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Topic Title: Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread
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Created On: 06/30/2021 08:05 AM
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 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 06/30/2021 08:05 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Burry - 06/30/2021 09:34 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 07/03/2021 05:23 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 07/04/2021 02:24 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 07/04/2021 03:19 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 07/05/2021 09:38 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Burry - 07/05/2021 11:41 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 07/07/2021 05:21 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Central Floridave - 07/08/2021 07:10 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 07/22/2021 08:29 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 07/22/2021 06:42 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - 1974 - 08/10/2021 02:37 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 08/10/2021 03:26 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Greensleeves - 08/11/2021 05:05 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - 1974 - 08/11/2021 07:32 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 08/12/2021 06:31 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 08/21/2021 08:15 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 08/21/2021 09:46 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 08/22/2021 09:00 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 08/24/2021 11:02 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 08/31/2021 03:58 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - theglide - 08/31/2021 04:48 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - 1974 - 08/31/2021 06:19 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 09/07/2021 04:14 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 09/13/2021 09:17 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 10/06/2021 07:43 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - 1974 - 10/06/2021 08:20 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - theglide - 10/07/2021 01:39 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 10/14/2021 06:16 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - ww - 10/14/2021 01:25 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 10/20/2021 10:52 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Burry - 10/21/2021 01:43 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 10/21/2021 06:05 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - ww - 10/22/2021 03:38 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 10/26/2021 02:42 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 11/01/2021 03:14 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - RustyTruck - 11/02/2021 05:35 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 11/02/2021 03:59 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 01/23/2022 08:49 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 04/10/2022 07:30 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - ww - 04/10/2022 08:36 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 04/10/2022 09:16 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - ww - 04/12/2022 07:06 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 04/12/2022 07:43 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - ww - 04/14/2022 06:57 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 06/17/2022 05:16 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - ww - 06/20/2022 05:18 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 07/22/2022 05:28 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 07/27/2022 01:58 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - ww - 07/27/2022 06:35 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 08/01/2022 05:59 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - tpapablo - 08/01/2022 03:24 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 01/31/2023 02:34 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - WG - 01/31/2023 03:09 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - WorldBFree - 02/01/2023 04:55 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 02/23/2023 04:02 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - tom - 02/23/2023 06:33 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 02/24/2023 04:07 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - ww - 02/25/2023 03:39 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 02/26/2023 03:45 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - jeff kennedy - 03/04/2023 12:03 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 03/04/2023 02:18 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 03/10/2023 04:23 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 04/08/2023 03:22 PM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 04/12/2023 07:19 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - Cole - 04/12/2023 07:21 AM  
 Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread   - dingpatch - 04/12/2023 07:47 AM  
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 06/30/2021 08:05 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

I (we) will drive to Nashville on July 5th and then have my first appointment on July 6th. Tuesday the 6th will start with extensive blood labs and then a Bone Marrow Biopsy (my 13th!!), then a MUGA scan. Wednesday the 7th starts with a PET/CT scan. The 8th is "off". Then on the 9th I have a Pulmonary test. The "real deal" starts on the 12th.

As of now, this is my schedule:

--07/05/21: Arrive Nashville
--07/06/21: eval #3 + Bone marrow
--07/07/21: testing
--07/08/21: nothing
--07/09/21: see MD
--07/10/21: nothing
--07/11/21: nothing
--07/12/21: preadmits and nothing to eat or drink after 2200
--07/13/21: line placement
--07/14/21: Day -8: fludarabine (outpatient) and then admit to hospital
-07/15/21: Day -7: fludarabine
-07/16/21: Day -6: fludarabine
-07/17/21: Day -5: fludarabine & Busulfan
-07/18/21: Day -4: fludarabine & Busulfan
-07/19/21: Day -3: fludarabine
-07/20/21: Day -2: thymoglobulin
-07/21/21: Day -1: thymoglobulin
-07/22/21: Day 0: stem cell infusion
-07/23/21? ________: D+1 to D+100: stay in Nashville for post-transplant follow
up and recovery

Future Appointments: Date Time Clinic
======================================================
NA-BMT-Infusion 7/6/2021@ 8:00
NA-BM Biopsy 7/6/2021@ 9:00
NA-BMT 7/6/2021@ 10:00
NA-Nuc Med/MUGA 7/6/2021@ 2:00
NA-PET/CT SCAN 7/7/2021@ 7:00
NA-PFT/Pulmonary 7/9/2021@ 11:30
NA-PICC Line 7/13/2021@ 700

