Patient Update

I woke up yesterday and as I do every morning, I reached for the iphone that is under my pillow and did my daily alert check… how many facebooks, how many texts, how many emails came in while I was asleep. Neurotic? YES. But I know I’m not alone.

Anyhoo… there was an email from Nancy at the HLA Registry (my Donor Center rep) that she had received a patient update and to call her right away. I was so excited to hear any news. Originally she told me that the recipient’s donor center did not allow any contact whatsoever but that she would pester them every once in a while just to see if they’d respond. I called right away and she gave me the answers they provided to a questionnaire. Here’s a little summary:

-no problems with the cells received
-no need for a second transfusion of cells
-no bacterial cultures
-no recurrence of the original disease at this time
-patient has/had acute grade II GVHD (graft versus host disease) (this is a type of rejection of the new cells, grade II indicates moderate symptoms and from what I’ve researched can be treated, I didn’t get clarification if she HAS it or HAD it. still looking into this)
-patient’s Karnofsky/Landsky score is 90 (capable of normal activity, few symptoms or signs of disease)

Overall… this is GOOD NEWS!!! But her journey is not over, so keep the prayers and good juju coming in for her… & for Steve too(there’s a link on the side to his story & some pictures down a few posts).

On another note, I shared my story with a nationwide newsletter at work (at the IRS) and my management has taken note and are now on board with my efforts to host a donor drive at work so that should be up and running soon. Stay tuned for updates.


I’m a SMART Volunteer!

So as most of you have seen, I’ve kind of “TAKEN” to the cause here and am constantly reading all of the Be The Match facebook updates and Tweets. I have been very active on my comments and sharing on their sites. Someone took notice, and after some training… I’m now a SMART Volunteer for NMDP. It stands for Social Media Active Response Team and I’m pretty psyched about it. I take their work very seriously and the cause is dear to my heart, so I am thrilled to be participating. Please “like” them or “follow” them to keep up with all the great work they are doing and remember if you can’t register, you can still donate or volunteer.

Also… news on the donor drive…. the logistics with my business park have turned out to be a little stickier than I thought, but it is still in the works. I have a huge term paper due in 10 days & then I have a 4 week breather, so I’ll be back on track to hopefully have it scheduled for around February. Maybe a Valentine’s Day theme instead… “Show your love by giving the gift of life” ??? Open to suggestions. Stay tuned for more details.

Give the GIFT OF LIFE this holiday season… come get swabbed at my donor drive in December!

I don’t have all the details yet, but will be hosting a donor drive at work in December close to the holidays with the hopes that people will be willing to GIVE THE GIFT OF LIFE this holiday season. It will be hosted at the Appletree Business Park in December, it’s painless and free, you just show up and get your cheek swabbed… it’s just that easy. Even though it is of no cost to get swabbed to you, it does cost the Be The Match Registry between $50-$100 to tissue type your sample to get you added to the registry. Please consider donating to my Birthday Wish (it’s not my birthday, but an easy way to set up a way for you to donate directly to the cause) to help balance some of these costs to the Be The Match Registry and National Marrow Donor Program.

More details to follow…

help Sue reach her Birthday Wish!

I know many of you have read my mentions of Sue & Steve, a woman blogging about her husband’s stem cell transplant from his sister. Well, for her birthday in lieu of gifts she set up a Birthday Wish page on facebook to help raise money toward the Be The Match foundation so they can continue saving lives and keeping it at no cost to the donor. Please consider donating to her Birthday Wish. She’s almost at her goal of $2,000 but let’s push it over that amount. Also, send all the prayers, good vibes & JuJu that you can over Steve’s way. He’s just received a second stem cell transplant from his sister. Read Sue’s blog here too.

Thanks for all the support! Remember all the recipients out there still need prayers and juju, every bit helps. =)

Steve & his wife Sue

Steve & his son Kevin

almost 3 weeks later

So it’s been 18 days since I donated my stem cells & I’ve been thinking a lot about the recipient of my stem cells and hows she’s doing. I pray that it’s a success & she isn’t encountering any nasty side effects or GVHD (Graft Versus Host Disease). Reading Steve’s wife’s blog about her husband receiving his sister’s cells has been very informative for me; I have learned so much about the other side of things. Please continue your prayers for both my recipient and Steve as well as any other recipients out there that all is successful & they’re families can hold on to them for much longer!

