Today was day 5 of treatment and Dr. Shah came into to talk with me. This is the first time she seemed to be pleased with me, in general. For the first time, she mentioned that the 28 days of IV treatment is "probably just a start" and IV treatment is probably going to be longer. Not unexpected... but nice to hear her say it out loud. My appointment with Dr. Asad is this afternoon (2 pm). I somewhat look forward to this appointment... if only to get some answers about how to get rid of this blasted headache. I feel like the rotating advil/tylenol isn't doing anything. So, maybe Dr. Asad will have some better solutions.
Back to treatment. Although my arm is a little sore from the PICC line (bruised is more like it), the treatment went well. The nurses all were so positive about the line and the treatment went much more smoothly now that the port doesn't require jabbing and hunting for veins. I have to say.... my infusion nurses have been very kind, sweet, and nice. They have gone that extra mile to make me feel safe and supported. I will have to do something nice for them after these treatments are over... I bet they get people doing that a lot, though. My "favorite" nurse was in today and I hope she'll be in when Stephen goes with me tomorrow. She just has this great sense of humor and keeps positive about everything. I was complaining slightly about the insurance company being goofy yesterday. Her reply? "Having all this stuff happen gives you plenty of stuff to write about on that blog of yours!" I was shocked they even knew I blogged. They said that the IV tech mentioned it to them... I guess I said something about the last stick being something I'd have to write about on the blog. It makes me feel good to get a happy greeting from the nurses.... at least they don't think, "Ohh, crud. There's Mrs. Wenzel again!" Or at least they don't say it out loud. PowerPicc wearer OUT!
Wednesday, August 6, 2008
Tuesday, August 5, 2008
The Great PICC Line Debate
I forgot to mention in my last post how much help my husband Stephen has been in this PICC line problem. He had a PICC line in 2001 and has been very upfront about having a line. Since Dr. Shah has given me practically no practical help, Stephen was vital to my getting information toward deciding whether this was right for me or not. Thanks, Stephen. I owe you one.
Day 4: PICC and choose
Today has been a very long day. Got up early to get my treatment done so I could get that itchy IV out. When we got to L. Regional this morning, the IV (day three for that one) didn't want to work. I was getting really worried they'd have to dig for a new one. As the tech was putting the tourniquet, the IV started to drip. They took the tape off and the drip was flowing freely. Lucky me... they didn't have to put another in. Dr. Shah came in, and in her non-committal way, said "I'll work on it." Minus the IV, I went home and took a shower (ahhh....clean!!!). After finishing my shower, I got news that Dr. Shah had filled out paperwork for my PICC and I needed to go back to get it. Before we left, we got my mom to put in a call to the insurance company to make sure I didn't need anything special for the PICC. Needless to say, that call was the end of the easy part of my day.
The insurance company was angry that they had no gotten a referral for Dr. Shah yet (Dr. McClain's office DID call them... I was there when they called!!!!). They refused to acknowledge the referrals for the PICC line and Dr. Asad for tomorrow from Dr. Shah. They will ONLY accept referrals made by the PCP. So, after picking up the referral from Dr. Shah's office, had to go see Dr. McClain's office. His receptionist threw a royal hissy fit.... stating that I'd have to wait 48 hours for the referrals like everyone else. I stated I was supposed to get my PICC today.... and they were demanding a referral, too. After much blustering and yelling (by the doctor's office) and begging and pleading (on my part), 20 minutes later, I had referrals.
We immediately called the number to schedule my PICC line insertion. At 1:30 this afternoon, my PICC line (called affectionately by the Howard County General Hospital people "Power PICC") was inserted. It was a textbook insertion and the only major pain I felt was from the lidocane. Now I am starting to feel a little bit of an arm cramp. But, even that is better than those darn 2 to 3 day IVs! My only problem now?? I majorly did TOO much and I need a nap! Oh, yeah. My head and body still hurt, too. :) LymeBlog out! :)
The insurance company was angry that they had no gotten a referral for Dr. Shah yet (Dr. McClain's office DID call them... I was there when they called!!!!). They refused to acknowledge the referrals for the PICC line and Dr. Asad for tomorrow from Dr. Shah. They will ONLY accept referrals made by the PCP. So, after picking up the referral from Dr. Shah's office, had to go see Dr. McClain's office. His receptionist threw a royal hissy fit.... stating that I'd have to wait 48 hours for the referrals like everyone else. I stated I was supposed to get my PICC today.... and they were demanding a referral, too. After much blustering and yelling (by the doctor's office) and begging and pleading (on my part), 20 minutes later, I had referrals.
