Second Week

My second week of treatments didn't go as smoothly as my first. Despite the high amounts of probiotics, the antibiotics have really done a number on my digestive tract causing nausea and other uncomfortable symptoms. Have started popping probiotics like they are candy…lol!

Towards the end of the week I was having some serious symptoms of dehydration, and with my weakened heart that can be very bad. After talking with the nurse at Dr. Jemsek's I found out that I was supposed to be on Lactated Ringers which is made up of all sorts of good stuff like potassium, calcium, and sodium. I should have been taking it on my off days (Tuesday, Thursday, Saturdays, and Sundays) to help with detox and keep me hydrated, but the infusion company never sent them. I got my first batch of bags on Saturday and started my first session with it. That IV bag took seven hours!! I am grateful for to have them, cause they are really going to help, but I'm not liking being attached to an IV pole for that long. Sigh!

Had an emotional and mental break down at the end of the week too. Just everything came crashing down, and I got so frustrated with it all. I started to cry and felt so hopeless. The worry of finances, having to rely on those around me a lot more than I would like, and how much control this treatment and disease has on my life right now. It just all caught up with me. Thankfully my sweetie, David, wouldn't let me hang out my own pity party too long. He reminded me that I was strong and that I will be able to get through it. Only two weeks in and I'm having break downs...lol! I hope I don't have to many more, but if I do I have a wonderful support group that I can lean on when I am too weak.

I did have a bright spot in my tough week. On Monday I was able to spend some time with David’s parents. They are on some huge cross-country bus tour, and the group stopped in Bear Lake for lunch. I couldn't pass up the chance to meet up with them when they were so close. It was so good to see them again. An hour wasn't long enough, but it was better than nothing. Now I want to see my honey!

Week One

Well I have completed my first week of treatment and am now in my second round. I have been put on Merrem which I found, after some research, is a pretty hefty antibiotic that inhibits the bacteria's ability to grow a cell wall. Treatments have gone pretty well. I have had some pretty rough days but I also have had some good days. I can feel that my good days are better than before because my mind is clearer and I have more energy. I was even able to do some gardening which I have missed so much. I am happy to inform everyone that my chest (pleurisy and pericarditis) pains have subsided to almost nothing. I haven't experienced this since Dec. 2008 when I had 9 weeks of antibiotics. I've had some of my other symptoms, however, increase in intensity such as my joint pain, headaches, and convulsions.


I had my worst night last night with convulsions. Usually it only hits my right side, but last night it hit all the muscles in my back. I don't remember everything that happened, but my mom describes that at times I was almost bent in half backwards with spasms. I know there were times that I was having a hard time getting deep breaths, but we were able to get through it. I have restarted my seizure medication and I hope that will help with the spasms.

I'm trying to not get too discouraged with the setbacks. I have to remind myself that this road wasn't going to be easy and that it wasn't going to be short, but that it was going to be worth it because I will get my life back.

Support Group

Yesterday I went to the Utah Lymes Disease support group at the Altaview Hospital. I have always been leery of support groups. A lot of times support groups can turn into a pity session. Don't get me wrong, I know that some people need that time to be able to vent about their frustrations, but that’s just not me. Thankfully this support group is the opposite, everything that I would hope a support group could be. We spent a lot of time introducing ourselves and our experience with Lymes, and then talked about the first annual awareness picnic. I am excited for that; it will be a lot of fun. I really enjoyed meeting all the wonderful people there. They were so kind, and had so many great ideas to help with the symptoms. I even got to meet the current reigning Mrs. Utah. She has Lymes, and has turned Lymes Awareness as her platform. What a great example and a great spokesperson for those that suffer with this debilitating disease. Overall I am really impressed with the group and look forward to becoming an active member of it.

One piece of disturbing news that I found out at the meeting: Congressman Jim Matheson is trying to push a bill that would eliminate long-term antibiotic treatment. Granted that the main reason is to help eliminate the growth of resistant bacteria, but if this bill is passed all people being treated for Lymes with antibiotics will be in trouble, along with any other disease that requires long term antibiotics. The bill either needs to be stopped or an amendment needs to be added to ensure that certain diseases can still be treated properly.

Had a scary moment last night when I was flushing my PICC line. Before pushing any saline through the line you are suppose to pull back the syringe till you see a little bit of blood in the line. When I tried to pull back I was met with a lot of resistance. I tried multiple times without any success, so I thought I would just push the saline through. Something told me to take a closer look at the extension on my line, and I discovered the entire tube was empty of saline. I almost pushed 14 inches of air into my heart! That would have been fatal. With the help of my mom we unhooked the extension and refilled it with saline and were able to get the line working again. I know that I have angels surrounding me, and I like to think that one of them is my Aunt Jeanne who passed away a couple of year ago. She lived with breast cancer for six years and endured many of the same things that I am enduring right now. She is one of my heros and I feel that I have drawn a lot closer to her through this ordeal.

Well tomorrow I start my treatments, and I am anxious to get started. I feel like another chapter of my life is closing and another one is beginning. I don't know what the near future will being, but I am ready to fight to get my life back.

PICC Line

 So I went to Logan Regional to have my PICC Line put in. Before I write up about my experience I found some great information that explains what a PICC line is and what it does.

