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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Sat Feb 8, 2014, 04:22 PM
Honeybun Honeybun is offline
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Should I have had a transfusion

Hi Everyone

I haven't been in the forums for a while, I have had a terrible time of it lately. I have just gotten better from the DVT and pulmonary embolisms in both lungs from Oct and was in hospital this week with internal bleeding.

Normally my hb is around 100 the lowest it has dropped is 91. On Sunday when I went to hospital it was 103 by Wednesday it dropped to 81. I was discharged on the Friday with a hb of 80 and they didn't think I needed a transfusion, even though I am still bleeding (not as much as before) and have put me back on my blood thinners.

Should I be worried about not having a transfusion under the circumstances?

Thanks

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #2  
Old Sat Feb 8, 2014, 06:41 PM
Chirley Chirley is offline
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Honey, I'd get your GP to order daily blood tests for a week or so and see if the counts are stable or dropping. If they drop, you (or your GP) can contact your haematologist to organise a transfusion.

You should have had some follow up instructions given to you by the hospital/doctor......didn't they give you a discharge letter with follow up instructions?
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  #3  
Old Sat Feb 8, 2014, 06:59 PM
Honeybun Honeybun is offline
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Chirley

The hospital is hopeless! Correction the dr in ER on the third day of presentation was very attentive it was once I was admitted and the drs in ER on day 2. The lack of information given was appalling not to mention the treatments I was subjected to, had me in tears and begging Bjay to take me home everyday I was there. This was the hospital that said my dvt was a staph infection and sent me home without even seeing a doctor in ER and then failed to do a chest xray once my gp sent me back to be admitted.

They are posting my discharge papers out. No meds given. No time off.

I'm going to my gp this morning because I am still in pain and have been up all night.

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #4  
Old Sat Feb 8, 2014, 08:33 PM
Chirley Chirley is offline
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Sounds like my recent experience in a certain private hospital that I won't name. I spent a full week vomiting and being treated like I was just being neurotic before they did a gastroscopy and found out I had a torsion of the stomach.

By the time they found it my abdoman was so swollen I couldn't expand my lungs and I had to be put on 100% oxygen with a non rebreather mask and had to have a feeding tube put in.......not happy!

After another ten days or so I ended up lying and saying that I was drinking and keeping it down just so I could be discharged.

My discharge papers never mentioned anything about the torsion or the feeding tube and my GP has received no correspondence from them.
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  #5  
Old Sun Feb 9, 2014, 05:46 PM
Honeybun Honeybun is offline
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Chirley, I don't think I will get the paperwork either or if I do I doubt it will mention anything about my blood results. I was being looked after by two Dr's that looked like they had just finished high school. I did go see the locum yesterday for some pain relief and he gave me a pathology request form for my bloods and will see my gp today to let him know what has happened.

I was trying to find something on the internet on how fast hb levels start to restore themselves, but could only find info that said 2-3 weeks but didn't give the progress i.e so much per day sort of thing, so I know how long it will take to get my levels back up. Any one know? I assume it is slower with MDS.

Sorry you have been having a rough time too Chirley. We don't seem to have any luck with hospitals do we.

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #6  
Old Sun Feb 9, 2014, 07:00 PM
Chirley Chirley is offline
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I have no problems with my regular hospital and my regular doctor. My GP is pretty good too. Having said that, I keep control of my treatment at all times!

I don't trust either the doctors or the ethos of the public hospital system.

18 months ago the doctors at the local public hospital told me that they weren't going to treat my mother because she wouldn't have any quality of life. I had her transferred to a private hospital (she would have died within days without treatment). It's 18 months later and she is alive and I won't say she is well but she's enjoying her life. The condition they were going to let her die from (heart failure and respiratory failure) was completely cured with treatment.

All I can say is that they didn't want to "waste" resources on my Mum and were willing to lie to my face about her condition to justify their lack of treatment. I now know that doctors can be bald faced lying, unethical b#####ds. I don't trust any of them as far as I can throw them.

I've learnt that you have to be involved in your own care and you have to be assertive.
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  #7  
Old Sun Feb 9, 2014, 11:41 PM
Honeybun Honeybun is offline
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Hi Chirley

I did get Bjay to ring my haemotologist regarding the amount of blood loss so I could get transferred there...much better. However they told him that they were going to do a procedure first to find out the source of the bleed, so my haemo left that to them. They didn't do the procedure, its scheduled for three weeks time.

Hence why I was wondering how long before blood levels start rising. I just had 15 vials of blood drawn, it would also be good to know how much that might make my blood level drop. It was probably about 50mls of blood all up. It would be a good way to see how much blood I actually lost over the few days to drop by 23. Has anyone got any ideas?