And, , , , , So, I did have a good talk this morning with a nice lady at the Nashville VA. Yes, I will go back to Nashville for a 2 to 3 day "check-up" in about 30 days after I initially get back to FLA. From there, for the "next year or two", , , , I will go back to Nashville every 4 to 6 weeks for check-ups!!!!!!!!! Maybe I can get a room with Trisha and Garth??!!?? If nothing else, I'll be racking up the American Airline miles.

More to come as it occurs.

-------------------------
Dora Hates You

Edited: 07/01/2021 at 05:21 AM by dingpatch
 06/30/2021 09:34 AM
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Burry

Posts: 6134
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how come NO ice cream breaks???

You got this!!!!

-------------------------
BurrysBreak

Inflation caused The BIG BANG...look it up!
 07/03/2021 05:23 PM
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dingpatch

Posts: 19032
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Burry, no ice cream but, plenty of sausage gravy!!!

-------------------------
Dora Hates You
 07/04/2021 02:24 PM
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Cole

Posts: 68180
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Originally posted by: Burry

how come NO ice cream breaks???[IMG][/IMG]



You got this!!!![IMG][/IMG]


You would think they would throw in a hooker or two to keep the spirits up. Yes, doctors are geniuses, but they sure lack creativity.



-------------------------
I was right.

Edited: 07/04/2021 at 02:25 PM by Cole
 07/04/2021 03:19 PM
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dingpatch

Posts: 19032
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All packed and ready for the drive, first thing tomorrow morning (Monday).

-------------------------
Dora Hates You
 07/05/2021 09:38 AM
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Cole

Posts: 68180
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safe travels and to coin an English term, keep your pecker up!

-------------------------
I was right.
 07/05/2021 11:41 AM
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Burry

Posts: 6134
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Cole You would think they would throw in a hooker or two to keep the spirits up.


i hear the Co-Pay is High!!!


Good Luck Ding!

-------------------------
BurrysBreak

Inflation caused The BIG BANG...look it up!
 07/07/2021 05:21 PM
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dingpatch

Posts: 19032
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Got to the hotel about 6:30 PM local Monday. Started neeedles and such first thing Tuesday morning and pretty much finished all the "testing" this morning with a PET Scan. But to say "needles" is a cop-out, they accessed my chemo port and all the clinics used it to inject their "stuff" into me, no viens needed!

The Homewood Suites is nice and is pretty much in the middle of everything! Less than a half mile from the VA Medical Center at Vanderbilt U.

Ate at Martin's BBQ Joint Monday night. Had a late lunch at Hattie B's Tuesday. and had lunch today at Jack's downtown on Broadway. Eating our way around Nashville, but did go to Kroger's yesterday for "normal" food to make in the room!

-------------------------
Dora Hates You
 07/08/2021 07:10 AM
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Central Floridave

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Good luck Dingpatch. Wishing you the best and a full recovery! Now I'm hungry for BBq.
 07/22/2021 08:29 AM
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dingpatch

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The donated stem cells are scheduled to be delivered to my room from Vanderbilt at 12:00 today!!!!!!!!

3, 2, 1,,,,,, Blast Off

-------------------------
Dora Hates You
 07/22/2021 06:42 PM
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Cole

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Do you feel better after the transfusion or whatever in the hell they do?

-------------------------
I was right.
 08/10/2021 02:37 PM
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1974

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How ya doin Ding?

-------------------------
Hi. I'm Mike.
 08/10/2021 03:26 PM
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dingpatch

Posts: 19032
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I got discharged from inpatient on Friday, Aug 6th. My 3rd First Birthday is July 22, 2021. I was inpatient for 24 days! I had a few "rough" days but I do know that I was doing way better than the other 6 patients in The MTU (Marrow Transplant Unit)! I feel pretty good but will need to visit the Bone Marrow Transplant Clinic (The Clinic) every Monday, Wednesday and Friday for labs, tests and medication changes and such until October 30th.

-------------------------
Dora Hates You
 08/11/2021 05:05 AM
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Greensleeves

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Great ding!! Stay tough!
 08/11/2021 07:32 AM
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1974

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Good to hear. Best of luck with everything

-------------------------
Hi. I'm Mike.