We immediately called the number to schedule my PICC line insertion. At 1:30 this afternoon, my PICC line (called affectionately by the Howard County General Hospital people "Power PICC") was inserted. It was a textbook insertion and the only major pain I felt was from the lidocane. Now I am starting to feel a little bit of an arm cramp. But, even that is better than those darn 2 to 3 day IVs! My only problem now?? I majorly did TOO much and I need a nap! Oh, yeah. My head and body still hurt, too. :) LymeBlog out! :)
Monday, August 4, 2008
Day 3: Still going strong
Well... today was day three of twenty-eight. It took about an hour to take the IV medicine today. Jane kept me company during the hour. Dr. Shah stopped in and seemed annoyed that I don't feel better yet. She referred me to Dr. Asad, a local neurologist. I have to admit... this whole event is making me feel a little scared. All I want is to feel better. But, I am very tired of being worn out.
Today is the first day that I'm having any adverse side effects of the medicine. Feeling slightly queasy on top of everything. I feel like I am in need for a small nap. Sigh... maybe I'll wake up a little less queasy.
Thanks for the well wishes.
Today is the first day that I'm having any adverse side effects of the medicine. Feeling slightly queasy on top of everything. I feel like I am in need for a small nap. Sigh... maybe I'll wake up a little less queasy.
Thanks for the well wishes.
Sunday, August 3, 2008
Day 2: Rocephin and Misc. Stuff
As I said, I will blog my progress on the daily IV. But, I also intend on blogging what else is happening in my life. So, if you personally don't want to hear the IV stuff... skip over and enjoy the rest.
Thank you goes out to all those who have expressed concern and compassion for my current difficulties with Lyme. This has been a very trying time and I really do appreciate the encouragement.
Ok... onto day two of Rocephin. Last night, the cat decided that my arm needed "cat love". She decided to work on the bandage and IV tube while I was sleeping and had the tubing almost uncovered by morning. Lucky for me, the IV was still in place. But, to be on the safe side, they still decided to change my IV. After the tech working with me dug the first one for about 2 minutes with no success, she called in another nurse. This one dug another 3 minutes in another spot. THEN went back and dug at the first spot for another 2 before moving onto my left arm. When she saw where yesterday's IV was located, she made the comment, "Oh, yes! This is going to be a difficult one." Then, she proceeded to put in a IV about 2 inches above my yesterday's IV and root at it for about a minute or two before she finally got it. I really was working hard to stay calm... but the pain was overtaking my desire to remain calm, cool, and collected. I asked if we were going to have to do this at least every three days if this would make me a good candidate for a PICC line. The nurse agreed I would be... but warned me that PICC lines come with their own "bad things". I am not saying I really want to be attached to a PICC line... but I am saying with great certainty that I cannot go through being jabbed in the arm multiple times with IV's for 28 days straight. Just think... what if this goes LONGER than 28 days??? NOooooooooooo! Anyways... the treatment went well with minimal burning. I still have a killer headache and my muscles hurt and burn like I hope to never feel again.
I then had a CT scan, by orders of the new infectious diseases doctor, Dr. Shah. The tech decided he wanted to try to make me smile. After I assured him that I was "old hat" at the CT thing and that I was going to get "a little warm" all over... and if I had problems breathing, let him know. He smiled and had me sign the paperwork. The next words out of his mouth were, "Just remember, when you get warm, you may feel like you are need to go to the bathroom. That's normal. It is even normal to feel like you are releasing urine. Although, if you start to feel liquid running down your legs, you probably just peed. That's not normal and we'll have to call in the hazardous waste janitor." Then gave me a killer grin. I had to laugh. He then smiled and said he was so glad he made my day brighter. I had to smile at him again when he was injecting the dye. I thought about what he said when I started to get that "flash warmth" and had to chuckle. So, the CT scan went well and hopefully we will have results soon.
