Getting blood for the first time

[Data]

I saw my hematologist / oncologist today and my WBCs and Hb are slowing declining. She scheduled me to get two units of blood on Thursday. This will be a first for me. Any suggestions on what to expect? She also scheduled another bone marrow biopsy in a week. The last one she did was almost a year ago. Oh, and they increased my Procrit to 20,000 units twice a week.

Thanks for any input!!

Data

[traceyn11]

Hi Data,
Sorry your wbc and Hb are declining. I have only had one transfusion and that was while I was in the hospital. It went fine. I actually felt a lot better afterwards. Sending prayers and positive thoughts your way.

[mitch]

Hi, the blood transfusion should not be a big deal and should make you feel better. I just had my 10th one last Friday because my Hgb was so low. Each unit (bag) of blood takes about 3 - 3.5 hours via the IV so you'll be there about 7 - 8 hours. Mine are done in a hospital room and they bring you breakfast and lunch while you're there. Take a book or a magazine or your iPad with you. You'll go home after you're done, but it may take a day or two to feel the effects of increased blood counts. Prayers for you that it lasts awhile and good luck on your biopsy.

Mitch

[Data]

Originally Posted by traceyn11

Hi Data,
Sorry your wbc and Hb are declining. I have only had one transfusion and that was while I was in the hospital. It went fine. I actually felt a lot better afterwards. Sending prayers and positive thoughts your way.

Tracy,
Thanks for the info. I am really hoping it helps.

From everything I have read they always say this MDS is an old person's disease. Well we know that isn't true. Sure hope your SCT goes well.

Cheers

Data

[vickij]

I have had about 15 blood transfusions. Each unit will take 2-3 hours depending on how fast they put it in. They will monitor your blood pressure & temp. often. I always felt better & had more energy by the 2 nd. day. Prayers for a good report on your BMB.

[Data]

Originally Posted by mitch

Hi, the blood transfusion should not be a big deal and should make you feel better. I just had my 10th one last Friday because my Hgb was so low. Each unit (bag) of blood takes about 3 - 3.5 hours via the IV so you'll be there about 7 - 8 hours. Mine are done in a hospital room and they bring you breakfast and lunch while you're there. Take a book or a magazine or your iPad with you. You'll go home after you're done, but it may take a day or two to feel the effects of increased blood counts. Prayers for you that it lasts awhile and good luck on your biopsy.

Mitch

Mitch,
Thanks for the advice. I never suspected it would take that long! I guess it takes longer to get blood than to give it. I have a book I am going to take (on blood disorders) and I put some music on my phone.

Thanks again for the info and good luck in your travels.

Cheers

Data

[Data]

Originally Posted by vickij

I have had about 15 blood transfusions. Each unit will take 2-3 hours depending on how fast they put it in. They will monitor your blood pressure & temp. often. I always felt better & had more energy by the 2 nd. day. Prayers for a good report on your BMB.

Vicki,
Thanks!! I don't mind it taking a while but I am glad I know now how long it will take. My wife is going with me and she is a diabetic and can't go too long without eating so she better take a snack.

It doesn't seem fair to get AA and then MDS too but I guess no one ever told "life" about fairness Good luck!!!

Cheers

Data

[Cheryl C]

Hi Data - sorry to read that your Hb and WCC counts are decreasing. I can imagine your concern.

How long have you been on W&W now? It's a bit like having the 'sword of Damocles' hanging over one's head isn't it.

I like to do Sudoku while having IgG 4-weekly - it seems to make the time (around 2.5 hours) go quickly. My life has been so busy this year that I actually look forward to the opportunity to just sit quietly for a little while! Once the cannula goes in it's comfortable. Where I go the nurses rarely miss getting it in on the first try. I hope you find the same and that the transfusions really give you a boost.

[Data]

Originally Posted by Cheryl C

Hi Data - sorry to read that your Hb and WCC counts are decreasing. I can imagine your concern.

How long have you been on W&W now? It's a bit like having the 'sword of Damocles' hanging over one's head isn't it.

I like to do Sudoku while having IgG 4-weekly - it seems to make the time (around 2.5 hours) go quickly. My life has been so busy this year that I actually look forward to the opportunity to just sit quietly for a little while! Once the cannula goes in it's comfortable. Where I go the nurses rarely miss getting it in on the first try. I hope you find the same and that the transfusions really give you a boost.

