Our Newest Addition

I’d like to introduce you to the newest member of our family. His name is Casper and he is a purebred Pomeranian, just like our Keanu was. We have had him a little over a week and he is now 12 weeks old. D took him today for his first Vet visit since he has been with us and he weighed in at a whopping 3 lbs and 10 oz! When he is fully grown he should be around 5-6 lbs.

I knew even before Keanu died that I wanted another Pom. They are great companion dogs and I like that they stay really tiny. Casper is doing very well with us so far and he is getting along great with our other dog, Sadee, a 3 1/2 year old lab mix. It only took them about a day of getting to know each other. They have really been playing and having a great time together. I’m really excited to have him here.

Isn’t he cute???

(You may click on any of the photos on my blog to enlarge them.)

Here he is, checking out Sadee….

Sadee is curious…

Sadee, watching from a distance….

All in all, it has been a great experience so far. Sadee always wanted to ‘play’ with Keanu but he was a ‘grumpy old man’ and wasn’t much for playing. Now Sadee is having a blast chasing and being chased by Casper. It has been lots of fun to watch! I still miss my Keanu but Casper is making things a little easier.

Thanks for stopping by! Have a wonderfully blessed day!

WORDLESS WEDNESDAY…..

Thanks for stopping by on ‘Wordless Wednesday’!  Since I’ve never participated in this before, I thought I would take a minute to explain to my readers, especially those who are not bloggers, or even avid blog readers, exactly what this term means as I fully intend to participate in this in the coming weeks, as often as I feel up to it.

‘Wordless Wednesday’ is when bloggers post a photograph (or video) on their blog with no words to explain it - hence the ‘wordless’ title.  The idea is that the photo itself says so much that it doesn’t need any description.  With that said, I leave you today with a really awesome video that was posted on my pastor’s blog last week.

   

 

If you’d like to visit more great blogs that participated in Wordless Wednesday, then hop on over to WORDLESS WEDNESDAY to find links to a ton of them.

Have fun looking!  Take care and I will see you soon! 

Blessings,

OUR RECENT LOSS ~KEANU~

As some of you may know, while I was in the hospital this last time, our sweet dog, Keanu, died. It was a very sudden and unexpected loss. It was especially hard to deal with since I was so very sick at the time AND it happened when I was not home to be with him.

Although he was already 13 years old, Keanu had been completely healthy and had seemed fine until he started to limp slightly and favor his front left paw. Even then, he was eating well, playful and overall still a happy little dog. Then, after a trip to the Vet - at which time they had only suspected arthritis and then went ahead and gave him his yearly immunizations - he started to go down hill really fast. He was dead within a week. We don’t know what happened for sure, but you can be sure we won’t be using Banfield for our pets in the future.

Keanu was a purebred Pomeranian and came into our lives in 1998, at the age of 2, from a family friend. I absolutely, positively did not want a dog, especially a house dog, at the time!! I fought hard against both my husband and my children, but I was outnumbered so I lost. Once he was here, guess who the silly dog liked best? You guessed it, me! Everywhere I went, he did, too. It drove me absolutely crazy. I did not like him and I did not want to look at him or be around him. He still continued to follow me. If I went to the kitchen, he followed me and sat right there and watched me. If I went to the bathroom and shut the door, he would act just like a two-year-old who sits outside the door and puts his hand under it while waiting on you to hurry up and come out. If I went somewhere he couldn’t get to, he would whine and ‘cry’ until I was back in his field of vision. He even went into mourning when I went on a week long mission trip in 2006. Literally. It was so crazy!

Needless to say, it wasn’t long until he won me over and I fell in love with him, too. He was my constant companion from that point on. I miss him badly and there is an empty place in my heart because he’s gone.

When I used to work at the doctor’s office, I always thought that people who got SO desperate and upset over their pets dying (and sometimes even called needing an excuse for a day(s) off work) were a bit off their rocker. Well, now I understand that grief so very much better. It is very hard!

Good Bye, Keanu.

We love you and we will always miss you!

