Sunday, October 31, 2010

More of the Same

It seems I have gone back to exactly the way I was a few days ago, only now there is no pain with it. The only way my heart doesn't race it to stay very still. If I don't move around I can keep it at about 100 beats per min. I'm not obsessed with it; if it gets up to 115 I feel it in my head and my ears.

I tried breaking my new med in half and taking half at breakfast and half at lunch. It also changed nothing, but did let my blood pressure go high again.

Not much else is going on up here on the knob. Most of the leaves are off the trees so it is easier to see the squirrels. Louann is spending the day with me tomorrow so I know we will find something to laugh about - no matter how bad things get we can always find something positive in it.

Saturday, October 30, 2010

Good Morning World

I feel so much more like me. When Scott and I were filling my medicine trays last night we saw how messed up they had my medication at the hospital. My body went into rebellion.

The hospital only carries 1 drug out of a class. Ex: Protonix, Nexium, Kappidex, Prilsec, Aciohex ... That is good in theory, but in real life one medication doesn't always work as well as the other. Basically the only medications identical to my routine were Benadryl and Prednisone. With someone like me, small differences make a big difference.

I slept like a log last night. This morning I feel much better than in the hospital.

Coming home with the PICC line has been a challenge. It is hard to track down all the supplies you need to care for something like this. Multiple trips to the local pharmacy that carries home health supplies have already been made, and Scott will have to go back today to get the chlorhexadine impregnated disc and stat lock for my dressing change. Sometimes living so far out from big cities is a challenge.

I have finished my early morning snack with my meds and am going back for another nap!

Friday, October 29, 2010

I'm Home

My heart is racing, I am freezing, I'm dizzy, and oh so tired. No chest pain!

This is all I can do for now.

Thursday, October 28, 2010

Wide Awake Again

I had about 2 hours of sleep last night and just woke up after that much tonight. My arm is sore from the PIC line placement now that the numbing has worn off.

Radiology cane in and did a chest X-ray to rule out pneumonia. I had coughed a little but didn't realize my lungs had anything going on. My oxygen saturation was a little low, but my blood pressure and pulse were fantastic. No fever either. ????

Right now I really want to go home. When people are here with me it isn't bad but when everybody goes home and Scott goes to sleep this is the lonliest place on earth. At home Carmen stays with me all night.

I'm looking forward to morning. Louann is bringing me breakfast. We have both been sick so we haven't seen each other since June or July. We are so much alike we could have been twins separated at birth.

Why is there nothing on a TV with 120 channels???? Scott says watch TV but at home I watch Netflix and always have what I want to see. There really isn't anything but garbage on regular TV anymore. Are people really watching this stuff???? I want to see The Waltons

Correction. PIC line is in

We opted to go ahead with the line just for emergency meds and blood draws. It was super to have Dr. Ford right here to advise me.

The echocardiogram shows my heart pumping well. I am on a nitrate for angina to open up my small cardiac vessels and an ARC to lower my blood pressure. I will be wearing a Cardiotex monitor for 21 days - 24/7. My heart will be monitored over the internet and my cardiologists can do med changes with me comfy at home.

We don't know what started the heart issues but we do think that the oral albuterol that I was taking was making this worse.

I had lots of labs yesterday morning that aren't back yet. Hopefully we will have news from those next week.

I feel super after they give me happy juice but when it wears off I go back to my normal yucky state minus the palpitations. I am still a challenging patient. I will update here as often as I can but will be here at least until morning.

I have told everyone that I am getting addicted to all this attention. Just joking, but it is nice to have people to talk with all day.

I will feel ok until my Versed and phenergan wear off. I will post more news as I can.

Out of cath lab

I avoided the PIC line. A Mtn. City girl popped an IV right in.

My large coronary arteries are completely clear. Small ones may be causing pain. Docs still bickering over drugs. I still have to go for an echo but I'm doing great.

Rise and Shine

I have had my 2 hours of sleep, my morning EKG and labs. Wake up docs so we can get on with this show. I'm ready for my coffee!

Wednesday, October 27, 2010

First Triponin levels elevated

This is a sign that something cardiac is happening.

