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Topic Title: PHASE 2 of my consolidated Bone Marrow Transplant blog
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Created On: 01/16/2020 08:19 AM
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 02/07/2020 05:14 PM
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theglide

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Hang tough Ding.

You have all of us praying and supporting you!

You WILL win this fight!
 02/11/2020 03:26 AM
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dingpatch

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Friday (2/7) was more blood labs for Oncology, , , , . Some good! Some a little worse. More labs tomorrow morning (2/12). If there is no improvement, I'll probably get two (2) units of "packed" blood on Thursday (2/13) !!

On another note, , , , yesterday's chemo made me Sick As A Dog. Gonna need extra anti-nausea meds today!

Edited: 02/28/2020 at 05:49 AM by dingpatch
 02/20/2020 07:52 AM
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Cole

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What doesn't kill us makes us stronger, but you don't have to like the fucking process.

You sound good and positive ding, keep swinging for those fences.
 02/26/2020 02:41 PM
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dingpatch

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No more problem with the chemo; the "anti-nausea" pre-meds did their job.

I've been getting blood labs done every week and they've been so-so BUT, yesterday's labs showed a hemoglobin count of only 6.7; the "cut off" is 7.0. So, I had to go to Lake Nona this morning to get a unit (pint) of blood! More labs next Tuesday, , , , ,.

The transfusion did in fact "perk me up" a bit.

Edited: 02/28/2020 at 05:50 AM by dingpatch
 03/08/2020 02:24 PM
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dingpatch

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Went to Lake Nona this past Friday (3/6/20) for my dental screening, which was my last "pre-Nashville" check-up. No problems found and, a such, I should be finally cleared for the transplant. At least, by Lake Nona VA standards. Lake Nona will put my "package" together and forward it to the Nashville VA for review and final clearance.

Tomorrow morning I start another week's worth of "belly shot" chemo.

Edited: 03/08/2020 at 02:25 PM by dingpatch
 03/08/2020 06:44 PM
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Cole

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The transfusion did in fact "perk me up" a bit.

Does the sun burn you more these day?

Eyes getting light sensitive?
 03/09/2020 02:22 PM
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dingpatch

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Cole, I can't tell that I got any "side effects", other than the "boost.

I did see my Oncologist before chemo this morning. "Most" of my blood numbers are "up" to a more "acceptable" range! My total white count is still "critically low" but it is lots better than it was the other week. Up, and onward!
 03/19/2020 12:46 PM
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dingpatch

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The VA just called. They will do a phone "Transplant" interview with me tomorrow morning so that I do not have to travel to Lake Nona and be "exposed"!! Yay! It has not been too big of a deal riding the shuttle over there for chemo but, I have to be at Viera by 8 AM and then I don't get home until about 3 PM.

Edited: 05/18/2020 at 02:09 PM by dingpatch
 03/25/2020 09:37 AM
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dingpatch

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The "phone interview" went well and was otherwise pretty much a compusorary "Name, Rank and Serial Number" thing. The VA Transplant Coordinator, Heather, and I have met and talked somewhat frequently over the past 28 months.

I am "approved" by the Lake Nona VA and, as such, they forwarded my "package" to the Nashville VA Friday afternoon.

Now, the ball is rolling and I already have an initial, video, appointment with the Director and Team in Nashville on April 2nd. I should have abetter idea about me needing a bone marrow donor and such, and also a pretty good idea of what the schedule will be.

I'll keep you posted.

