In my post last week, I referred to some health challenges Sarah has been having and wrote that everything seemed to be checking out okay. However, since writing that (and after an additional visit to the doctor), it appears that our gal is still dealing with a few things that may very well relate to late effects of cancer treatment.
For the moment, I won’t go into the whole list of of the symptoms she’s been having but I do want to mention one particuar thing and that is her heart.
Last Decemeber when she went in to have some breast lumps checked, her doctor didn’t like the way her heart sounded and did an EKG which turned out “normalish,” or on the outside edges of normal.
Everything seemed to be fine heart-wise until last week when she went to the doctor for some other issues and the doctor noticed some skipped beats. Sarah has also had several recent incidents where her heart started racing up to 120 beats per minute while she was sitting still. She said the elevated heart rate made her feel anxious and on the verge of fainting.
She has also experienced some significant shortness of breath and has had periods of weakness where she just feels “off.” She missed a couple of days of work last week and has been in to see our family doctor twice.
And so tomorrow afternoon I will be taking her to a cardiologist who will fit her with a 24-hour heart monitor. She also may have an abdominal CT scan and endoscopy in her future for some other issues but for now, we are taking it one thing at a time. Thankfully, her blood counts are normal and she is not losing weight so those are both good things.
We have been told through the years that there could very well be late effects to deal with from her cancer treatment and two big areas that chemo and radiation often affect are the heart and lungs. That’s one of the reasons they have had plenty of monitoring along the way.
At any rate, we are hoping for some answers this week and are praying for peace of mind as we navigate yet another bump in the road with our amazing gal. I’ll keep you in touch as we go along.
Question: Do any of you wonderful readers have good advice for shopping around for the best price on endoscopies and CT scans?
From what I can tell, prices vary hugely and since these tests aren’t covered by our insurance, we are very interested in not paying more than necessary. Thanks in advance for any insights you can provide.
Hoping things worked out well for Sarah. Heart problems are scary. I have a good friend who has atrial fibrillation. He has had two ablations and has a pacemaker. My sister had open heart surgery at four years old due to being born with a hole in her heart. Prayers!
Kari,
Wow–four years old is so young to have open heart surgery. I can’t imagine how traumatic that was for her and for your whole family. You’re so right–heart problems ARE scary!
I’m a few days late to this post! Prayers up for Sarah!
Thank you, sweet lady! 🙂
Becky,
Sarah needs to get an endoscopy as soon as possible so the doctors know what is causing her problems. I’ve had seven or eight in the past six years. Mine are caused by bleeding ulcers — long story but it’s not relevant here.
My endoscopies cost about $3,000 to $4,000 each, but my health insurance pays for most of the expenses. I know that hospitals will let you pay a small amount every month as long as you let them know in advance.
luck to you and Sarah,
Debbie Patton
(banjokttat@aol.com)
Debbie,
We did find a highly recommended (by our family doctor) GI doctor in Virginia Beach who will do an endoscopy for the cost of the co-pay so hooray for that! She has to go in for an initial appointment before the endoscopy can be scheduled.
Thanks for sharing your experience!
So sorry to hear about Sarah’s issues. Do you have any free-standing imaging centers nearby? They will almost always be cheaper than the outpatient department of the hospital. How is Sarah’s blood pressure? I ask because several years ago I had two episodes of blacking out. I had an almost deja vu feeling right before it happened. My PCP sent me to a cardiologist who did a work-up including a tilt table test. While I “passed” this test, my blood pressure started out very low. As a result I was put on a drug that helps to keep the blood pressure from dropping. The PCP called it vasovagal syncope.
Phyllis,
I think Sarah’s BP is usually around 90 over 60 which I don’t think is too terribly low; probably not as low as yours went that caused you to pass out. Glad you got the problem diagnosed and treated. Passing out at random times is NOT a fun thing to do!
We do have a free standing imagining center about half an hour away which does seem to represent a savings. Just haven’t finalized yet what tests she will need.
Sure hope there are some answers on the health front for Sarah. My mother has been hospitalized 3 times in the last three months with these same symptoms and, so far, they cannot find the cause. She had a heart valve replacement a year ago and a pace maker right after that but no answer to this new issue. We did find out that her blood pressure is all over the board when she is having these symptoms as well and extra fluids seem to help balance that.
