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Topic Title: Dingpatch's 2021 Bone Marrow/Stem Cell Transplant Blog Thread
Topic Summary:
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  
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 06/30/2021 08:05 AM
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dingpatch

Posts: 17170
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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.

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

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how come NO ice cream breaks???

You got this!!!!

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

Gen. Washington mandated small pox inoculations for his troops.
 07/03/2021 05:23 PM
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dingpatch

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Burry, no ice cream but, plenty of sausage gravy!!!
 07/04/2021 02:24 PM
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Cole

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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.



-------------------------
So long and thanks for all the fish.

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

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All packed and ready for the drive, first thing tomorrow morning (Monday).
 07/05/2021 09:38 AM
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Cole

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

-------------------------
So long and thanks for all the fish.
 07/05/2021 11:41 AM
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Burry

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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

Gen. Washington mandated small pox inoculations for his troops.
 07/07/2021 05:21 PM
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dingpatch

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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!
 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
 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?

-------------------------
So long and thanks for all the fish.
 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

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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.
 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!

-------------------------
So long and thanks for all the fish.
 08/21/2021 08:15 AM
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dingpatch

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



-------------------------
So long and thanks for all the fish.
 08/22/2021 09:00 AM
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dingpatch

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And, I must thank seasmyth for being my "first shift" Care-Giver here in Nashvegas!!!!! He is a Pro
 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!!!!!!!!
 08/31/2021 03:58 PM
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dingpatch

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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.
 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

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

Great to hear!

-------------------------
So long and thanks for all the fish.
 09/13/2021 09:17 AM
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dingpatch

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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"!!!!!
 10/06/2021 07:43 AM
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dingpatch

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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.
 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

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

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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!!!!!
 10/14/2021 01:25 PM
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ww

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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

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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 !!!).!

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

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YEA!!!!!!!

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

Gen. Washington mandated small pox inoculations for his troops.
 10/21/2021 06:05 PM
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Cole

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WOOT WOOT WOOT WOOT!

So awesome it deserves four!

WOOT!

Make that five!!

-------------------------
So long and thanks for all the fish.
 10/22/2021 03:38 PM
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ww

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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

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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 !!

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.

-------------------------
So long and thanks for all the fish.
 11/02/2021 05:35 AM
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RustyTruck

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Well done.

-------------------------
I prefer the welfare state to the warfare state.
 11/02/2021 03:59 PM
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dingpatch

Posts: 17170
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I must offer this "Be The Match" video

Be The Match

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 had previously asked him about the Nurse Practitioners at the VA and Vandy. He told me that I should know, because I was being treated by The Very Best one Anywhere/Everywhere; my NP Donna !! (I Love her). I go back to Nashvegas in July for my One Year.

Edited: 01/23/2022 at 08:53 AM 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+.
 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 ??!!
 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 National Center of Excellence for Bone Marrow Transplants.

The VA/Vandy Bone Marrow 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 the first medical facility in the Nation to be approved by the FDA for CAL-T T cell treatments for blood cancers.

Vandy alone performs "almost" more Bone Marrow 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 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, Kidney, Liver and Lung transplants than anywhere else in the Nation.

As my "Attending Physician", the VA/Vandy Medical Director of Bone Marrow 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!!!!!!!

Edited: 04/12/2022 at 07:45 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.
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