blood donating

[jc3]

i was planning on donating blood so my daughter wouldn't have to do it, but i called the drs office today to ask them about it the nurse said that since only 1 unit will be needed that she should do it. She said it is much better for them if they have their own blood.
just wondering if anyone had their blood donated for them?
thanks
jennifer

[Jules]

Hi
When I had my operation I wasn't asked if I or any of my family wanted to donate blood for me, but it could be different because I live in England. If I had had the choice I would have like either my own blood or my family's blood
Love Jules xxxxxxxx

[Carmell]

Hi Jennifer,

When Braydon had his fusion surgery, he was only 11 months old. A friend did a direct donation, which Braydon needed to use. He didn't need a full unit, but it was nice to know the blood was there if/when we needed it.

They like to have the patient's own blood because it obviously is a perfect match. However, they will use blood bank blood if she can't donate, and you don't have a family or friend donate on her behalf. Each hosiptal has different rules so check with them about direct donation.

[spincon58]

My blood was reinfused in my body by the filtering method. I wasn;t able to have my own blood b/c of anemia...so my brotherinlaw gave one unit..I do not believe they used it..

[jc3]

hi connie,
what does that mean your blood was reinfused and then filtered because when i spoke to the nurse about me donating instead she said something about that also. I really didn't understand what she was talking about and she also said that it's about $300 to donate blood. I couldn't believe that, i didn't know it costs that much money to donate blood. Anyway, i haven't told my daughter that she has to do it she is not going to be happy. She hates needles but they did say it was better for her so she i guess should do it. At least it is only one unit.
how are you feeling. I haven't heard from you in a while. e-mail me and tell me what is going on with you.
jennifer

[Carmell]

Just another side-note, Jennifer... The blood may not be immediately required. She may be able to have reinfused blood DURING the surgery, but sometimes patients need a boost of blood transfusion one or two days (or maybe more) post-op. When Braydon was an infant and had his anterior/posterior fusion surgery, the blood loss in the operating room was calculated to be 60 ccs. Very minimal. However, 2 days later in PICU, his blood counts were just not coming back to normal as quickly as they'd like. They transfused the 60 ccs, and within a half a day, he was like a completely different child. I can imagine 60 ccs for an infant would be similar to part of a full-unit for a teenager/adult. I think your daughter will be just fine. Keep us posted.

[SandyC]

jC3,
While I'm an adult, it is about the same, whether you are an older child or an adult when it comes to giving blood. I gave my own (autologos) and my husband and eldest son also gave for me. Also not only is it better that your daughter give her own you may not be compatible, even though you are her mom. Her father may have to donate instead.

The "machine" the other posts are talking about use your daughters own blood that she loses during surgery. A small suction tube pulls the blood away from the incision site where the surgeon is working, filters it and then returns it via IV back to the body.
SandyC

[susannajon]

Hi Jennifer,

When I had surgery a couple of years ago, the doctor explained that my own blood would be best because:

1) No chance of a reaction because it's me

2) It only takes a few minutes and doesn't hurt any more than plucking your eyebrows

3) Less stress on my body and no chance of an infection or an introduced virus, such as CMV (when you are weak from surgery already, a viral bug that is harmless to the donor and carried by them might be a challenge for the recipient (me).

It was a no brainer for me. I donated 1 unit, and my mom and sister who are perfect matches and CMV free donated for me as well. I only ended up using my own blood.

Your daughter will be better off if she donates her own. She's going to have so many tests in preparation for surgery. Don't stress yourself out about blood donation. It is not a painful thing (a tiny stick and a sting). Maybe she (and you) will become blood donors for the Red Cross after this experience. My family and I do it every 90 days now that we know how little it hurts, and how much good it can do for sick people.

[jc3]

thanks susannajon
thanks so much, your post definitely made me feel better and more and more i am realizing that her donating is for the best, so she will be doing it. I am going to call either today or monday to make the appointment and she will get through it.
thanks again
jennifer

[jc3]

hi sandy c.
for some reason yesterday i didn't see your reply to me, sorry about that. Thank you for writing. I was trying to find out if my husband or myself were compatible with her blood type. I had called the hospital where she was born, but they only had my blood type on record there. I don't know why they didn't have hers for some reason. Anyway, it doesn't matter now because they want her to donate her own. Now i understand what the drs. office was saying about them using her blood during surgery. Thanks for helping it make sense to me. I can't wait until this whole thing is over!
thanks
jennifer

[spincon58]

Hi,
I canb't believe that they charge for donationing your own blood...definitely something is not right there...Linda, do you know the exact name of the proceedure that refilters your own blood during surgery>?

