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Honeybun
Wed Aug 28, 2013, 11:05 AM
Hello everyone

Just some questions I would like answered please.

At what level does your Hb have to be before you require transfusions?

How often do you have them?

When are you considered transfusion dependent?

Have members found it hard to maintain work when having regular transfusions?

Thankies in advance :)

Honey

sbk007
Wed Aug 28, 2013, 12:34 PM
In the U.S. for males below 7, if your older 8 the docs will automatically send for a tx. However, Its also symptomatic. If you feel like crap at 8 then the doc might recommend a tx. I had 1 transfusion so far in the 5 months since dx, I started vidaza 2 months after my tx and haven't needed another yet.. To me Tx dependent means you don't need transfusions but there's a timeframe between txs that doctors use so its confusing. My best advise I ever got from anyone is not to obsess with your counts. I find that in my case that I can talk myself into feeling worse. We tend to stress out and that in itself will cause immune system depression. Take Care

Honeybun
Wed Aug 28, 2013, 08:45 PM
Thank you CBK. Correct me if I am wrong but do Americans write Hb levels as a single unit. In other words does 7 mean 70 in Australia? In Australia normal range is 115 - 155. I feel tired and breathless hovering around 100, if I was 7 I think I would be bed ridden!

How do you function when your counts fall so low? Do you find it hard to work, get out of bed etc?

Thank you

Honey

Whizbang
Wed Aug 28, 2013, 09:46 PM
Honey,

Yes, when my Hb was 8.0 or 80, I couldn't even walk up the stairs without being winded... I could actually make it to work, but I would have to walk at a snails' pace...

You have to realize that this was hard for me, because I work in NYC, and nobody walks, trotting is considered a snails pace...

I am used to walking 3+ miles per day from Penn station to Grand Central station (no subways for me), and one around Bryant park during lunch...

I actually found out I had MDS, because I thought I had asthma, couldn't catch my breath during the JP Morgan corporate challenge (3.5 mile race around central park on June 12th of this year) I ran 12 minutes slower than last year... I knew something was wrong, and asthma seemed like it fit the bill...

sbk007
Wed Aug 28, 2013, 09:55 PM
I think you got it write with the hemoglobin measurements although most Aussies that post here use the same lingo as the U.S. I didn't feel much different until I hit 8. Then my head was cloudy, if I got up fast I'd get dizzy and I'd get tired earlier than usual and sleep longer. The doc told me that we get used to the low levels so don't realize it, we aclimate till we hit a certain level and everyone is different at what number they get comfortable at. When you get a transfusion you never get a full tank and so now some docs are recommending higher levels. I think its like 1 point for each unit and then the game becomes how often you need them to maintain an acceptable level. Long winded answer..sorry..hope it helps.

Honeybun
Wed Aug 28, 2013, 10:19 PM
Whizbang you are so right about thinking it is asthma. I did the same thing, especially after a good belly laugh, I couldn't breath and would reach for my other half's inhaler. I think myself sort of lucky they found the MDS as I had annual haemo checkups due to my long term anaemia, high platelet count and high ESR. If I didn't I would assume a gp visit would just say I was unfit or had asthma. Just before I was dx my gp gave me antidepressants (which I didn't take), it wasn't in my head. I was falling asleep too often, I knew something was wrong, it wasn't normal. I was really upset that he gave me the anti depressants. I was lucky my annual haemo checkup was due and I pushed for a BMB, which was granted and how MDS was found. My GP believes it is a mistake because I do not fit the criteria such as being too young. So I changed my GP the other day.

SBK I forgot about the dizziness. I thought it was because I may not have eaten much for the day.

Thank you

Honey

Chirley
Wed Aug 28, 2013, 10:25 PM
Hi,

I interchange between the US and Oz measurements. It depends how I'm feeling :)

Honey, I don't know about your institution but at my previous daycare they transfused under 100. This was only for transfusion dependant people though. If you had surgery and your Hb was under 100 they wouldn't transfuse because your body would eventually raise the Hb itself but if you had a disease where you couldn't make blood for yourself (eg MDS) they transfused under 100.

I've had blood given to me with a Hb of 98 because it was going to be another two weeks to my next appointment.

As for the ability to work with a low Hb....I can't fathom that one. I worked as a nurse in an acute hospital and one evening shift I received a phone call to say my Hb was 53 and I needed to go to ED for a transfusion. I felt perfectly okay. Then other times I was sure I needed blood because I was dizzy, tired and breathless only to find out my Hb was okay.