MY MOST RECENT HOSPITAL STAY June 30th - July 6th, 2009

(I apologize upfront for the length of this post. Although I'd be very honored if everyone were able to take a few minutes to read it, I totally understand that you all are very busy! As I've said before, I mainly want to use this to keep my family and friends up-to-date on what all is going on in my life and to provide education for them as needed about all the various things that go on. However, the main point behind this post was more about reaching out to others who have, or may have, this disease and are looking for answers. My prayer is that the Lord will lead someone here who has been searching for answers about this disease. I pray they will not only find refuge and solace here among others like them, but that they will find it in the arms of our Lord and Savior, Jesus Christ. If I can help just one person learn something new about the illness, know a little more about how to better manage some of these horrible symptoms and, most of all, just help them to know they are never, ever alone...then I have accomplished my goal!)

So here we go! As I was telling you in my last post, after getting my new port placed on May 28th, I seemed to be doing relatively well – all things considered. Then on Tuesday, June 30th, I got up around 7:30 and my husband, D, helped me downstairs to my recliner where I spend most of the day, on my ‘fair - good days.’ D is an ex-Paramedic like me, so after being properly trained by home health, he is now the one who does most of my port management. On that particular day, we followed our usual morning routine, plus it was also time to re-access my port after not accessing it for a couple of days. The port has to be de-accessed and then re-accessed weekly in order to help avoid infection.

Once it was accessed, D got a bag of IV fluids going before he left for work. He was already running a bit late that morning and needed to be at a meeting soon so he didn’t linger long afterwards. Approximately 15 minutes after he was out the door, I started having the same horrible feeling that I’d had when my port had been infected – that one that comes on so very rapidly and without warning! I became extremely cold and then started having chills in the matter of a couple of minutes, if that long. I immediately called D and had him turn around and head back home and then I had my daughter, B, help me back into bed. By the time I got there, I was having those full force, extremely violent chills. I knew something serious was wrong again. D was home in a flash, he got in touch with my doc and we headed for the ER.

Now, I will admit that I am not much of a fan of our local hospital’s ER. (I will write more about all of that in an upcoming post.) However, this time I have to say it all went more smoothly than usual. They knew I was coming ahead of time and that I was potentially very ill. I was triaged as soon as I came through the door and they took me straight back to a room. Before I could even get up on the bed, there were several people in the room doing a hundred different things at once, or so it seemed.

Because they were concerned that my port was infected, they could not use it. That meant they had to start another IV in a peripheral site. Praise God, one of our former colleagues in EMS was working that day and she was able to get it on the very first attempt! Absolutely amazing! They were then able to give me some pretty good meds through my IV so that I was feeling a good bit better soon.

They did a TON of labs which quickly came back strongly indicating that I had a PULMONARY EMBOLISM, a blood clot in the lung. I also had a whole host of other abnormal labs. Most importantly, my liver enzymes were above 600 – normal being less than 50 - and my Lactic Acid level was high. This was definitely indicative of another episode of ACUTE SEPSIS, which is what I had back in April when I was so sick then. They really needed to do a Cat Scan (CT) of my lungs, with IV contrast, to rule out a clot. However, the size of the IV catheter that was used was so very tiny, it could not be used for the contrast. (IV contrast has to go in through a very large bore catheter and at a very high rate of speed. This can’t be accomplished with the little ‘baby needle’ they had in me.) They spent at least a couple of hours sticking and sticking me, trying to get that larger IV site. It never happened. Finally, it was decided that a Heparin drip would be initiated in order to bide time so they could wait until the next morning and then do a nuclear medicine lung scan because the tech for that particular study is not there at night, which I believe is completely ludicrous! But no one asked me, obviously.

While I was still in the ER, they also did a CT of my head and Venous Doppler Studies of both my legs to make sure there were no clots there. By the time I made it to my room upstairs, I was totally exhausted and it was already around 1:30 a.m! It was finally determined later on in day 2, after all the initial labs and scans, including the Nuclear Medicine Lung Scan, that I either never had a clot or that the Heparin had worked to dissolve it overnight. At that point, they started focusing more on the source of the infection.

I was ultimately in the hospital for 7 days on IV antibiotics. Praise be to Almighty God, my port did not have to be removed this time! It was ultimately determined that it was not the origin of the infection nor did it appear to be negatively affected by it at all. In fact, while I was in the hospital, they never could quite determine the exact source of the infection. They just knew that after they started the antibiotics, I was responding well. I quit spiking high fevers and I began to improve a little, day by day. It took me a while to actually ‘feel’ better. I was still extremely nauseated and had a some trouble keeping solid foods down and I also had a great deal of upper abdominal/mid-back pain. Additionally, my liver enzymes were still elevated, though they were inching back down and were much better than when I came in.

