March 31, 2010

To wean or not to wean

That is the question of the week. Here is a little recap of the situation and a little history behind my hesitation.

Last week at my Drs appointment I was give a prescription for a drug called Xifaxan. All my Drs know I am breastfeeding and know how important it is for me to continue. But I always run new meds by my Pediatrician first to make sure she is OK with it.

History: Alexander and I didn't get off on the right foot, or should I say boob, in the beginning. He had some latch problems, but once we got home, we got it all figured out and since then hes hooked. A few weeks after, my Hematologist tells me that I have to stop because of my new meds. I was heartbroken and angry. We had just settled in to the whole thing and now he tells me I have to stop. So I went out, bought some bottles and formula....Alex protested. He hated it. So much to the point that my Mother in Law would have to feed him, because if I had him he would snuggle into my breast and cry his little heart out. Go figure two weeks later at his next check up, Dr. B ask how the breastfeeding is going. I about broke down in tears. When I told her what happened, she told me, that my meds were perfectly compatible with breastfeeding and even showed me in her manual. We spent the next few weeks getting back on the breast and for the most part its been smooth sailing from there. A few times after MRI and surgeries, he has had a bottle, but not one bottle in the last 7 months. And now this.

When I called Dr B about the new meds, the nurse called me back and said that there wasn't much she could find on Xifaxan and so she recommended I stop breastfeeding. I of course was thrown because I checked with my prescribing Dr and the pharmacist and both said it was OK. I also looked it up on Dr. Hales forums and he said the benefits out weigh the risk. I am so torn on what to do.

I don't want to have to give up our special bonding time if I don't have to, but I'm starting to get discouraged. If I do have to stop then fine, but I want to make sure it is my only option. And honestly, Alex has shown no signs of wanted to wean. He nurses morning and night. Sometimes during his noon nap. So its not like he is at it all day. The only other time he nurses more often is if he gets hurt or is sick. I don't want to do anything that will cause him harm, but I don't want to do something that will break both of our hearts if its avoidable.

And for the record. Yes he just turned on. I know a lot of people have a thing about breastfeeding past the age of one or at all. I don't have anything against formula. My first son was formula fed. But I have also seen the benefits of breastfeeding over formula. So what would you do? Please let me know what you think! I wish there was just a cut and dry answer here.

Here are two links from Dr Hales site where he talks about Xifaxan. Although the reason for taking them isnt the same as mine, what do you think?

Xifaxan (rifaximin)

Xifaxan

March 25, 2010

Make a call & save some money

Wow, lack of sleep must have really gotten to me yesterday. For a second there I forgot I even posted anything. But that my friends is the toxins kicking in. Looks like encephalopathy is setting in. Its OK though because I took my meds today;)
And we are doing everything we can to keep it under control.

Take my new medication for example. Anyone ever heard of or been on Xifaxan? Well when my Dr told me it could be expensive, he was NOT kidding around. The original price was almost a $1000. But with our insurance that knocked it down to a $360 and change. Now while most people might cringe at that price, I am no stranger to ridiculously priced medication. When I was pregnant I had to take Lovenonx injections, twice a day and that was $80 a week. Luckily Ive had a nice break. My coumadin and other meds I am currently on are all$10 a bottle. The Prevpac I was on the last two weeks was only $100. Thank God I'm about done with that. And now I get his with this.

Anyways, what I really wanted to say, I am still trying to find a way to come up with the money for these medications. The case manager at my lawyers office suggested I call the manufacture of the drug and see if they have any rebates or coupons, so I did. And guess what, I am being mailed 3 $75 rebates as I type:) So just a quick tip if you need some help. Call and ask. The worst they can say is no. They might beable to point you in the direction of someone who could help though.

March 24, 2010

Recap of the day

Well my appointment went pretty good today. Not at all what I was expecting. Dr O is a great Dr. And the nurses are the best. Its nice that they can still joke and be playful when there is so much going on. I feel so much more at ease that way. If I don't laugh, I will cry and so its a very good thing they keep me laughing.

How are about a quick line up of what went down today? I'm insanely tired, but just wanted to write it all out while its still fresh in my head.

* MRI shows not big changes :)
* My MELD score is 17
* No driving and careful with the stove!
* Prescription for Zifaxan give to help with the encephalopathy
* Dr O agrees with my application for disability
* Scheduled class and appts for my transplant evaluation
* They took 13 vials of blood and a urine sample
* Talked about why shunt would not be the best option right now.

Dropped of my script at CVS then came home. Called my lawyer to fill them in on whats new, left a message with the pediatrition to make sure the new meds are ok while breastfeeding, then called the Liver Clinic to let them know that the script went though and that the lawyer would be faxing over some papers for the Dr.

That is all I have written down. I keep a book to help me keep track of appointments, test and all that good stuff. I'm looking for a calendar type book to switch to, but for now its me and my little purple book :)

Off to take a nap! Much love.

