Your tips as I prepare for first phlebotomy

Posted by raremiracle2 @raremiracle2, Feb 6, 2023

Feb 9, first phlebolotomy (iron is low)
Polycythemia Vera and Myelofibrosis - any helpful tips. I have problem with dehydration, (as teenager, I was hospitalized for dehydration - I can dehydrated in hours what most people do in days) . Everything is high but low iron (anemia) from cancer RBC 7.1 Hem. 17.5 but MCV 73.5 MCH 24.2 my MCHC normal 32.6
(Phlebolotomy) this could lead to more anemia (They haven't told me about blood transfusion yet. Listen to stories where anemia is so low and needed blood transfusion MCV reaches 69. Anyway, What are your thoughts and tips?

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Hi @raremiracle2, great questions to ask as you prepare to have your first phlebotomy this week. I'm tagging fellow members like @brooks7987 @yitz @guptaguma @shaha75 @randles14 @pamdg @kat101 @dhcarter @tigerlily16 @charliebriggs1godforall @chadknudson @lostinaustin who have been treated with phlebotomy.

@buckaroobanzai also gathered tips in this related discussion that you may be interested in, including about hydration:
- Weak After Phlebotomy to Treat Polycythemia: How to Improve Recovery? https://connect.mayoclinic.org/discussion/weak-after-phlebotomy/

Raremiracle (love the username), what further questions do you have as you prepare for your appointment tomorrow?

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Thank you! Colleen Young, Connect Director very helpful tips, didn't even think of saltine cracker - only think about drinking, drinking, drinking Gatorade and protein drinks. Thanks for tags, information and helpful tips. Nice to be in a group we can share and hear about each other's journey! Awesome support team is such a powerful tool of knowledge, learning skills we didn't know we had. Getting ready for tomorrow, let you know how it goes ..... ..... to be continued

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@colleenyoung

Hi @raremiracle2, great questions to ask as you prepare to have your first phlebotomy this week. I'm tagging fellow members like @brooks7987 @yitz @guptaguma @shaha75 @randles14 @pamdg @kat101 @dhcarter @tigerlily16 @charliebriggs1godforall @chadknudson @lostinaustin who have been treated with phlebotomy.

@buckaroobanzai also gathered tips in this related discussion that you may be interested in, including about hydration:
- Weak After Phlebotomy to Treat Polycythemia: How to Improve Recovery? https://connect.mayoclinic.org/discussion/weak-after-phlebotomy/

Raremiracle (love the username), what further questions do you have as you prepare for your appointment tomorrow?

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Hi @raremiracle2, I had 1st phlebotomy in 2021 and this year second time. My history started as I was always having iron deficiency with high hemoglobin and started taking iron medicine for more than 4 months in 2021and suddenly had long monthly period than usual and decided to visit my gynecologist. She asked me for some tests and suddenly after looking at my blood test and referred me to hematologist. Until now I do not know if I have polycythemia vera or not. recently I did my second phlebotomy after again getting iron medicine. My iron is always gets low and I am obliged to take iron medicine. I asked biopsy of bone marrow but insurance will refuse because my RBC is not on the high range after phlebotomy . I am confused and would like to know exactly what is bothering me. I have depression and swing mood all the time.

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shaha75 Thank you! You thoughts are much appreciated and insights. When I had cellulitis/ sepsis for the month of Nov. 2020 (landed in hospital) I had the same numbers - white blood cell out was 27.? - 24.? and sent me home 11.? Every day my Neighbor had packing and put new packing inside my back (surgery from infection as lone as my arm; in my back until it healed for 2 months. My numbers- and everything was 3 double and triple then it should be. Hospital missed the high number: blaming my infection. 2x hospitalized with same numbers and cellulitis in my foot sept 22-30. Hospital got smarted and hired hematologist, told me I have PV in 2020 and hospital missed it, Doctors blamed my sepsis and infection. He told me I had cancer; didn't believe him and when I got home, yes PV is cancer. I get my first phlebotomy today. Thanks for your prayers... nice to know "we are connected" going though this mystery together. Took gummy iron but switched to prenatal with extra iron; see what happens (thank you my friend will keep you up-dated

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I had 4 phlebotomies( 1 per week) shortly after being diagnosed in April 2021… My HCT was very high which was the main focus at that time… I was told to be well hydrated before going in for the phlebotomies… I had never had one before this and it took some time to get the unit of blood the first time.. So I was sure to drink plenty of water before the balance of the procedures were done.. One other tip… bring headphones/EarPods, etc, anything that you have that will allow you to listen to your favorite music while you are going thru the process… This helped me get thru this very easily.. Hope this helps…