On about day 4 or 5, they decided to do an ultrasound of my abdomen. (You have to remember, this was over the July 4th weekend, so no one was getting in a big hurry to do anything!) On day 6, at around 10:30 PM, the GI specialist came in for the very first time and woke me up. I was in a daze but I gathered from what he said that my liver enzymes were continuing to come back down to normal and were now around 100 but that my spleen was now enlarged. He had no idea why, so he had scheduled for a Hematologist to come in to do a consult with me for the next day – the day I was expecting to go home. Humph!

Very early the next morning, the hospitalist – the main physician who had been coordinating all my care while I was there – came in to see me. She said that all my labs were looking really good and that she was not too concerned about my enlarged spleen. She said she did not see any reason to keep me as an in-patient in order to follow-up on it. She agreed to discharge me with the understanding that I would follow-up with my primary care physician within a few days. I eagerly agreed and after a couple hours of waiting on all the necessary paperwork, I finally got to come home! It was so good to be back home after being in that place for 7 days! It was an awesome feeling to finally get a real bath and get in my own clothes but it really wore me out quickly.

Not long after I was home, I started experiencing even more pain in my upper abdomen and mid-upper back. I still could not eat much at all without being full and very nauseated almost as soon as I started to eat. After contacting my Primary Care Physician, I was scheduled for a follow-up abdominal U/S and labs. Once the results were in, it was finally determined that in addition to whatever bacterial infection I had that made me septic, I also have MONO! That turns out to be the cause of my enlarged spleen. My spleen being enlarged is probably causing, or at least contributing to, why I have been having so much more nausea and vomiting and why I do not feel like eating much. There just hasn’t been a lot of room for my stomach!

I am so very thankful to have finally gotten a definitive answer to what all is going on and I’m glad it was nothing to be overly concerned about. However, I do have to chill out the next couple of months –as if I have anything else planned anyway – and try to recuperate from all this. Mono can take anywhere from several weeks to many months to recover from. It can be especially difficult for anyone who is especially young, elderly or already immunocompromised.

It has been a couple weeks now since I’ve been home from the hospital and I’m still having a good bit of trouble eating, being extremely nauseated when I do eat and I am constantly fatigued…even more so than I already am chronically. I hope to see some improvements really soon. Please pray that I do!

Until next time.....

SICK AND TIRED of being SICK AND TIRED

(Warning: Some readers may find the photos in this post to be a bit, um, gross.  Just a heads up!)

As some of you may know, I have been really sick over the last couple of weeks.  Well, sicker than normal for me.  It all started last September when I had surgery to have a PORT-A-CATH placed in my left upper chest so that I could continue to receive IV fluids of Normal Saline on a regular basis.  Normal Saline has lots of salt and is supposed to help keep my vascular space more full. This in turn is supposed to keep my blood pressure a little higher and help keep me from passing out when I stand….at least that’s the theory.  We have been doing this for over a year, but in the beginning we had to use peripheral sites like my hands, wrists, forearms, upper arms, etc.  We even had to resort to using my lower extremities because we ran out of anything to use elsewhere.

 (Here’s an IV in my ankle. Click on picture to enlarge.)

I just didn’t have any useful veins left.  Plus, I wound up with a blood clot in my right leg which was thought to possibly be related to  one of the IV sites in my ankle  and/or a very long car ride to and from VANDERBILT UNIVERSITY MEDICAL CENTER where I receive some of my care.  So, as an absolute last resort,  I had my very first port put in on September 22nd of last year, which was my husband’s and my 18th wedding anniversary.  Wow, what an awesome anniversary present, huh?!?

 (Here’s an example of what my port looks like.   The circular part is called the portal and has a silicone bubble (the septum) for needle insertion.  The long, skinny tube is a catheter that runs from the portal and is inserted into a large vein.  Once inserted, the tip of the catheter sits just inside the superior vena cava, just upstream from the right atrium of the heart.)    