I eventually had to stop work due to other problems but I managed to work quite well while having regular transfusions. I was lucky though, I could schedule transfusions on my days off work so I didn't need to take a lot of sick leave.

Chirley

Honeybun
Wed Aug 28, 2013, 10:50 PM
Chirley, your just messing with the newbies switching between the two :p Get your Oz on.

Day care cracks me up, sound like a kindy er... kindergarten um place where small peeps finger paint. lol for those that call it something else overseas.

Chirley
Wed Aug 28, 2013, 11:25 PM
It quite often felt like kindy too.

I remember one weekend there were 10 of us lined up in chairs side by side all having blood transfusions and the covering weekend doctor walked in, rubbed his hands together and said "wow, a nice easy day. Only transfusions".

It felt like we were all being told what well behaved children we were.

Just to make it even better the nurses had put all the really sick people in "the west wing" and the doctor had yet to find that out.

I would have loved to have seen his face when he walked into there.

I'm not going to "kindy" any more. I get admitted to hospital instead. I prefer it because I don't have to commute every day.

Chirley

Glenda H
Thu Aug 29, 2013, 09:02 AM
When I have a blood test and HB is around 80 I usually have a blood test a week later and then ring the Physician's office staff ( who arranges the blood and hospital bed) and get HB result from them and go from there. I don't like to go much below 70. I don't work so try and take it a bit steady leading up to going into hospital.

Cheryl C
Thu Aug 29, 2013, 09:18 AM
Nice to know that someone else feels the same humour about the "day care" centres!! I must say though, as a grey nomad travelling around Australia and having my infusion in a different hospital nearly every month, the staff are invariably wonderful. The smallest centre I've been to had only 2 chairs and the largest about 20.

Honeybun
Thu Aug 29, 2013, 11:48 AM
The reason I asked about work is because I can't seem to concentrate. My job requires me to write very large documents most legal or safety related. I just seem to have writers block. I have a responsible job where I need to be switched on, be able to answer questions quickly and short timeframe turnarounds, but I feel completely switched off to anything complicated. It's not motivation, and I am happy. Basically I just don't want to think or can't.

I don't know how you do it with hb levels so low. This concerns me on how I will be able to function in my job in the future as my levels fall.

Honey

Chirley
Thu Aug 29, 2013, 06:42 PM
I think your body adapts and you get used to functioning at a different level of normal.

Other than that, can you apply for time off or reduced hours and have your income protection isurancev(with your superannuation) make up the difference in pay?

I had income protection insurance for a year (was entitled to two years) but my doctor wrote a report saying my condition was permanent and terminal. The income protection people dropped me like a hot potato, deemed me totally and permanently disabled and forced me to take my super payout. I intended going back to work but because I'd been declared TPD I wasn't permitted to return.

I live on the DSP now and it's not too bad. It's not means or income tested so any savings, assets or investments you have don't affect the pension. I wanted to work for the pension (paid or voluntary) but Centrelink said no. I was too unsafe for any employer to have around. I could fall or faint or something. It's annoying when you want to give something back for your pension and you're not allowed. No wonder Australia has such a huge social welfare burden.

Did you see the news where this family of two parents and four kids were sleeping in a car in a car park. The woman is pregnant again (there goes another $5000 baby bonus.....for the benefit of overseas forum members....people get $5000 every time they have a baby) and neither of them work. They were complaining about having to live like that. They CHOSE to leave a stable home in another State and come to Queensland with no job or house to come to but now they are going to be given a Government funded house. They already receive $900 a week in social welfare payments and more when the new baby is born. They were asked if it was a good idea to have another baby considering their living arrangements. They basically just shrugged their shoulders and said that they "have enough love for them all". In my opinion a job and financial security would be a good starting point.

I like Judge Judy...if you can't afford a child....keep it zipped.

sbk007
Thu Aug 29, 2013, 06:47 PM
5k a baby?, here in the U.S. your lucky to get a tax deduction. If they offered 5k bonuses per baby we would collapse our financial system in 5 years and run out of housing, food and space..:)

Chirley
Thu Aug 29, 2013, 07:26 PM
Yeah, our population was in decline so they pay people to have babies. Problem is it encourages the kind of people who shouldn't have children.

I think they are/have reduced or are getting rid of it but now they are going to pay 6months on full pay for maternity leave. At least only women who work and contribute to taxes will get paid. There is an ad on TV at the moment which rings true. A woman on $150,000 a year will get paid $75,000 to have a baby. Some country we live in huh? Registered Nurses here earn about $80,000 base rate with shift and weekend penalties on top, so $150,000 is not an uncommon wage. I'm not sure but I think the minimum hourly rate is around $15 - $16 for working in places like MacDonalds after school etc.

