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Topic Title: My second Bone Marrow Transplant
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Created On: 03/02/2021 06:49 AM
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 03/02/2021 06:49 AM
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dingpatch

Posts: 16454
Joined Forum: 07/24/2003

A few of you know but, most do not. I have been diagnosed with treatment induced MDS (Myelodysplastic Syndromes) and I am in the process of getting ready to go to Nashville for the procedure. I have few places to turn to so perhaps a few 2nd Lighters can lend a helping hand. My fin hobby has generally done a good job at allowing me to get the extra "cash" I've needed/wanted but, that now seems to be done for the rest of the year.

I have started a GoFundMe: https://www.gofundme.com/f/howards-second-bone-marrow-transplant?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1


Edited: 03/02/2021 at 06:58 AM by dingpatch
 03/02/2021 08:30 AM
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ww

Posts: 15182
Joined Forum: 08/17/2007

 03/02/2021 11:07 AM
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TATTOO74

Posts: 2320
Joined Forum: 10/26/2005

I'm in for donating to go fund me or if you have a LB fin I have a 9'0 that needs one.
 03/02/2021 11:14 AM
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johnnyboy

Posts: 18972
Joined Forum: 07/22/2003

I think this country is in bad shape regarding health care and this is proof. I will add my little drop in your bucket and I will keep you in my prayers.

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"One of the reasons why propaganda tries to get you to hate government is because it's the one existing institution in which people can participate to some extent and constrain tyrannical unaccountable power." Noam Chomsky.

 03/02/2021 03:33 PM
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Kimo63

Posts: 476
Joined Forum: 04/22/2012

Good luck in your recovery. Looks like you will make your goal, just need a little more help ,this can be a generous community . Let Us know how you are doing , hope to see you in the water as soon as you are able

Edited: 03/02/2021 at 03:39 PM by Kimo63
 03/02/2021 04:22 PM
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dingpatch

Posts: 16454
Joined Forum: 07/24/2003

But, my financial situation does not generally have anything to with the level of care that I am receiving at the VA.

I have Social Security and a nominal pension. It pays my bills and general living expenses.

My upcoming trip to Nashville is "over and above". The VA is taking care of everything; transportation to/from Nashville, and they are putting me up in a Homewood Suites for 4 months. Plus, a nominal reimbursement for food costs. The VA bills Medicare and the rest is absorbed by the VA. The only thing I pay for is minimal prescription copays. And, as I've said before, the care I will receive at the VA/Vanderbilt is World Class. They run a National Center of Excelence. As I was told before my first transplant; "Do you want to be treated by the doctors who wrote the book, or do you want to be treated somewhere else by doctors who are reading the instructions? For reference; for my age and the type of "donor" transplant I will receive, the going rate is around $800K in the private world!

I need to be able to reimburse my neighbor for taking care of my house, and mowing my yard, for 4 months. The same for the friend who is taking in my Springer Spaniel. And I need to able take care of my friends who will be with me everyday I'm there. It adds up to a lot more than I have.

Rant is over.

I can not thank you guys enough, ever!
 03/02/2021 04:58 PM
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johnnyboy

Posts: 18972
Joined Forum: 07/22/2003

The VA. The only socialist medical provider that everyone loves. Me included. Good luck my man. I will pray that you have get the strength to results to get healthy or at least the strength to navigate your world if it doesn't go as planned.

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"One of the reasons why propaganda tries to get you to hate government is because it's the one existing institution in which people can participate to some extent and constrain tyrannical unaccountable power." Noam Chomsky.

 03/03/2021 06:19 AM
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Cole

Posts: 51248
Joined Forum: 07/22/2003

You are one tough mofo.

Free and clear this time next year!

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So long and thanks for all the fish.
 03/03/2021 06:55 AM
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dingpatch

Posts: 16454
Joined Forum: 07/24/2003

I was not aware of the "tip" thing!

Click in the box with the "percentage" and enter a zero.
 03/03/2021 01:44 PM
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Kimo63

Posts: 476
Joined Forum: 04/22/2012

The GFM page was easy to navigate , I just had my wife do it for me . When it comes to money , I rely on the Pros
 03/04/2021 05:21 AM
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TATTOO74

Posts: 2320
Joined Forum: 10/26/2005

Just donated the balance to get you to $2k! Good Luck on your journey & God Bless Ding!
 03/04/2021 07:19 AM
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wtf

Posts: 5565
Joined Forum: 11/23/2005

Threw in a little for the cause - best of luck dingpatch.

