If it's not MDS, what could it be?

[Shellie]

Hello to everyone. I am new here, although i’ve been reading for several days now. I am seeking information in an attempt to help my dad. My dad is 59 yrs old. He has not been formally diagnosed with MDS as of today. I am not a doctor but I honestly believe this is finally the answer to what he has going on with him. This past year he has been getting sicker and sicker. He is not one to go to the doctor unless he is forced to (an almost impossible task). So far this is what we know is for sure going on with him.
1. Type II diabetic (never taken seriously by him)
2. Congestive heart failure (has 39% function)
3. Kidney failure (about 50%)
4. Diabetic Retinopathy (almost completely blind)
5. Has had 3 heart attacks since August 2004
6. Severe anemia (13 transfusions since August)

It started with alot of pitting edema in his legs. He ignored this until the water got into his lungs and around his heart. He had nearly 30lbs of water on his system. He had several heart attacks while they were trying to remove the water. They noticed his lab report showed his RBC count to be 6. He was given transfusions but he couldn’t seem to hold the counts very long. He ended up with 13 in all as of last month. They did CT scan on his back and abdomen and found enlarged lymph nodes. Finally he consented to a biopsy which came out to be negative for lymphoma. They tried finding where the “leak” was coming from as he was losing so much blood in such a short amount of time. They did a colonoscopy and endoscopy only to find no leaks. He is a tall man (6’4″) and weighs about 270. He’s now up to 296 probably due to excess water again as his edema is up to his knee and there are crackles in his lungs. He holds a low grade fever most of the time. The doctors are baffled here in our small town. For one, my dad is the worst patient in the history of patients (meaning cussing, fighting, kicking equipment, etc) He’s absolutely terrified of hospitals. He is on Procrit once a week for the past five weeks. His last RBC was 9.0. His platelets were 10,000. The only count I’m unsure of right now is his WBC. His skin is verrrry pale with a tinge of yellow to it, but his eyes are not yellow. He is short of breath and is so weak that he can barely get himself out of a chair. He spends the entire day sitting in a chair or in bed. He can barely walk. His arms and legs are so thin yet his abdomen is very enlarged. He basically refuses help but then cries all day that no one wants to help him. I don’t know what to do and my poor mother…. We go to the doctor again on Friday. The last time we were there he told him, “George, you are NOT alright, I really believe something is truely wrong” now dad doesn’t want to go back because his doctor is “trying to kill him” I’ve searched everything i can find to try and figure this out. This is all I can come up with as to what might actually be going on and i wouldn’t be surprised if it isn’t to the point of AML by now. Is is possible that it could be something else that i’m missing? I’m sorry this is so long this is just very hard to deal with. I really don’t think he’s going to make it much longer. Is it possible to make a recovery for someone who is this far gone? Thank you and God bless you all.

[gina]

I don’t have the problems you do, but…here’s what’s happening. I’d been dragging my tail around for awhile, but my doc thought it was just my meds. I’m a 4-year breast cancer survivor, and have had multiple surgeries/procedures over the last 4 years to the point of finally acquiesing to disability. Kidney surgery, ovarian, hernia, and so on. Too numerous to count. Let’s just say I’ve had more surgeries in 4 years than the last 50.

At any rate, most of what relates to this began in Sept., 2004. I was hospitalized with a severe septicemia, which was cleared up in 2 weeks, discharged, a week later, spiked temp and ended up in hospital again – again with pneumonia, but neg. blood culture (thank god!). However, within a few short days, my blood counts bottomed, and I had to be transfused. Note that over the last 50 years, I’ve had infections that have almost killed me, and with those, multiple different kinds of antibiotics, and never once had to be transfused. Things went so well after Oct., that I went out of town for t’giving, only to spike fever day after, and end up in hospital for pneumonia – again – and severe anemia. I came within a few tenths of a point of getting transfused, but got home ok a week later. Two days before christmas, spike temp and started vomiting. Given that was the sign of sepsis back in Sept, I nearly panicked, but when I got to ER, they admitted me under IV antibiotics – again – with pneumonia – again but thankfully – again, neg. blood cultures! However, once again, my counts bottomed, and I was transfused on Christmas day. It’s now January 26, and so far…

