Frugal Village Forums banner

My surgery really has taken a toll on us

4K views 35 replies 18 participants last post by  Hamada 
#1 ·
Most of you know i had my transplant done. Been in and out of the hospital for 5 years. So i did find out what was wrong i have a rare form of pancretatic disorder. Which i got i life saving surgery. But its really took a toll on us . We had a $2000 emergency fund which is now gone. Back in Feb. We had to get a new car because of our business and driving weekly to Chicago 350 miles each way. We had to have a car that we could rely on.Had my surgery in May. Spent 3 weeks in the hospital and now going up there to Chicago every week for all my follow up visits. We always eat a large breakfast before going and i pack a lunch to take with us and take snacks for dinner. We are bottomed out. We can't cut any where else. We have Internet but we must have it because of the business, no cable, no cells any more our term was up and we decided to not have them any more. Since i have other health problems my doctor suggest i apply for disability. I had to apply for ssi because i was a stay at home mom for so many years i didn't have enough credits for regular disability. So waiting to hear from them. So we have no credit cards, no cells, no cable, no fun spending. I guess we wouldn't be hurting so bad if we didn't have to spend the almost $500 a month in gas. Thats just going to Chicago, does not include the basic gas we spend for our local stuff and house calls.We are scrapping by.Our food budget is $300 a month for us 3. Plus we spend another $200 a month for meds and thats with a discount card. Just very stressed right now and needed to vent.
 
See less See more
#2 ·
First I'm glad you were able to have it and it was successful. But yes i understand. It took Dh 5 min. to fall off an overpass and 7 years to feel financially somewhat stable. We did years of trekking every meal w/ us and parks,walks,and tv as entertainment. We owed $69,000 our share,I had to get tires,redo the MIL apt. into a bedroom,all the therapy/rehab. the bills were endless.
If they offer counceling for the family take it. I regret not doing it but w/ 2 kids I was up to my eyeballs in eaglets as they say.
I hope you can go to Chicago less soon and that will help. Maybe contact a charity and a food bank at a church where income level isn't a factor.
I would also contact the manufacturers of the meds-can't hurt.
Blessings to you. Just wanted you to know someone had an idea what your going thru.
 
#3 ·
Thank you FW. I think i have 3 more weekly visits then it will go to every 2 weeks then after the first of the year it will be once a month. Thats if everything continues to go well. I have no spleen and winter is coming so i have to make sure i don't get sick. I have lost a total of 72 pounds since January. Thats a great thing. Just wish it was in a healthier way.. The lord will provide. At this point we are paying our basics, with our business the income comes in when customers decide to pay us even though we have deadlines to meet. They don't. So we make sure house payment and car is payed on time. Then our utilities. I have a 6 to 8 month stock pile of food and hba. 2 weeks ago i took $200 and used it for meat because the stores were having fantastic sales and i stocked up on ground beef and chicken. We will make it. Just stressed out.
 
#4 ·
You will make it - I totally agree - and it may not be easy. Am so glad that you are sharing here - it really does help to unload and to pray. There are so many things that we cannot control in our lives - it seems that you are on top of as much as you can. I agree with FW that it would be a good idea to check around churches for some possible help.

DH and I are going through our own version right now - with neither os us working. Somehow I am keeping the faith and working on learning all I can from this situation. Isn't it challening when so much is not in our own hands.

Please continue taking care of your own health right now - I see this as your number one job. Things will change as you have already indicated - for you especially, I see them changing for the better. Take care and stay in touch.
 
#5 ·
Hi,
I tried to send you a pm and it won't let me. Can you get testing done locally and results sent to Chicago? I have been in a similar situation for 5-1/2 years. I get blood tests done closer to home and they send results to my dr office. Also are your meds covered by ins? Do you have a Costco near you?

Even if your meds are covered under ins I have found that with Costco membership and their add'l discount in the pharmacy some are cheaper to pay cash for. And if you no insurance and the meds are expensive you can contact the mfr of the meds and they will possibly give them to you. Ask at your dr's office.

Glad to hear you got the surgery you needed to have a better life

Pam
 
#9 ·
I will check and see if my inbox is full. I live in a small town and Chicago wants all testing to be done there. Just because I'm the first in the state to ever have this type of surgery and only around 75th person in the Unites States to have it done.
We don't have a costco's yet. They are building one. I do have a call in to the the manf. For one of the meds.
 
#6 ·
awwwwww.......so sorry to hear..... stress is not good! I will be praying for u...Keep us posted on the disabilit.....Hubby has not worked since 2008 and was reluctant to sign up for disability......I didnt force him however i know alot of people could not understand why....however he had an appointment around a month ago we had switched doctors and she looked at him and said i dont like to tell people to sign up for disability because its not my job to however you are only going to get worse not better so......we applied a couple of weeks ago....hoping its smooth however from what i am told you are very rarely approved the first time....so keep us posted...
 
#8 ·
I know you're venting - as you should b/c its good that you get things out vs keeping them bottled up - BUT with your long travels of 700 miles round trip/wk - I'd not be comfortable w/o a cell. I know, its not a necessity and we did survive w/o them before but are you able to get a cheapie tracfone (no contract) with double/triple the minutes for the life of the phone 'just for emergencies'? $30 is a small price to pay for peace of mind, no?
 
#10 ·
I agree Libby. We are looking into it tomorrow. I know i can get a safe link from the state. Because of medical. Its 250 minutes a month. Texting also but he each text is 1 minute used.
 
#13 ·
I didn't read thru all the replies, so maybe you already answered this one. But I was coming on to say the same about local testing being sent off to Chicago. My cancer doctor is in Orlando, 40 miles from me, so we do it that way too.