[jc3]

connie
didn't you have to donate blood and i know neuwirth doesn't take insurance either if i'm correct, did you have to pay?? Because boachie doesn't take any insurance, which means since he doesn't take insurance either will hosp. for special surgery accept my insurance, so i assume all the pretests (mri, pulmonologist, etc) i will have to pay.

jennifer

[spincon58]

Jenn,
I answer your question through the private messages...make a deal before surgery ,,that includes anathesaologist,dr.hospital.and others U expect to charge you.

[jc3]

connie
sorry, one other question, what do i do call the anesteologist and say what to them and what about mri, etc...

thanks
jennifer

[spincon58]

Jennifer,

MRI, xrays and all testings are done in the hospital and are charge accordingly through the hospital.I called the hospital I was having surgery in and asked if I had a choice of anesthesolgist..They said No, we only have one group that does all the surgeries in the hospital..after explaining that they are not in my insurence plan, I spoke to the main person in charge and they honored whatever my insurence payed out...if I did not make that call ahead of time, I would have to had pay out a very large sum of money. Do everything in advance, do not assume anything..write down who you spoke to and when..get names..for everything you do...b/c after surgery you just want to help your daughter through the emotional struggle with the surgery, and you won't have time to remember who said what...

[mamakay]

Hello All,Connie and Jennifer,

I haven't been on the board for a while, I'm getting freaked out with my daughters surgery coming up so soon and trying to get my house ready. (getting a bed set up downstairs,packing suitcases frontbutton downshirts, pillows for car,dog sitter, blood donating options that are getting scarce, school tutoring).
God I'm already a basket case.
My husband seems so calm, that doesn't help either.

Connie,
What pulmonary problem did I see you have had? That sounds like it was very serious and I just wondered what,how and the symptoms I should be on the lookout for.
Jennifer,
Ithink last we were talking it was about the blood.
I am waiting to see if I can donate(a medical issue may have arisen to keep me from donating, I will know more this week.)
How long can they keep the own patience's blood does anyone know? (3 days?) I know for another person it is 2 weeks.
The Dr. office acted like we would need at lead 2 units, and the person doing the scheduling said he thinks her weight of 102lbs would make her too weak for surgery.
I didn't realize that even a family member's blood could be accepted differently by her. That's upsetting bc I don't think they want her to give her blood.
I will have to ask about the machine that filters the blood Connie mentioned.
Sorry if this is too private..
Does your ins. not cover this surgery?
I understood if the Dr office set this operation up then it was covered!
I guess I better start making some phone calls to make sure. I'm sure this is costly and we have not been paying ins. to find out I missed something and will have to pay for all of it.
There's already enough to worry about.
What kind of tests should we expect at the preop?
Is this the day visit not THE surgery day?
I know I can call the SCHEDULER!!! but i feel like I'm not getting the attention and explanation I need, I know they are doing this every day and don't realize I want to know every detail BEFORE we get there. I don't like surprises like this scoliosis was to me!
I'm so sorry this is so long but I want everyone to know I am thinking of them and thankyou to those who answer and help.
God Bless, Kay..

[jc3]

thanks connie
i guess i should try and do that with the anestiologist. I feel kind of weird doing that. How do i find out who the anestiologist will be??
I am getting so nervous.
Did you watch the discovery channel last night on extreme surgery they had two scoliosis surgeries performed.
keep in touch and you never tell me how you are doing, i am reading that you have been having some problems.
write soon
jennifer

[jc3]

Hi Mamakay,
I don't know how long they keep the patient's own blood. I know on my sheet it said that it can not be done more than 34 days prior to the surgery (or something like that). I'm not sure if you read, but the dr. does not want anyone else to donate for her. To answer your question about the insurance. The surgeon that we chose to do the surgey does not accept any insurance. :(
When do you have the pre op tests?? Nicole's are Oct. 11th and they include pulmonologist, cardiologist for an echo cardiogram, ekg and she has an mri and i forget what else. She doesn't even know about all this yet. I too am getting so stressed out. I have to get some stuff together for the hospital, slippers, pjs (i guess the ones with the shirts that button in the front are best??) and i don't know really what else i will need.
Keep me posted on what is going on
Jennifer

