General
How did your transplant affect you financially?
Updated June 3, 2021
in General
Hope you join Karin, Brandon and myself on Facebook, Twitter or YouTube on Tuesday at 4pm ET?
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Looking forward to this! Such an important topic.
In 2006 the quality of benifits was much better with meduim to large companys making $20.00 hr full benifits with Health Net .I was paying $30.00 bi weekly ...My liver transplant with all meds hospital stays for 6 weeks cost me nothing... However that is un heard of basically to all the free medical care the goverment is give out to the people entering this country...We Americans that work for these benifits are suffering now with the price and care we get now.....They recieve better benifits than the Americans living in this country ....my experiance is proff of that ....
Transplant Patient
I was lucky when I got my transplants that I was working full time for a great company - J&J, and my health insurance could not have been better! I really never had any issues with financials due to my transplants ... it has caused me to perhaps choose differently going fwd and I fear loss of productivity and being sick in the future / that is my biggest concern that I would get sick and could not provide for myself and my family
Transplant Patient
Ironically being transplanted during a pandemic saved us financially. Both my husband and I weren’t working, and because we are in Canada we got what they called CERB or a designated amount of money every month to pay for what we normally would have made working. Between the two of us it was more than we would have made working. We were still in debt from me taking so much time off when we lost our son, so that money helped us get out of debt and then save some. Our friends also did a go fund me to pay for our travel expenses, and we had so many generous people donate to us directly by paying our rent while we stayed by the centre, making us meals so we never spent money on food... it’s a bit different now because I’m not returning back to a traditional 9-5 job and am working on starting up my own company. The support has faded and transplant costs don’t vanish. But every day I’m thankful I live in a country with free healthcare
I too had my transplant right at the beginning of COVID. My husband and I are both on disability, he is because of a damaged back and bad knees, me due to the liver disease. Let me tell times have been tough. We had lots of support before surgery and from my mom and sister in law for the motel we lived in after transplant. I’m 4 hours away from the hospital. But those funds are long gone and like AliEm said meds are expensive and never ending. My insurance was great the first year, lost my original insurance when my husband lost his, with low monthly rates but that changed the second year with higher rates and deductibles but we cut back and I am a survivor. Due to my age finding work is hard especially part time and I no longer feel safe bring an instructional assistant with children any more. But with Gods help and family we will make it somehow. We have a wonderful son who does all he can for a 24 year old. He’s the best!!
Since I was 16, when I first became ill my parents always stressed the importance of good health insurance. So throughout my years it was the first question I would have for an employer before accepting a position. I became an insurance expert over the years. The drugs that were always used for rejection were usually the problem and being denied by insurance coverage. Going through the appeal process is frustrating. But learning everything you can is so helpful.
During a few times of financial rough patches I reached out to my transplant team and they were able to help direct me in the right directions in help getting my medications covered.
Now that I am on Medicare, only. It has been a whole new learning experience.
How well does Medicare pay?? I’m going on it soon!! I’m so nervous about my coverage and I still have to have MRIs, CTs and labs done on a regular basis as well as meds like the rest of you. I’m praying it pays well.
Its not bad. There are different tiers that you can be on. My transplant center does not accept any of the Advantage Plans. So I worked with the financial coordinator to make sure I keep the straight Medicare with an exemption.
I had to get used to that although Part D covers prescriptions, Part D does not cover most transplant meds. But Medicare Part B covers the transplant meds. This is particularly important for the pharmacy. They might not know that and you get the phone call from CVS about your meds not being covered. So there was that surprise.
Most states have programs for people that cannot pay for the 20% out-of-pocket costs due to all of our medical visits.
The only hiccups have been push back on them wanting to cover rejection infusions. It usually takes some time for the transplant team to get those approved. But that can happen with any insurance.
WOW so much to discuss I hope you all join us live tomorrow on Facebook, Twitter or Youtube at 4pm ET
It depends on what your willing to spend out of pocket .. As I gave relayed before .Our entire gealth system has been watered down so much .These companies are forced to pick up the slack for all the
The free care ..You nay want to look into moving temporaly to a state that has a much shorter wait time ...As of now Caifornia is 10 yrs for a kidney due to the dense population...that maybe your best bet....Then look into starting a new life else where Health Insurance wise slong with medical costs would be riugh at first however the piece of mindxwould be priceless
If your interested into contacting more for insite my email is diczhazy1234@hotmail.com...I have had a kidney transplant withe VA in Portland and a liver through UCSD through Medicare /Medical ..contact ne if you like
Love that this topic is being addressed! It was such a huge issue for us that we started a nonprofit to help other transplant recipients with the housing costs associated with transplant that insurance doesn't. For me, I had to relocate to within a short drive of my transplant hospital for multiple months due to complications. That cost us $4,400 per month and only a very small part of that was covered. It is an honor to help others through this adventure of transplant alleviate the worry of how they will survive this financially. If you'd like more information about what we do - we're at www.heartfelthelpfoundation.com
Hope you all join us in a few minutes!
https://www.facebook.com/Lyfebulb/videos/286571699837657 here is the Facebook link
And the YouTube link https://www.youtube.com/watch?v=BsOPvnfsaDY
If you missed the chat please check it out!!
https://fb.watch/5Ttlv3V8oo/
My finances keep me up at night. I husband has severe rheumatoid arthritis and was forced into disability in his late 50s. I developed kidney disease in 2018. We both would’ve been at the financial points our careers. 2008 watched my 401(k) down the drain and now the cost of meds or two in the thing I husband‘s 401(k). Living on Social Security two small pension is quite a shock And very difficult to come to terms with.
It’s made hard on my family too. My husband had back surgery that left him in a wheelchair in November 2017. I was diagnosed with liver disease in November 2018. Totally took me by surprise. He was on disability and carried insurance on both of us. I later qualified for disability snd we both hit insurance. It’s not cheap and both of have huge medical bills but God saw me through my transplant with help from friends and family we made it through the first 2 years. Now the help is gone but the bills still come in all the time. But I’ve got a new lease on life and wonderful family and friends to love. We make it day by day with lots of love!!