March 23, 2010

Transplant Appt

Tomorrow is my appointment at the Methodist Specialty and Transplant Hospital. Its been 6months since my last visit. I'm not expecting anything to change much tomorrow. I know we will go over my MRI results and probably a few other things. I am writing out my questions tonight. I have quite a few. The good thing is that my Dr is patient with me and apparently gets a kick out of my sarcasm :) It will be my first morning visit, so I hope he is a morning person!

Is it crazy that I'm not really nervous about tomorrow? Mostly I just want to get it over with and have a full 3 weeks without any appointments. And considering the last 3 weeks were full them, I think I deserve a little down time! Give my veins some time to recuperate from the constant poking. I wonder if I will need another liver biopsy? Not that I want one, but with my luck it will be a yearly thing like my endoscopy. Just another question to add to the list. Wish me luck...

March 18, 2010

Good Day

I don't know if it was the early appointment or the fact at both my boys were asleep at 9and slept {almost} the whole night, but I actually had some energy yesterday. Its been a long time since Ive been up to the challenge, so I milked it for all that it was worth. We started off with a walk around the neighborhood and as always, ended up by the pool. I sat and watched the boys run around. I miss the days when I could run with out being in so much pain. But it was nice just to see them laugh and play. My oldest has the most contagious laugh. And once he starts, the little one starts giggling. I am amazed at how much I love these little guys. How on even the worst of days then can always make me smile.

After a walk I could feel the pain sinking in but we were on a roll, so I thought we would just do something easy. I got out the sprinkler. Well its a water toy that connects to the hose and it sprays water in the air. Just what we needed to cool off from the walk. It was nice to spend time just me and my boys, even if we weren't doing something super exciting. For a while there the pain was gone and I was carefree. I love to see my kids smile and laugh and not hovering over me. My 4 year old is like a second husband. When we started our walk he asked me if my pain was gone. I told him that it was still there, but not to bad. He stopped and looked at me and then said he wanted to go back home. He said "We don't need to go Momma, if you hurt you need to rest up" But I insisted we would just go on a short walk and that I would be fine. I hate to see the worry in his face. Kids are supposed to be thinking about toys and friends, not worried about their parents.

We finished off the afternoon with pink lemonade and cookies. Both boys were ready for bed earlier than usual. Its days like this that make me feel somewhat normal. I live for days like yesterday and I look forward to many more!

March 15, 2010

Waiting

Its the hardest part of having this disease. Waiting. There is always a wait for test and lab work results. Then there is the hours I have spent waiting in Drs waiting rooms. I don't even mind waiting for a new liver. Just because I have this rare liver disease that is only treatable with a transplant, doesn't mean I am entitled to a new liver right this moment. My family and friends are always saying how horrible it is that I cant just get one now. But the truth is, I am not sick enough. You don't just go into a hospital and order a liver. There is no prescription for it.

There is a system used to decide who needs the new liver first. One liver does not fit all. Matches are made based on so many things. Who is in need most, who is able to undergo surgery, blood type and many other things. Many people have never herd of a MELD score.Its the Model for End-Stage Liver Disease. Scores range from 6 to 40. You can read more about MELD/PELD here

The waiting that I dread, the hardest part for me, is waiting to be sick enough, just to get on the list. And then waiting some more. I always keep hope that I wont ever get sick. That I will just go on living my life with constant check ups, but nothing more. But every week it seems I feel weaker and weaker. The pain gets worse and worse. And yet I know I am so far from that "point" of getting on the list. I try to look at is as a good thing. I mean if I am healthy enough to not be on the list what more can I ask for right? But then pops up that little devil on my shoulder reminding me that its most likely unavoidable. For now my Drs are calling me Stable. Everything seems to look unchanged as far as I know. So here I am...waiting.

March 14, 2010

New meds

So when I went in for my scope the Dr said I also had a infection. Its in my large intestine. And for the life of me, I cant remember the name of it. I was surprised to hear it though, because all my pain has been in m upper abdomen and nothing lower. So remember those meds I was complaining about, the ones that cost so much. Im guessing the reason why is because there are 8 more pills in one pack and I have to take it for the next 2 weeks. Its called The Prevpac. I take 4 in the am and 4 in the pm. I also take my regular reflux meds morning and night. And in the morning, I take my prenatals and my shot of lactulose. I feel like a druggie. And because I alternate my coumadin 9 one day and 10 the next, on the days I take 9 that's 4 pills alone. So many pills its confusing.

March 12, 2010

Blowing steam....and money

Yesterday I had my scope done. Everything looks fine. My labwork and ultrasounds are all good. Except for the fact that my liver and spleen are ridiculously large and I'm in constant pain. Somehow I have an infection in my intestines, so I was sent home with a script for that. I know I should be glad that there is nothing new going on, but I was really hoping for an answer to this pain.

Let me tell you. When your still half sedated and the lady at the pharmacy says your meds for 2 weeks is going to cost you $89. You become completely alert. Well in my case stand there speechless. Don't get me wrong, there are people out there who can afford to drop that kind of cash with no problem. But after paying $35 for a copay on Tuesday, $50 on a bill on Wednesday and then another $50 for a copay for my scope on Thursday, another $85. Not to mention the $10 meds I still had waiting there for me. What makes it worse is I have 3 appts next week and 1 the following all with $35 co pays.