[jc3]

I know i posted earlier in the day, but i just wanted to let you all know that i called and made the appointment for the blood donating for my daughter. It wasn't easy to do, everyday i kept saying to myself i'll call tomorrow and i finally did it. I also went up the her school and gave them the paperwork from the dr. requesting a tutor. The dr. put the date of Nov. 15, which is two weeks after the surgery for it to start.
jennifer

[mamakay]

Jennifer,
Thanks for replying. Yes I read they want nichole to give her own blood. That is a good thing that they will let her give it. May I ask how soon she will do this. I wish they would let my Steph donate hers now that I read the pros and cons. here.
Maybe you can donate just for the bank that way she won't feel like she's alone , sorry for the unasked advice.
I salute you for getting the appt. made bc I too have avoided some of these phone calls.
Our preop is Oct 21st. I MUST call and see what they expect to do.
On that day they plan on us donating or else I guess the alternative is the blood bank if I don't have someone there to match her. Almost everyone in my family has a medical reason they can't give blood to her.(skin cancers,daily medicines,etc) this is bad.I'm waitting on results to see if even I can match her.
This is very confusing for me bc we are in a city 2.5 hrs away and I guess we're suppose to go to the blood bank here and get tested first??!!
Is the plan for Nichole to stay out of school untill after the school holidays? That's mine.
Well I am so ready to be done with this too and everyday pray we all have the strength to get thru it. I am hoping I don't cry in front of her,that will be VERYVERYVERY hard too.
Keep in touch and let me know how the donating went and preop tests...................Kay
P.S. Are you planning on staying in her room?
I guess we'll find out about that on preop day.
oh my gosh I'm so mad I missed the surgery on tv you mentioned! Was there any thing we haven't covered on it? Was it succesful? Did they say what type rods were better?

[mamakay]

Jennifer, , no need to reply about the tv show I just read the post on the surgery you wrote.
That is a very scary thing and my daughter is so afraid about the paralysis part.
Thanks Linda for easing our mind about the hipes of tv rateings, but the truth can't hide.
It is so hard to be positive but I know we have to be.

[jc3]

hi mamakay
why wont they let steph donate? Nicole's donating will be done on a different day then her pre opt tests. On the day of the pre-op tests. Our hospital is about 45 min. away and when i called for th donating they gave me a choice of two places not far from my house. I hope i don't cry in front of nicole either, but i don't know if i will be able not too after she comes out of the surgery. It will be VERY hard not too. The dr. sent a letter to me to give to the school saying how long she would be out and when the tutoring should start and in the letter it said 4 weeks so according to that she would be going back to school before winter break, which is at the end of december, but i do not know if she will be ready to go back that early and it would be fine for her to stay home until after the break. It all depends on her. The school did say that in the beginning when she is feeling up to it she can go back for half days, which sounds like a good idea. I am definitely planning on staying in the room with her, so i guess i will have to pack things for myself as well. My parents live in florida and will be coming in to say with my two younger ones. I have a 10 year old and a 7 year old. I can't believe i caught that t.v. show, i almost had nicole watch it and i'm glad i didn't, but yes both surgeries were a sucess and they showed them three months post op and they were doing great. They did not say which type of rods were better and i'm not sure which they used. But it was a little scary on one of the surgeries the machine that monitors the spinal cord malfunctioned in the middle of the surgery. I can't imagine! Anyway sorry this is so long.
please keep in touch
jennifer

[Bill's mom]

Jennifer,

Just wanted to let you know that my son who is also having surgery on Nov. 3rd (just in case you didn't remember me) gave a unit of blood yesterday. He is terrified of needles and we weren't sure that he had any blood to spare but he did great. Closed his eyes so he didn't see the needle and really didn't flinch much when she inserted it. The donation itself was very uneventful and we chatted the entire time. He felt fine after the donation and was just a little sluggish during the late afternoon.

So, try not to worry...

Susan

[jc3]

hi susan
sure i remember you. I was wondering where you've been. thanks for making me feel better about your son's blood donating. i definitely feel much better now. I still haven't told her that she'll be doing this and monday we go for all her pretests. I made her blood donating appt. for 5:00 figuring if she was tired after she can just relax and maybe go to sleep early that night. How are you doing and how are things going? It is coming up very quickly their surgeries. Did you watch that show on the discovery channel called extreme surgery where they showed an actual scoliosis surgery performed?
write when you get a chance
jennifer

[Bill's mom]

Jennifer,

I did not watch the show. I didn’t know about it, but I don’t think I would have watched it. Too much info before the fact. Probably will try and watch it sometime after the surgery.

