Hello

[chalky.1]

So my Dad has been confirmed as having mds.
4 weeks ago he had to have a blood transfusion using 3 pints.
This was confirmed today after having some spinal fluid take.
He is now got to go back to hospital to have another 3 pints. All they have done is give him a booklet and told him to read through it. I have since found building blocks of hope. It affects his red cells. His anemic level is 8.5 at the moment.

He is on no medication at the moment.

What are we to expect. We dont even know the full blood tests.
Little worried.

Any advice welcome.

Thankyou

[bebop]

do you have his bone marrow biopsy results?

[Neil Cuadra]

chalky.1,

I know there is more information to read than you can absorb all at once, but it's important that you begin to understand the nature of this disease. Your Dad will do best if you, he, and his doctors can act as a team. The more you read and learn and the more questions you ask, the better you'll be able to do that.

There are three steps ahead. The first step is getting your Dad out of immediate danger. That's the reason for the transfusions. Presumably, all of his blood counts were assessed to see which were dangerously low. You should ask for a copy of his blood counts and any other lab reports. If there's a procedure to follow to make sure you have access to your Dad's medical information, follow that procedure to get that issued settled.

The second step is getting a full diagnosis. You said MDS was confirmed so perhaps they've completed this step. You'll want to know his MDS "subtype" and prognostic scores, as well as an English-language description of his status. Even though doctors may classify MDS into "low risk" and "high risk" categories, it's really a continuous scale from "mildly bad" to "very very bad", and no case of MDS is free from risk.

The third step is deciding on a treatment plan. You and your Dad can read about the treatment choices but your primary source of guidance will be the recommendations of his doctors. You may not have any reason to doubt their recommendations but you should still ask why that's the best choice and why not other choices. Determining the proper care for a given patient is both art and science, and this is where a doctor's experience with MDS will pay off.

Sometimes the "treatment plan" will be to wait and see what develops next, rather than to start him on medicine. Or they may mention checking for potential stem cell donors. If they don't think it's worth doing that for now, it can always be done later. If he's not a suitable candidate for a stem cell transplant, then looking for a donor is not an issue.

The treatment plan will lead to the rest of your Dad's care. If he's to take drugs you can ask questions about the treatment schedule, expected or possible side effects, what the family can do to help, his likely prognosis based on the outcomes for similar patients, any financial concerns you have, and so on.

Your Dad's age is one factor that doctors will consider. If you don't mind sharing that information with us, and telling us how his overall health has been (other than in the last month) then we'll be better able to understand your situation.

[chalky.1]

Thanks for the replies so far.
Dads age is 75. He has been tired but not sure how long for. He new ther was something wrong for a while as he had lost a lot of weight. We knew nothing of this until he was admitted. You see my mum passed from cancer and I'm not sure if he is just trying to bury his head in the sand or has just not absorbed the information yet.
I have asked him to get his blood results from the nurse but he has said he is not sure if he can but will try.
Would a dr tell me? It really is tricky as I don't wish him to worry. We can do enough of that for him.

[NLJabbari]

Hello Chalky.1,

In the USA, a doctor will talk to/inform/discuss an adult patient's case with a family member only with the written consent of the patient. This consent is kept on file. Also, I have a copy that I can carry with me. My 19 y-o son signed a form called, "An Advanced Directive" stating that I am his assigned "Agent" In this form, my son stated that besides himself; I too can make decisions as they apply to his care.

[Neil Cuadra]

Originally Posted by chalky.1

Thanks for the replies so far.
Dads age is 75. He has been tired but not sure how long for. He new ther was something wrong for a while as he had lost a lot of weight. We knew nothing of this until he was admitted. You see my mum passed from cancer and I'm not sure if he is just trying to bury his head in the sand or has just not absorbed the information yet.

It's not unusual for someone from his generation to have a "let the doctors handle it" attitude, and not to expect to direct their own healthcare. That can produce less than ideal outcomes because they have less control, even though they haven't asked for control. That's why their adult children are so often involved in listening to the doctors and asking questions on their parent's behalf, and helping manage their parent's care.

I have asked him to get his blood results from the nurse but he has said he is not sure if he can but will try.
Would a dr tell me? It really is tricky as I don't wish him to worry. We can do enough of that for him.

Here's what I learned by looking around:

Under the Data Protection Act 1998 and the Health Records Act 1990, your Dad has the right to see his own medical records. (I'm assuming you are in the U.K.) He can submit a request in writing or even by email to his doctor or the hospital's health records manager, stating which records or which dates he wants copies of. See this page or this page for details.

Once he gets copies of his records, he can share them with you, but I suggest that you ask the doctor or hospital what form he can fill out to let you have access to his medical records directly.

If you want to further formalize it, you can have access to his medical records and the authority to make medical decisions for him if you apply for and register a Lasting Power of Attorney (LPA). See this page for details.

Doctors and hospitals have to be careful not to get themselves in trouble for violating patient privacy rights, so don't assume they are treating you unfairly if they insist on some documentation that you are acting on your Dad's behalf.

[chalky.1]

So i have since found out that they are doing the watch, wait and see result. He has been told he will have to have 3 units of blood a month.
No blood test results as yet, have to wait and see the consultant.
scan booked for next month.
Thanks for all the replies so far.

Dad was given a booklet to read but did not even look at it until i went round there! xx

[bebop]

I always went the the dr with my dad. I got copies of all his blood work so I could keep track of is all. Is there anyway you can go with him? Dad didn't understand his dr so I would give he and his wife the rundown of what the dr was saying. All I can tell you as his child is to read read read. Don't let it all scare you though. You may have to push for closer transfusions if you see him getting out of energy sooner than a month. please keep asking questions and posting! Good luck!

[chalky.1]

Thanks for the replies, yes i will go with Dad when he sees the consultant in June. Just found out they mentioned chemo, just have to wait till then i suppose. CT scan in the mean time x