I DO like that Australia has a welfare system that supports those who need it but it is abused by certain elements in society who just won't do anything to help themselves.

Greg H
Thu Aug 29, 2013, 09:15 PM
The reason I asked about work is because I can't seem to concentrate.

Hi Honey!

I run a small newspaper -- a real mom and pop operation -- so I sell ads, build ads, attend and report on meetings, write stories, edit stories written by others, and lay out the paper.

Back when I was being transfused every other week, I would have a transfusion when I dropped below 8. So I spent most of the time on a two-week slide from 9.5 to 8. I never felt that I had trouble with concentrating or doing the job because of low HGB. I did take afternoon naps pretty often (I'm self-employed and work mostly from home).

However, in the first few months after I was diagnosed, when I was deciding what course of treatment to take, I was highly distracted by the task of learning everything I could about the disease. I checked Marrowforums multiple times during the day, watched the whole backlog of webinars and conferences on the AAMDS website, read journal articles, and so on.

I recall that sometimes it would the crunch day when I am supposed to be laying oHandi quilter quilting frameut the paper and my wife would come into my office and scold me because I was on Marrowforums again. I spent every evening filling my head with everything about MDS.

So, I don't think the low hemoglobin interfered with my focus, but I think mentally processing the fact that I had this disease that was trying to kill me did drive me a bit to distraction.

I learned a lot through all of that, and ultimately, somewhat serendipitously, found a treatment that is working for me. So I wouldn't change anything. But it was distracting. I once told my research nurse at NIH, somewhat to her horror, that my disease had become my hobby.

I do think you have to negotiate your target transfusion number aggressively with your doctor, particularly if you are on a fairly regular schedule. You're going to need the blood no matter what, so why suffer? By the way, that is the attitude at NIH, who typically transfuse men at 9 and women at 10, as I understand it.

Take care!

Greg

Honeybun
Fri Aug 30, 2013, 12:10 AM
Chirley, I do have income protection and will be investigating this soon, so I am prepared when I need to make the decision to stop work (temporarily). It just makes it easier for my employer to find a replacement and will take the stress off me thinking of work. I know I have to wait three months before I can access it though once the decision is made.

(rolling my eyes) I agree with your comments on our social security. Several years ago I was admitted to hospital with suspect appendicitis, but they removed a 25 cm tumour. I was off for 7 weeks had full abdominal surgery and was in a abdo bandage. Because I was on a contract and had a new job I did not have sick leave. Social Security would not give me one cent, because I did not put my form in while I was in hospital. How did I know I had to do that? I have had a job all my life and paid taxes and I get nothing not even a health care card to subsidise medications. I didn't even qualify under special circumstances but if you get out of prison, are a refugee etc you can have money under special circumstances. Not if your a taxpayer and have a health emergency. Go figure. I had to go to my local member, one who gave up after a while because it became too hard fighting the social security system but one did have success applying for an ex gratia payment which I received several months later. The payment was about $2000. By then the damage was done, I had debts which took a while to get my head above water again. I had to survive on handouts from charities to eat etc during my illness. It was very humbling and soul destroying, and STRESSFUL. It is why I will never want to be in that predicament again and making sure while I am healthier I take time to research all I can regarding my finances and get everything set up ready to go so there is no outside stress during treatment. My partner can work away so we have also been preparing other things right down to having an organisation that can walk and feed my pooch, meal deliveries etc.

Greg I do read the forums regularly as well but not at work lol. I am finding them very useful, especially as I am not getting any answers from my haemotologist. I like your blog btw..well done :)

Honey <===== loves Judge Judy's no nonsense, kick in the pants approach. A couple of the magistrates I used to work with in the country region should watch the show and learn something.

Chirley
Fri Aug 30, 2013, 01:14 AM
Greg,

industry jargon, predictive text, my ignorance?

I recall that sometimes it would the crunch day when I am supposed to be laying oHandi quilter quilting frameut the paper and my wife would come into my office and scold me because I was on Marrowforums again. I spent every evening filling my head with everything about MDS.


I've seen a few predictive text mistakes and some are very funny.

Regards

Chirley

Chirley
Fri Aug 30, 2013, 01:25 AM
Honey....3 months for income protection? My wait was two weeks.

I didn't even have to go without income in that two weeks. I used my long service leave to cover the gap. All I had to prove was that I had no paid sick leave left. I could use annual leave, long service leave, family leave, study leave etc as long as it wasn't paid sick leave.