As far as how things are going -

In addition to giving blood on Monday, we had what turned out to be our last pre-op appointments with the surgeon and the pulmonologist. (Bill has asthma.)

The pulmonologist gave her ok for him to have the surgery.

The surgeon took another set of x-rays (since he hadn’t taken any since July) and we were all surprised that the curve has increased 10 degrees. Because of that increase, he also took another set of bending x-rays. (He also mentioned that he may request a CAT scan prior to surgery, but his office would let us know if he decided he needed that.) I asked if he wanted to see Bill again before surgery and he said only if we wanted to.

We talked about the bone for fusion again and have decided to use donor bone for the fusion. Bill’s fusion will be so long (T3 to L3) so it makes the most sense.

Assuming everything goes according to plan, Bill will donate a second unit of blood in a couple of weeks and a few days before surgery will have blood work done to make sure he is healthy. Then we'll show up at the hospital the day of surgery. Hard to believe. I said to Bill on Sunday that we were really on the countdown now with it being one month away and he said that we weren’t on the countdown until the week of the surgery!

One last thing that we have done that I would highly recommend…

I asked the doctor for names of some of his patients so we could speak to them. Bill decided he didn’t want to speak to the kids who had the surgery (no surprise there) but I did speak with the moms. It was very helpful to talk to them about the surgery, about the hospital, about the doctor.

(I think - but I could be wrong - that you mentioned that your parents were coming up from Florida for the surgery. Hope they have managed to escape the wrath of all those hurricanes.)

Guess I'll get to work so I can pay for this surgery!

Talk to you later,
Susan

***

P.S. to Mamakay.
Your post about your husband being calm made me laugh. I guess they figure since we're so worried there's no need for them to. Take comfort in knowing that I can fully relate!

[mumof5]

I wouldn't worry too much if Nicole doesn't donate her own blood. We weren't given the option for that for Amber's surgery. She ended needing 2 units and they used what they call 'packed cells'. She was fine, is fine.
It is very hard to not want to control every aspect of this but you have to trust your doctors and believe that they 'know what they are doing'. Maybe they should have counselling for the parents, it is so easy to overload with stress. Information is good, but I think sometimes we can get too much and it makes your head spin. That's when we need to step back and say 'well most of this is out of my hands anyway'. I know we have been through the surgery, so it seems easy to say, but that was the approach I tried to take.
Try to do some family things to take your minds off the upcoming surgeries, try not to let the worry take over.
My husband died 10yrs ago leaving me with 4 very small children. That experience has taught me that you have to enjoy the here and now, don't let stress get to you. You can't control what is going to happen. I could get up from here and fall down the stairs and break my neck, but it won't stop me going down there.
The doctors are experienced they will help your children become stronger individuals. Trust them and try to be strong.
Best wishes.
Cheryl.

[jc3]

mum of 5
thank you for your kind words and i am very sorry to hear about the loss of your husband. You must be very strong. How old are your children?
jennifer

[mumof5]

Hi Jennifer,
I'm glad if something I say can help someone else. Sometimes I look back at things and think maybe that was a bit harsh, but that's the type of person I am.
My children, all girls, are: Amber (surgery) 15, Jordan 14 1/2, Gabrielle 12, Isabel 10. Their father died in May 1994 (in front of all of us). I was 23 when he died and Isabel was 10 weeks old. I meet someone else who I was with on and off for almost 5 years (over 6 1/2 years). He left when I was 6 months pregnant with Shayleigh who is now almost 4.
I don't feel that I have any other choice but to be strong. If I wasn't my kids wouldn't have what they need.
I have always believed that you are not given more than you can cope with, it just depends on the way you look at things. Don't let the worry get to you, it won't help. Of course I have my days where I sit and go 'why me'. But then I give myself a shake and think about others who are worse off. I am alive and reasonably healthy, my kids have had some dramas but they are happy, we have somewhere to live and food to eat, my kids love me, what more could I want.
I would also like to add (though I don't really know why) that I am not religous at all. Alot of people here seem to be.
Best wishes.
Cheryl.