Health Updates

I have been procrastinating doing an update on our health situations. I am tired of always having health stuff to blog about but I need to get these updates out there.

First I will give an update on how I am doing. I saw my surgeon and he said that after putting my gallbladder under the microscope it showed as being chronically inflammed. So I guess it was a good thing to have it removed. I am starting to feel better but I am still having some fatigue. I tend to get worn out by the evening. But it is getting better so I am trying not to complain. My incisions are healing nicely and hardly bother me much anymore. I still have some occasional stomach pain but the doctor said that is to be expected because the inflammation affected other areas around the gallbladder.

Now on to Rick. You know, the more important one.

Rick saw his surgeon on Friday. The news was not what we were hoping for. It seems that the fusion has NOT started to take at all. There is zero bone growth. Which basically means he is still in the same position he was in eight weeks ago right after surgery. Although he is starting to get his energy back and he doesn't really have incision pain anymore, he is NOT healed. He has to continue to wear his brace for the next six weeks, which at that time he will have another x-ray to determine if there is any fusion happening yet. That will be 14 weeks since surgery. I don't really know for sure what it will mean if there is still no bone growth at that point. I don't really even want to think about that right now. I can't change the situation so I am going to just try not to worry about it.

Dr S thinks that all of Rick's other diseases are what is causing him to not heal. That makes sense because he takes immune suppressing drugs. But he needs the medications to prevent him from getting sicker. It is a tough situation to be in. He is going back to work next week. He hasn't been getting a paycheck for over 3 weeks now which is starting to cause him stress. Fortunately he will only be going back to work part-time for now. I can understand his need to get back to work. But I am nervous about it because I don't want him to get hurt or cause some damage since he isn't healed. We thought that by this time he would have at least had some bone growth, making him more stable and making it safer to go back to work.

This is not the position we thought we would be in at this point. I was expecting that by now things would be getting back to normal. And I use the term normal very loosely. But we deal with the cards we have been dealt. Nothing we can do to change it.

Until next time,
Jaime

Bad Day

I had such a bad day at work today. And it isn't the job, it is someone at work that hasn't been very nice to me ever since I started working there. I really love my job, and everyone else that I work with. But this person was so rude to me today that even my boss had a talk with me after everyone had left and told me that I am doing a good job. And he isn't one to hand out the compliments. I have been working more hours and I am not used to being gone for so long. So it is hard for me sometimes to be at work, but then to be treated like I was today makes it even harder.

And then to top off the day I got a call from the GI doctor's nurse saying that the doctor doesn't think Rick's itching is due to the PSC, but caused by some kind of allergic reaction. He hasn't changed anything; not soap, medications, food, nothing. I KNOW it is the PSC and not an allergic reaction to something. And Rick feels the same way. He is going for even more bloodwork tomorrow to prove the doctor wrong. This doctor always seems to pass off the PSC and tries to blame something else for any symptoms Rick may have. Whenever Rick has what we know to be a cholangitis attack the doctor always says it was probably just the flu. The problem is there is only one hepatologist in our area and he is impossible to get an appointment with. So we are forced to stay with his current doctor. This is the exact reason we went to The Mayo Clinic this past summer. And right now I am really wishing we could deal with that doctor, but it isn't that easy to just jump on a plane and go pay him a visit. Hopefully the benefit for Rick in March will raise enough money to get him on a plane this summer to go back for the yearly visit the Mayo doctor wants Rick to make.

Rick takes a medication for the PSC that doesn't control it, or really help it in any way. But it does keep his liver enzyme numbers looking normal. Ever since he started taking this medication those numbers have stayed normal. I think that may be part of the problem with his doctor not giving much attention to the PSC. Rick is considering not taking that medication anymore because it has already been proven to not really do anything but keep the numbers normal anyway. His Mayo doctor was one of the leading doctor's in the study of this medication and has drastically lowered most patients intake of the drug anyway. So Rick is contemplating whether to refill the prescription or not since it runs out this week.

I know I said before This Too Shall Pass, but sometimes it is so hard to stay in that frame of mind.

Until next time,
Jaime

DRUGS

Cost before insurance: $5,496.38

Cost after insurance: $60.00

Prescription insurance: Priceless

So I had to pick up a couple of Rick's refills today and it struck me how much there was when it was all put into a big size grocery paper bag, with handles. And the amazing thing is this isn't all of it. He still has another one that needs to be refilled next week. The nice thing is that this is a three month supply of everything except for his Humira, which is his weekly injection. So if you add another prescription into the mix it would bring the total to well over $12,000 for a three month supply of everything, including three months worth of Humira. I would consider the insurance priceless, wouldn't you?

