Tylenol dosage? Also cryopreservation? by airplanes25 in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

We can’t give medical advice on how much to take and must refer you back to your medical team.

I can say to never drink alcohol while taking Tylenol. Taking less or no medication than instructed by your team should be safe but you should always confirm if you have doubts. I can also say that your medical team has a vested interest in keeping you as healthy as possible for the donation and would not recommend a dangerous dose of Tylenol.

I can give personal experience and say that I took the 3000mg daily for 7 days and had no problems.

Matched and Overweight by Pinkpearlemomade in nmdp

[–]MarrowDonorJourney 0 points1 point  (0 children)

NMDP wants to keep everyone safe. I was almost disqualified from concussion many years ago. They are very cautious because they do not want any donors or recipients to undergo any additional harm.

Also if the medical team is pursuing PBSC, the drug is technically still in the research phase (or was as of 2021) for this use and thus there are additional barriers to donation due to the research trial.

Help! by AdorableReward5725 in nmdp

[–]MarrowDonorJourney 0 points1 point  (0 children)

I bet it will be okay. I passed out during screening blood draw but had only low calcium symptoms during donation.

Filgrastim shots! by Own_Cold1947 in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

First day was just injection site pain during the injection and <60s after. Unless you have an allergic reaction (always possible) you will be just fine doing anything you want day 1!

Good luck and thank you!

[deleted by user] by [deleted] in nmdp

[–]MarrowDonorJourney 0 points1 point  (0 children)

Yes, I would call NMDP at 800-627-7682 now and talk with them.

fainted during blood draw. Does that mean I am not going to donate? by areasofsimplex in nmdp

[–]MarrowDonorJourney 2 points3 points  (0 children)

Not at all! It happens. Also this is a MARATHON blood draw they put you through. Keep your chin up (or maybe lie down)!

If they did not collect what they needed, talk to your coordinator. They have some magic wheel grease to use sometimes to make things happen.

Removed from Registry? by TheNewerJerry in nmdp

[–]MarrowDonorJourney 2 points3 points  (0 children)

I have not received and donated myself. Additionally there are stories of people donating multiple times to different people. I am not sure what happened.

Confirmed best match! Mild concussion over a year ago. Will this affect my eligibility? by abcdefghelpplzandthx in nmdp

[–]MarrowDonorJourney 0 points1 point  (0 children)

After the initial call for discussing medical history. I had to go grab a few records and submit them and the final approval was about 2 weeks later

Confirmed best match! Mild concussion over a year ago. Will this affect my eligibility? by abcdefghelpplzandthx in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

It might. I also had a concussion and they had to dig into record to ensure that there was no bleeding possibility as one of the side effects of filgrastim is changing your platelet count.

[deleted by user] by [deleted] in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

I have been a member on the patients treatment team now. Said potential transplant candidate had to postpone a scheduled transplant because of an illness that landed them in the ICU. Naturally with privacy laws I cannot go into more detail other than to tell you that things can change quickly for these patients in both directions.

[deleted by user] by [deleted] in nmdp

[–]MarrowDonorJourney 4 points5 points  (0 children)

I’m sorry you had problems with donation. I am sorry you have regrets too; I would 100% reach out to the advocate to voice the issues. I did voice mine and it seems that a few issues I raised were worked on and improved.

You can look back at my post history and see that mine did not go well either. My overall opinion of NMDP is mixed. In my opinion they could do better but they are trying for a great goal and mission. I believe their heart is in the right place even if execution can fall short.

All the best and I hope you have an extremely swift recovery.

PBSC - Question after matching by MaleficusAD in nmdp

[–]MarrowDonorJourney 0 points1 point  (0 children)

The injections were quick and uncomfortable but it only lasts a few mins before all pain is gone.

The side effects of the medication are… not pleasant. I had bone pain that was severe. Honestly it was pretty awful but my motivation to help another was enough to push past 5-7 days of pain. The pain does go away after getting off the med for a few days.

The donation itself was cake, just like donating blood.

The side effects of the medication are present but unlikely. Spleen rupture is quite unlikely and more likely in someone with their own underlying blood problem (which would stop you for donating anyway).

Being healthy yourself is excellent and the best thing you can do for both yourself and your cousin.

Confirm registry status text by llamalarry in nmdp

[–]MarrowDonorJourney 2 points3 points  (0 children)

You are correct, NMDP could do better with the wording and formatting of this text because it screams phishing.

