What it’s like to donate – Mandi’s experience

Posted January 9th, 2015 by Be The Match and filed in News
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mandiThere are two ways to donate cells to a patient in need of a transplant –- marrow donation and peripheral blood stem cell (PBSC) donation. Most donors (75%) — like Mandi — give PBSC.

The typical time commitment for the donation process is 20-30 hours of your time spread out over a four-to-six-week period. PBSC donors receive daily injections of a drug called filgrastim for five days to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.

Read what donating PBSC was like for Mandi, in her own words.

Day 1

I went in today for my first Neupogen® injection (Note: Neupogen is a brand of filgrastim). They drew some blood today and did another pregnancy test. Took my vitals and the nurse went over what to expect. I got my injections in the arms, nothing more than a little shot. I get allergy injections in my arms every 4 weeks, so this was nothing new to me. This stung just a tinge more than an allergy shot, but no big deal.

I laid low most of the day catching up on some DVR. I did notice that my stomach was a little off. I wouldn’t say nauseous, but I had no appetite. That being said, I went out to eat with an old friend and managed to eat half of my piri piri chicken dinner and a nice burrata cheese, tomato and petite basil appetizer. I can always make some room for dinner at my favorite bistro.

Sitting at the bar was uncomfortable though. My lower back is definitely sore, enough that you’re fully aware the pain is there, but not enough to stop me from going out to eat. I’m hoping that Tylenol does the trick.

Day 2

This evening brings me to a different kind of pain. Rather than just an achy back and hips, the place that is most affected for me is my ribcage and sternum as well as my skull. I say skull because it’s not a typical headache, it feels like my skull hurts. When I cough or sneeze (I have bad seasonal allergies, has nothing to do with the injections) my skull hurts. But it is not persistent like a headache.

The ribcage pain as well seems to only be when I exert myself, or when I stand up from a resting position, my ribs throb a little bit until I get used to being upright. So, the pains are not a constant, and if I relax and stay on the couch with my movies, I’m okay. I also took the prescription pain meds they gave me, which helped considerably more than the Tylenol, especially on my achy back and hips.

So for day two, I experienced different pain. This is the bone pain they asked me if I had experienced. It’s not like anything else I have gone through in the past. On a scale of 1 to 10, I’d say overall around a 5 or 6, with the medication closer to a 4. I don’t want to discourage anyone from this, because it is a small price to pay and will only last a few more days. From what I’ve read, on the 5th injection day when they start to collect the cells from your blood, you leave that day feeling much better. So, until then, I will relax on the couch with my movies and kitty cats.

Day 3

Today was a very good day, mild pain at times, but that was it. Primarily felt a throbbing bone pain in my rib cage whenever I went from a seated position to an upright position. Again, achy lower back and hips, but those would only be a 1 or 2 on the scale and Tylenol took care of those. I even managed to go to a BBQ and play in a cornhole tournament.

PS. Interesting factoid I learned yesterday … the recipient of my PBSC will have my blood for the rest of her life. Her blood type will become mine if it’s not already, and my DNA will be a part of her. How cool is that?

Day 4

Much like yesterday, the pain is very minor. Little bit of an achy back and hips, a 2 or 3 on the scale, so I just took a few Tylenol. My ribcage doesn’t hurt like it did the last few days. The only new thing is that my hands feel a little tight.

I am looking forward to tomorrow and for the collection to begin, because that means the recipient is one step closer to her transplant.

Day 5 (Collection Day 1)

This morning I got my last Neupogen® injection and then headed to the Donor Center for the apheresis procedure.

It was very interesting. The machine was prepped and ready with saline solution in the lines. Since one line draws blood from my arm and one returns it to my body in the other arm, in order to start the circulation it had to be filled with saline. I have small veins, so one of the phlebotomists came in to hook me up which took about 10 minutes.

