New to AA, my story

[grueter]

I'm a 61 YO male who has always been healthy. I enjoyed running, didn't smoke or drink and so didn't think much about my health. My Odyssey began the week after Thanksgiving 2016 when I was out of breath while exercising. I called my regular DR who saw me in his office that day, he drew blood and scheduled a treadmill cardio test but no outstanding issues he could see at the time. On the way home from his office he called and told me I was anemic and needed to see the hematologist the next day. My counts at that time were Hemoglobin at 10.2 and platelets at 30k. Three days later I had a Bone Marrow Biopsy and the Aplastic Anemia diagnosis from the local Hematologist here in Colorado Springs. I was then referred to the Colorado Blood cancer Institute in Denver to see Dr. Nash the following week. Dr Nash wanted to run some tests (16 vials of blood) and wait and see. Blood counts continued to fall but apparently were not critical yet. At my next appointment with Dr. Nash I was told there were no obvious causes for the low counts so more waiting and another appointment in five weeks set for Feb 20, 2017. Meanwhile my local Hematologist here in Colorado Springs is doing CBC's every other week and just got the latest results from that today, Hemoglobin at 8.3 and platelets 17k. A call from his nurse wanted to know if I was bleeding in any way (I am not) so after consulting with the Dr. said no transfusion for now but another CBC scheduled for Monday.
Overall, my counts have been in steady decline since the end of November and I appear to be headed steadily down the AA path. I now feel worn down most of the time, don't sleep well and gasp for breath at the top of a single flight of stairs.
I have been reading this forum for the last few weeks and have been inspired by everyone's experiences with the condition and it's treatment. You have given me hope for the future and so I thought it was time to jump in and introduce my self.

[bailie]

Grueter, welcome to the forum. Interestingly, it was Thanksgiving 2013 that I got the news. I was feeling fine at the time except for the kidney stones that prompted my doctors appointment. The CBC got all of the doctors jumping. My numbers were also in decline. I immediately started on Vidaza to get my counts in a position for a stem cell transplant eight months later. Ask as many questions that you would like. We are all here to help and we realize how significant the information you have been receiving. When I received the news it was a shock because I had not been sick my entire life except for the little stuff.

[Neil Cuadra]

grueter,

It's good to hear that you have been generally so healthy. That makes a big difference when you have a disease like this to contend with.

Your quick call from the doctor, sending you to the hematologist, is also what happened to my wife. She had a routine test, and then came the phone call telling her to drop everything and see a hematologist.

Did the doctor share the bone marrow biopsy lab report with you? It can be instructive if you are trying to understand the medical details. For example, it probably reported your cellularity, measuring the percentage of blood-forming cells in your bone marrow. In some cases, there are so few cells that the doctors can't get a good sample, which is one way to rule out other diseases.

Given your anemia, it's no wonder you are worn out and finding it hard to exert yourself. Since your counts have been dropping, have any of your doctors indicated the threshold under which they'd recommend transfusions? Doctors can vary quite a bit in their recommendations about this.

It's ironic that they'd take 16 vials of blood from somebody who is low on blood, don't you think? But that's not unusual. My wife once had 22 tubes collected in one sitting.

With platelets at 17K and possibly still dropping, I'd think you'd want to have your counts checked more often than every 2 weeks. Of course, it's a bother having to go to so many appointments, but during the early going my wife and I drove an hour to the hospital 3 days a week to make sure she was fully under observation and received transfusions when needed.

What treatment possibilities have they discussed with you so far? Has ATG been discussed?

[bailie]

Neil, I picked up on that also. It seems that there is an urgency here that is being neglected a little. Greuter, it is a good idea to start this by getting organized with the data so you can see trends with a glance at your information. Remember that you are your primary advocate. Sometimes it is possible to get lost in the shuffle of information. Your knowledge will be instrumental in your success.

[grueter]

All, Thanks to all for your concern and helpful insights. Based on my latest counts, which also were a concern to my Dr's. I have been scheduled for another blood count plus Bone Marrow Biopsy (BMB) on Thurs. the 16th of Feb. at the Colorado Blood Cancer Institute in Denver. I was told that this is a very in-depth analysis that will take three weeks to completely analyze. My last BMB was here in Colorado Springs in Dec 2016 but I did not receive a copy of it. I was told my cellularity was 5-10% and should be 30-40% and will seek a copy of that report for my files. Meanwhile my counts will be monitored every week and thresholds for transfusions are set at Hemoglobin <7 or platelets <10k unless I exhibit some other symptom like excessive bleeding or Petechiae. I was told that delaying the start of transfusions could be helpful down the road if/when I do need them. I have also started a spreadsheet with my counts, thanks to the advice given here.

All the best

George

[Neil Cuadra]

George,

It sounds like they are taking good care of you. I'm sorry to hear that you have such low cellularity. I hope the bone marrow biopsy analysis finds no abnormalities in your bone marrow cells.

You didn't mention your white blood cell count. If it has been in the normal range, that's good news because a low WBC can pose the biggest risk.

Blood counts can be up or down on a given blood test, because counts vary day to day or hour to hour. Your spreadsheet will help you see the overall trend, such as gradually dropping, a sudden decline, low-but-steady, or even improvement over time. It takes a bit of adjustment to live with low hemoglobin, but you know your body best, so you can decide where to expend your energy and where you can conserve it. You can also give the hematologist feedback on the low-count symptoms you experience day to day.

Do you have a support team of family and friends? Does someone else accompany you to appointments to help listen or take notes?

[grueter]

Thanks for your insights, they have already been very helpful.

As to my white cell counts I am told that, while low, they are not critical. My last CBC had WBC (count?) at 3 and the absolute Neutrophils at 0.9.

I was called today by the Dr's office and told that I will get a platelet infusion tomorrow before the BMB. Thought being that the procedure might induce some bleeding that could require them. Not sure what to expect at the infusion but it sounds like a good thought.

And most blessedly I do have a good team of family and friends. My very supportive wife will accompany me tomorrow and the rest of the family is eager to help. It would be difficult indeed to face something like this alone.

All the best.

George

[Hopeful]

Hi grueter,

Welcome to the forum!

As a fellow runner, I would encourage you to take up walking (with your doctor's permission of course). Exercise is what kept me sane through the whole experience. Also, having a walking routine makes the transition to being a runner again that much easier, once you put this all behind you

I'd encourage you to discuss with your doctor having your platelet level re-checked before undergoing the transfusion tomorrow. You don't want to get transfusions unless absolutely necessary. As a data point, I never had issues or required platelet transfusions before BMB's despite my platelets hovering around 12-15k. I had a normal clotting factor.

If you do get a transfusion, make sure the product is leukocyte-depleted and irradiated.

Best of luck with your BMB!

[grueter]

Hi Hopeful,

Exercise has been a large part of my life to date but now I find simple exertions make me gasp for breath. I did purchase a spinning bike and try to use it several times a week for an hour, it does not take much now to get my HR up to 130. The boredom of this fixed exercise compared to running is hard to overstate, it is a challenge just to get started each time.

I saw your posting after the procedures were complete, but I too was puzzled by the Dr's recommendation. However I did not question anything and both the transfusion and BMB were completed uneventfully. I hand carried the transfusion order and do recall that it was irradiated but not sure on the leukocyte depletion. I did not keep a copy of the order but will in the future and will discuss all these items with my Dr.

Now I wait two weeks for the BMB results with an interim CBC at one week. Needless to say I am anxious to hear the news.

Thanks for your help, this is all such a learning process.

George