Sweet Dreams? (Warning ~ Gross Pics)

It looks like my admit is a go for tomorrow. So while you are dreaming about ghosts, goblins and mini Snickers bars tonight...I will be dreaming about this...

These are pictures from my last PICC placement in September...

Yep, I'm getting another PICC. Since I need at least 6 more weeks of IV's and my last PICC got infected, I've got to go through this procedure again. While a port would be nice, my doctors think that once I eradicate this MA I will not need IV's enough in the near future to warrant a port. So another PICC it will be. I have NO idea why this procedure makes me so anxious? Maybe because it took three sticks to get it right the last time? I have had organs removed (gall bladder/appendix), I have had bronchs, I have been poked/prodded...heck I've even had two babies. Yet, no procedure makes me more nervous than this one. Once it's placed it's no big deal at all. It's just this tiny little 30 minute procedure that gives me chills. I'm not to the point where I need conscious sedation (Versed) yet. However, thank goodness for heavy doses of Xanax!

Preparing for Admit #4 in 4 Months...

I'm getting really good at this... I am being admitted to the hospital on Monday (if there is a bed available) for three days to get my PICC placed and start on my 4th IV antibiotic in as many months. This will be 4 hospital admissions, 4 different IV antibiotics and 3 PICC lines...all in 4 months time. What a whirlwind. Throw in my 2 ER visits and I think I've made it onto some type of shit list with my insurance company.

I had an appointment with Dr. Dazzle and the team today. They were able to find 68 doses of IV Amikacin in Texas! The place in Texas will ship these to me weekly and my home care company will just come a couple times a week to do blood work and dressing changes. I'm excited that we now have what I need and I can get started on this last phase of IV's. I just want to get this part of the treatment plan over with. I'm ready to move on with my Mycobacterium Absessuss being history...until it rears it's ugly head sometime in the future. Hopefully, really, really far in the future!

Drug Shortages are Infuriating

It is going on the third month that I have been dealing with the effects of the Amikacin drug shortage in the US. As a result I spent 4 weeks trying and failing both 2nd and 3rd line IV antibiotics for the treatment of my Mycobacterium Absessuss. The national media has finally picked up on this story. Here's an article my friend Marci posted on Facebook earlier today.

http://www.msnbc.msn.com/id/39798646/ns/health-health_care

I am one of the people whose treatment is dependent on drugs we have no way to obtain. My hospital did receive a shipment last week. The first shipment they have received of Amikacin in many months. However, we haven't been able to find a way to get the medication to the Home Care company to administer to me. People WILL die as a result of these shortages. People's cancer will not go into remission or they will relapse. People with MA will sustain permanent lung damage. The article reports that a couple of patients already died as a result of a morphine shortage.

I really don't want to get political, but I have been living this for several months and it's infuriating! We are supposed to have the best health care system in the world... However, these drugs, which are all very cheap to consumers, are not being produced, because there is not enough of an incentive for the drug companies. These drugs don't make the companies enough money to be a priority. This is rationing of care. Unfortunately, our system based on profit has decided that my care is OK to ration.

Fun While Waiting!

Things have been going pretty well here. I have to say that it took me about 6 days after the IV's were discontinued and my PICC was pulled before I started have ANY energy at all. I had never felt this type of fatigue before. My cancer patients at work have talked to me about it all of the time, when the chemo depletes their entire immune systems. It is a fatigue deep down in your bones. It's not that your tired...it's that your body won't perform no matter how hard you will it to. I had no white blood cell count, no immune system and definitely no energy. I experienced bone pain, which was my bone marrow trying hard to restore my blood to normal. It was a bit scary and something I hope I never have to experience again. It also made me appreciate the symptoms that my patients have described to me on a whole different level! In the end, I was glad that the decision was made to pull my PICC and stop the IV Cifoxitin. Even though it means I will be starting over with a new PICC and 4-8 weeks of IV Amikacin soon.

So I have been feeling well, still tired, but OK overall, for the past 5 days. We've been making the most of this little "IV vacation"! Crazy to say that, since I am still on 3 antibiotics, one anti-fungal, a probiotic, a bunch of vitamins, Singulair and nebulized albuterol. However, the IV's are just so intense, that any break from them is reason to celebrate.

We had a blast at my dear friend Elizabeth's Halloween Party on Saturday!

My little guy, Jake, won for the scariest costume in the kids costume contest!

Tonight we went trick-or-treating at my grandmothers nursing home. I made Jake cute, not scary. He passed out in the car before we even started.

Oh, the weekend was great for other reasons too! It was 80 degrees and sunny here in Cleveland, Ohio State won against Purdue on Saturday and the Cleveland Browns won against the New Orleans Saints on Sunday! It doesn't get much better than that!