The machine started up and the nurse explained to me what it did. My blood came out and into a centrifuge where it separated into parts, plasma, white blood cells and stem cells. The plasma and the white/stem cells are collected in separate bags; the remainder of your blood is mixed back together and returned to your body. Also, a blood thinner is added to the blood to prevent clotting. That actually binds with calcium in your blood and the calcium depletion can cause side effects for some.

First thing I noticed was that I was cold. Your blood is running through this machine which is not heated and returned to your body, so most people get cold during the process. I had a few blankets on to help with that. Also, my lips and tip of my nose were tingly, which was from the calcium, so they put me on a calcium drip as well to help with that. Another weird feeling I got from the calcium was a vibrating sensation in my chest. It felt like my heart was vibrating along with the machine, it was very weird. I also got light-headed. The whole process took just over 4 hours.

Mom was there. She was lucky enough to have the task of itching my nose with a towel because we all know as soon as you can’t use your arms you get that itch on your face. I did feel a little bit of lower back pain and tiny bit of nausea, but that was from the last injection and the fact that I had only eaten half a bagel probably didn’t help that. I avoided any liquids this morning to try to not have to go to the bathroom during that time period. I was not successful in my quest. They went through two bags of the blood thinners which are fluids. You’re not allowed to move your arms or get out of the bed, so I’ll let you use your imagination there. Nurse assistance was needed. I’d say that was the most traumatic thing of my morning. HA!

Afterward, I felt weak and exhausted, couldn’t quite get my legs back under me fully and felt wobbly for about an hour and a half. Went straight home after and laid down. Now this evening, the shots’ side effects feel like they’re close to gone. Aside from the fatigue I may feel tomorrow afternoon, the achiness and nausea should subside from the shots.

Day 6 – Final Collection Day

Today was the last day of my donation process. No injections today, just straight to the Donor Center for my second apheresis.

Today’s procedure was much better than yesterday’s. Very little tingling, only a brief fluttering in my chest. The nausea went away and I was pretty comfortable. It seemed to go faster, only about 3 hours total, maybe a few minutes more. I was actually able to make it through today without having to go to the bathroom, but it was a race as soon as I was unhooked.

The first collection day seemed a bit scary to me and actually had me dreading going back today, but in retrospect I think it was a combination of the last shot hitting me along with the apheresis happening all at once.

Today was an easy day. I felt better right afterward, no light-headedness or wobbly legs today. My mom and I went out for breakfast after, and I’m home and feeling like my good old self. No more bone aches or headaches.

I’m a bit of a complainer (my family & friends may laugh at that one), but I was just trying to paint a picture for those of you interested. What may have seemed painful or uncomfortable for me may seem no big deal to others. In other donor’s experiences I’ve read the donors seemed to find it less uncomfortable than I did, but I wanted to paint a picture of what I went through.

Now my prayers are with the recipient, I hope that the transplant is successful and that I was able to give her the gift of life she needs for a long, healthy and happy life.

32 Responses to “What it’s like to donate – Mandi’s experience”

  1. Paul MacDonald says:

    Thanks. Your diary was very helpful to me. I didn’t have any idea of what to expect.
    Now I do.
    Thanks again.

    • Greg Newinski says:

      Thanks for sharing. I donated last March and my pain increased steadily throughout the week, but it was never unbearable. I had it mostly in the hip/low back area. By Sunday I was feeling much better. The shots were easy for me and much better in the arm than the stomach. I tried the stomach area on day three and that was the only day that I felt much pain.

  2. Tony Aguero says:

    Heya Mandi. Congratulations and thanks for the detailed diary. I hope that I’m as lucky as you, and am chosen for donation.

  3. Sophie Breeskin says:

    I think it is so great what you are doing and I wish I could donate too. You are helping to save someone’s life. I wish more people were willing to do what you’ve done. Thank you for sharing your experience!

  4. Layla says:

    Thank you for being so descriptive and sharing. It was very informative.