I had a rash that lasted for just a few minutes and faded away. Everything is going well so far.

Sleep well everyone!

My Luxury Penthouse Suite

Tonight I am writing from the 7th floor of Johnson City Medical Center. I had an extravagant ride across the street in a Washington County EMS ambulance.

I was originally scheduled for a cardiac cath for Tuesday, but I became unstable in the few hours between my cardiology appointment and my immunology appointment. Everything was moved up, but because contrast can trigger anaphylaxis, there was a great deal of discussion put in on what contrast and pain meds would be used. They found the most hypoallergenic contrast that is the least toxic for my kidneys and set the schedule for 8 am tomorrow.


No one can get an IV large enough to handle the contrast for the cath.


I go early in the morning to have a PIC line inserted before they can do a cath.

Hopefully I will have something repairable so that tomorrow I will be my normal fidgety self! Worse case senario is that nothing is wrong with my heart and all of this is part of my autoimmune disorder. I know it sounds weird to hope something is wrong with your heart, but that is fixable. Anything that can be fixed is good at this point.

I started my two new cardiac drugs here tonight so that if something goes wrong it can be fixed. It is in a small way comforting to have help just outside my door.

And for good news....

I am going to be a grandmother!

I have to get out of this bed! I have to prepare for spoiling my grandchild just as my grandparents spoiled me. This is going to be one little spoiled child. I have named it Guha after my immunologist. Casey isn't impressed but I have a feeling this child will be Guha for the rest of my life. :)

I must get in a nap before my 1AM triponin blood draw.

Say a prayer for God's will to be done and for God to bless my poor internist who has already been called 5 times about me since my admission.

Check back for updates tomorrow.

I do have a pediatric size IV cath in place for emergency drugs. I had so many nurses around my bed I felt like a queen on my throne with a court around me. It took those poor souls hours to get enough blood for my labs and to get an access for emergency meds. They have all been so kind.

Obvoously my cardiology appointment did not go well. I adore my cardiologist. He is the kindest man.

Tuesday, October 26, 2010

Another Bad Day

Two more episodes today. I am totally wiped out.

A Big Scary Night

Last night was one of the worst episodes I have had in a few weeks. The difficulty swallowing lasted for hours.

What does this mean? I really don't know. I have no idea if this is because of the decrease in Prednisone or if I exposed myself to some trigger yesterday. Since my days are pretty much the same, I really don't see how I was exposed to anything new.

This morning is better - I still have lots of mucus and my throat still feels funny, but otherwise I think I will be ok. I will be staying close to my friend, Mr. Epipen, today.

Sunday, October 24, 2010

The Great Sock Reinforcement Experiment

About a year ago I made a pair of socks from 100% merino yarn. I had read different opinions on reinforcing the heels and toes with nylon thread. I decided to do a pair each way and see what happened. I wore these socks at random, not having a certain sock for a certain foot.

The answer is:

Don't reinforce. The wool wore away on the toe of the reinforced sock. The other is fine. The nylon did make it easier to darn the sock, but I would rather have them last longer on their own. (Yes, I do darn my socks!)

On the health issues -

It has been a hard weekend. I have had swollen red joints and have not been able to knit or spin. I am not allowed to take ibuprofen so I have had no way to get any relief other than my parrafin bath and heating pad. I've had to use my nebulizer some, and have had to use several doses of insulin.

Those who know me well know that it is torture for me to not be able to be doing something with my hands. Carmen and I have napped off and on, but it still makes for a dull life with no action for the hands.

Scott has been cleaning out the garage so that the cars will fit in there and the door will close. Hopefully that will keep the house a little warmer this winter.

Thursday, October 21, 2010

More of the Same

Today I had another Immunology appointment. Some small changes were made - changing to less expensive drugs mainly. I get to decrease my Prednisone by 10 mg every 4th day.

I had abnormal labs but those labs don't tell us what is wrong, just that something is. My kidney function is low. I am iron deficient. I have a very high sedimentation rate and my antibodies were high.

My best scenario is to be able to get off prednisone and start the cyclosporin. As of right now, my kidney function isn't good enough. I also have to slowly taper off prednisone if possible. Some people with idiopathic anaphylaxis are steroid dependent and can't stop them.