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #8  
Old Mon Feb 10, 2014, 03:46 AM
Birgitta-A Birgitta-A is offline
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Txs

Hi Honey,
You know it is impossible to tell you how fast your HGB level will increase after a bleeding. If you manage with a HGB of 80 you don't need a tx - my HGB was 70 at dx and my only symptom was that I got breathless in long stairs.

When we get a tx and the HGB increases our kidneys are told that they don't have to make more EPO, that stimulates the bone marrow to make red blood cells.

We have about 5 l of blood so 50 ml isn't much.

Too bad that it will take three weeks to start to find out the source of the bleed. Have you any treatment for DVT and pulmonary embolisms? All dugs for these symptoms can cause bleedings.

Chirley suggested frequent controls of your HGB. Perhaps your doctors will understand that this is important too.
Kind regards
Birgitta-A
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  #9  
Old Wed Feb 12, 2014, 03:09 PM
Honeybun Honeybun is offline
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Thanks Birgitta

I am on blood thinners at the moment, and thought it was strange the hospital put me back on them when I was in there, as I stopped them when I first noticed the bleeding.

I did see my GP, and he explained the reason for the fall in my results was not necessarily due to the amount of blood lost. He said that when something like what happened to me, water can be drawn in and sort of dilutes the blood resulting in lower numbers. My HB in the few days out of hospital had already risen back to 96, even though I still have minor bleeding. Hard to explain because he used some drawings to explain, but it made so much sense, as I thought I couldn't have lost more blood than say what a person would donate.

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #10  
Old Thu Feb 13, 2014, 05:18 AM
Birgitta-A Birgitta-A is offline
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Bleeding

Hi Honey,
Good that your HGB has increased ! Do you have a gastrointestinal bleeding?
Kind regards
Birgitta-A
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  #11  
Old Thu Feb 13, 2014, 06:24 AM
Honeybun Honeybun is offline
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Thanks Birgitta

Yes it was/still is. Gastrointestinal pain started on the Saturday and the bleeding started about an hour after I got home from my second emergency presentation on Monday, and is also accompanied by uterine bleeding which started on the Sunday night in emergency 1st visit (should not happen because I have a IUD). I was admitted on the 3rd visit on Tuesday night. The gastro one has eased up alot but the uterine one has probably increased and it's coming up to two weeks I have been advised to let it go for another couple of weeks to see if it settles before seeking further medical attention.

I have had lower left quadrant pain on and off for about a year, sometimes to the point that it is hard to walk, without the bleeding on all the other occasions, but have vomiting and nausea. I have been to emergency several times with the pain but they have found nothing with an ultrasound or CT and sent home with a script for panadeine forte each time. They have ruled out everything that would be an obvious cause such as ovarian cyst, diverticulitis, colitis, crones, hernia etc. I will be scoped in three weeks so hopefully there will be an answer finally.

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #12  
Old Thu Feb 13, 2014, 06:30 AM
Honeybun Honeybun is offline
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Thanks Birgitta

Yes it was/still is. Gastrointestinal pain started on the Saturday and the bleeding started about an hour after I got home from my second emergency presentation on Monday, and is also accompanied by uterine bleeding which started on the Sunday night in emergency 1st visit (should not happen because I have a IUD). I was admitted on the 3rd visit on Tuesday night. The gastro one has eased up alot but the uterine one has probably increased and it's coming up to two weeks I have been advised to let it go for another couple of weeks to see if it settles before seeking further medical attention.

I have had lower left quadrant pain on and off for about a year, sometimes to the point that it is hard to walk, without the bleeding on all the other occasions, but have vomiting and nausea. I have been to emergency several times with the pain but they have found nothing with an ultrasound or CT and sent home with a script for panadeine forte each time. They have ruled out everything that would be an obvious cause such as ovarian cyst, diverticulitis, colitis, crones, hernia, kidney stone etc. I will be scoped in three weeks so hopefully there will be an answer finally.

Honey
__________________
Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #13  
Old Thu Feb 13, 2014, 01:42 PM
Birgitta-A Birgitta-A is offline
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Pain killers

Hi Honey,
Too bad with the uterine bleeding! Hope it will decrease!

You know when we have problems with the bone marrow we should try to avoid all painkillers. Once I googled 17 drug for moderate pain and they could all decrease platelets. Panadeine forte is quite strong and perhaps not OK for you.

Hope they find out why you have lower left quadrant pain. Could it be the hip or low back pain?
Kind regards
Birgitta-A
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