What is a PICC line? A PICC is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then pushed into the vein until the tip sits in a large vein just above the heart. The tube is threaded through the vein until the end is near to your heart. The space in the middle of the tube is called the lumen. Sometimes the tube has two lumens. This allows different treatments to be given at the same time. At the end of the tube outside the body, each lumen has a special cap to which a drip line or syringe can be attached. There is also a clamp to keep the tube closed when it is not in use. The end of the tube comes out just below the bend of your elbow. What is it used for? The PICC line can be used to give you treatments such as chemotherapy and antibiotics. It can also be used to take samples of your blood for testing. You can go home with the PICC in and it can be left in for weeks or months. This makes it possible for you to have your treatment without having to have needles frequently inserted into your veins. This may be particularly helpful if your veins are hard to find or have been hardened by previous chemotherapy treatment. How is the catheter put in? Your PICC will be put in by a specially trained nurse or doctor, in an outpatient department or on the ward. It will be put in using a local anesthetic, so that you do not feel any pain. First, the skin in the area where the PICC will be inserted is numbed, using a special anesthetic cream. When the skin is completely numb a needle will be inserted and then removed as the PICC is threaded through it into the large vein which leads to your heart. This should not take long and is usually painless. The PICC will be held securely in place by a transparent dressing. You will then have a chest x-ray to check that the end of the tube is in the correct position.

So I hope that you find that information helpful. I couldn't have explained it better. So, about my experience today. Last winter I had a midline which is almost the exact same except the line is a lot shorter so I already kind of knew what to expect and I wasn't looking forward to it. While my midline was done in a hospital room by a nurse, my PICC line was done in an operating room with all sorts of imaging equipment and a surgeon. They first use an ultrasound machine to find possible veins. After that they took me into the OR and I had to lay on a really skinny bed. I have never been a fan of walking into an operating room and get to see all the equipment and tools (*shiver*). While they were getting me prepped for the surgery the worst thing happened, I had to go to the bathroom! Ah! All I could hope for was that they were going to be fast with the procedure. Oh by the way, I was going to be awake for the whole thing. Once things were ready I was given a few shots of Lidocaine in the area they would be working, which was the more painful part of the whole thing, and then the doctor started going after a really nice big vein. They had a hard time trying to tap into the vein because it had great survival reflexes: once pricked it would try to hide.

Finally they were able to get the needle in the vein and started threading the wire that would guide the sheath through the vein. They used a type of X-Ray machine to follow the wire. When they got up by my collar bone the vein constricted and they couldn’t go any farther. I felt like someone was trying to slice me open. It hurt so much! Unfortunately they had to pull the line out and decided to take a five minute break. I was able to go to the bathroom, and then round two began. I was given a nitroglycerin tablet to help dilate my veins. More shots of Lidocaine and they tried again. This time we had success and were able to get everything threaded and sewed I so it wouldn’t pull out. After 30 minutes in recovery I was sent home. What should have been a 30 minute procedure took almost 3 hours.

I have two tips so multiple medications can be administered at the same time. The doctor told me I have the super-duper Cadillac model of PICC lines which can handle CT scan dyes and have blood drawn out of it. Sweet! I'll get better pictures of it tomorrow. I had a wonderful team of doctors and nurses that did a great job and were so nice to me, but I am very grateful to have that procedure out of the way. Monday I will start my treatments.

Where did the time go?

Holy cow! Where have the past two months gone? I can't believe that it is June already. I am so grateful that it is finally summer! Now I can starting hitting this bug with full force and put all me energy into getting well. Let me give you a brief update of what has been going on.

Unfortunately I have been still suffering with a lot of pleurisy/pericardist and other pains. I had a new symptom show up around the beginning of May: massive headaches. Very intense, all over pain with sharp jabs just behind the ears. Sometimes the pain has gone into the ear lobes and feels like someone is trying to rip them off. Went into my family doctor and he diagnosed them as migraine headaches. He gave me a shot and some pills to try. Unfortunately the only thing the medication did was make me jittery. I was finally able to get an MRI and thankfully it came back normal.

Right after the MRI I flew out for my second visit with Jemsek. We went through all my lab results and discovered some interesting things. First of all I have a minor mutation that affects my body’s ability to clot blood, and my body also can't detox as well as other people. I talked to him about my headaches, and he prescribed me a medication called Diamox that is use to treat altitude sickness and brain inflammation. That was the craziest drug ever! Every time I would drink a soda it felt like I was licking a nine volt battery, and it caused awful sciatica. On top of some seizure medication that he prescribed me to help with my shaking and convulsions, I was completely out of it. I couldn't work, couldn't drive, it was all I could do to walk from my room to the bathroom. I decided that I would prefer dealing with the pain so I stopped it all. Thankfully the headaches and spasms have calmed down a bit.

I have to mention how wonderful my orchestra students have been through all of this. It has been hard to be away from them so much, but they have done well. They have been extremely supportive and have worked hard. We finished off the year with an awesome concert and I am so proud of all of them! I will miss them over the summer.

So what’s the next step? I will be getting my PICC line in on Thursday and will be starting my antibiotic treatments. I've had a Mid-line put in last year which is similar except the PICC line is longer. Not looking forward to the procedure but I hope they will have an easier time finding a vein this time.