A PTR hoping it becomes a TR

[vdarrell]

A PTR which I hope becomes a TR
Here is our story: Sorry if it is long I am needing to vent and ask for pixie dust to be sent my way

DH and I both love DW and have been several times the last being in Dec. of 2008. This was a special trip for us as it marked my 6th year of being cancer(bladder) free.This was a surprise from my DH
As we knew it would take us a few years to pay our medical bills down we managed to do that in January of 2011 and I was planning and booking our trip to visit the most magical place on earth where I could forget all our troubles and allow us to release the inner child we both have.

Everything was going as planned and my dear cousin and her dh decided to join us as they had never been
We were booked for Dec. 11th through Dec 17th staying at POP.
We booked our flights on Delta, bought our park hopper 7 day passes,and 7 days at POP .....I was one very happy person.
Going to DW and sharing it with others is a pleasure even if we had to wait almost a year to see

I was on until June 22nd when my DH rushed me to the ER , my liver had shut down and all my blood levels were out of range, I was in a coma state for almost a week until they could get me stable enough to come out of it.
It was a very long hospital stay with lots of tests and meds to get under control and to come up with a diagnosis of cirrhosis of the liver due to a major infection which invaded my liver . pancreas and kidneys.
I had gained 84 lbs of body fluid and had to have 2 surgeries to drain the fliud and a liver biopsy to determine the degree of damage which was not good and have been told I will need a transplant in the future.
It has been a long 3 months but I am doing better ( thank God ) and my levels are coming up to almost normal ranges.

I have lost the 84 lbs of fluid and 40 extra lbs I still have about 30 more to go I am on a very strict diet of NO sodium/no sugar/low fat/ and limited protein which is very hard to do as everything has sodium in it and if it doesn't they put sugar in its place to give it a taste. Let me tell you eating is not a pleasure anymore...learned I have to "EAT TO LIVE not LIVE TO EAT" and I love to eat especially at DW.

Cont. next page

 

[vdarrell]

continued PTR


When I went to the doctor Friday I again asked him about our trip and if he thought we would still be able to go,
His reply was we have so many more tests to run and have to make sure my blood work stays in range and to make sure my liver doesn't cause more problems than what I already have. Says we won't know until almost the last minute.
I do get really tired and don't have the stamina I use to and have to be very careful around anyone who is sick , I also have an autoimmune disease and anemia so he is worried but also knows I want to go really bad.

Enough of the boring stuff what I am asking is for all my Dis friends to send some prayers and pixie dust to make this trip a reality.
We do not know what the future holds and I just want to spend as much happy time with my DH and family. As DW and Vegas are my DH's 2 favorite places to spend time on vacation we have been married 35 years and in our 50's(me in the early part and him on the end part of that number) but when we are in Disney we act like 5 yr olds.

I also know with the medical bills coming in that it is going to be a big struggle and that alone makes me think twice about the trip but I overheard my DH telling someone he didn't care what it took he wanted me to be happy and to be able to spend this time with me. so he is trying to grab as much overtime as he can which is hard to come by. And I am not allowed to return to work.

So I have been lurking and reading everyone's TR's and making lists of things I want to do . Since I am out of hospital and home bound it helps me through the days and hope helps lift my spirit.

Thanks for allowing me to vent

 

[mickeysmyboy]

First, I'm soooo happy to see you back on Dis!!!

Second, I'm so, so sorry your health is still not good! Lots and lots of prayers and positive thoughts!

I truly hope your trip can become a reality!!

 

[vdarrell]

First, I'm soooo happy to see you back on Dis!!!

Second, I'm so, so sorry your health is still not good! Lots and lots of prayers and positive thoughts!

I truly hope your trip can become a reality!!

Thank you....you were so supportive during my last trip in 2008 glad to see you still enjoying WDW your little ones have gotten so big,

I did have a few years of "better health" this just came out of the blue no warning.

Thanks for the prayers

 

[bkandreu]

I am so sorry to hear about the health problems. I think a trip to Disney would be exactly what you and your husband need to help get your mind off of all that! I am praying for you and I hope you get to go to Disney!

If you did, what do you think you will do about the food problem? How will you deal with that at Disney?

I'm hoping all goes well and I'm staying tuned to find out if you get to go to Disney!

 

[vdarrell]

I am so sorry to hear about the health problems. I think a trip to Disney would be exactly what you and your husband need to help get your mind off of all that! I am praying for you and I hope you get to go to Disney!

If you did, what do you think you will do about the food problem? How will you deal with that at Disney?

I'm hoping all goes well and I'm staying tuned to find out if you get to go to Disney!