My doctor basically said that as my counts drop, even just hgb, I become sick (immune system crashes), and the need for blood is greater, I can’t produce it, and my counts bottom to the point of transfusion. This was confirmed by a bone marrow biopsy that showed severe hypocelluarity of the marrow. Normal is 40-50% Mine is 15-20%. We are still awaiting a flow cytometry and genetic tests to see what might show. Just as I did when I found breast cancer, I started doing research on the net. Unfortunately, it seems that I don’t really fit in any ‘category’ I can find. I asked about aplastic anemia, and my doc said “no, A means none, and you have cells in your marrow” but the more research I did, the more I discovered there are several ‘stages’ for want of a better term of Aplastic anemia – from less than 30% cellularity to none or very, very little. It also states that it can be in any one or all three of the cell lines (wbc, rbc and/or platelets). Ditto with myelodysplastic syndrome – but…the question I have is this. Can myelodysplastic syndrome only pertain to less cellularity AND deformed cells morphologically, or…can it pertain JUST to lowered cellularity of the bone marrow, with the cells normal morphologically? That’s what I can’t seem to figure out – most of what I read is rather vague, but…one or two articles have said either/or, and a few articles have stated that it can be 1, 2 OR 3 cell lines, so for example, if my RBC’s only drop, it doesn’t matter.

What’s happening with me, is this. My HGB drops (iron and folate are normal, as of last test) – it was 12 on 12/26 and is 10 on 1/24 – last test on 24th showed that other cell lines were fine – and I get sick. My suspicion is that even if my WBC’s don’t drop as dramatically, the debilitation caused by the RBC’s dropping sends my immune system out of whack due to the weakness and less resistance…I catch something – usually pneumonia due to smoking for many years (quit 18 months ago, but damage is done with moderate COPD), and the demand for cells isn’t met, and they bottom out, and transfusion perks me up. Seems that every other month, I need transfusions, sometimes 1 unit, sometimes 2 units, doesn’t seem to matter – both last about as long. I’m on oxygen 24/7 probably due to both low cell counts (hgb) and copd. Attempt to take me off o2 at hospital for a few moments ended up in my o2 level going from 99 to 90 immediately, so I was put back on.

Does this sound like MDS, or variations? Could it be aplastic anemia? Granted, when the flow cytometry and genetic tests come in, we might have a name for it but I won’t find this out until the 31st – my doc had to sit jury of all things, this week! . I’d appreciate any comments. Sorry for the LOOOONG post, but…I had some good examples here to follow.

[Terri]

I hope You both find your answers. Have Bone Marrow Biopsies been done. This is how our Dr diagnosed my husband. It is probably the most accurate way to diasnose this disease.

Continued prayers

[Marsha]

I agree with Terri, that was the only way that I got a difinitive answer for my disease. Otherwise my doctors were purely going on speculation. Got my answers and went on from there. I wish you well with your Dad, but it sounds like he has some other serious stuff going on as well. My prayers will be with all of you

[Andrea]

Shellie:

I am so sorry your family is going through this. It does sound like there might be something going on with your dad’s liver as well, although I’m sure the doctors have looked into that. Please keep us up on his condition. He is so young. God Bless your family, hope he improves soon.

Andrea

[Andrea]

Shellie:

I am so sorry your family is going through this. It does sound like there might be something going on with your dad’s liver as well, although I’m sure the doctors have looked into that. Please keep us up on his condition. He is so young. God Bless your family, hope he improves soon.

Andrea

[Andrea]

Gina

My sister who is a breast cancer survivor was also in the hospital this last week with septicemia. Actually blood cultures were positive for Strep and her disease was called Toxic Shock Syndrome, from her breast reconstruction months ago! However, my mother’s hematogist told me that when your body has fevers, the bone marrow stops functioning properly and your Hgb plunges. This is what happened to her, she had to have three transfusions. She is home now on IV antibiotics. In addition, when you have low Hgb, your body has trouble keeping up your sats because your lungs have fewer red cells to deal with. I hope this is all it is with you, sounds like you’ve been through so much and that you will be on the road to recovery soon!

Andrea

[Shellie]

Hello. Thank you all for the kind words. We are supposed to go to the doctor tomorrow but dad is already trying to get out of going so we’ll see. At this point, as bad as he is I really don’t see anything helping. He wouldn’t give anything a chance to help. He wouldn’t even wear a heart monitor in the hospital after his heart attack, In fact he threw it across the room. Even though it wasn’t hurting him or anything. I can’t imagine him even thinking about going through any treatments. Maybe it’s best that we don’t know. It’s rough just living in the dark all the time wondering what’s going on and if there is anything we can do.