The surgery went fine.  It only took about 15 minutes in the operating room (OR) under CONSCIOUS SEDATION and then it was in.  After that, everything went fine with the port until April 20th when I suddenly became very, very sick.  Every time we would flush my port or begin to run any fluids through it, approximately 20-30 minutes later, I would have extremely violent chills and my temperature would spike very high.  At first, we did not realize the connection with the port so I had several of these horrible episodes and each one was worse than the one before it.  At one point my fever was 105.  After several days, it was determined that my port was infected and that I was SEPTIC.  Each time we used the port, small pieces of bacteria  were breaking off and going out into my system and then I would have that horrible reaction.  I don’t think I’ve ever been that sick in my life! 

I spent 5 days in the hospital on IV antibiotics and fluids.  They had to do their very best to use peripheral sites again because of the port being infected.  My veins are so poor and they just would not tolerate an IV for long, especially with all the strong antibiotics and the Phenergan I needed for nausea and vomiting.  They finally determined that I had E-coli growing in my port.  That was very unusual as ports that are infected usually grow much different bacteria.  The doctors explained that I apparently had  E-coli somewhere else in my body and that the bacteria got into my bloodstream and then started to colonize in my port.  So, on April 28th, they finally took the port out and let me come home that day.

Once I was home, I had a bad reaction to the surgical dressing.   I am allergic to most all tapes.  All the skin around my surgical site had become extremely raw and was really hurting.  We weren’t supposed to remove the dressing but we just had to. 

(Here’s what my surgical site looked like a couple of days after surgery.  YUCK!)

After some much needed recovery time, I went back in on May 22nd to have another port placed, this time on the right side of my chest.  Everything went fairly well until Tuesday, June 30th.   Then, we started all over again with chills and fever.  I will tell you more about that in my next post.

Thanks for stopping by!  I hope to see you again soon.  Please leave a comment if you have a minute, just so I know you’ve been here.  You may do so by clicking below this post where it says ‘HEARTFELT COMMENTS’.  You don’t have to sign up for an account or give any personal information.   Where it says ‘Choose an Identity’, you can choose ‘Anonymous’ and then leave your name at the bottom of your message OR you can choose ‘Name/URL’ and then just put your name and leave URL blank.  It’s REALLY easy!  If I can figure out how to blog, you can leave a comment, I promise!  Regardless, if you don’t leave a comment, I’m still glad you stopped by!

Have a wonderfully blessed day! 

(You may click on any of the photos on my blog to enlarge them.)

DYSAUTONOMIA... STORY OF MY ILLNESS

Image via Wikipedia

(FYI - As you may have noticed, this was written in July 2009. Not all information written here is still the same but it does give a good description of my illness.)

A lot of people either don't know I've been sick or don't know very much about my illness. So I thought I'd take this opportunity to write about it and try to explain it.

I have been diagnosed with a very rare neurovascular disease that has greatly affected my life and the lives of my family. It is so very rare that most physicians in our area have never even heard of it. I was very blessed that the cardiologist I was referred to knew what it was and recognized the symptoms right away.

The disease I have is called Dysautonomia, or sometimes Postural Orthostatic Tachycardia Syndrome (POTS), with Reflex Syncope. It is a disease of the autonomic nervous system. In my case it causes very frequent syncopal episodes (fainting/unconsciousness). I have had over 175 syncopal episodes since August '07! In case you are not familiar, the autonomic nervous system controls the bodily functions you are not consciously unaware of like blood pressure, pulse, respiration, temperature regulation, perspiration, salivation, urinary and gastrointestinal function, etc.

Since my autonomic nervous system is not working properly, it results in a reduction in the ability of my heart and circulatory system to compensate for changes in posture which causes extreme dizziness and syncope (fainting) when I stand, especially if I stand suddenly or for more than a few minutes, often just seconds. When you stand, your body is supposed to adjust to the affects of gravity on your body and compensate for that. For some reason, mine does not compensate well. When you stand, the vessels in your legs and abdomen should constrict so that blood and oxygen gets to your heart and brain adequately. For me, when I stand, the vessels, particularly veins, become unnaturally dilated, causing blood pooling in my legs and abdomen. Thus my heart beats way too fast to make up for the reduced blood volume transferred by each beat. This usually results in my blood pressure dropping incredibly low and then I pass out due to lack of oxygen to my brain. Once I am laying on the ground, I eventually regain consciousness because the oxygen is then adequate again. A lot of the time while I am unconscious, I will have seizure-like activity such as jerking of my extremities, loud snoring, drooling, sweating and sometimes incontinence. I have had several tests and have been told it is not seizures, it is just something my body does due to lack of oxygen to the brain.