I too wanted to lyk that I also know EXACTLY what you're going thru financially. I went thru uterine cancer in 2005. It's stressful, but my DH just hugged me yesterday and said he was glad I was still here for everybody. Of course that made me cry, and I know he's right of course, but financial problems hover over us daily and he hasn't had a raise in 5 years now. So of course, my hubby is right, and I am SO glad for you nana that your surgery was successful, but I also know what you mean by not having an inch of breathing room financially. At least he has a job, and it's less than 10 miles away. All the more to be grateful for! And like you and your family, we'll just hang in there and do whatever we can to make things better. At least we know how to stretch a dollar. Not everyone does or is even willing too!

So please know that my thoughts are with you, and I hope you'll see some "daylight" soon!

Hugs!

Theresa :)
 
#15 ·
Definately go with safe link. The sooner you sign up the faster you will recieve the phone. I heard this winter is supposed to be more snow then normal. Not sure if where you live is included.

I would also state to the doctors that the medications are really expensive for you. Ask if any can be a generic. As soon as costco is ready go and see about their prescription plan. Costco also has an online pharmacy maybe you can use that until the new costco is built. State to the doctors that the frequent visits are taking a tool financially on you. Ask again if any testing can be done closer to home. I can understand why they would want to actually see you physically in person since your case is so rare.

Since your doctor suggested applying for disability you probably have a good chance of getting it soon. If it is denied then find out all the information you need and make sure you have all the required documentation the next time you visit. I have heard of people being denied over and over again until they finally recieve disability. When I applied it took about 1-2 months to get approved. So it is possible to be approved quickly.

Also look into any program that offers help with utilities and/or food stamps. You may qualify being a family of three. It may not be a large amount however any little bit will help. Many times people who receive food stamps are automatically enrolled in programs that help with utilities.

Hang in there and vent as much as you want to.
 
#16 ·
I talked with my worker at Social security. He says of course he can't promise me anything. But my case looks solid. This was on Wed. He said i should hear something by the end of next week.I hope so. I just hate being behind or not having enough money for very basic needs.Thank you everyone for the replies.
 
  • Like
Reactions: Libby
#17 ·
Hugs to you and your family. I will send a prayer every day your way:)
 
  • Like
Reactions: Nana2two
#18 ·
Transplants are financially devastating. The cost of the multiple medications and doctor appointments will be with you forever. Focus on taking care of yourself and your family FIRST. The bills, particularly the medical bills are going to have to wait. DO NOT put the medical bills on a credit card, even a credit account offered to you by the medical facility. Over the last 5 years or so, the #1 reason people got into trouble with credit card debt is because they were paying medical bills. I agree with setting up mail order prescriptions. The benefit is you can usually get a three month supply at a time. And DO talk to your doctor. I have a completely different but also expensive medical condition and my doctor's office has a person on staff who does nothing but looking into financial aid for medications and treatments. The pharmaceutical companies all have a program you can tap into.
 
#20 ·
Nana, I would suggest you contact the transplant coordinator prior to your next scheduled visit and have her arrange an appointment with a social worker. Typically, these big university types of hospitals have social workers assigned to specific areas. The SW will have all sorts of information, including drug assist programs offered through various drug companies. Keep in mind, too, that because of the expenses, medications required by your husband or any other dependents may be eligible. Sometimes SW's can arrange for assistance with travel expenses. Sometimes there are ride-share programs for patients in outlying areas so people can split expenses...that sort of thing. A good SW knows of tons of resources.

I hope the disability comes through soon. I can only imagine how difficult this has been. You have a life-saving operation but then have huge struggles to stay on your feet.
 
  • Like
Reactions: Nana2two
#21 ·
Seems as if there are a lot of people thinking of you - me included. Lots of great advice here! Adding my prayers, hugs and aloha to the stream heading your way!
 
  • Like
Reactions: Nana2two and Libby
#22 ·
I got my approval letter!! I can't get ssdi because not enough points for working. But got ssi. With a medical card. Which for me that is Gold. That will cover all my meds and any test i need. Im so excited. They have to back pay me 5 months. That will be enough to pay house taxes for the year. Pay our car insurance for the year and get caught up and ahead with all the bills... Thank you all for thinking of me and for those that are praying for me... Love you all
 
#23 ·
OH found out last Friday that since i was the FIRST person in the state to have this surgery . 99% of my medical bills have been covered by the hospital.
 
  • Like
Reactions: Libby and StaceyS
#25 ·
Holy Cow!!!!!! That is great news!!!! Hopefully the other 1% will also be covered. So good the medicines are covered. Plus I think your insurance is a lot better than what you receive on medicare. Meaning glasses and dental are covered. Great to hear everything got processed so quickly!!!!

What a weight off you shoulders this must be. I wouldn't go around telling everyone you know near you about getting approved. Not until you receive the 5 month check unless you were able to get it direct deposited into a bank account.
 
#26 ·
Yeah they have asked for our checking account routing number. They told me how much my back pay would be ,they now split it up over 2 months instead of one huge check. So Sept. would be half the back pay and than the month of Sept check and same for Oct. November will be the amount i will continue to get after that. Now with SSDI you have a 5 month waiting period. With ssi you don't.She said all payments are direct deposit. Which can take 2 to 8 days from the time i got the letter. So i just keep checking the bank account online. It needs to hurry because our property taxes are due in 2 weeks.
 
  • Like
Reactions: Libby and SueBee49
#27 ·
That is just wonderful, wonderful news. I'm so happy for you that this is beginning to work out. I'll keep my fingers crossed you get your payment in time to pay your taxes.
 
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top