Dr. Krishnaswamy is repeating all my previous labs and doing more along with a complete kidney work-up.

Next week I see a cardiologist to see if they can determine why I am having the episodes of rapid pulse and high blood pressures.

We ate lunch at Pizza Hut. I wasn't thrilled with the food today. Hopefully I am losing my appetite!

Tomorrow is the first day of the Southeast Animal Fiber Fair. Louann and I had so much fun last year. Neither of us are healthy enough to make the trip this year, but God willing we will be there next year with all of our fiber friends. Maybe next year I can convince Scott that I need an angora rabbit.

Saturday, October 16, 2010

A Change of Scenery

Today I actually left the house for something other than a doctor's appointment or a funeral. I went with Scott to spend the day with his dad.

We had a good day and before we left we even had Elmer playing his guitar a little bit. He seemed to really enjoy the company. It was also good for me to leave my nest for a little while.

Thursday, October 14, 2010

More of the Same

This morning I woke up to another rash. Today has been a day of racing heartbeat and shaking. Hopefully tomorrow will be a better day!

Tuesday, October 12, 2010

New Things to Think About

Today I saw one of my immunologists. I suppose if you have more than one immunologist you should be bright enough to know that is not a good sign. Both my immunologists met together and went over my case. The last round of tests also gave no answers so we are very near the "idiopathic" diagnosis.

Dr. Kazmier told me to start thinking about using " cyclosporine ". This is an immunosuppresive drug used for transplant patients. It will keep me alive, but with serious possible side effects. These side effects may possibly be worse than the side effects I am currently having from my current drug regime.

How do people decide how far they want to go to assure that they stay alive? Did God give us the science and knowledge to create these treatments, or is it against God's will? How much suffering are people willing to endure to stay alive, and is it worth it??? The medical answer is always "there is a chance you might get better".

I have time to think - time is one thing I have.

Friday, October 8, 2010

What is going on???

My body is in rebellion. No rashes, but I get very hot, my heart races, I start shaking,sweating and I get nauseated. What the heck is this??? I'm so tired of all these little ailments. I have things I want to do!

Wednesday, October 6, 2010

Not Many Changes

Nothing out of my ordinary has been going on for the past few days. No news is good news.

I have been completeing lots of forms for disability, and sending corrections to hospitals that cannot seem to get my insurance information correct.

I finally turned the heat on today. I either had to have heat or wear a hat indoors. It was only 64 in the house at lunch time.

Saturday, October 2, 2010

Mirror, Mirror on the Wall

Prednisone has many side effects. Today I looked in the mirror and saw a classic "moon face". Prednisone causes a redistribution of fat, mainly to the face, abdomen and upper back. It also causes fluid retention concentrating in the head.

This is not my face but I do have the same shape now. I have avoided looking in the mirror as much as possible but today Scott asked me to go to a funeral with him. In order to try to not embarrass him, I was forced to look in the mirror to get ready. Somehow prednisone side effects have crept up on me without my realizing it had happened. You can't see the lady's eyes, but I have bags under mine that are a nice shade of blue

When does all this end? Is the treatment worse than the disease?? The mood swings, shaking, sweating... All this on top of the zombie like state that comes with all the histamine blockers.

On a more positive note - I received a letter from Congressman Phil Roe notifying me that my application is in Nashville with the Disability Determination Board. I don't know anyone who would want me to be their nurse in this state, so I am hopeful that I will get a temporary determination. As we drove down Main Street today, I realized that I can no longer remember what stores were in the empty buildings. I remember what was there in the 70s but not what was there last. People who don't know me well may not notice a difference, but it is certainly scary to me.

Friday, October 1, 2010

Little Angels

Today had been a terrible day emotionally. Days off of steroids are hard, but today had been particularly trying with abdominal pain and GI upset. Some days are just bad.

I had been a bit weepy until I checked

Those little angels made my day. The Mastins have been through so many painful events and they still care about others, sharing their joy and their pain. Seeing the twins posed in their little hats brought my first smile of the day. Thanks Neil and Bekka for sharing your joy.