On the insurance/payment front, definitely ask for the cash price. When my husband was hospitalized before he passed away and I talked to them about him having no insurance, they immediately offered a “cash price reduction” of 40% off the top – no questions asked. Eventually, I negotiated even lower, partly because they continued to do testing even after the decision to move him to hospice care was made and I had told them I wanted no more tests done just for information purposes when there was no treatment option available regardless of the test outcome. And, there is a difference between “under insured/not covered” and “cash”. Like someone else mentioned – the worse that can happen is you are not any better off.
Praying for answers.
Janet,
It sounds as though you (unfortunately) have had plenty of experience with the health care system as you’ve cared so well for your late husband and your mother. There is so much to negotiate and navigate and balancing. We want the ones we love to get the best care possible and yet we still have to keep on eye on that bottom line. Not easy.
Over the past few months, I’ve heard several people mention a “cash price” with medical expenses; that is so interesting to me that it would make such a big difference! Definitely worth checking into.
I hope your mother’s heart issues are figured out soon. It’s a scary thing when the heart is involved. And I don’t know how long ago it was when your husband passed away, but please accept my hugs and condolences.
(And no worries on the typos; I’m glad I’m not the only one!)
Hey there! I’m a 38 year old cancer survivor who had open heart surgery in February for a thoracic ascensing aortic anuerysms. I had to have many scans leading up to surgery. Thankfully my insurance covered it. The terms of your plan exclude any diagnostic imaging?
My Cardiothoracic surgeon gave me great advise – he said that when it comes to the heart the CT scan should only be done at the hospital because
the techs (or those supervising) are more experienced, the machines more sophisticated
and (most importantly) the images are clearer.
I had a snafu with my insurance not wanting to cover a CT scan (I had 3 in one week – long story)
And battled with my insurance + the hospital to make that (very urgent medically necessary test) happen. I was told it was a $10k scan. The contracted discount rate was $6k and the “cash” discount rate was $600.
Could the scan be covered if it is properly documented that this is medically necessary due to symptoms and history?
Hi Melinda,
It sounds as though you have plenty of experience navigating hospital/sccans/surgery/financial issues–more experience than you ever wanted, I’m sure!
As for Sarah’s CT scan, that is for abdomen (a whole different set of symptoms) and not the heart. Our insurance does cover scans but only after our (high) deductible has been paid so right now, scans would be out of pocket. I did do some shopping around yesterday and found a wide variance in price for a CT; the hospital was $1000 more than our Regional Medical Center which has a full imaging department. Now my next step is to ask about a cash price.
Were your heart problems related to your cancer or a different thing entirely? Here’s hoping you are well on your way to healthier days. Thank you for sharing your experience.
Hi Becky!
The cause of my anuerysm is still unknown. It is typically genetic, caused from a congenital heart defect (bicuspid valve), high blood pressure or a connective tissue disorder – I have none of those risk factors. TAA’s are known as the silent killer because most people have a fatal rupture before it is ever detected. Mine was found at 5.9cm and the ruptures happen at 6.0cm. Praise God for His protection.
Regarding scans – I learned something the hard way. The scans done in the diagnostic imaging Dept of hospitals are almost always superior to those done elsewhere. The. Equipment is more sophisticated and the techs / level of supervision is also better. If there is something detected in a scan, chances are the scan will have to be repeated if the image isn’t clear enough – which happens far more outside of the hospital. Then you get to pay twice!
Also since Sarah is young and a full time student her financial responsibility is considerably less than yours and the hospital WILL discount it considerably and a payment plan can be set up through their financial assistance department.
Melinda,
I’m so thankful that your aneurysm was discvered at 5.9 before it could cause a major problem or even death. It’s amazing what such a big difference a small number can make. I know you are grateful for every single day you have to live!
I’ve actually had a couple tests/scans done at the Regional Medical Center and was very pleased with how everything was handled. Although Im sure that, as you pointed out, there are many facilities where there is a definite drop in quality from what is done at the hospital.
I don’t think there is ANYTHING in the medical field that is simple–from treatment options to payment options. That’s why I am extra grateful for great people like you and my other Smithellaneous readers who are willing to share their own experiences and wisdom.
So sorry to hear Sarah is having these issues. I used to work for an HMO and I second the comment about asking for the cash price. Often there is a discount. I would further ask about what type of payment plans might be available. Sarah/you guys might also qualify for some financial assistance through the hospital- since you have such a high deductible. It can’t hurt to ask that as well. I always say the worst that can happen is they say no- and then you’re no worse off than you are right now.