So just for fun I added up how many pills this is for three months. And the total is 2,340. Rick swallows 2,340 pills every three months. Yikes. And also that makes 12 shots as well. Double Yikes!!

Anyone wanna trade places? Any takers? I didn't think so.

Until next time,

Jaime

6 a.m. Phone Call

I knew staying up late reading last night would be a bad idea. I just knew the phone would ring at the butt-crack of dawn. But since I am so super awesome I was totally able to be coherent at 6 am. So I had a nice long talk with Dr Lindor this morning. NO WILSON DISEASE!!!!! Can you tell I am happy about that?!?!?! That was what I was most scared of. So the high iron and low ceruloplasmin (too much copper) in the blood is caused from an inflammatory process going on inside the liver. That will happen with PSC. And the medication that Rick takes for the PSC actually tends to mask the actual liver enzyme panel numbers so it can be hard to tell how the liver is doing by bloodwork alone. The bilirubin is going to cause problems because of the Gilbert's syndrome, so that is number that will fluctuate. We just have to make sure that if we notice Rick's eyes get a lot more yellow or his skin start to turn yellow then we know it is the PSC and to call the doctor.

Rick will continue to have liver pain off and on. And I have had it described to me as if someone is taking a pair of pliers and grabbing and twisting the liver. That doesn't sound nice to me. So as far as what the stage the PSC is actually in can only be confirmed by a liver biopsy which Dr Lindor thinks is unnecessary at this point. So the plan is to monitor the blood work at four month intervals and return to Mayo once a year for a full evaluation. Dr Lindor thinks it is important to check everything out to make sure that there is no cancer forming, since that can happen with PSC. So Rick would go back to Mayo for an ultrasound and bloodwork, and those would tell us if further testing is needed. And it would be best to be at Mayo for further testing if that is what is needed. That will be a good way to keep track of how the PSC is progressing as well. And of course if there are problems throughout the year that would change the course of treatment.

So what does all this mean? It means that at this point Rick's PSC is progressing, but slowly. I am not sure how many of you know that Rick will eventually need a liver transplant, but it looks like that will be at least a couple years down the road. As the PSC progresses further it will damage the bile ducts and then it will just be a matter of time before he will likely need a new liver. Now in my little head I wonder why not just take out the diseased one now and let him feel better but that is not how organ transplant works.

On thursday we meet Rick's new internal medicine doctor. We will have lots of info to throw at him but also some other lingering questions. Like what the heck is going on with the low blood counts. And, um hello, where is the spleen? Dr Lindor's recommendation was to get another colonoscopy since it has been four years, so we will also ask the new doctor about that as well. Rick's local GI didn't think it was necessary for another year but with the crohn's/PSC combo it is better to be safe than sorry. So if we can get two doctors to recommend it be done now then hopefully we can convince the doctor to do it. After all, it has been four years since the first one.

So I think we have some good answers. I am going to try to go back to sleep for a bit. Hopefully that phone call is what I needed to get out of my funk. I just HATE that Rick has to deal with all of this. But now we have a better understanding of what is going on. And knowledge is power.

So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own. Matthew 6:34

Until next time,
Jaime

Pills, pills, more pills, and a needle

When I put together Rick's pills for the week I am amazed at the number of pills he has to take per day. Most people are blown away when they see his gigantic pill box full of his pills for the week.
When Rick first started taking his pills he would take only one or two at a time. So it would take a while to take a handful of pills. Nowadays he pops the entire handful in his mouth at once. I used to laugh at him when he would take his time to take one at a time. Now I call him my rockstar.

Currently he is taking 26 pills a day. Sometimes it is more depending on if he needs an antibiotic or steroids. He has to take calcium and vitamin supplements because the PSC and Crohns make it harder to absorb all the daily nutrition.

And then there is the weekly shot. Now this is my responsibility once a week. I have never been very good with needles and other "medical" things. But with Rick it doesn't bother me at all. I was taught in less than five minutes how to administer his weekly injection. Don't people go to school to learn how to do this? I mean really, shouldn't I have had a little more training before being expected to shove a needle into my husband's arm? I have been doing this for almost two years now and I still get nervous about hurting him. Rick has told me that getting this shot is very painful. Not from the needle but from the medicine. It apparently burns really bad, so I have to go very slowly so that it isn't as painful. Rick only wants me administering his shot because I know how slow to go. When he had his very first injection the person doing it did it very fast and he about came out of his skin. So ever since then he won't let anyone else do it. I guess he really does need me.

So until next time,

Jaime