Edited: 08/11/2021 at 07:32 AM by 1974
 08/12/2021 06:31 AM
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Cole

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Every day is one step closer to normal life. Good on ya mate!

-------------------------
I was right.
 08/21/2021 08:15 AM
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dingpatch

Posts: 19032
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Today is Day 30, since the transplant! My Vandy doctors tell me that I am doing Very Good!

-------------------------
Dora Hates You
 08/21/2021 09:46 AM
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Cole

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Originally posted by: dingpatch

Today is Day 30, since the transplant! My Vandy doctors tell me that I am doing Very Good!


WOOT!



-------------------------
I was right.
 08/22/2021 09:00 AM
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dingpatch

Posts: 19032
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And, I must thank seasmyth for being my "first shift" Care-Giver here in Nashvegas!!!!! He is a Pro

-------------------------
Dora Hates You
 08/24/2021 11:02 AM
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dingpatch

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The Vandy Girls are out in full force rocking the campus. I figure that they only enroll Homecoming Queens!!!!!!!!

-------------------------
Dora Hates You
 08/31/2021 03:58 PM
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dingpatch

Posts: 19032
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Today is "Day 40" since the transplant! I feel fine and my Vanderbilt doctors tell me that I am doing Very Good! No signs of Graft Versus Host Disease (rejection). As of now, I'll be here until they "release" me on October 30th. Although, if I continue to improve, I may know by the end of September if they will release me early! But, in any case, I will be brought back to Nashvegas every 4 to 6 weeks for the "next year or two" for check-ups.

-------------------------
Dora Hates You
 08/31/2021 04:48 PM
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theglide

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Sweet!
 08/31/2021 06:19 PM
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1974

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Good to hear

-------------------------
Hi. I'm Mike.
 09/07/2021 04:14 AM
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Cole

Posts: 68180
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Man ding, that's a serious work in progress!

Great to hear!

-------------------------
I was right.
 09/13/2021 09:17 AM
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dingpatch

Posts: 19032
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Friday was Day 50 since my transplant. My Nurse Practitioner (NP) Donna had a very busy schedule so she handed me off to another NP because I was "easy" (a lot of the other Vets need all the help they can get)!!! I see my regular NP again this coming Tuesday. Got to drop one of my daily meds today, and I had my magnesium pills increased so that I shouldn't need any more infusions of "mag" (I've been "border-line")!!!!!!! Another multi-doses-a-day pill will be reduced next week!!!! While we were there this morning Barney overheard my Doctor ask the NP "how is he doing" and her reply was "Mr. Alward is doing OUTSTANDING"! I know that it is too soon to declare victory but, at least I do know that I am "ahead of the curve"!!!!!

-------------------------
Dora Hates You
 10/06/2021 07:43 AM
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dingpatch

Posts: 19032
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Today is Day 76 since the transplant.

Yesterday, my Vandy Doctor told me that my Bone Marrow is 100% Donor!!!! BIG Milestone!!! But, still need continuous testing and such. "Rejection" is always a concern but, so far, there has been none.

-------------------------
Dora Hates You
 10/06/2021 08:20 PM
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1974

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Nice job!

-------------------------
Hi. I'm Mike.
 10/07/2021 01:39 PM
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theglide

Posts: 9422
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Great news ding!!!!
 10/14/2021 06:16 AM
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dingpatch

Posts: 19032
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Today is Day 84.

Had a good talk with one of my Vanderbilt stem cell doctors yesterday morning. I asked and he told me that I can get the COVID vaccination after day 100! Additionally he made it very clear that I need to get the booster.

As of now, unvaccinated bone marrow/stem cell transplant patients have a 40% chance of death from COVID if not vaccinated!!!!!

-------------------------
Dora Hates You
 10/14/2021 01:25 PM
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ww

Posts: 16088
Joined Forum: 08/17/2007

I got the flu vaccine about 20 minutes ago. There were several people waiting for boosters. All Pfizer, it seemed. There's reason to believe that last winter's social distancing, banning of activities, and masking nearly eliminated flu. This winter there may be less immunity among the general public and the vaccine may be less good than usual--people who determine which strains will be covered had thin information to rely on. Flu was searched for, as usual, but not much was found.
 10/20/2021 10:52 AM
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dingpatch

Posts: 19032
Joined Forum: 07/24/2003

Fooking Yay, , , , , , , !