  5. Jeff J says:

    Congrats Mandi! I donated in November (had to go the surgery route) and it was an incredibly rewarding experience. Even better, I have since learned my recipient grafted (accepted my marrow) and has been released from the hospital back to his family. What better news could one get? If anyone is thinking about registering, do it. The staff are so appreciative and helpful and they walk you through the whole process. This is a life changing event, not just for the recipient but for you, the donor, as well.

  6. amy says:

    Wow thanks for info, Im a mom and I wondered how this would effect me physically if I was needed. It seems like a small price to pay to save a life! Thanks Madi im renewing my commitment today for another year!

  7. Yvonne says:

    I will be donating in two weeks was kind of neverous but after reading you diary I feel so much better so thank for sharing.

    • Mandi Pitrelli says:

      Thanks Yvonne! I wasn’t sure what to expect before I donated & there weren’t many blogs out there so I wanted to paint a picture for people like yourself! Best of wishes to you & your recipient! Thanks for donating!

  8. Brenda DeYoung says:

    Thank you for sharing your experience, Mandi. I’ve been registered for years, but still hope I can help someone someday. The little bit of uncomfortableness you went through to save someone’s life is absolutely incredible and well worth it. What a great thing you did!!

  9. Julie says:

    What an amazing gift you gave, Mandi! I appreciate you sharing your story in such a candid manner. It sounds very similar to a double red blood cell donation experience in many ways. Best wishes to you and your recipient!

  10. Rachel says:

    That was very interesting and informative. Thanks for the detailed account!

  11. Jose says:

    Thank you Mandi! you are a good person. People like you are the ones we need now in these times. I am also waiting to get a call to save a life, after many years waiting, I see that day coming sooner than later. Anyway, just so you know, I also love kitty cats.

  12. Brian R Schommer says:

    Thanks for sharing. I was fortunate to be chosen to donate almost 4 years ago and I’d have to say while I had some of those symptoms mine were never all that painful.

    I am curious why you had to donate on two successive days as my donation was only one 4 hour donation event.

    My donation went to an individual overseas and as a result I unfortunately never heard anything about the success or failure of the donation, but I like to think it made a difference.

    I’d donate again in a heartbeat–the few days of inconvenience were well worth it for the feeling you get for giving someone a second chance at life.

    • Mandi Pitrelli says:

      Thanks Brian & thank you too! I’m not quite sure why 2 days. I was told it had to do with counts. If they had high enough counts on day 1 maybe I wouldn’t have needed a second day but I was told 2 days all along. The 2nd day was shorter because they didn’t need that much to meet their counts. I also know some pheresis centers hook you up on top of your hands instead of in your arms like a normal blood draw for some they can move or use their arms. Some do it in one arm only. So every donor center is different. My donor center is a renowned cancer center with their own bone marrow wing & pheresis center so they’re pretty set in their protocols there.

    • Mandi Pitrelli says:

      & Brian I also think my recipient is in another country. I was told her donor center did not allow contact. My rep pestered the doctors though & I did find out she had slight rejection, very mild GVHD, at first but did engraft & was at 90% her pre-cancer health about 6 months out. I choose not to start any communication process as I didn’t want her to feel pressured to contact me. I thought if she reached out to me I’d return it but left it at that. I often wonder how she’s doing.

  13. Jodi says:

    Mandi,

    Thank you for being a donor and for sharing the experience. I have been signed up for the last 15 yrs & not had the experience but I’m glad to know what to expect when the time comes.

  14. Sharon Hunter says:

    Mandi,
    I read your account with great interest as I am in the very preliminary phase of being screened as a potential donor and naturally have questions. Your account helped paint the picture for me and hopefully I too will get the opportunity to help someone as you have.
    thank you

  15. Lynn says:

    Thanks for your willingness to share the experience. My son will donate next Monday and I will be his companion through the process. Your info was helpful. I’ll know now more what he’ll be going through.

  16. Ann says:

    Heroes, all of you –
    Donors and those waiting to get the call to donate.
    I will be receiving in a few weeks.
    Thank you sweet and unselfish souls for giving a part of yourself to those of us who are so weak and ill.
    God Bless You !