Thank you for the prayers.
As for the food problem I am planning on taking alot of my meals since we get 1 free checked in bag each and 1 carry on.And my cousin and her dh get the same so I can use what space the have left .
I planned on taking my own bread(Ezeckial no sodium), natural peanut butter which is low in sodium/sugar (we get it at our Health Food store),I drink a low sodium Ensure for alot of my meals so we can pack those,I can have oats so also will be taking the individual pkgs and heating up water to make , plus I can eat low fat yogurts and fresh fruits/veggies , I will take along my own sweetner and dressings.
Disney Food it is not but I will gladly give the food up just to spend the time in the parks.
After the trip the suitcase will be empty and I can bring home ALL the Magic that will fit in the suitcase home with us

Our AAA agent is working with us just in case we don't get to go she will allow us to get a refund on the park hopper passes.(we purchased these separate thru AAA with the discount).
We also booked the resort separately so we can cancel 5 days before and get the refund for the deposit we paid down,
Our flights were booked using our companion fly free voucher we get thru our American Express credit card so it would cost us $100.00 to re-book.

But of course I am hoping we won't have to use any of those options.
I have my weekly dr. appt. tomorrow and we get the results from blood work as they do it every 2 weeks to make sure meds are adjusted accordingly.

 

[vdarrell]

Mickey and the gang must have been at my dr's office today pixie dust everywhere as the dr was giving us my blood results for the week and they look good(compared to what they were).

I lost a couple more lbs dr. is pleased with my progress.

Prayers-patience and progress will get me to Disney in Dec.

 

[vdarrell]

UPDATE

Dr's visit yesterday went good, my blood levels are still improving.

I know my dr. is getting tired of hearing me ask the same question every week but this time after giving us the results he said looks as if you might make it to DisneyWorld

I have one more major procedure to have done on Oct. 31st before he will decide to give me the ok, and as long as my blood work and liver enzymes stay with in range.

Today is the first day in 3 1/2 months that I will be allowed to drive so a little shopping is in order( I get tired easy so it will probably be a short shopping spree but getting out of the house is what I need.

Here's hoping everyone else has a great day.

 

[mickeysmyboy]

Woo hoo! Glad to hear that everything is getting better!!!

 

[vdarrell]

Woo hoo! Glad to hear that everything is getting better!!!

Thanks.....God has been so good the dr's can't believe I have progressed as much as I have in just 3 1/2 months and we are praying that it will be a long time before I have to have a liver transplant.

I know through prayer and patience ...progress will follow and with a little pixie dust thrown my way I will see Disney World in December.

 

[MisplacedTexan]

Jumpin in on your PTR. I have faith that you will be in Disney in December!! So excited for you and your positive visit. I will pray to St. Peregine on your behalf.

You will be in DW the same time as my crew and I, maybe we can meet. Congrats to you and hubby for a wonderful marriage. DH and I will celebrate 7 yrs in July, and we figure if we can make it to 10, we are stuck ( we were both married just shy of 7 yrs previously)

((((HUGS))))) to you!

 

[vdarrell]

Jumpin in on your PTR. I have faith that you will be in Disney in December!! So excited for you and your positive visit. I will pray to St. Peregine on your behalf.

You will be in DW the same time as my crew and I, maybe we can meet. Congrats to you and hubby for a wonderful marriage. DH and I will celebrate 7 yrs in July, and we figure if we can make it to 10, we are stuck ( we were both married just shy of 7 yrs previously)

((((HUGS))))) to you!

Thank you for your prayers,
Yes God truly has blessed me in so many ways and having a wonderful DH is one of my greatest blessings along with our 2 sons. Don't know where I would get my strength from if not from them and God.

We have been married 35yrs definetly STUCK...congrats on your 7 years it only gets better.

Would love to meet up with you.

Going to dr tomorrow so hoping and praying things will still be good news.

 

[vdarrell]

dr's visit went good today.
Bloodwork results are improving and my energy is slowing creeping back.
They did however change my diet again now I am on a very low sodium-low sugar-low fat-vegetarian diet. My liver is not able to process and digest animal protein so that is why I have to get my protein in with yogurt-veggie products-ensure and eggs.
Thank goodness I like veggie burgers and yogurt.....can't say I enjoy the Ensure drinks and I love fruits and veggies.

I do know that Disney has veggie burgers- yogurt -and salads will bring my own dressing and pack lots of Ensures to drink.

But what am I to do about the Disney snacks that are so yummy

The doctor said if my other procedures come out okay at the end of the month I should be able to go but he is checking into area dr's and hospitals that will be able to treat me if I relapse he is sending us with a disc with all my medical history on it.

Prayers and pixie dust are still needed

 

[vdarrell]

My dr's visit yesterday went GREAT he has given us the ok (as long as nothing changes) to go through with our DisneyWorld vacation in Dec.
Now I can really get into making some plans.
He is even going to contact dr's in Orlando ....just in case and is sending us with all the needed info. Now my DH will feel safer with me going he was so afraid if we went I would get worse and they would not know what to do for me.
I told him to just use PIXIE DUST but he didn't find that amusing

I am so happy and this is truly a much needed trip for both my DH and myself.