Yesterday was Day 90 and my lead Doctor told me that I will "Graduate" next Friday, the 29th! I'll be home Saturday night. !!!! He told me that he is sure that I'll be Okay and not to worry about anything as Vanderbilt/VA has the highest success rate in the USA !!!!!
It has been a long 4 months but, I will miss the fantastic medical folks here at the Vanderbilt VA (I am in love with so many nurses, they are poetry in motion !!!).!

-------------------------
Dora Hates You

Edited: 10/21/2021 at 10:47 AM by dingpatch
 10/21/2021 01:43 PM
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Burry

Posts: 6134
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YEA!!!!!!!

-------------------------
BurrysBreak

Inflation caused The BIG BANG...look it up!
 10/21/2021 06:05 PM
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Cole

Posts: 68180
Joined Forum: 07/22/2003

WOOT WOOT WOOT WOOT!

So awesome it deserves four!

WOOT!

Make that five!!

-------------------------
I was right.
 10/22/2021 03:38 PM
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ww

Posts: 16088
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Vanderbilt seems to have a huge medical reputation. On the side, Dolly Parton was treated for something at Vanderbilt's hospital and became a friend of her doc. The doc brought a promising covid vaccine that needed funding to her attention. She provided a million. Moderna, I think. Welcome back.
 10/26/2021 02:42 PM
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dingpatch

Posts: 19032
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Today is Day 96.

Had my final EKG and MUGA Scan this morning, saw my Nurse Practitioner (NP) and talked with one of my Vandy doctors.

Tomorrow I have my final Pulmonary Functions Test (PFT) and then go downstairs to have my final PET scan !!!! And, as such, That Is IT !!!!!!

I go in Friday morning to see my NP and then have a sit-down with the lead Vandy Doctor and my new "Long Term Care" NP. Then "GRADUATION" !!!!! I'll be home Saturday afternoon.

I told my nurses that I love them and will surely miss them but that if I never see them again it will be too soon !! LOL. LOL.

I still have to do 2 courses of "light" chemo in Lake Nona; the first course is scheduled for 3 days next week. NO PROBLEMS but, it is Vandy's way of doing things given that I "had" MDS and a donor transplant. It is all good. Again, the lead Vandy Doc told me that I should have nothing to worry about; I'm in very good shape and Vandy knows that they have the highest success rate in the nation !!

-------------------------
Dora Hates You

Edited: 10/26/2021 at 02:46 PM by dingpatch
 11/01/2021 03:14 PM
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Cole

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The journey continues, but this time it's in a positive direction.

-------------------------
I was right.
 11/02/2021 05:35 AM
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RustyTruck

Posts: 33300
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Well done.

-------------------------
Capitalism is based on the ridiculous notion that you can enjoy limitless growth in a closed, finite system.

In biology, such behavior of cells is called "cancer".
 11/02/2021 03:59 PM
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dingpatch

Posts: 19032
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I must offer this "Be The Match" video

Be The Match

-------------------------
Dora Hates You

Edited: 11/02/2021 at 04:00 PM by dingpatch
 01/23/2022 08:49 AM
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dingpatch

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Today is Day 185.

I drove to Nashvegas last week for my 6 Month check-up. It was colder than Hell up there. 20 degrees and snow the morning I left.

The first morning there they hooked up my Portacath and drew 20 vials of blood. Went back to the hotel to decompress and then drove to Martin's BBQ Joint and had a Big bowl of their new Brisket chili. It is so, so, Very Good !!!

The next morning it was the obligatory Bone Marrow Biopsy (BMB), my 18th !! Vandy wanted to get a big deep-dive sample so my Nurse Practitioners (NPs) Donna and Amanda got to it. My new "Long Term Care NP", Rachel was there to witness. Again, my NP Donna took charge and asked if I was "ready"; "Yes, I've told you before that I long for your tender touch, , , ,". Lots of laughter in the room. She got very good cores, and the tech from Vandy and Rachel were very impressed with her work. Donna showed me the cores. Then I had a very good talk with Rachel and my lead doctor, Dr. S.