Gina, wow you have been through so much. I hope you are able to find the answers you are seeking as well. I know how hard this is to not know. As helpful as the internet is, it’s sometimes too much information and it all becomes to much to sort out. God Bless you.

Andrea, I really don’t know. They have done blood work and his liver panel was fine. They have also done CT scan of his abdomen so I thought they might see something there. The only thing they have come up with so far concerning his liver is that it is “congested” probably from fluid overload. So i guess they’ve ruled out the liver. Thank you for replying, take care of yourself and your mom.

Thank you Marsha and Terry. No, there has not been a BMB done. I really don’t see dad allowing that to happen. His mental state is reallllly bad right now and he doesn’t seem to want to know. He just wants it all to go away without knowing about it or trying to do anything for it. I think this is the wrong road to take myself. I would fight! I wish I had the Magic pill he’s looking for.

I will try to keep you all updated on his progress if we find anything out. If someone has any clue if this might be something else please let me know.

[eve]

dear shellie

in my opinion i think you have to treat your dad’s mental state before you can even think of helping him physically

good luck

eve

[sarah]

I agree with Eve. His mental state is of upmost importance.

[Jimbob]

Shellie, unfortunately, the docs are not likely to be able to tell you for sure what it is witjout a bone marrow biopsy and asapiration. It is possible that dad’s free is of what he expects it to be and that could be lessened once the docs can determine what it actually is. Also, pain can make one make poor chices. Either way, the docs need to know what they are working with for sure.
Jim

[Shellie]

I agree about his mental state completely. However, at this point it’s impossible. He is very depressed as he cries almost every day. Yet, when we tried to get him on anti-depressants he flat out refused them. He will not take anything at all to help him and refuses the logic that says it could only help. We have trouble getting him to even take a pain pill when he’s crying that his bones are killing him. It defies all logic to me. Why is he making himself suffer so much? We just don’t know what to do. He is totally dependant on us right now and begs for help but won’t accept any. For example when he was having severe shortness of breath and chest pain my mother insisted he take a nitro. The result was him going into a rage saying she was trying to kill him. I don’t think he has that kind of energy anymore as he can barely walk from one room to the next. It’s all so frustrating. When I bring up the fact that he’s very sick and they need to run tests to find out what it is and how it can be treated he says i want him to be sick. Ughh Thank you for listening.

[sarah]

Shellie, when faced with a serious illness, you get frightened. However most peoples will to live kicks in and you make choices. You can either give in to it,or decide to fight back. Your Dad needs to get to the point he wants to fight back,educate himself and live the best quality life he can with a positive outlook.
Hope he improves soon,
Sarah

[Shellie]

Well as it came as no shock to me. Dad called this morning and (how’s this for logic) claims he is too sick to go to the doctor today! Yes, he’s very ill we all know that. But this is his way of saying he doesn’t want to know what the doctor has to say because it won’t be good. Now, as I said before I don’t know if he has MDS. I’m just trying to get some idea what might be going on with him. I was able to get to the doctor today by myself and get a copy of his lab results but without the BMB I guess we’ll never really know. Here is what was out of whack.

WBC 8.1
RBC 2.64 Low
Hemoglobin 8.9 Low
Hematocrit 27 Low
MCV 102 High
MCH 33.8 almost too high range was up to 34
MCHC 33.1 range went to 36
RDW 17.8 High range went to 15
Platelets 146 kinda low
Neutrophils 73 almost too high range up to 74
Lymphs 13 Low Monocytes 13 range up to 13
Eos 1 on the low side
Baso 0
Neutrophils absolute 5.9
Lymphs absolute 1.1
Monocytes absolute 1.1 High range to 1.0
Bun 30 high
Creatinine 2.1 high Sodium 139 normal
Potassium 5.1 normal
Chloride 110 high range up to 109
calcium 8.4 low

Does any of this jump out at anyone as something that needs to be looked at more closely?

[Terri]

Hope your dad decides to go to the Doctors, My Husband is 59 he was dx August 03, it came as a shock to him, I know it scared the crap out of him, But he did go through all of the testing with the Hemotologist. Your Dads counts need to be checked and I am sure a Hemotologist would want to do the bone Marrow Biopsy. Hopefully his mental state will get better and he will agree to go. He is TOO YOUNG TO GIVE Up. We also use a nutritionist who has helped with Vitamins and supplements. He is doing Rather well for having this terrible disease, I just keep the faith and pray a lot.

Will pray for your dad

[Author]

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