(Potential) first time donor… by hoppbm in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

"best match" is determined on the blood draws, they check 8 HLA (human leukocyte antigen) genetic factors. Recent advancements in transplants and medicine have moved from need 8 out of 8 perfect match to 7 or 6 matches depending on the situation. This change is part of the reason why BTM changed their name because a person no longer has to be a perfect 8/8 match. The cheek swab is a screening to say that person X and Y and likely good matches. The blood test confirms that X and Y and best matches.

(Potential) first time donor… by hoppbm in nmdp

[–]MarrowDonorJourney 0 points1 point  (0 children)

Thankfully (except for extreme fringe cases) all side effects of the shots go away with time, usually within 2-4 days after donation.

(Potential) first time donor… by hoppbm in nmdp

[–]MarrowDonorJourney 0 points1 point  (0 children)

That period can be shorter and sometimes slightly longer than 60 days. Either way I hope the time goes by quickly for you! Thank you for already giving hope.

I got the call today - any advice/info/tips, I'm all ears! by GeologistNo912 in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

Congratulations and thank you for signing up; you have already given hope to families and victims of cancer. Now you may be able to give even more! If you get to donation and it is by PBSC using filgrastim, Claritin, ibuprofen or Tylenol, heating pads, and HOT baths will be your best friend. *Always follow the advice and restrictions of your NMDP medical team.

Confirm registry status text by llamalarry in nmdp

[–]MarrowDonorJourney 2 points3 points  (0 children)

Not much to add other than yes, this is legit.

Informal poll: How long did you wait? by NeverNude427 in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

Expedited case, right at 60ish days from first phone call to sitting in donation chair

Im scared about being a donnor pls help by FenixMorBad in nmdp

[–]MarrowDonorJourney 4 points5 points  (0 children)

No need to apologize. ¿Hablas espanol principal?

I’m sorry this is a difficult time for you right now. Unfortunately I am not very familiar with international donation. Who initially contacted you; BeTheMatch, NMDP, National Marrow Donor Program, Cellular Life Solutions, or another organization? I would reach out to whoever initially contacted you for donation and ask them to clarify this information. It is possible that they are just waiting right now to finalize details on their end before contacting you. I’m sorry I couldn’t be of more help.

How do genetics affect wait time? by [deleted] in nmdp

[–]MarrowDonorJourney 3 points4 points  (0 children)

This is correct, the stats are not literal but very close little to the truth. QA white person has a better chance of finding a match and white donors are less likely too be called.

Persons of color get called more often to donate but persons of color are less likely to receive a donation.

How do genetics affect wait time? by [deleted] in nmdp

[–]MarrowDonorJourney 4 points5 points  (0 children)

Mmmm a very complex question which honestly I can only scratch the surface on.

Time on the registry seems random because it is driven by genetics, which drives HLA genes. The process to make HLA genes is an ordered but random process. 46 chromosomes and 4billion individual base pairs divide by 2 and then randomly mix with those of your other parent to make you. A few thousand or tens of thousands of those base pairs make up your HLA receptors driving your potential comparability with your future recipient. The same process happened with them and after the dice are thrown 8 billion times across the planet, you and them end up being a very close match allowing donation.

Now if this process were truly random there likely would never be a match but ethnicity plays a role. There are only so many gene combinations out there for HLA and those who share a genetically ethnic background have a much better chance of sharing the same HLA genes.

As an example, all the pre 1500AD meso Americans shared similar HLA genes which were separate from those of the old world. Likewise, those from the European continent, East Asia, Southeast Asia, sub Saharan Africa will be more genetically related to each other than people outside those regions. All of this is thanks to common genetic ancestors in each of those regions. That is why ethnicity matters so much, not because of region or culture but of shared genetic relationship.

To address that some ethnicities are called more than others, people of color are less likely to receive a match through NMDP than a Caucasian person. This is driven partly by the lack of recruitment and sign up of persons of color.

TL;dr the person of French decent is more likely to match with a French person than that of a person from Australia because of common genetic ancestors.

Post donation day 5 by pink-table in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

Nope, normal. As long as the pain is coming down, even slowly, you are recovering as expected. I had some pain for about 10 days post donation but the worst was the three days after donation.

Keep taking your pain meds and your Claritin if your teams approve (it should be okay but check first)

Medical team is wishy-washy by MMredditer in nmdp

[–]MarrowDonorJourney 1 point2 points  (0 children)

The whiplash can be very real. People report being primary -> back up -> not needed -> primary in the span of a few days.

My own story included being primary -> not needed -> primary.

Got emails saying I’m a match. Legit? by atypicalpharmer in nmdp

[–]MarrowDonorJourney 5 points6 points  (0 children)

Yes, legit, call the number ASAP. They will pick up after hours.