Rachel told me that all of my blood numbers were Very Good !! They are still "low" BUT, they are all now within the "normal range" for "normal" people !!! Fooking Yay !!! Dr. S again told me that I am doing Excellent and that at this point it looks like I have nothing to worry about. The results of the BMB will predicate the "Path Forward" of my treatment. Dr. S told me that he was very confident that I was going to be OK because the VA/Vanderbilt Stem Cell Transplant group "is the best". I asked him what he meant (because it seems pretty over-the-top when a doctor says such a thing). "We know we are the best because we are. Our success rates are The Best in the nation !!! Fooking A Bubba !!! I like to hear that from my doctors.

I will still get the "low dose" chemo of Vidaza for 3 days a month, for the next 6 months (starting next week). I again asked Dr. S if this was because of anything to do with "me" ??? "No, this is just how we roll at Vandy. Our research shows us that this is the best course of action to insure that there are no relapses of MDS." He went on to explain to me about the presentation he just gave to the Stem Cell Transplant group at Vandy. I consider him to be one of the very best, Anywhere!! I go back to Nashvegas in July for my One Year.

-------------------------
Dora Hates You

Edited: 03/02/2023 at 03:22 PM by dingpatch
 04/10/2022 07:30 AM
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dingpatch

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Today is Day 262 !!

My January labs and Bone Marrow Biopsy, that were done in Nashville, confirm that my "blood DNA" is 100% Donor and that my blood type has "officially" changed from A+ to the Donor's O+.

-------------------------
Dora Hates You
 04/10/2022 08:36 AM
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ww

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Quite a piece of medical / biological engineering.
 04/10/2022 09:16 AM
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dingpatch

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Yep!!!! But, I still run into people who think that it all was just a "fancy" blood transfusion ??!!

-------------------------
Dora Hates You
 04/12/2022 07:06 AM
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ww

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And some claim there's no such thing as covid, just flu mislabeled by conspirators. Stem cell transplant is about as sophisticated as you can get. I get the impression that Vanderbilt's medical empire is greatly respected.
 04/12/2022 07:43 AM
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dingpatch

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ww, , , , , YES!

It's hard to not get "teary eyed" when I think of how fooking LUCKY I am to get such World Class Care!!!

To recap Vanderbilt's rep:

Vandy was the first medical facility in the Nation to become a certified National Center of Excellence for Bone Marrow Transplants.

The VA/Vandy Bone Marrow/Stem Cell Transplant Team is #1 in the Nation in regard to Success Rates!!!! I'm into "success" rates, I could give a hoot about "bedside manners", etc.!!

Vandy was one of the first medical facility in the Nation to be approved by the FDA for CAR-T T cell treatments for blood cancers.

Vandy alone performs "almost" more Bone Marrow/Stem Cell Transplants than any place else in the Nation. When combined with the Vandy Doctor's work at the VA, they do perform more Bone Marrow/Stem Cell Transplants than anywhere else in the Nation, and perhaps the World.

The Nashville VA Medical Center is the #1 rated center in the VA.

The Vandy/VA location generally performs more Bone Marrow/Stem Cell, Kidney, Liver and Lung transplants than anywhere else in the Nation.

As my "Attending Physician", Vandy Director of Stem Cell Transplants, told me at the end of my "Exit Briefing" in July 2018: "I am the Director of a National Center of Excellence. I can not allow any corners to be cut. My Team and I strive everyday to be the Best in the World" !!!!!!!! You could never be more stoked than to hear that from your Doctor!!!!!!!

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Dora Hates You

Edited: 11/10/2023 at 08:13 AM by dingpatch
 04/14/2022 06:57 AM
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ww

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Your treatment was long-drawn-out but I'm willing to guess that over the next few years they'll figure out ways to make it simpler and perhaps cheaper. While it's possible to complain about the high cost of medical tech (and super-sophisticated biology), we've gotten some huge benefits from things like laparoscopic surgery (my two arm rotator cuffs), better drug and surgical treatments for heart disease, super-fast care for stroke victims (I'm 5 minutes from a good hospital), and lots more. While the US is doing badly in terms of longevity (We have social problems, like the opioid epidemic and lately political opposition to vaccination. Poorer countries that emphasize low-cost basics beat us, like Costa Rica), we've made huge improvements in dealing with cancer and heart disease. Better orthopedics is enabling huge numbers of people to live active lives. Think hip transplants.
 06/17/2022 05:16 AM
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dingpatch

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I'm not Counting My Chickens, , , , , but, Woo Hoo !! Yesterday was my last day of "maintenance" Chemo !!! I will not know about "chickens" until after my next Bone Marrow Biopsy that will be done in Nashville next month during my One Year check-up. The "maintenance" was initially scheduled for 12 months post-transplant but, Nashville wants me to have it out of my system before the Biopsy so, no chemo in July, only 11 months!