Prayers for answers and an easy solution.
Heather,
It’s wonderful to get such good advice from readers; thank you!
Having worked in that area before, you certainly have some insights that the rest of us wouldn’t have. And you’re so right–the worst thing they can say is no! Thanks for taking the time to comment.
The typos! I’m sorry!!
Sarah is in my thoughts! Really really sorry to hear about the heart racing and other issues! I pray for peace and that answers are very swift in coming. I hope the tests go well.
Has she tried deep, slow, meditative breathing when the racing heart beats come? I can imagine how anxiety provoking it would feel to have the heart racing suddenly like that (as well as I imagine that an elevated heart rate would physiologically trigger feelings of anxiety and feelings of faintness) and I wonder if doing deep breathing might help re-oxygenate her blood cells and help reduce some of the faint feelings/ anxiety that occur when the racing episodes come. (But I don’t really know what I’m talking about with this, it was just something that struck me as maybe helpful).
I hope that the 24 hour tests tomorrow go well and the upcoming CT scan and endoscopy too.
Sarah is really blessed to have such supportive family around her.
Jenna,
You’re actually on the ame page as Sarah’s doctor. She gave Sarah a breathing pattern to try when her heart needs to slow down. Sarah has already used it some and it’s been helpful. Will be glad to get the monitor in place this afternoon and see what we can find out.
Praying for good test results and for Sarah to fell better siomM
Thanks so much, Michele! Prayers definitely appreciated.
Sending hugs and prayers your way. Heart variances are scary at any age. If your insurance provider has a webpage, there may be a link for cost estimates. I know United Healthcare has one; you choose your insurance plan, what procedure you need it provides prices charged by different facilities in your network. (I checked the website and you do have to log in to use it. I tried pulling up abdominal CT prices within 100 miles of Manteo, but my in-network facilities did not have the price. However it did say prices ranged from $594 to $2,206 – quite a range.) Good luck in finding the best value (quality and cost) for Sarah’s medical care
SueEllen,
That is a great feature for an insurance website to have; I wish more companies did that. It would sure make the whole shopping around process more streamlined.
That is a huge price range you found–hard to believe it can vary that much. Just shows all the more the importance of not just taking the very first price that comes up.
Thanks for taking the time to gather that info; very much appreciated!
Hi, my daughter just went through something similar with her heart rate. An elevated heart rate was discovered when she had her wisdom teeth removed. The oral surgeon referred her to a cardiologist. She did the 24 hour monitor. The doctor said elevated heart rate is actually quite common for girls her age (19), but he was a little surprised that she drinks NO caffeine. Her results came back that her heart rate averages between 120- 130, and went as high as 190’s. The doctor started her on a low-dose beta blocker. He doesn’t think it is serious. just wanted to share my daughter’s experience. By the way, she has no other serious health issues. Praying for a simple fix for Sarah!
Laura,
Thanks for taking the time to tell your daughter’s story. It’s nice to hear when things turn out well for other people with similar issues.
It’s encouraging to hear that some of these situations can be treated with medication. Here’s hoping Sarah’s case is a simple one!
Will keep Sarah in my prayers! So discouraging that needed tests are not covered by your insurance. Not the way it should be.
Liz,
Thanks so much for your concern and prayers.
We have a high deductible to save on monthly premiums and so we’d have to pay for the scans out of pocket since we haven’t reached Sarah’s deductible yet. It would truly be great if coverage was more affordable!
Keeping her in my prayers and hoping that all results are normal!! If you guys come to Duke for any reason, let me know and I will come talk to you and bring you treats!!
Tiffany,
You are so sweet! Talk and treats are always welcome. 🙂
I’m so sorry that Sarah is having to deal with some post-treatment health issues. Prayers that they are easily treated and that she feels better soon. I would have to agree with Jodi’s comment on ‘discount’ scans and tests and seeking advice from your Doctors. I have found though, that the same test can cost very differently, (MRI to be exact) depending on where it is done. Shop around.
LeeAnne,
Yes, that’s why I had the “shopping around” question. I don’t want to jeoporadize Sarah’s health in any way by gettng a less than quality scan but I have also heard different people say how much scans and tests can vary from doctor to doctor and facility to facility.