Basically, I'm enjoying this little reprieve. I've got an appointment with Dr. Dazzle on Thursday. I have a couple little things to discuss with him...like my right eye and left ear acting funky. My sinuses are also really trying to give me trouble. I think they are confused, because they are being blasted with antibiotics. They really want to be infected, but the drugs won't let them... Fun stuff! The Amikacin that I will be starting IV has been out of stock for months. Hospitals are just starting to get it back in stock. However, the home care companies do not have access to it yet. We are working on trying to get some in the hands of a home care company that can work with me. This may take a week or two. When we get it figured out I will go to RB&C to have my PICC placed, then have my first dose on IV's in the Dialysis Center. Then I can go home the same day! No hospital stay this time...Woo Hoo!

That's all for now... Off to enjoy more IV-free days before I'm hooked up again!

The Product of Mommy Guilt...

You too could be the owner of 2 dwarf hamsters if you were lucky enough to be my children right now!
(Disclaimer: This is not our actual hamster. I swiped this photo off of the Internet. No, we are not planning on eating our hamsters!)

The guilt got the best of me. The guilt has been overwhelming. For over a month, during these intense treatments, I have probably spent nearly 75% of my time in bed. My body feels broken. I feel worthless. I think the most difficult thing has been the inability for me to carry on the roles that have made up my life for so many years. I have tried to be a good wife, a good mom, a good employee...now I feel good for, well, not much. The kicker happened last week during one of my high fevers. I was laying in bed, sleeping in fits and starts, when my kids got home from school. My daughter decided to craw into bed with me and watch TV. She stayed with me for hours. Every time I gained a bit of consciousness I found my dear little girl holding my hand, rubbing it ever so gently. So sweet...yet so wrong. It's just not supposed to work that way.

I know this will pass. At least I hope this will pass. Sometimes thoughts about possibly getting to the point where I can't maintain the life I built for myself creep in. I am just telling myself over and over that these treatments are going to make me even better able to fulfill all of my roles in life for a longer period of time. It's just going to take time. No pain, no gain...right? Hopefully, they will give me more energy when all is said and done.

This brings us back to the silly little hamsters. I mustered enough energy on Sunday afternoon to get the kids out for a couple hours. We went to Panera, which is right across from the pet store. My kids have been begging for a pet forever. The answer has always been, "We don't need another thing to take care of...we can barely take care of ourselves". The kids wanted to go to the pet store and I agreed that we could look, but that we were NOT buying anything. We walked out with two tiny little hamsters and all of the fixin's that we needed to give them a cozy little home with us. My heart just hurts for these kids right now. They seem to be doing great. Both are cruising along in school and are not having behavior issues that we have noticed. Yet, I still feel guilty that I can't be the mom they deserve right now. Hence, I bought them hamsters.

In working with kids with parents with cancer in the past, I know that having these kids work with animals is a great way for them to learn about caring for the sick loved one. Maybe they will learn a couple lessons from little "Lilly" and "Casey"? I just hope my little guy doesn't squeeze his too tight! We'll see...

Did I Do It? Was I Able to Give Myself a Shot???

Two Posts in One Night...Oh My!

Forget the previous post... It is completely null and void now. Dr. Dazzle just swung by...yes, at 9pm at night...to tell me that I have a white blood count of "0" now, do to my IV drug. I have 100 neutrophils total. Basically, I have absolutely no immune system. We are going to start Neupogen tonight, but Dr. Dazzle thinks my staying on the Cifoxitin is going to do more harm than good in the long run. I will have no PICC placed tomorrow and will likely start on about 4-8 weeks of Amikacin IV once it's available in the US again.

My, oh, my how quickly plans can change! So I'm disappointed that I failed yet another IV antibiotic. I have been on 3 and have failed all 3. Yet, Dr. Dazzle thinks the nebulized Amikacin is working well for me, so we'll stick with that and the oral antibiotics for a while until we can get a hold of the IV Amikacin. Then we'll try again and start over.

I guess I'm getting a little respite I wasn't planning on...

Being Poked and Prodded

So I arrived at the hospital today at 2:30pm feeling, let's say, like shit. I had a fever, my bones hurt, my muscles hurt, my joints hurt, even my hair hurt. Due to rooming issues I had no room available for me when I arrived. I was given a blanket (since I had the chills) and a chair and sat in the alcove in the CF unit for a little over an hour. It pretty much sucked, but I didn't really have any other options. The staff were all fantastic, though. I do love them!

I felt so much better when I got to my room, but my excitement was dashed when the IV team arrived. Peripheral IV's are not my favorite. Especially since my veins ALWAYS roll and the phlebotomists always have to dig around for minute on end until they find the pesky little bugger. Yep, it happened this time too.