So, for this "Round" of cancer treatments, for MDS, since January 2020: I've had 83 days of the Vidaza chemo, 2 shots under the skin in my belly every time. Oh and, I also had 8 continuous days of Very Intense "conditioning" chemo prior to my Stem Cell Transplant.

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Dora Hates You
 06/20/2022 05:18 AM
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ww

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Have a great trip to Nashville next month.
 07/22/2022 05:28 AM
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dingpatch

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Finally !!!! Today is Day 365 since the Transplant. It has been a very long year but, I have strived to "Maintain an Even Strain".

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Dora Hates You
 07/27/2022 01:58 PM
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Cole

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Well done mate!

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I was right.
 07/27/2022 06:35 PM
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ww

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I'm reminded that one reason to grow bromeliads is that they're easy to transplant. Roots function only for anchorage. Congratulations on a successful year.
 08/01/2022 05:59 AM
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dingpatch

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A BIG thank you to all ya'll 2nd Lighters. I had my One Year check-up last week in Nashville. All is good, except that the results of the Bone Marrow Biopsy won't be back until about this Thursday. I'm on Pins And Needles waiting, , , , , ,. But as it is so far, my Team says that I am a Success Story and that I beat The Odds! I had High Risk MDS and, as such, they had given me only a 30% chance of not relapsing before my one year mark !!!!! There are 177 facilities in the USA that perform Stem Cell Transplants and my Team at Vanderbilt/VA is rated as Number One in the Nation!! I have to be honest and admit that I still get teary eyed when I think about the World Class care I have received. Oh and, , , , , , I MUST give a shout out to my Donor and BE THE MATCH!

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Dora Hates You
 08/01/2022 03:24 PM
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tpapablo

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Good to hear. Let's hope the good news continues on Thursday.

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I :heart; Q
 01/31/2023 02:34 PM
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dingpatch

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UPDATE: AND, this should be my last one for some time to come, , , , Yay!

Yep, the July Bone Marrow Biopsy came back as clean as a Safeway chitlin !!!!!!

AND, , ,: After Rachel, she is my Nurse Practitioner, did the biopsy I was able to sit on the edge of the procedure table and talk with her while we waited for Doctor Savani. Dr. S comes in, asks me how I'm doing and then says I look good. Then he points at me and says "You are a success story and you beat the odds." And then the three of us had a good talk, at the end of which he asks me if he's told me about Rachel and him? "Yes, she's been working with you for 15 years, , ,".

So then he says "I'd say that Rachel is the best, But, , , ,. My peers tell me that she is Number One in the World at what she does here in Stem Cell Transplant Long Term Care" !!! My Doc is the Director of Long Term at the VA and Vandy; he and Rachel are at The Top. Now, when Dr S says "my peers" he is talking about his fellow Directors at places like MD Anderson, Hutch, Sloan, Mayo, John Hopkins, ect., , , ,!!!!!! Their Long Term people talk to Rachel all the time and report back up their chains that Rachel is the absolute best ANYWHERE !! I am so Stoked for her !!!!


Anyways, , , , , Had my 18 Month check-up video with Rachel, my SCT Long Term Care Nurse Practitioner, at the VA in Nashville yesterday morning. We did a recap on my last week's labs and local VA clinic visits and had our usual "what's been going on" chat. All of my blood labs are right where they should be (my "chart" looks like a normal person!!!!). AND, with that, I am "doing so well" that I Do Not have to travel to Nashville in July for my "2 year visit"!!!!! YAY!!!!! This is an exception that is not very common, but not all that unusual. But, that means that I won't get to see all of my most favorite girl friends at the SCT Clinic. Bummer. I will still get blood labs every month and will either see or video my Team.



