Highest Rated Comments


CupcakeAly20 karma

Depression medication is known to kill libido. I have this same issue w/ my husband. Try looking at other meds. Wellbutrin is actually supposed to boost libido for a lot of people. There's also a Web video series from the Gottman Institute (Gott Sex?) which you may be able to use to help open the discussion more. It's tough bc we got in a loop where sex became a trigger topic & even trying to be intimate w/ him (even not for sex) made him shut down bc he was afraid I'd push for sex. You want to avoid that if you can. Couples counseling is a great tool too for communicating about such a difficult topic. Good luck!

CupcakeAly6 karma

*Hi there! I’m ranspazzo’s marrow donor actually so I can answer some of these questions for you. As she said and as you can see, we were allowed to contact each other. We were allowed to ‘contact’ each other anonymously right away, meaning we could write each other but we couldn’t identify our location, name, etc. that could be used to contact each other outside the program. Ranspazzo sent me a very sweet thank you letter and replied in a holiday card and sent a Giant Microbe stem cell too (I thought it was clever). The program also updates you occasionally with your recipient’s health status.

*After 1 year, you can swap contact info if both parties are interested. If one is and one isn’t, no info for either. I work at a Blood Center with an NMDP (National Marrow Donor Program) branch downstairs so I asked why we had to wait 1 yr. They said it’s to protect both parties; so the donor can’t ask the recipient for compensation, etc. and to also protect the donor from the stress they might experience with constant updates of their recipient’s health status (if they’re not doing well, cranky due to treatment, etc).

*Ranspazzo and I returned our info for swapping ASAP and we’ve been emailing/Facebooking ever since. We haven’t met in person yet but I told her I’d be sending a Save the Date for our wedding in July and hopefully her and her family can come!

*Regarding joining the registry, others mentioned it’s very easy. Go on BeTheMatch.org and request a kit or find a drive and register there. As mentioned, it only requires a buccal swab (of the mouth) and some of your info. It costs the program ~$100 to type you so make sure you’re serious about joining and donate to the cause if you can. After that, the wait is on. I waited for 4 years before getting the notice but some people never get called on.

*Recovery time varies on the type of donation that is done. Most people don’t realize there are 2 ways to donate. The old way that most people picture (a harvest) is when the donor is put under anesthesia and a very large hollow needle is inserted in their hip bones to withdraw the marrow. This is rarely done anymore. The year I donated, only 2 out of 31 donors that year in my state did a harvest. I, of course, was one of them.

*The other form of donation is called a pheresis procedure which works similar to plasma donation (plasma pheresis) when part of the blood is separated and kept and the other part is returned to the donor. In this case, your stem cells (marrow) are collected and the rest is returned to your body. This procedure involves 5 days of injections of G-CSF (granulocyte colony stimulating factor) which forces your bones to produce more marrow. After the last injection, you’re hooked up to a machine with a needle in both arms and the blood is pulled from one arm, stem cells separated in the machine, and all other blood parts are returned to the other arm.

*Recovery for pheresis is pretty much instant. I’ve heard you experience flu like symptoms the week that you’re taking the G-CSF but once you donate, you feel MUCH better, and you could go back to work afterwards if you really want.

*Recovery for a harvest is a few days. After the ‘surgery’ you recover in the hospital for a few hours and then go home. For the next 2-3 days you’re sore (like you took a spill on the ice and now you’re achy) and might walk a little funny and take it easy. After that you’re pretty much back to normal. I lucked out and my procedure was the week of Thanksgiving so I had extra days off because of the holiday anyway. It took about 2 weeks to return to my workouts at full intensity.

*I want to really emphasize how very little pain you endure for this procedure. Most people think you’re awake for the harvest and you’re not; you’re out the whole time. Like I mentioned, you mostly feel achy; I had pain meds and took 2 of them before deciding I didn’t really need them. The biggest issue I had after donating was actually due to the side effects of any procedure involving anesthesia. My throat was sore from the breathing tube (lozenges help!) and I experienced constipation like I’ve never experienced in my life (start taking laxatives right away and you’ll be fine). Besides those small things though, it was no big deal. In some cases, stubbing your toe is worse; more intense pain even though it's not as prolonged. I'd do it again in a heartbeat.

CupcakeAly5 karma

Hi there. I responded to tande75's question above with the answer to most of this. Some of the other details leading up to the donation that I didn't cover:

*I was first contacted via email. They also send a letter and they'll call, but I replied quickly to the email so that wasn't necessary.

*1st contact: Inform them whether you're still willing to donate and answer some basic health questions. Usually multiple possible donors at this point.

*2nd contact: Fill out a questionnaire with more detailed health questions and get a few tubes of blood drawn for confirmatory testing. Usually multiple possible donors at this point.

*3rd contact: Usually the only possible donor at this point. Informational mtg with an MD to discuss procedure details and risks. You find out the type of donation (harvest or pheresis/PBSC) at this point. You decide whether you want to do the procedure and sign a doc saying you're committing to do it. You can still back out after this, but your signature says you know you're putting the patient at risk backing out after this point (they'd have to start the process over and don't have a lot of time to do so).

*4th contact: Do a physical & get more blood tubes drawn.

*5th & 6th contact: Donate a unit of blood on both occasions (w/in ~2 weeks). This blood will be given back to you after the surgery instead of having to get blood from a random donor.

*7th contact: Meet with the surgeon to discuss details.

*8th contact: Donation day! Got to hosp ~8am, draw a few more tubes of blood, get IV, go under anesthesia, draw out marrow, go to recovery, get blood from 5th & 6th contact transferred back, recover in hosp room until ~4pm, have my fiance drive me home!

CupcakeAly4 karma

I was a donor too and like Ogroat said it's just soreness. Most people think of a bone marrow biopsy (when the patient is awake) when they think of marrow donation. You're under complete general anesthesia when you do it so you feel nothing when it's happening and just soreness for a few days. For me the worst part was sore throat from being intubated during the procedure and the gastrointestinal effects of the anesthesia (constipation, but if you take laxatives right away you'll be fine). I hope you get signed up!

CupcakeAly3 karma

I'm sorry you had to go through that. That's pretty traumatizing. I'm OP's donor and I can tell you my experience was a little rocky at first but was mostly smooth. I signed up for the registry in IA but moved to WI a few years ago. The IA office was the one to call me and work with me at first.

*They wanted me to get my confirmatory tubes of blood drawn at a nearby hospital. However, I work at a blood center with a blood donor center downstairs and could easily have them draw me while at work. She resisted at first but finally relented.

*Further into the process she discussed my donation would be back in IA at a hosp/univ ~30 min from my hometown. I told her there should be no reason I couldn't do the donation in WI (OP is located in NJ) and work with the NMDP office located downstairs at my job. She resisted this quite a bit until I finally discussed it with them downstairs and they helped me get 'transferred' to work with the WI program. I don't know if she had some sort of alternate motive for keeping me as part of the IA program but it really felt like it and she was pretty rude about it.

*When I got my physical, they forgot to run pregnancy testing and I had to go back a few days later to get the tube redrawn which was kind of frustrating.

Besides those things though, pretty much everything else was smooth. I made sure to notify the program about the initial lady I dealt with though to make sure someone did something about it. I hope you did the same for the people you dealt with. I hope you decided to stay on the registry despite those issues, and if you get the chance again that things will run more smoothly!