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@raremiracle2

shaha75 Thank you! You thoughts are much appreciated and insights. When I had cellulitis/ sepsis for the month of Nov. 2020 (landed in hospital) I had the same numbers - white blood cell out was 27.? - 24.? and sent me home 11.? Every day my Neighbor had packing and put new packing inside my back (surgery from infection as lone as my arm; in my back until it healed for 2 months. My numbers- and everything was 3 double and triple then it should be. Hospital missed the high number: blaming my infection. 2x hospitalized with same numbers and cellulitis in my foot sept 22-30. Hospital got smarted and hired hematologist, told me I have PV in 2020 and hospital missed it, Doctors blamed my sepsis and infection. He told me I had cancer; didn't believe him and when I got home, yes PV is cancer. I get my first phlebotomy today. Thanks for your prayers... nice to know "we are connected" going though this mystery together. Took gummy iron but switched to prenatal with extra iron; see what happens (thank you my friend will keep you up-dated

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raremiracle2 Thanks for sharing your experience. It is so sad. I passed through it the same way. It was shock for me and until now I cannot believe that I have cancer. We have to heal our traumas and find out what is triggering our body. Psychosomatic condition, I believe. They say there is no cure for PV instead I can tell you there is cure for everything. We have to believe and God is capable for everything. Just work on ur traumas and find out what was bothering you from ur childhood. I started studying spiritual phycology and will work on my and other`s traumas and wish to hel everyone who needs. this desease is given for some reason and we have just to find it. If anybody needs I can start my free sessions on spiritual psychology to help to find the reason and heal yourself. In addition, kindly try to find and read Colin Tipping`s "Radical forgiveness", it is a book. You will love that.
May God bless us all!!!
Keep in touch my dear friend.

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I had to do phlebotomy for half a year due to high iron because of many transfusions. I would always come in hydrated and then asked for half a bag of saline infusion before the phlebotomy and the other half after. I was living on my own and didn’t want to pass out driving back.

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shaha75 and dale1k and alive | @alive THANK YOU! THANK YOU! Yes I believe in spiritual healing as well, prayers and good doctors. Need to check out that book. Dalelk; (4 phlebotomy are lot) in one week and my nurse stay with me the whole time (talked for 15 mins after-words) saw the doctor for 2min and asked me how I was after it was done. I was level 10 on fatigue and after my phlebotomy; fatigue is 3 WOW! can't believe it made that much differences! Some one said it's like car tune up. Yes, saltine cracker and Pedialyte made a difference. (Drank gallon of juices every day for 3 days and told me to do that 3 days after) Lucky. my friends drive me 45 mins. because most hematologist will not except me; several rare diseases and now cancer. I would struggle on my own, there are days when pain level is 10. I wish I had insurances for Mayo Clinic. Great to hear everyone stories and their experiences (Phlebotomy next month in March 21st) I feel so much better after taking almost letter out! WOW! Good luck and prayers you guys; hope you find answers soon

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@raremiracle2

shaha75 and dale1k and alive | @alive THANK YOU! THANK YOU! Yes I believe in spiritual healing as well, prayers and good doctors. Need to check out that book. Dalelk; (4 phlebotomy are lot) in one week and my nurse stay with me the whole time (talked for 15 mins after-words) saw the doctor for 2min and asked me how I was after it was done. I was level 10 on fatigue and after my phlebotomy; fatigue is 3 WOW! can't believe it made that much differences! Some one said it's like car tune up. Yes, saltine cracker and Pedialyte made a difference. (Drank gallon of juices every day for 3 days and told me to do that 3 days after) Lucky. my friends drive me 45 mins. because most hematologist will not except me; several rare diseases and now cancer. I would struggle on my own, there are days when pain level is 10. I wish I had insurances for Mayo Clinic. Great to hear everyone stories and their experiences (Phlebotomy next month in March 21st) I feel so much better after taking almost letter out! WOW! Good luck and prayers you guys; hope you find answers soon

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Glad you made it thru.. The first time is usually the most difficult… In my case, they offered me choice of fruit juice immediately after I was done and then watched me for 15 minutes before giving me the okay to leave… Just to clarify.. I had 1 phlebotomy per week, not 4 in one week.. Best to you…

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@dale1k

Glad you made it thru.. The first time is usually the most difficult… In my case, they offered me choice of fruit juice immediately after I was done and then watched me for 15 minutes before giving me the okay to leave… Just to clarify.. I had 1 phlebotomy per week, not 4 in one week.. Best to you…

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How long did it take to take your blood out.Mine takes about 1 hr for 500 bag.

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