I'd like to take time now to give a virtual hug to some of my family. They had to put their 16 year old cat down. She was a very sweet, loving, friendly cat and my heart goes out to the family. Anyone who has had to put a beloved animal to sleep knows how hard it is to do and how selfless one has to be to stop the animal's suffering when all you want is your little buddy making you feel as happy as they do on a regular basis. I hope, with time, they will be willing to open their hearts to a new kitten or a shelter cat. There are too many animals out there who just need a little love and they have so much love to share.
One last thing... last night, Jane and I decided to sit down and watch a "classic" movie. We chose The Prime of Miss Jean Brody with Dame Maggie Smith in the lead. I can understand why Dame Maggie won the Oscar for her portrayal of Miss Jean Brody, the misguided, eccentric, liberated educator of the 193o's Scotland. Her portrayal makes you both feel love for her character at the same time you realize that, no matter what she thinks she is doing, she is poisoning the minds of her students she is trying to enrich. You can see an educator who, at one time, was the end all to end alls of teachers. The kind of teacher who gives her all to teaching. The problem is... she is no longer at her prime. She is spewing propaganda and exercising loose judgment and poor moral values. She seems to miss the fact that, no matter how much she wants to mold society and the youth of today, she is also suffocating those whom she takes under her wings and trying to control destiny... something that no one has a right to do for another person. I absolutely loved the movie and look forward to viewing it every once in awhile. I have to say, I see a little of Miss Jean Brody in Dame Maggie's portrayal of Professor McGonagal from Harry Potter. I wonder if that is intentional???
Thank you goes out to all those who have expressed concern and compassion for my current difficulties with Lyme. This has been a very trying time and I really do appreciate the encouragement.
Ok... onto day two of Rocephin. Last night, the cat decided that my arm needed "cat love". She decided to work on the bandage and IV tube while I was sleeping and had the tubing almost uncovered by morning. Lucky for me, the IV was still in place. But, to be on the safe side, they still decided to change my IV. After the tech working with me dug the first one for about 2 minutes with no success, she called in another nurse. This one dug another 3 minutes in another spot. THEN went back and dug at the first spot for another 2 before moving onto my left arm. When she saw where yesterday's IV was located, she made the comment, "Oh, yes! This is going to be a difficult one." Then, she proceeded to put in a IV about 2 inches above my yesterday's IV and root at it for about a minute or two before she finally got it. I really was working hard to stay calm... but the pain was overtaking my desire to remain calm, cool, and collected. I asked if we were going to have to do this at least every three days if this would make me a good candidate for a PICC line. The nurse agreed I would be... but warned me that PICC lines come with their own "bad things". I am not saying I really want to be attached to a PICC line... but I am saying with great certainty that I cannot go through being jabbed in the arm multiple times with IV's for 28 days straight. Just think... what if this goes LONGER than 28 days??? NOooooooooooo! Anyways... the treatment went well with minimal burning. I still have a killer headache and my muscles hurt and burn like I hope to never feel again.
I then had a CT scan, by orders of the new infectious diseases doctor, Dr. Shah. The tech decided he wanted to try to make me smile. After I assured him that I was "old hat" at the CT thing and that I was going to get "a little warm" all over... and if I had problems breathing, let him know. He smiled and had me sign the paperwork. The next words out of his mouth were, "Just remember, when you get warm, you may feel like you are need to go to the bathroom. That's normal. It is even normal to feel like you are releasing urine. Although, if you start to feel liquid running down your legs, you probably just peed. That's not normal and we'll have to call in the hazardous waste janitor." Then gave me a killer grin. I had to laugh. He then smiled and said he was so glad he made my day brighter. I had to smile at him again when he was injecting the dye. I thought about what he said when I started to get that "flash warmth" and had to chuckle. So, the CT scan went well and hopefully we will have results soon.
I'd like to take time now to give a virtual hug to some of my family. They had to put their 16 year old cat down. She was a very sweet, loving, friendly cat and my heart goes out to the family. Anyone who has had to put a beloved animal to sleep knows how hard it is to do and how selfless one has to be to stop the animal's suffering when all you want is your little buddy making you feel as happy as they do on a regular basis. I hope, with time, they will be willing to open their hearts to a new kitten or a shelter cat. There are too many animals out there who just need a little love and they have so much love to share.
