I looked for this topic, but didn’t find anything, so I thought I’d create it for us. Maybe it’s my line of work that made me start down this line of thinking. I’m a fiscal manager at a local health department.
Let me start by saying, my husband and I are not financially independent. This disease worsens over time and I wonder what will happen when I can’t work to help pay our bills. Thankfully, I bought life insurance a few years ago, it’s enough to cover the house if anything should happen to me. I have pretty good health insurance, and I’m not worried so much about hospital bills. I am worried about just not being able to cover the month to month bills: car payments, mortgage, student loan, phone bill, etc.
There are two insurances I’m considering. One is a group disability, and the other is critical illness insurance. I’m not sure if I can get these now that I have a diagnosis and am waiting for a return call to inquire.
Another question is, what about the cost of medications after a transplant?
I’d love to hear what are other people doing to plan financially?
Hello. Thank you for starting this new topic. I’m sure it’s one that will spark some interest. I’ll try and address your concerns and hopefully put your mind at a little more ease.
Regarding work. Now every patient is different, but I was fortunate enough to not miss any time off from work other than appointments and procedures due to my PSC disease. I was diagnosed in 2011 and transplanted in 2015. Now there were many days I came home and just collapsed in my recliner till dinner but I was able to keep working. Now, I know everyone’s type of work is different. Mine involves a lot of desk work and on the road during the day purchasing for the college I work for, but I was blessed to be able to continue working. Don’t let the diagnosis of PSC stop you dead in your tracks. Just keep working, keep living life and planning for a bright future. I will say that I believe having a good hepatologist who is very well versed in PSC is key. I believed I avoided some of the bad infections that many who have had stents put in during ERCP procedures by my doctors refusing to use the stents at Duke Medical unless it was absolutely necessary. I think sometimes these endoscopists use these more freely than they should. So, I’d encourage you to keep that in mind and speak up. Make sure you are not allowing your local GI to do these advanced endoscopic procedures like ERCP’s. Makes sure it’s a doctor, tied with the transplant hospital you are going to use and does these day in and day out. Make sure you state clearly that you don’t want any newby student doctors or otherwise doing this procedure on you.
If you have good health insurance it will pay for the medications post transplant. The major anti-rejection medications they put you on, through the drug companies offer zero co-pay cards. This has helped us immensely. You just have to make sure the doctor writes the prescription requiring the name-brand drugs with no substitutions. To give you an idea of the drug cost though, depending on what they have you on and the dosage amounts, the anti-rejection drugs alone may run $1,500 a month. That’s just an average. So it’s important that you maintain your health insurance through this whole process before and after transplant. The transplant surgery alone runs about 1/2 a million dollars and the post-transplant care the first year after your transplant could run $150,000 or so. That’s why insurance is critical to maintain.
As far as any additional life insurance, they will not approve you for an increase due to the liver disease. That’s one thing that led me initially to investigate my health when I failed a blood work screening when I was trying to increase my life-insurance back in 2010. As far as the group disability and critical illness insurance, I think I would seek guidance from a financial planner or someone in that area. I’m by no means well off, but we never went that route. Be careful not to throw money at something you may never need. PSC can move very slow for many many years. You just have to take one day at a time and live life, get labs for now at least every 6 months, and they will want to do an MRCP scan at least once a year. When you start having increased itching, dull pain in your right side around your right side to your lower back, that’s an indication that an intervention with ERCP may be needed. Ask your hepatologist for a Rx for Cipro for cholongitits attacks and keep that filled and available to start taking if you wake up one morning with chills and fever. If the fever gets over 102 you need to head to the ER, preferably the ER at the transplant hospital. You will find you have to advocate for yourself and you have to educate folks about this type of liver disease.
I hope this helps. Feel free to write back with any additional questions.
Thanks @fcmmark! My PSC is in the small ducts, so no ERCP for me, right?
My blood work looks okay right now. Elevated AST, Alk Phos and and ALTs. My IgG is a little low. Waiting to hear what doc has to say about that and the rest of the blood tests they ran last Thursday. My closest transplant hospital is 4 hours away. I spent all day in the car on Thursday for my first appointment with them. They are sending on some instructions to a local GI/hepatologist here (still an hour from me). I have been having some of the dull pains around my liver area for about a week now, off and on. And will do my second annual MRCP soon. At least now they will have yearly pictures to track the progression.
I’m not sure what to expect from a cholangitis attack. I have been having chills, but no fever. Some diarrhea lately. And of course, the ever present tiredness.
Maybe you’re right, maybe the money I would be spending on the insurances would be better saved? That’s why I wanted to start this discussion to see what others thought.
Again, many thanks to the people who keep this site!
Just to follow up, the chills will most likely be more of an uncontrollable shaking type chills and high fever. You will know it when it’s more than just a chill you get with a common cold. Also, for the diarrhea, that’s very common with PSC. I checked with my pharmacist when I had it so bad and it is safe to take up to 4 Immodium caplets a day to keep that under control. I always kept a bottle of 100 on hand as I ate it like candy it seemed during those years. You have to do what you have to do to keep things under control. Of course, don’t over do it or you will have another problem