gotten worse and slowly getting better. It's nice to know that I'm not in danger of bleeding to death.

Speaking of bleeding to death...no word about where the blood is coming from but they are thinking it's a freakish period. DUH...I'm the Interesting Patient remember!

Why the Blog?

I'm starting this blog to keep my friends and family updated on my ongoing health saga.

Most everyone knows what I've been through up until now. I'm suffering from some kind of auto immune crisis that's affected pretty much all of my organs.

Right now I'm in the hospital with renal failure. I have a port in so that I can have dialysis when it's necessary. So far necessary has been 4 times since Monday, Feb 15. I'll probably get sent down there again tomorrow.

This blog will be graphic and descriptive. If you're squeemish...don't read it. If you are faint of heart...don't read it. If it bugs you that people tell intimate details of their lives...don't read it. If you don't want to hear about my urine output...don't read it. If you don't want to hear about bloody boogers...don't read it. I think you get my drift.

I'm here to tell a story...my story.

Why did I choose the name, "The Interesting Patient"? Well...back in 1993 when my Dad was diagnosed with gall bladder cancer I learned that it's NOT a good thing to be diagnosed with a rare cancer.

I've learned now that it's also NOT good to be the 'interesting patient'...someone who does not have clear cut, easy to diagnose illness.

It's much easier for the medical world to say..."You're diabetic." or "You have breast cancer." When you have a host of things wrong with you and they have to "figure you out" it's much more difficult. They meet about you, consult with other physicians about you, bring in teams of people and try to figure it out.

My own renal doctors have joked how they need to call in Dr. House to figure me out. But they're trying and they meet and consult and reformulate ideas. I'm grateful for them.

The last two days have brought ups and downs. I've had 2 blood transfusions, platelets, plasma, fibrin infusions, nose bleeds that last 2 hours. The last 2 days I've been urinating but it's full of blood. No one is worried about it but it scares the hell out of me.

Yesterday I stood up to go to the bathroom and blood ran down my leg. They think it might be that my bladder got bruised and/or irritated when I had the Foley catheter in. Tomorrow we'll know more. I'm still bleeding when I go to the bathroom but we don't know where the blood is coming from. Could it be that on top of everything else I am having some kind of freakish menstrual cycle. PLEASE! Can we just shut down that factory already? SHEESH!

Thanks to a total allergic reaction to Bactrim I'm already a freak because I'm shedding my skin like a cicada. The skin is almost black when it peels off. If I were the person able to pick and peel the skin....I'd love it! I'm not so excited that it's me.




One thing about Bactrim...it's a BAD drug. Don't take it...get something else. They've outlawed it in the UK. Basically it's given me a huge chemical burn all over my body...and I do mean ALL OVER MY BODY!

So...I'll start the blog here and hopefully be able to update it regularly, maybe daily.

Time for me to put some cream on my face and try to go pee again.