One last thing... last night, Jane and I decided to sit down and watch a "classic" movie. We chose The Prime of Miss Jean Brody with Dame Maggie Smith in the lead. I can understand why Dame Maggie won the Oscar for her portrayal of Miss Jean Brody, the misguided, eccentric, liberated educator of the 193o's Scotland. Her portrayal makes you both feel love for her character at the same time you realize that, no matter what she thinks she is doing, she is poisoning the minds of her students she is trying to enrich. You can see an educator who, at one time, was the end all to end alls of teachers. The kind of teacher who gives her all to teaching. The problem is... she is no longer at her prime. She is spewing propaganda and exercising loose judgment and poor moral values. She seems to miss the fact that, no matter how much she wants to mold society and the youth of today, she is also suffocating those whom she takes under her wings and trying to control destiny... something that no one has a right to do for another person. I absolutely loved the movie and look forward to viewing it every once in awhile. I have to say, I see a little of Miss Jean Brody in Dame Maggie's portrayal of Professor McGonagal from Harry Potter. I wonder if that is intentional???
Saturday, August 2, 2008
Day One: Rocephen
Well, as I sit here, I have my arm IV bandaged. 28 days of Rocephen, to start. So far, tolerating it well. Will probably blog every day to keep updated on how I'm doing. Right now, feel no different.... just exhausted. Kinda hoping Monday brings the decision for a PICC line. This new IV daily is going to be a real pain.... literally.
Holy Blood Brain Barrier, Batman!
For those of you who have been following my blog, you know they suspected I have Lyme Disease (thank you Ticks of America!). Well... the ever icky saga continues....
Yesterday, I went to see my PCP and he was astounded at the fact the ER hadn't called me with my results. My Lyme IGG AND IGM were positive. My new infectious diseases doctor informs me that I probably (lucky me) have contacted Lyme Disease twice and my latest is causing some of the nicer problems (the rash), and the older one is causing the headache (breaking the blood brain barrier anyone?). So, today, at 9 am, I get to go in to start my IV antibiotics. Lucky, lucky, lucky me.
Both doctors are also freaked out because of a couple of my blood tests, too. Last month, my AST level was at 35. Normal is between 10 and 30. They figured they'd redo it this month and not worry so much. IN the ER, the AST level was 110. THEY FREAKED! They might have also freaked because ALK PHOS was at 145 (normal is 42-98) or the ALT was at 194 (normal is 0-31). They are hoping that the Lyme is the reason my levels are going haywire. I'm just plain scared.
So, as I venture towards the Hospital this morning, I realize several simple things. First of all, life is funny. I was so looking forward to my new job which I think I might as well kiss goodbye (despite the fact they are being so kind about the whole thing). A UPS in the bush is worth many DHL's in the hand... or something like that. Second of all, if you put anything in Batman speak, it sounds so much less scary. No... really! When I told Stephen my news yesterday, the only thing I could think of was my title. Maybe I can hope it is affecting my brain, too and that, once out of my system, my brain will think normal thoughts, too.
Yesterday, I went to see my PCP and he was astounded at the fact the ER hadn't called me with my results. My Lyme IGG AND IGM were positive. My new infectious diseases doctor informs me that I probably (lucky me) have contacted Lyme Disease twice and my latest is causing some of the nicer problems (the rash), and the older one is causing the headache (breaking the blood brain barrier anyone?). So, today, at 9 am, I get to go in to start my IV antibiotics. Lucky, lucky, lucky me.
Both doctors are also freaked out because of a couple of my blood tests, too. Last month, my AST level was at 35. Normal is between 10 and 30. They figured they'd redo it this month and not worry so much. IN the ER, the AST level was 110. THEY FREAKED! They might have also freaked because ALK PHOS was at 145 (normal is 42-98) or the ALT was at 194 (normal is 0-31). They are hoping that the Lyme is the reason my levels are going haywire. I'm just plain scared.
So, as I venture towards the Hospital this morning, I realize several simple things. First of all, life is funny. I was so looking forward to my new job which I think I might as well kiss goodbye (despite the fact they are being so kind about the whole thing). A UPS in the bush is worth many DHL's in the hand... or something like that. Second of all, if you put anything in Batman speak, it sounds so much less scary. No... really! When I told Stephen my news yesterday, the only thing I could think of was my title. Maybe I can hope it is affecting my brain, too and that, once out of my system, my brain will think normal thoughts, too.
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