bone marrow results

Hi People,
it has been about 4 weeks since my bone marrow biopsy/aspiration. I was not going to write about this issue but I need to. I got the results of my blast count from the smaller lab. The smaller lab tends to count my blast count higher than the transplant lab. FA bone marrow has different cells in its marrow. Some of these cells appear like blasts....so someone who is not experienced can accidently count these FA cells as being blast cells which are baby white blood cells. Baby white blood cells can become out of control and grow in numbers.....this is called leukaemia. I have had pre-leukaemic marrow for a long time. I have my marrows done privately because of anxiety.....so I can have an anaesthetic. If you have it publicly they don't put you asleep and my last episode of that was terrible...I was wide awake and kicking and very traumatised...so now I have it done privately so I can have a full anaesthetic. This private, small lab takes the slides first because it is private and then the transplant lab is sent the slides as well for the more experienced assessment.
Results of the past years show clearly how someone has miscounted my blast because they are not experienced with FA marrow........ 2006 blast count 14%, 2007 blast count 10% and this year came back at 13%. These are all uncomfortably high. A normal blast count is under 5%. However, in comparing this with the transplant lab.....a count of 14% was recorded in 2006 at the transplant lab was 6% and last year 7% as opposed to 10%. The general bone marrow results that have come back at the private lab have said "even though the blast count appears to have risen to 13% this year, the marrow has no significant change and is currently stable". This is good...and I know human error plays a huge part in counts.....like going from 14% to 10 and then to 13%.....same as the IMVS lab showing 6% and 7%....human error. The whole marrow needs to be considered to see if there is any change but it is good there is no significan change. However, I am still uncomfortable with 13% count and am eager to know what the transplant lab recorded.

My doctor has been SO difficult this year. I know a lot of people respect doctors but when someone is wrong.....we need to admit this. I feel manipulated and he is being extremely inappropriate. Firstly, he forgot I had a bone marrow biopsy so didn't order my slides to the transplant lab....understand that a blast count ONLY takes 2 to 3 days to count and now it is 4 weeks! I have been upset and anxious and cannot close the door on this years results yet. The haematologist allowed a "newer doctor" to do my counts.....who actually also works for the private lab....we found this out at the beginning of last week. I am not happy with anyone doing my counts from this private lab...and I wanted a second opinion from the transplant lab because this lady has probably NOT seen FA marrow before and this is crucial I have an experienced person look at my count as well as this small lab. So we challenged the doctor, nicely, in an email to have the senior doctors at the transplant lab do my count AGAIN...so that I have someone experienced also counting my count.......somewhere in this story there was confusion as the haematologist expressed that this "newer doctor" could not give me a count...and may be she didn't want to incriminate her smaller lab.......it is a MESS. All of this to just have a blast count given to me. The haematologist did not contact us all last week...so today we rang him because he promised us that this lady at IMVS transplant lab would be getting my slides to do my count ...she is experienced. He told us we could not ring her direct because it is inappropriate so we have been waiting for him to give us results. So we rang today and he TOLD ALAN OFF!!!! I couldn't believe it. He was really cross with us (what he said on the phone) because we "put down his collegue" in suggesting that she did not have the skill to count my blasts and he trusts her totally so we had no right to suggest we wanted another count because he trusts her. This is totally inappropriate....we all know how rare FA is and if a doctor has never seen marrow....well ...a complicated marrow...they are not experienced enough. We make life decisions on these counts and as patients...WE have TOTAL right to ask for the transplant lab to do the count....AND to want a second opinion. He had no right to be cross...and in the end...still didn't give us our results and insisted that this particular person will have the slides this week....there is a lot more I could say about all this but some people may take it as inappropriate. This doctor is being unethical and no one can tell me I can't have a second opinion. No one can tell me that I should be happy with the smaller, private labs answers because he trusts this doctor.....I should have the big lab doing my marrow.......I will not stand for this and I am very cross. They cannot hold back my count from me....but he insists on saying, "it looks similar to last year" but not actually telling me what my count is...this is wrong. So we went above him today and rang the lady who is supposed to have my counts.......apparantly she has not done my marrow for 2 years or so and my doctor is telling fibs....this either shows that he has not allowed me to call this doctor because he is lying or he has no clue as to who my slides go to...this is inappropriate.....totally unethical. He has not done right by me as a patient and I have spent 4 weeks thinking that my count is being done with the normal, big, experienced lab....only to find out all of this...and my doctor has REASSURED us that this lady has been doing my counts.......well he must have not bothered to check this detail and assumed..........SO this transplant lab doctor has now taken our phone number and is going to investigate for us and knows how important it all is and she mentioned that if our doctor is cross he will have to get over it...........
4 weeks of waiting and I am getting more and more anxious...it has been hard waiting for my results. I certainly hope the transplant lab counts my blasts as being lower than 13%. 13 % is not favourable......I am not planning to transplant but how scary if anything has progressed....it is encouraging that the general report says no significan change and being stable but until I get these results from the bigger lab...I cannot put it to rest in my mind.
I would not usually share this with people. I don't want people to think I am out to get doctors...however, I am not going to be manipulated by them because they think they are God. Having accurate results for FA is very important. This disease is really hard to deal with on good days and I don't appreciate it being so hard to get results and there is NOTHING wrong with requesting a second opinion or a bigger and more experienced lab to do my results.

This is what has been going on and I needed an outlet. I feel outraged. So please keep praying for my results...and don't let doctors push you around. It is not their life that they are dealing with...it is yours....we are their clients and we pay for their assistance and help....they are not meant to do any harm....emotionally or physically and I am very disappointed.

Thanks for reading and listening,
Love Charisse