Cheryl ,
I have to admit I had to Google cannula. Is it about the same size as the ones they use for an IV? I've had lots of IVs. I have been on Watch and Wait (and Worry) since I was diagnosed almost a year ago. The only treatment I have had so far is the Procrit and it hasn't been very helpful.

Thanks for the reply. Hope you continue to do well.

Cheers

David

[Chirley]

Hi, sorry to hijack this thread. Cheryl, I was wondering how you found out about the IgG. I just got a copy of some blood tests and for a long time back....years....it shows low globulins. This has never been mentioned to me.

I've had all treatment withdrawn due to my dire medical condition. This decision was made by the medical team...not by me. I have no further options left.

[Faye R]

Hi Data
I survived on blood transfusions for years, until Vidaza came along they are no big deal except that you are there for 4 to 6 hours depending on how many units you are having, they put a warm bag on your hand and warm up your veins and there you sit that's it. Take a book music something to keep yourself amused just in case there is no one around you to talk too. You do feel a lot better afterwards.
DX RAEB-2

[Cheryl C]

Hi Data - Yes, a cannula is normally used to deliver IV fluids so it will be very similar. The size can depend on the thickness or viscosity of what you are having, and can also depend on the state of your veins, and whether the hospital's protocol is fixed or flexible.

Where I am now there's a standard size for delivery of Intragam (blue), but I've been to other hospitals where they've used a yellow (child size) one as I have no fat on my hands which means that my veins which are prominent, tend to roll. I'm not sure whether it's the same size for red blood.

All the best! Please let us know how you get on.

[Cheryl C]

Chirley - I'm so sorry that you've had to cease treatment. I assume that is because the neupogen continued to be ineffective? If so that must be a devastating blow for you. How are you feeling?

My low globulins were only officially noted at the time I was diagnosed with MDS in 2011 and that's when treatment began. However yesterday I was checking my CBC results away back to Dec 2002 to do some comparisons, and lo and behold it my globulins were low way back then and had continued to be low over the intervening years. Makes me wonder if that contributed to my diminishing WCC and eventually MDS.

Have you had your serum immunoglobulins done? That gives a breakdown of the different types of globulins and shows which are low. In my case it's IgG which is low (not IgA or IgM). See if you can get them checked if you haven't already. My wellbeing improved a lot from within about 24 hours of the first dose. Now I don't get a noticeable boost, but I know it's working because I hardly get any infections. I did try a 3 month break a couple of years ago but began to feel unwell and to struggle with infections again at around 6-7 weeks and sure enough my IgG had dropped back below normal.

Hope this helps. You are a good advocate for yourself so see what you can do!

[Chirley]

Thanks Cheryl. No they just stopped the Neupogen on discharge. It was still effective. My GP gave me a blood test request which I'm having done tomorrow and I'm insisting that the results will be seen by my private consultant and not the public hospital docs who discharged me with no treatment.

[Data]

I wanted to thank everyone for the comments and information and also let you know how it went.

As those of you who have had blood transfusions probably suspect it was uneventful. The "infusion room" was a large room with about 20 recliners. The two folks on each side of me were getting chemo. I couldn't tell what everyone else was getting but I suspect it was chemo. They gave me two units on leukocyte reduced, irradiated packed red blood cells. The first one was set to infuse a little fast and it was uncomfortable. The nurse slowed the second one down and it was fine. The nurse that put the cannula in was a pro - didn't hurt a bit. I was there from a little before 8:00 AM till a little before 2:00 PM. My wife had been prepared to go get me something to eat but they brought us box lunches.

Thanks again!

Data

[Cheryl C]

Are you feeling better now, Data?

[Data]

Originally Posted by Cheryl C

Are you feeling better now, Data?

Cheryl,
I am just amazed! I haven't felt this good for a long time. I am not going to be running any marathons but I did do some housework today and went for a walk with my wife. I have been on Procrit and it has brought my Hb up but it never affected the way I felt. I hope this lasts for a while!!

Thanks for asking!!!

Data

[traceyn11]

Yay! So glad the transfusions were uneventful and that you are feeling much better!

[Cheryl C]

That's wonderful news Data.