I hate days like today. I had to get up early, call all my Drs and make sure that my new meds are compatible with my other ones. Then call the Pediatrician and make sure they are safe for nursing. Next I have to call my lawyer and give them the update on everything and pray that helps my disability case. Because that's the only thing that will help us get our feet back on the ground. I'm beyond exhausted and its only noon. My liver is killing me and my meds are making me sick to my stomach. And my 4 year old is begging to go out and play. Days like today I feel like a failure. But what else can I do besides put on my happy face and do what needs to be done. I pormise my next post will be a happy one! It is the weekend afterall, somethings bound to go right :)

March 10, 2010

Endoscopy #2

Well its that time again. I went back to read this. I remember thinking it was the easiest thing. I was all worked up about it and it turned out to be nothing. Not the case this time.

Im not sure what is so different this time around. Well I am, but I didn't think it was such a big deal until now. This time, I'm going alone. Well the inlaws are taking me, but Ill go back by myself and Ill wake up by myself too. I am trying to find my big girl undies, but I don't know where they are. I keep telling myself that I know what its like. But really I don't. The whole day was a blur. I can recall bits and pieces. Like coming home and trying to do dishes. Only when I turned the water on, nothing came out. Somehow the hose came off underneath the sink and water was running straight into the cabinets. And that's almost all I clearly remember.

Ive got our clothes laid out. A bag packed with crayons and snacks for the boys. Cell phone is charging. And Ive got all my info and stuff ready. Cant forget my insurance card and wallet. Ive already got an estimate from the hospital on the total of my bill, but that's a whole other story. Guess I should be sleeping. The boys are staying up a little late tonight. That way they should be sleepy and calm when I go in. And ready for a nap, when we get home. Movies are ready to entertain then while I sleep off the pain and Ill be back with an update when I am lucid enough to operated electronics!

**Sorry if this doesn't make sence, Im beyond tired;)**

March 8, 2010

My neck

3 Months Post op. Everyone says it looks nasty, I like it. Maybe because Id rather have a scar than a massive lump there. And if people ask, Ill just tell them I was in bar fight or something. I'm still working on a good story for it;) I'm thinking I should say I attacked by natives on one of the outer islands back home...

March 5, 2010

Parenting and BCS

Parenting and dealing with a Chronic Illness. This has by far been the hardest adjustment for me. Parenting is a hard enough job on its own. Here is a tiny little life that you are to nurture and protect. They depend on you to feed, clothe, bathe and love them. You teach them how to walk and talk. You spend all your energy on them. But what do you do when the energy is gone.

Things are so different this time around and I feel so guilty for not having the energy to do all the things with the baby that I was able to do with his big brother. Some days I hurt to much to pick him up and carry him like he wants me to and it breaks my heart. I used to take my oldest of walks every day or to the park. And now some days, I don't even have the energy to go down the stairs. I have a chronic condition and my family is paying for it. I hate to admit it. But Im finding ways and making sacrifices so it doesn't have to be that way! I am determined not to let my problems affect their childhood.

One of the easiest (and the hardest) thing this time around is that I am breastfeeding. So why easy and why hard? Its so much easier in the sense that when the baby is hungry, all I have to do is pop him on. There is no need digging though bottles and scooping formula. Not to mention all the one on one time we get. The reason why I say this is hardest is because, there is a lot of worry over taking medications and nursing. When I have a surgery, I have to pump enough milk to last while the meds work their way of my system. And hearing your baby cry for you because he hates the bottle, is the saddest thing in the world. Every time you are given a new medication you have to make sure it is safe for nursing also.

I feel like my 4 year old gets left out a lot. He often reminds me of things we used to do and ask now why we cant. Here comes the hard part. Do I push myself to do these things again? Or explain that I can no longer do these things and find something I can do? I tried explaining to him that I cant always do what he wants to. Thankfully for the most part he is very understanding. But I remember one day, I was stuck in bed and was feeding the baby when he came in to ask if we could go to the pool. I told him I wasn't feeling good and tried to convince he it would be better to go the next day. He looked at me with his puppy dog eyes and said " All you do is lay in bed with the baby, why wont you just play with me too" That was the day I promised to push myself, no matter how hard it was. I can not have my kids doubting my love for them. And I know he knows I love him. But I want him to feel and remember it too.

I am a stay at home mom. And by stay at home, I mean STAY at home. I am not allowed to drive per Doctors orders. I cant just get up and go to the park or the zoo when I want to. So we have decided that we have to make the most of our weekends and spend most of the week doing things that are less strenuous for me. I will be the first to admit that my 4year old probably watches way to much TV. But its not just cartoons. When I feel up to it we do yoga together. He can tell all about many different animals because 50% of the time we are watching Animal Planet. And he might be one of the few kids who can sit and be excited to watch the food network. We do a ton of crafts as well. My husband has always said that I should be Kindergarten teacher. But the one thing I always wanted to be when I grew up was a mom. And now I just trying to find a balance between that dream and all these curve balls life keeps throwing my way!