Edited: 03/27/2020 at 06:27 PM by dingpatch
 04/02/2020 11:37 AM
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dingpatch

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I had the video conference this afternoon with my "Team" (Doctor and Nurse Practitioner) at the VA in Nashville. Nothing really to add at this time, other than; they will proceed to find me a donor "match", even without "COVID" it would be months away and, in any case, nothing much will proceed until "COVID" is no longer an issue. Wait and see.
 04/06/2020 01:04 PM
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dingpatch

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Started my 4th monthly (week long) chemo at the Lake Nona VA this morning. I thought it was unusual when they took me to a room other than the regular "infusion center". From what I could see, there were open seats. The nurse said that I was getting a "private room" because they did not want me "mixing" with the other folks. Hmmmmmm!? Most of the other "folks" are no better off then I am. While I was sitting in "my" room waiting for the chemo meds to get there from the pharmacy, one of the Transplant people who was working from home called me. She asked me how I was feeling, etc. . . . and that she had seen the recent communications between Lake Nona and Nashville regarding my upcoming Transplant, etc. But then she asked me about how/what I was doing about meals and such. No problems, I know how to cook pretty darn good, etc. She asked if I was doing my own shopping. Yes, Walmart and Publix, quickly in-and-out. Well, you know that you are in the Very High Risk group (not just plain old "high risk" but VERY HIGH RISK!) and you SHOULD NOT be going into ANY stores! She told me to do "pickup" at Walmart or have Publix deliver and, again that I SHOULD NOT be going into any stores! Hmmmmmm, , , , , OK, I get it. The Fear OF God has been instilled into me.

Then, a Lake Nona Transplant nurse came in. There had been some email from Nashville concerning some additional testing they wanted done but, no hurry. Oh Boy, Goody. I get to have another Bone Marrow Biopsy (which is normally done somewhere between the 4th and 8th chemo cycle). They want me to see Dermatology for a skin check and also have a MUGU Scan (nuclear medicine heart stress test). They gave me the little "smear of poop kit" to do and turn in. And, the most very best part of it all is they want me to see the Urologist again for another "Greasy Finger" up the butt examine!!!

Today started my 4th month of this chemo and it does seem to be taking effect. My platelets are up to a "normal" range! My hemoglobin is up to "almost" a normal level, but my white count is better but still "Low" and, as such, I really do not have much of an immune system.

Edited: 04/10/2020 at 07:21 PM by dingpatch
 04/10/2020 07:28 PM
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dingpatch

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Finished my 4th month of 1 week chemo today. No Problems.

The VA Nashville/Vanderbilt want some more tests done. ANOTHER Bone Marrow Biopsy (my 5th!), which would be done in any case sometime between the 4th and 8th rounds of this chemo. Dermatology "Skin Check", Nuclear Medicine heart stress test (MUGA Scan), and my most very favorite, , , , Urology. Lots more blood labs, ect. once I get the "typing" kit for the donor search.
 04/22/2020 09:16 AM
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dingpatch

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Going to drive to Nashville on May 4th and have appointments and tests and such on the 5th, 6th and 7th as part of the "donor activation visit" They reportedly have found multiple matches for me but, the VA needs to see me and lay their hands upon me before they can move forward.

Initial indications are that "the real stuff" would be 6, or so, weeks after this visit.
 05/06/2020 04:20 PM
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dingpatch

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Uneventful drive Tuesday. Set the cruise control on 84 and flowed along with traffic. Drove 95, 528, Turnpike, 75, 475, 75, 24 to Nashville.

Started bright and early Tuesday (5/5/20) morning at 7am. Went to Pulmonary first for a Pulmonary Function breathing and O2 and CO2 test. Then back to BMT where they took more vials of blood than I could count. Peed in the bottle. Then had a pleasant bone marrow biopsy, LOL LOL. Then an EKG, then a chest X-ray, then a MUGA scan. Got back to the hotel room sooner than I expected.

Wednesday started bright and early at 7am with a PET scan. Then up to the BMT clinic for vitals, a good talk with my Nurse Practitioner (NP) Case Manager, then an in-depth talk with the NP and my Transplant Doctor; why I need a Transplant, the good things, and the Bad things, etc. All went well. All of my tests were good, except that they had not got back the results of the PET scan, and the bone marrow would take a little longer because they were doing a very deep dive into the genetics of my marrow. And, , , , my White Count was up to 2.2 from 1.8!!! I will be inpatient at the VA Medical Center during the Transplant process (about 3 weeks) but for a period of time after the transplant, my immune system will be rated as "0.00%"!!!!!