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The Biden admin has more accomplishment in 2 months than trump could muster in 48 months. trump basically quit - he' a loser that bankrupts/fails everything he touches.
 03/22/2021 05:03 PM
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dingpatch

Posts: 16454
Joined Forum: 07/24/2003

On the "good side" my blood numbers have improved and, as such, I guess the belly-shot chemo is starting to work! My numbers are still "low" but I am feeling a heck of a lot better. For me and my condition, they're getting "almost" back to normal but, for 95% of ya'll they would still be pretty low. But, as my Hematologist/Oncologist tells me "We'll take them"!

The Orlando VA has finished up with me and I am now waiting to "get the call" from the Nashville VA.

Edited: 03/22/2021 at 05:05 PM by dingpatch
 03/23/2021 03:29 AM
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Cole

Posts: 51248
Joined Forum: 07/22/2003

WOOT WOOT!

-------------------------
So long and thanks for all the fish.
 03/23/2021 12:04 PM
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dingpatch

Posts: 16454
Joined Forum: 07/24/2003

And, I just got "The Email" from my Nurse Practitioner in Nashville. They want me there next Wednesday for my "Donor Activation Visit" But, that is too soon for me. Probably going to have to be during the week of April 5. We will see.

Edited: 03/23/2021 at 07:42 PM by dingpatch
 03/23/2021 07:44 PM
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dingpatch

Posts: 16454
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So, for now, it looks like I will be flying up to Nashville sometime during the week of April 5th for my "Donor Activation Visit". If all is well from there, I could be going back around the week of May 17th to start the Full Monty!

So, and, during my "Visit", "to see if you are medically ready for transplant", I will have endless blood labs taken and I will undergo every test that I have already gone through here at the VA in Lake Nona. Especially another Bone Marrow Biopsy. It will be my 13th!!! Oh, Frickin Goody! I will have a couple interviews and consultations and then have an "Official" talk with the Nurse Practitioner who will be my "case manager", and the Doctor (from Vanderbilt) who will be "The Boss". From there I will come home and, if all is well, the VA/Vanderbilt will "Activate" my donor and prep them for the collection of the needed Stem Cells. I am told that Be The Match already has a number of Excellent Matches ("10 out of 10") for me!!!!!! Vanderbilt will prepare the collected stem cells for "donation" to me and it is generally 6 to 7 weeks from there until I would be back in Nashville to start the "transplant" process. I will be there for about a week then be admitted to the "Bone Marrow Transplant Unit" at the VA. I will undergo 5 to 6 days of VERY STRONG, VERY INTENSE ("Close to Death"), chemo (mostly all day long!) to kill off my own bone marrow and immune system. But, this time they tell me that they leave "a little bit of me" in me!!! I'll have one "off day" and then have the transplant the day after that. The transplant day is Zero Day and will be known thereafter as my Second First Birthday. After the transplant I will remain in-patient for 10 to 14-plus days during "recovery" and then, if all is well, I will be "discharged" back to the hotel. From there I will be very closely watched and monitored for AT LEAST 100 days, going back to the clinic every 2 to 3 days for "tests" and such. After all that, IF I am OK, I will be able to return to Florida!!! After all-is-said-and-done the Doctors in Nashville will be my "Bone Marrow" doctors for the rest of my life and if there would be even the slightest "problem" I will be immediately flown to Nashville. As I have said before, I am not worried about a thing: the bone marrow tansplant unit at the VA/Vanderbilt is a National Center of Excellence and they do this every day!

Edited: 03/23/2021 at 07:47 PM by dingpatch
 03/28/2021 09:12 AM
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dingpatch

Posts: 16454
Joined Forum: 07/24/2003

Flying up on the 7th for two days of testing and evaluations. Return on the 10th.
 04/11/2021 01:21 PM
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dingpatch

Posts: 16454
Joined Forum: 07/24/2003

Got back last night (April 10). The visit to the Nashville VA went as expected (I did the same thing last year).

Had a good talk with my Transplant doctor. He explained lots more than I wanted to know! LOL LOL The major "downside" will be that I simply SHOULD NOT go into the sun!! I told him that I knew that from my reading and that I would be wearing a hat, long sleeves, and plenty of sunblock. "Ya,ya, sure, sure, BUT, you have a long history of skin cancers." Regardless of my stated precautions he point blank told me that they know that with my skin cancer history, that this transplant will increase my chances of getting skin cancer by at least 300% if I go into the sun!!! Fook!!!!
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