Insurance dictates I change transplant aftercare

[Beth Pilot]

My health insurance company is leaving the state I live in for next year….meaning they will not offer coverage in my state. My transplant center/medical staff are located 4 hours away from where I live. They will only accept 1 health insurance company for next year. The 1 company they will accept next year is not an option for me for all other needs near home (like general practice, er, etc.) So I’m now hit with having to find a new follow up transplant team during a time that I’m having some harsh GVHD issues that need to be finished being dealt with and not dropped into a black hole. I need help and/or info about how to transfer this as well as my confidence in my medical team to some other facility. I’m in upstate SC, I apparently will have new insurance access to Emery in GA, Duke in NC, and others outside SC. I just don’t know how to get there, or if I can. I’m getting scared about 2016 and my continuity of treatment.

[LeAnn Duke]

Hi Beth, I was wondering how you were doing.Actually I was getting a little worried that the GVHD was more serious and maybe you were in the hospital or something!! But not to worry!! I knew there must be something going on that you didn’t eiter feel good or didn’t have the opportunity to post. Glad you found the problem with not eating with the medicine and that is doing better!!

I am really so sorry about your insurance problems!! I wish I knew something to help! I guess we have ObamaCare to thank for all of these changes, huh! It is a mess and I know many who have been dropped or who can no longer afford the cost of monthly premiums. We have a high deductible and I am a bit concerned about that going to hit us again in 2016, but at least they aren’t raising our monthly premium this year, which I am very shocked at seeing that they paid out a pretty penny for me this year!

I go see my Dr on Thursday and get my levels checked. I can feel the level dropping this week. Tomorrow will be the third week since the last transfusion so am hoping I can wait till MOnday or Tuesday before I go in for the next one. But I won’t wait if it is low or if I feel bad. I have felt pretty good this time around though. My husband jokes that i must have gotten some football players blood or a guys blood that’s pumped on steroids. HA!

The baby is great and very laid back. She is also perfect! Six pounds twelve ounces and was 20 inches long. 15 hours labor for the second baby was unexpectedly long but mom did great. She did it with no pain meds and it was a water birth! I am in awe of her!! Very proud!

I hope things work out with your finding a new medical team in a new facility! I know this has to be worrisome and frightening! Will be praying that everything works out smoothly!!

[Beth Pilot]

Congratulations on your beautiful baby girl addition to your family. I have to say your daughter gets all of the kind words and admiration I can muster for a woman giving birth! I just know that she’s going to do wonders for you in the coming months/years.

It sounds like you are starting to recognize when you need more blood. That’s also a helpful step in your care. I think that everything you can be conscious of and bring to your doctors attention is always in your best interest, as well as in the best interest of your doc and/or other medical team. I still make a list of “whines” to take to each visit….as well as a list of questions, sometimes the same question on multiple occasions because sometimes I just forget or don’t understand the answer. And I always have someone else with me to write down answers so I don’t have to try to remember so much. It helps.

So, each day since the doc reduced my prednisone to 20 mg has been a little harder on me. Sadly, I kept telling myself that I could wait till my next visit instead of calling. My bad. I finally realized yesterday that I wasn’t going to make it to later on this week, but since it was Sunday and I wasn’t actually going to have to run to the er, I waited till today and asked my mom to call. They increased my prednisone to 30 mg and advised me on how much pain medicine I could safely take so that I can make it a couple of more days. Please, do what I said and not what I do….call when you realize there’s a problem, don’t try to wait it out. If I had called last week I would probably be feeling ok now, not like a truck ran over me. Lol

Thank you for your concern and understanding on the GVHD. I’m still kind of new to these issues so I’m not being as smart as I should be about them.

I got really frustrated with the insurance thing and Obama Care and all, but then I was reminded that before the changes that have been made so far there were a great many more cancer patients who just had to forgoe treatment because there was no other option available. So, I guess it’s not perfect, and not the best it could be, but the insurance changes that have been made so far are helping and I can be very thankful for that.

Now is the time for me to remember that through all of this, God has it and I just need to trust in Him.

Let me know how you’re doing. I hope you do get to wait until Monday for your next transfusion. It seems like your current holding pattern is working ok for now.

[Anonymous]

Hi Beth, Have you tried contacting the Blood & Marrow Transplant Information Network? They have their own network of attorneys that can help those who need help with insurance problems. Call toll free 1-888-597-7674. I hope this helps!

[LeAnn Duke]

Hi Beth,
I will let you know how tomorrow goes. I am almost thinking that if my levels are low enough tomorrow that I might just let them put me in and go ahead with the transfusion. First reason is that I won’t get to feeling terrible the lower the numbers goes, and second reason is that it is a ways away and it will save us a trip first of the week. I have held up pretty good this time and feel like the hemoglobin level is around 8 right now. When it gets into the mid to low 7’s my heart begins to pound hard with little exertion and I haven’t had that yet. I can feel it sometimes but not alot so I can tell it hasn’t dropped too low.

I have always been the type to call if there is something different or new. I try not to be a pest to the Dr, but I also won’t let anything go that doesn’t seem right. I feel like my stress level is lower now than at first and I can read my body better. I can tell by how much ice I eat in a day too as to how low the hemoglobin level is dropping. Funny how it seems to make me feel better just to suck on ice! But it does!!

I also wanted to comment on what you said the other day about feeling fortunate about this kind of cancer. I have thoughtthe same thing – that if I had to have a type of cancer I am glad it is this. This at this point is manageable and not painful. I may not have the energy that I want or stamina to do certain things for any length of time, but I am not in pain and having other problems as of yet. Maybe I won’t, but if I do, I am sure more aware of others who are in worse condition than I am and it has made me want to pray for others now more than I ever did before, because I have some very small idea of the fear they feel and the uncertainty they feel dealing with something life threatening.

I hope that you begin to feel better with the new dosage of Prednisone. I know anyone who has taken it before says it usually works wonders if you can get your dosage right.

i’m also hoping that the information that the site administrator sent will help you if you need to go that route!! I plan on writing that number down and putting it with my files just in case at a later date I need some help. I wonder if anyone out there knows how fast MDS progresses. I know my Dr. said he has several patients who have been doing the transfusions for years and are holding well. All I do know for certain is he says this is an unstable disease so I guess it can change anytime.

Will keep praying that you make some improvements and start to feel better.

[Beth Pilot]

Thank you Site Administrator for looking out for my insurance concerns. I’m trying to get some much needed sleep so I haven’t checked this out yet, but I appreciate the lead and I hope to follow up tomorrow. I’ve never participated in a message board before so this positive feedback really helps me.

[LeAnn Duke]

Beth, I have been worried about you. I’ve been wondering how things have been going for you. I hope you are doing ok.

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