After the discussions with the NP and Doctor, I asked what was next for Thursday. They were happy to report that I was done for now and that I could go home Thursday and not wait until Friday as originaly scheduled!! YAY!!.

IF, all is OKAY, the BMT department will start the donor process. From there it will be 6 to 8 weeks before I go back to Nashville for the Really Big Show!! But, it could be a longer wait if they find that my bone marrow can "wait". They are very hesitant to put me through the "wringer" if not immediately needed due to the threats of that little "COVID" thingy.

The drive home was, again, uneventful. Drove 24, 75, 475, 75, 10, 275, 95. Set the cruise on 85 and kept up with traffic all the way home. We had more than a few idiots pass us like we were sitting still!! Speed on Brother, Hell aint half full. It was a 10.5 hour drive each way.

Edited: 05/08/2020 at 04:12 PM by dingpatch
 05/08/2020 04:13 PM
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dingpatch

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If anything is not OK with my bone marrow, or the PET scan, I figure that my Oncologist will talk to me about it during my visit with her Monday morning.
 05/14/2020 06:39 PM
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dingpatch

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Timeline:
1st week testing and review results
2nd week get line, admitted and start chemo
3rd week finish chemo and transplant: Day 0
In hopstial probably for another 14 days til blood count recovery

You will be in Nashville for at least 100 days after Day 0
during your inpatient stay, you do not have to have a support person there the whole time. We encourage, but not required.

You listen very well. Damn near perfect!!



AND, , , , the chemo is starting to work a little bit better, , , , my White Count is "up" to 3.9!! 4.2 is the minimum of the "normal range.

And, the VA NP and Doctor made it very clear to me last week that after this Transplant, I WILL BE THEIR PATIENT for the rest of eternity in regard to anything to do with the transplant. Anything in regard to "check ups", "follow ups", "problems", etc will be done in Nashville. The Lake Nona location will only be a starting "reference" point. Lots of travel coming up over the 12 months after the Transplant.

Edited: 05/14/2020 at 07:00 PM by dingpatch
 05/15/2020 02:04 PM
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Cole

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Thank the Maker you have the VA. Just imagine trying to do this as a regular person. Treatment has to be in the millions.
 05/15/2020 02:22 PM
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dingpatch

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Not quite "millions" but last time they told me it was really close to 1/4! (BUT, I did do a search and found that "Joe Public of my age would end up creating "billings" of over $1 million!!!!

But the VA and Vanderbilt have a symbiotic relationship on this:

The VA Medical Center is located in the middle of Vandy's campus and it is physically connected to the Vandy Medical Center and Cancer Institute. The VA gets to have access to all of Vandy's "state of the art" treatments and stem cell research/specialists (along with many other organ transplant disciplines). Vandy gets to have access to the large VA pool of patients and the Vandy doctors work at the VA, for the VA, and as such, Vandy does not have to cover any "liability insurance costs" for their efforts at the VA!!! It works to everyone's best interests.

Between the VA and Vandy, that location performs more bone marrow/stem cell, kidney, liver and lung transplants that any other place in the country!

Again, I had previously been upset about being sent to a VA facility in Tennessee (before I knew what really goes on there). "Why can't you send me to somewhere good here in Florida like Moffitt?" "Well, would you rather get treated here by the doctors that wrote the paper or, do you want to get treated somewhere else where the doctors are reading the instructions?" !!!!!!

Edited: 05/19/2020 at 07:39 AM by dingpatch
 05/18/2020 02:14 PM
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dingpatch

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Finished the 5th round of "belly shot chemo" this past Friday (5/15/20). Same old but, my little belly is pretty darn tender right now. Not too tired or such but, my "taste" aint no good. Oh well, could be worse.

Edited: 05/18/2020 at 02:21 PM by dingpatch
 05/19/2020 05:31 AM
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Central Floridave

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Ugh. I'm needle shy so reading this hurts me, but obviously not as bad as it hurts you. Hope it works. Hang in there.
FORUMS : NPNR : PHASE 2 of my consolidated Bone Marrow Transplant ...

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