There are TONS of other symptoms that go along with this disease but the situation above is the most major one for me. Some others include (this is the short list!) :

* Dehydration (this is significant for me and makes my b/p lower)
* Major fatigue and weakness
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat or cold
* Major gastrointestinal issues
* Sleep disorders
* Small fiber neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever
* Noise/light sensitivity
* Visual disturbance
* Tremors
* Pain

It is thought that I have probably had this since childhood but it became active in 2007 after I had a host of medical issues in late 2006 and early 2007. In September 2006, I had multiple treatments for a failed root canal. None of them worked so I ended up having the molar extracted the week before Christmas. The extraction not only dry-socked but opened a hole into my sinus cavity. This needed to be repaired surgically but it was during Christmas and everyone was on vacation, plus I was scheduled for abdominal surgery in January. In January, I had surgery for endometriosis, bladder sling placement and hernia repair. After recuperating from that, the surgery to repair the hole in my sinus was scheduled for March. I had that surgery and everything went well until I developed Pericarditis (inflammation in the sac that surrounds the heart caused by an infection) in July. From that point on things began to go downhill quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi.

There is no known cure for my illness, all they can do at this time is treat the symptoms. I am currently going back and forth to Vanderbilt University Medical Center for treatment. They are the leading research facility in the world for this disease. I have been three times so far and I am really pleased with the staff there, especially my doctor. However, even with treatment, I am basically home-bound and bed/recliner-ridden most of the time as I can't walk very far without the fear of passing out.

In September of last year (2008) I had a port placed in my chest in order to receive IV fluids on a regular basis. This helps to keep my blood pressure at a more suitable level. The port was an answer to prayer because I have really poor veins. However, in April, I developed acute sepsis and spent 5 days in the hospital. I eventually had to have it taken out and another one put in at the end of May. You can read more about that in my post, MY MOST RECENT HOSPITAL STAY.

I know this is a lot of information and a lot to digest. I am still learning about it and so are the doctors! I do not mind talking about it, so if you have any questions, please feel free to ask me. I would also appreciate your prayers. Even though there is no known cure, I know our God is a BIG, BIG God and He can do anything!

Thanks for stopping by. I'd love to know you've been here so please leave a comment if you have a minute! See ya soon!

NEW KID ON THE BLOG

Well, it is official. I have finally taken the plunge into the real world of blogging. It has taken me forever to get it all figured out, and I still have a LONG, LONG way to go, but I think I'm headed in the right direction. There have been some pretty major set backs lately, but I'm really pleased to say that I'm at least getting it started.

As some of you know, I did a few posts on what some might would consider a 'blog' on Facebook but I just didn't seem to have much of a following there because 1) it is hard to find readers there because it is difficult to navigate and 2) the sane folks who still haven't gotten lured in by 'the housewife's equivalent to crack', AKA Facebook, are not able to read my posts there without signing up for an account. Plus, I have not been feeling very well the last couple of months, so I haven't been keeping it updated as much as I would have liked.

Therefore, I thought I would start fresh with a new blog here where anyone can read it if they want. I plan to use it as a tool to continue to educate my friends and family - and even strangers who happen to stop by - about my disease and how it affects my life and the lives of my family. I will also use it to keep everyone up-to-date on what all is going on in our lives. Most of the time, there won't be a tremendous amount to write about but at least you will know what we're up to. I also believe it will be a great outlet for me to share some of my feelings about the struggles I face as I deal almost daily with pain and fear, anger and guilt, disappointment and frustration. However, I will also share all the good stuff, too, like the complete love and faith I have in my awesome husband who always treats me like a queen, the tremendous gratefulness I have for my awesome family who is ALWAYS here to support me on the good days and the bad, my thankfulness for our loving church family and friends who have always stood by our side through thick and thin and, most of all, my joy which I continue to find in my Lord and Savior each and every day. Without the awesome support group I have in my family, friends and my walk with my Savior, I honestly don't know where I would be today. No matter what, I am one blessed lady!

See ya soon!

Blessings,
Teresa