  17. SonsoNY says:

    Your process mirrored my wife’s. While we never met her recipient, he is cancer-free. I have been doing pheresis for 30 years, and was able to offer encouragement during the PBSC process. She got her ticket to heaven stamped, while I am still working on mine 🙂

  18. L. R. says:

    Great writeup, thanks for sharing!

    As someone who donated a long time ago, I’d encourage you to continue to log your experience, even after the donation becomes a “distant memory”. Donating is a life-long, emotional journey that is definitely worth it!

  19. Rhoma says:

    Thank you Mandi and all other donors and registered donors. My daughter is a stem cell recipient who is about halfway through her 100 day journey back to health and a new life! While it’s wonderful to hear donors say how rewarding the process is, we will be forever grateful to my daughter’s donor!

  20. Susan McConnell says:

    Hi Mandi!
    Thanks for writing this. As a PBSC recipient I have often wondered what it was like for my donor! He had to donate twice since I was in a clinical trial for the first transplant and what they were testing in the trial didn’t work and my cancer came back. He is my HERO! I am still here and kicking 9 years post transplant! I was told 10 years go that I probably had about 7-8 ears to live without this procedure! (My cancer is slow growing but has no cure.) The transplant could be a cure for me! I guess I have to live a longtime and die of something else!;-) That is my plan! My Blood type changed from O to AB and all of my blood products have male DNA!I am so grateful for you and all donors that give people like me a second chance at life! I was able to see my daughter get married, have a son (I adore him!) and will meet my new granddaughter in April!
    Thanks for sharing your experience!
    Sue

  21. Mandi Pitrelli says:

    Thank you everyone for your kind words! I’d do it all over again 10 times in a heart beat if they needed me. Best wishes everyone!

  22. Helen says:

    Good for you, Mandi, that you were brave enough to go through the process! And thank you again for writing about your experience so that I and others know better what to expect. As many have noted, a very small price to pay to help someone in dire need. I hope your article reassures those who were on the fence that they can do it, too!

  23. Jeff S. says:

    Good Job Mandi,
    We are proud of what you did, I donated 6/2013, finally got to exchange info after 1yr. with my reciepient from Canada, he delayed info only wanting to share good news, was so Thankful, after about 18 months, but now he has a skin cancer accuring not A.L.L , we exchanged pics and emails for about 2 months , but now it’s been 2 months with no reply, just want you to keep your guard up(I’m sure you were warned) it hurts ,
    Praying for a Great long lasting outcome…
    Jeff

  24. Jill says:

    Thanks Mandi! About to head into my donor-physical tomorrow and was curious about the process. This diary really helped me and if I’m cleared for donation I’ll direct friends/family here to give them a better understanding and help assuage any concerns.

  25. Jen says:

    Way to be awesome, Mandi!

    I donated marrow 2 and a half years ago to my mom so I got to see both sides of the process. Let me tell you, once a patient gets to the point where a bone marrow transplant is their best option, they NEED people like you. It’s such a stressful process to try to pick the best course of treatment, then to see if a match can be found among the millions of registered donors. Finding a match is often someone’s best chance at survival so the fact that you were willing to answer the call is heroic.

    Donating marrow (instead of PBSC) was different in that they knocked me out and did it all at once (no treatment ahead of time aside from iron supplements, then I spent one night in the hospital), but similar in that I only experienced discomfort for about a week (shuffling along like an old lady!) – it’s ultimately insignificant considering what the recipients go through though.

    My mom’s blood type changed to mine too which I thought was so amazing. She then started asking if she was going to get my allergies (I feel for you – I get shots every month too), if the fact that her skin felt oily was because of me, etc. I’m not sure either of those things are true, but you take the bad with the good!

    Anyway, thanks for sharing your story and congrats on saving a life!

  26. Jay says:

    Thanks so much for taking time to document and to share your experience. Others have and will be inspired by what you have done. God bless.

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