I paid $3,000 for a colonoscopy five years ago only to find out a week later there was a GI doctor in the area who did them for A $50 co-pay in his office. THAT was not a happy discovery!
See my comment above re quality
Prayers for peace and strength as you all go through this new territory. May the medical “expertise” find the answers soon and the solution. Hang in, Sarah. You’ve come a long way, Baby! Hugs and kisses to all. God is still able.
Ann,
She really HAS come a long way, hasn’t she? Thanks for your encouraging words.
I am praying for Sarah.
Thank you so much, Jessica!
I’m sorry that Sarah isn’t feeling well. If I’m being completely honest here, I equate “discount” scans as not as comprehensive nor done w/ the same care and accuracy as those done elsewhere, especially since Sarah is in “uncharted territory” if you will. Perhaps, share w/ your doctor your concerns and see where she recommends you go? Or, can you reach out to Dr. Driscoll for some advice? Maybe I’m completely out of line here but…….
Jodi,
Since you have an “honorary degree” in medicine with all of the many dozens (or even hundreds) of tests and procedures you have been through, I know the advice you give is based on experience. I definitely don’t want “cut rate service” but I do know that prices can vary so much. I am trying to do a little shopping around before making a decision. Thanks, as always, for your compassion and concern. 🙂
Becky,
Call everywhere that you may be interested in going with Sarah and see who gives the best cash discount! Some places don’t, while some do!*** My PCP, gives a cash discount as do many of my other docs/hospitals!! They explain it this way; if an appt. is $300 when they submit the claim to the insurance company the contracted rate is probably closer to $150 & that’s what the insurance pays the doc and you’re not billed the remaining balance. So in my docs eyes (many of my docs eyes), if you’re paying cash, why should YOU pay the entire $300…..therefore, their giving a cash discount. Many hospitals and imaging centers do the same thing. You just have to know to ask (they definitely don’t publicize it)! Hopefully, this all makes sense? Just in case, I’m not explaining it very well (which is VERY possible), I’ll text you (or you me) sometime Tuesday. If you have any questions or I can better clarify something, we’ll handle it so that you & Steve can try NOT too worry!
PS. I’m giving back that honorary degree! ?
Jodi,
Hmmm. The cash discount thing is interesting and does make sense.
It is definitely worth shopping around for medical care as much as for any other expense. It’s just good to know the right places to ask and the right kinds of questions to ask. Thank you!
I am so sorry Sarah is having to deal with these post-treatment issues. Definitely praying for good results.
Mrs. Pam,
Good results would definitely be a good thing. Praying, too!
Well now, uggh. Poor sarah. I hate that feeling when your heart races out of the blue. The sooner they can get to the bottom it, the better. Is she on summer break now? She’s done so well, even while feeling lousy. I will be thinking of her and you as you move forward. Prayers for her heart settling down and the anxiety to subside.
Lesley,
Yes, she has been home for about a month now, thankfully. I would hate for her to be going through all of this away from home!
Thank you for your thoughts and prayers. We have to take good care of our Sarahs, don’t we?
Praying that the Lord will surround Sarah with his peace during this time. I, too, have a heart condition called Tachycardia (sp). I take 2 Verapamil every day. There was a period of time when my heart would race and I would do everything I could to bring it back to it’s normal rhythm. There is a supplement that I can take if that happens, but I have found that I can do a couple of things to get it back to its normal rhythm without resorting to taking more pills. I did not have an “episode” for about 1 1/2 years, then it happened one morning while making my bed (have a tendency to hold my breath while doing things) and didn’t realize that it was racing until I bent down. Sat down on the couch, took a deep breath and slowly let it out and it was back to its normal rhythm. Along with my regular vitamins I have been taking Krill oil, 1000 mgs. Don’t know if that has helped or not, but would like to think so. Didn’t mean to ramble, but am continuing to pray for Sarah and family.
Sharyn,
Don’t apologize–it’s always good to hear from someone who has “been there, done that!” I am glad to hear that you found a non-surgical, non-invasive way to deal with your heart issue. Hoping that will be the same for Sarah.
Sending love, hugs and prayer….
Wish I was rich so I could pay for those tests. God will provide.
Love, Deb
Deb,
Well, if you happen to come into a million dollars in the next week or so, you know where we are. 🙂
Love you guys!