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Dora Hates You

Edited: 02/01/2023 at 06:30 AM by dingpatch
 01/31/2023 03:09 PM
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WG

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"The truth is incontrovertible.
malice may attack it,
ignorance may deride it,
but in the end,
there it is." -Sir Winston Churchill
 02/01/2023 04:55 AM
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WorldBFree

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Awesome news!

The importance of a good team should never be underestimated. Don't sell yourself short my friend...you were the real key to the success. Hard work, sacrifice and positive vibrations will always help any miracle along.

Still catching up on the full conversation, but your trials and tribulations are powerful stuff!

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Slide On

 02/23/2023 04:02 PM
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dingpatch

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So, the other week at the Watering Hole, , , , , drinking a touch of tequila, , , , an Ancestry DNA test add came on the TV. A couple people started to talk about it. The one couple had done it, , , , a few were thinking about it, , , , , somebody asked me if I was going to do it. Nope. It won't work on me. A mouth saliva "swab" or blood will only show my Stem Cell Donor's DNA. WWWWWWWWWWWHAT!!!!!!!!!!!!!!!!! Well, ya see, , , , , I have the Donor's bone marrow and my bones make the Donor's blood, not mine anymore. My flesh and organs are still mine. The looks on some of them faces, , , ,! Classic.

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Dora Hates You
 02/23/2023 06:33 PM
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tom

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So, you murder someone and the only evidence is a drop of blood, they arrest your donor? Man. Some weird karma going to come from that.

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add a signature since I'm here in profile anyway
 02/24/2023 04:07 AM
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dingpatch

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Ninja !

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Dora Hates You
 02/25/2023 03:39 PM
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ww

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    The DNA testing is interesting. Ancestry and 23andMe give somewhat different interpretations; I think Ancestry's enormous data resources give it an advantage.
It seems that much of the region including France and present-day Germany has a pretty thoroughly mixed population, so they may not be able to nail down locality info. The ability to do that in Britain and Ireland seems greater, and they absolutely nailed my Ostrobothnia family, a Finland coastal strip on the Gulf of Botnia centered on Vaasa. Placed the Slovaks a bit more loosely. I seem to have an ancestor born in Virginia in 1620 and a whole pile of them a bit later. Family name goes back to a family that moved from Cornwall to Baltimore after the US had gained independence. Latecomers.
 02/26/2023 03:45 AM
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dingpatch

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CORRECTION: My saliva is mine but, it is no good for DNA testing because your saliva generally has blood in it.

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Dora Hates You
 03/04/2023 12:03 PM
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jeff kennedy

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Ding, are u still making fins?

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www.happyponysurf.com
 03/04/2023 02:18 PM
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dingpatch

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Nope, no fins.

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Dora Hates You
 03/10/2023 04:23 AM
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dingpatch

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BIG post-transplant day yesterday, , , , ,

One of my Nashville SCT Team nurses called and told me that my Stem Cell DONOR has requested permission to contact me !!!!!!!!!!!!! She emailed me the release of information consent form for Be The Match and I immediately signed it and emailed it back to her ASAP!!!!!!

In my little part of this World, , , , , , THAT is a really Big Deal for us recipients.

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Dora Hates You
 04/08/2023 03:22 PM
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dingpatch

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And, , , , , , , I spoke with Josh, male, 28, today and we had a good 42 minute call. I'll drive over to St. Pete soon to meet him. He could have been anywhere in the world.

Oh and, who is Josh????

JOSH SAVED MY LIFE WITH HIS STEM CELLS!

FUCKING AYE BUBBA !!

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Dora Hates You

Edited: 11/10/2023 at 05:14 AM by dingpatch
 04/12/2023 07:19 AM
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Cole

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Cool story. We need more people like him.

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I was right.
 04/12/2023 07:21 AM
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Cole

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Ding, you need to teach someone how to make your fins. They are too cool to let them just fade away.

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I was right.
 04/12/2023 07:47 AM
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dingpatch

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My friend Scott is beginning to get "up to speed". He became my "apprentice" in 2020 when the MDS started to set in.

He's still sort-of-kinda frustrated with various little "things" but, I told him that I really was not too sure about how/what I was doing until I did about 60 fins.

He is anxious to get to be able to get a few of his sold around about these parts, , , , , and to be able to say "I made that"!

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Dora Hates You
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