I noticed this morning that I have developed a rash all over my belly and arms. This is making it a bit more clear that all of my symptoms are a result of a reaction to the Cifoxitin, and not a virus or infection. So when I saw Dr. Dazzle I used all of the charm I could muster to try to convince him that my little PICCy friend should stay. I begged, I pleaded. I batted my eyelashes...but Dr. D convinced me that this was a necessary step we had to take just to remove all possibility that I have a PICC infection. Especially, since I now have just a teeny tiny immune system. So my PICC is now gone and I am grieving it's loss :-( Really, I am...because tomorrow I have to have a new one placed in the other arm. This is probably no big deal for some CFer's, but it takes me a hefty dose of Xanax and about and hour of mental preparation to get myself to a place where I can endure the procedure without being a complete basketcase. I think it's because it took them 3 tries of sticking that gynormous needle in my arm last time before they could thread it correctly. There are some gory pictures of what I went through a month ago when getting my sorely missed PICC.... I couldn't get them to load here due to the poor connection.

So, this PICC placement procedure is what I have to prepare for again tomorrow. This is what my dreams will be made of tonight. A few people have asked why I didn't get a port. Trust me, I've asked, several times. My docs just all agree that since I haven't needed IV's often in the past, that after this cycle of IV's they don't anticipate that I'll need them again for a good long time. I hope that's true, so I'm heading their advice for now.

If my fevers, aches and general sickness continue now that we removed my PICC, we know that the Cifoxitin is the culprit. However, we are going to try to mull through the IV and treat the symptoms. If they are nearly unbearable, we will just try to get 2 more weeks of the IV's in. If they are somewhat bearable, we will try for 4 more weeks. With needing to stop sooner than anticipated, we may end up revisiting IV Amikacin in the Spring.

I guess I was just sorta wishing that my body would be kind to an antibiotic for once. I was hoping that it would have been a good hostess, showing the good guys where to go and what to do to get rid of the bad guys...maybe without attacking me in the process...

Noooooo! Not the Hole!

Yeppers, it looks like I'm being admitted again tomorrow. We CFer's often affectionately call the hospital "The Hole". Day 5 of fevers does not make Dr. Dazzle happy. I'm frustrated. This wasn't part of my plan. The fevers have continued. They are very sporadic and change quickly from low grade to pretty high. At 4pm today I was at 101.5 and felt like crud.

My blood cultures have not yet showed signs of infection. However, with such a low white blood count it may be tough to pick up an infection in me right now. I am going to mosey into the hospital tomorrow, they are going to pull my PICC and I am going to get my IV's though a peripheral IV for a day or two. Then they are going to place a new PICC, in the other arm, on Thursday. Hopefully, I'll be able to go home Thursday or Friday.

If we go along with this plan and the fevers stop, we know it was likely my PICC being a trouble-maker. If my fevers continue for a time, but go away eventually, than this is all probably a virus. If the fevers continue indefinitely, then we know that they are a side effect of the antibiotics. If that's the case, I will just have to work on managing the fevers for the next 2 months, while I'm on these IV's. That makes me a little nervous, because How will I know that I have an infection??? There's a question for Dr. D.

So this isn't all bad. At least I'm heading in feeling horrible. It will be nice to just lay back and be served for a couple days. One annoying this is that the CF floor is full...NO VACANCY! Therefore, I have to stay in the adult hospital...Boo! It's not quite as fun :-/

BLAH ~ Fevers

I'll do my best to update, but I'm still feeling a bit groggy after my adventures in the ER last night. It started Friday night when I woke up soaking from head to toe with night sweats. I never, ever get night sweats, but I figured that I must have been warmer than usual due to this bit of Indian Summer that we have had here in Cleveland lately. I never took my temp. On Saturday I went to the farm and pumpkin patch with family for a fun-filled day! I was exausted when I arrived home and, once again, experienced night sweats in the middle of the night on Saturday.

It wasn't until Sunday afternoon, when my body started feeling achy, that I thought that it might be a good idea to take my temp. That's when I discovered my low grade fever...99.4. I always run low (in the 97's), so this was a legitimate fever. I checked my temp several more times during the day and the fever seemed to come and go. It's a very fickle little bugger.

So last night, after freezing my butt off all night and sleeping very little, I finally got up at 2am when the sweats started, to take my temp. It was 100.4. Not super alarming, but I immediately googled the PICC line procedures, knowing that fevers were of concern. In HUGE bold letters on the page I found it said that you must procede to the nearest emergency room immediately if you have a fever over 100. Ugh! All CF patients and CF momma's know that ER's are a huge waist of time for us. The staff don't typically understand our disease or needs. I called the pulminologist on call and made my best effort in convincing her that I really didn't need to go to the ER. It didn't work...so off to that germ-filled place I went...knowing that my job would be more educating them about what I needed them to do, then actually getting any information from them.