I felt all better & back to myself in just a few days. Had just slight bruising at the IV site for about a week & that was my only physical reminder of any of the process. I feel so blessed to have been part of something so much bigger than ourselves. I’ll keep you posted if I hear any updates on my recipient, but the NMDP told me her donor center states that they do not provide any updates. I don’t even know if she’s in this country. My rep told me she’d send correspondence to her donor center to request an update, but there is no guarantee I will hear back. That is perfectly fine with me; I’m just happy knowing I gave some one the opportunity for a longer life.

all done

Well, yesterday (2 days ago now, technically) I finished up with the donation with my second stem cell collection. I felt great last night and even better today. Appetite is back in full effect and no more pain (aside from slight bruising where the needles went into my arms from the collection). I even got a few gifts from my Donor Center. A “swag bag” with a t-shirt, mug, pen, etc. and a fruit basket with nuts, crackers & cookies along with a Thank You card in each. That made my day, along with all the wonderful comments some of you had left on facebook; a special thank you to one of my bestest friends, Niki, for sharing my blog with so many.

Now, say your prayers the patient has a successful transplant and I will keep you all posted if I hear anything from the NMDP regarding her health. You can also follow Steve’s story on his wife Sue’s blog about his transplant journey, I provided a link in my favorites. His Day Zero (transplant day) is tomorrow, Friday. Keep him in your prayers as well.

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 apherisis. I was nervous this morning because I was uncomfortable yesterday and still a little bit nauseous. I think that was just leftovers from yesterdays shot and my nerves. So before leaving for the hospital I took a xanax and stopped off for a gingerale.

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 apherisis happening all at once. Typically, I went home and rested or napped after the shots. 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, I’m home and feeling my good old self. No more bone aches or headaches.

So, overall I’m happy that I did this and would encourage more of you to join the registry. But again, it’s a serious commitment and not for everyone, but a very rewarding experience and fairly easy to do once you commit to it.

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. The other blogs 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.

Day 5 (Collection Day 1)

Almost done with my donation; one collection day down, one to go. This morning I got my last Neupogen ® injection and then headed to the Donor Center for the apherisis 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 & stem cells (those are together, the injections stimulate white blood cells which pushes the stem cells into overdrive and into your bloodstream). 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 coagulant (or 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. Again, all a small price to pay but I just wanted to paint you guys a picture. 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!

There was also a woman next to me who was having her own stem cells collected for a autologous stem cell transplant for a later date. I learned that cancer patients undergoing radiation or chemotherapy deplete their own white blood cells and bone marrow during treatment, so they can harvest their own stem cells for use later as a rescue measure to replenish their own healthy blood cells, often done for lyphoma patients. I also learned last night that Andy, (cousin’s cousin mentioned on my other page for how I came to be a donor) hadn’t actually received a transplant from a donor, he had received his own stem cells in this same fashion in an attempt to become healthy enough to receive his own bone marrow transplant from a heathly donor which is what prompted his family’s drive.

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.

PS. Don’t mind me in the picture, not exactly a glamour shot, but hey, we can’t look good in EVERY picture after all.

Day 4

Typical morning of getting my injections. Came home afterward, had a little breakfast and went back to bed, I was exhausted. More than likely just because I’m not a morning person, not the injections. But I forced myself to eat first only because I am still having a tiny bit of nausea and eating helps.

Woke up and 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, almost arthritic feeling. That would be the bone pain, after all that’s what arthritis is, right, bone & joint pain? So, today is a good day, just minor aches.

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

PS. I asked the nurse today if they had lowered the dosage at all, she said no. So the reduced pain just must be myself getting used to the Neupogen ®.

Evening 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? Great article released in the Wall Street Journal yesterday… you have to read it!!!