So Dr. NoPersonality walked in when I got to my room. He asked me what drugs I was on. When I told him about the 3 grams of Cifoxitin his eyes popped out of his head and he asked if I was sure that wasn't an error. I bought my next dose of IV's with me, so I pulled out the container and showed him the dosage information. By the way, all experienced CFer's know tha you need to bring your own drugs to the ER. Dr. NoPersonality then mumbled that he has never seen anyone on that high of a dose of IV Cefoxitin for this extended period of time. It was as if he was questioning my treatment plan. This guy, that I had to spell "Mycobacterium Abssessus" for was trying to make a judgement about my coarse of treatment. Maybe if he had a personality I would have thought this was just general conversation, but instead it came out more as judgement.

I proceeded to tell him that I needed labs and blood cultures drawn. I had to explain that I have a boarderline low white blood count, but that the cifoxitin has the potential to make this even lower. A normal white blood count is 4-11. If my white count is around 6 ot 7, that probably means I have a raging infection. So they drew blood cultures from the PICC and from a periferal vien so they could see if there is an infection in the line only or in the line and the blood. The blood cultures will take a day or two to grow, but the CBC showed that my white count is now 2. I am officially neutropenic and immuno-compromised. When is gets to 1.5 we start neupogen shots. I was hoping this wouldn't happen so quickly. There is a possiblilty it can bounce back, but it was frustrating to hear that it is at this point now. This does not mean that I don't have an infection, however.

They let me go around 6am and I followed up with Dr. Dazzle today. The ER doctor was absolutely convinced that I have a PICC infection, and that I need to get my line pulled ASAP. I'm not entirely convinced. I have little kids that are swarming with germs around me at all times. I think I probably have a virus. It makes more sense to me, since the boat load of antibiotics I'm on should really kill any infection I might get. Dr. Dazzle agrees with me. So, the plan is that we are going to wait for the blood culture results to come back. If my line is infected I will be admitted into the hospital, have my line pulled, get my IV's through a periferal IV for one day, then get a new PICC placed the next day. Oh, joy! How I love having PICC's place. Otherwise, I'm just going to ride out the fever...calling if it gets worse. If the fever does still last a few more days, I will get the PICC pulled anyway and go with the plan to have a new one placed. The fever has broken now, but I still feel like crud...fatiuge, muscle aches, etc... I'm just laying low for now.

CF is always an adventure!

The Good News!

I had an appointment with Dr. Dazzle last Thursday. I was nervous about my PFT's. I have been REALLY junky since starting the Albuterol/Amikacin nebulizer treatments. My lungies are not used to nebulized treatments. I thought for sure this was a bad sign that I wasn't improving. Especially since I'm on enough antibiotics to keep a village infection-free. I was wondering where this junk was coming from. Well, it turns out it must have been hanging around for a while and it's finally working it's way out.

For those of you without knowledge about CF, it's as if my lungs are constantly infected with pneumonia and bronchitis. All of that infection clogs and scars the airways. Basically, mine are beginning to unclog! My FEV1 (large airways) increased by 4%, while my FEC (small airways) increased by 7%. It may not sound like a lot, but it's HUGE! I actually feel like this intense treatment plan is doing some good! I feel like I made the right choice by moving forward with the treatment now! It has given me even more motivation than I had before.

I'm still chugging along with my IV's. I've screwed up a couple times, gave myself double heparin or forgot to clamp when done, but I'm not dead yet, so the mistakes must have not been too major. I did however, freak Dr. D out a bit. I told him that my PICC got pulled out a couple centimeters during a dressing change and when the nurse turned her back I pushed it back in. Apparently, this is a no no. I actually knew it was a no no, since the nurse told me so just before I made the executive decision to push it back in. Apparently, the site still looks OK, but the real danger is sepsis. I'm not sure how I could become septic on this many antibiotics, but I'm sure it can happen. That was a week ago and I'm still doing OK, so I think the threat of infection is gone. Dr. D just made a point to reprimand me and I promised not to do it again :-/

All in all, things are going well. My bone marrow is holding up. We anticipate that it will start to fail in about 2 more weeks. At that point they are going to teach me how to give myself Neupogen shots. Nope, they can't go in my PICC. I actually have to inject them into my belly. Hey, if my cancer patients can do it, so can I! I'm thinking this would be a fun marital bonding activity, so I may actually ask my husband to give me the shots. I'm sure this is not what he had in mind when he vowed "in sickness and health"...Ha!

I've not had much motivation to open my laptop very often lately. I think that so much of my social networking world is tied to CF. Since I'm "living" CF for hours upon hours every day right now, I just think my brain needs a break. So please don't worry if you're not hearing from me much. I'm doing better than I expected!