Just a hint, DON'T UNDER ANY CIRCUMSTANCES, reduce your working hours before taking income protection. The insurance company will pay you at 75% of the hours worked in the preceding few months. I made the mistake of reducing my work to part time to cope with work and my illness. Despite having been full time for the same employer for the previous 25 years, they only paid me 75% of my hours I had reduced to for the previous two months. You are better off staying full time and taking unpaid sick leave. That way you are still regarded as full time.

So many little things to watch out for.


Regards

Chirley

Honeybun
Fri Aug 30, 2013, 01:41 AM
Thank you Chirley for that advice, you probably stopped me from making a mistake.

Yes my super is with the government and it says 3 months. It can be changed to two months but that won't happen now I have been diagnosed as it requires a review from the Super Board.

Do you know if you have to take it all at once or can you take x number of months go back to work then take more. I was thinking I would maybe need some for the transfusions and then some later at transplant stage.

Chirley
Fri Aug 30, 2013, 02:00 AM
Honey I think your State Super is different to my State Super. (I was with Q Super).

On my income protection you could apply to work a certain number of hours a week and have income protection make up the difference to full time hours. (I wish i had the forethought to do that instead of going part time). I'm pretty sure you could use the income protection intermittently but bear in mind that there is probably a waiting period each time. In my case two weeks and 3 months in your case.

You can always apply for sickness benefit from Centrelink to cover the gap but I think it takes a long time to come through, its not much money and there's quite a bit of paperwork involved. I really don't know. Up until I was placed on DSP I had never had a Government benefit in my life. I even missed out on any First Home Buyers Grant or even tax concessions. I did receive the $900 incentive payment that everyone got to boost the economy, paid for my new fridge (almost).

Hope to talk with you on the 11th September. There's usually about 5 or more people on the phone forum from all over Oz. (plus the moderator of course)

Regards

Chirley

sbk007
Fri Aug 30, 2013, 12:17 PM
In the U.S. no one will tell you when you qualify for what's called Disability benefits. I've been working for over 30 years and every paycheck I ever received has 7.5% deducted for Social Security and medicare. On top of that my employers have to pay 7.5% as well so 6% goes to SS & 1.5 % to medicare. If you have a "life ending disease" OR you become disabled you are entitled to disability. The amount you receive is based on your wages over your lifetime. Here's the kicker...You have to wait 5 months from the date of diagnosis to receive your first check, and you have to wait 2 years, yes 2 years to get medicare. Needless to say the payout is something but by no means enough to pay for healthcare and living expenses.

Honeybun
Fri Aug 30, 2013, 12:27 PM
How do you survive during that time SBK? Most people have mortgages and little savings.

Whizbang
Fri Aug 30, 2013, 12:27 PM
Steve,

Check with your human resources dept, as many companies will cover your health insurance once you go out on LT disability for that 2 year period...

I am lucky, I have been paying for 90% LT Disability (60% is usually company sponsored) through my company, and my company covers my healthcare premiums while I am out on LT (for at least 2 years)...

sbk007
Fri Aug 30, 2013, 01:19 PM
Whizbang, I don't have an employer, I was a "hired gun", so I don't have LTD, I have to buy my own health insurance. Once obamacare kicks in Ill be in a better position from that end(so I'm told). You might be able to get disability in addition to the companies LTD as they're separate, and you'd qualify for medicare in 2 years which is something to think about. I don't think having an ltd disqualifies you from disability insurance and it lasts longer than 2 years if need be.

Honey, I survive by living off my savings. No free lunches here...

Chirley
Fri Aug 30, 2013, 08:49 PM
We seem to have a similar system in Oz. we pay a 1.5% Medicare levy on our income which entitles everyone (not just those paying the levy) to free public hospital treatment and subsidised or free GP visits. There is no wait time or means test. These are standard Resident Rights.

Then we have compulsory Superannuation which our employers pay into at 9% of our income (recently told its going to 12%) also it's the employees prerogative to add to that Superannuation payment. If you do add extra money it generally pays for Income Protection Insurance (but that may depend on the Super Company you choose to use). The money that we (the employee) contributes can either be sent to Super before tax is withheld which lowers our total earnings and income tax paid or we can claim the contributions as a tax deduction.

I don't know any employers who pay Health Insurance for their employees, it probably does happen but it's not customary. We choose whether to have Health Insurance or not and its not cheap here either. $Ks per year. Health insurance allows us to use a private hospital with a doctor of our choice, obtain treatment sooner and increasingly commonly, allows for some treatment simply not available in the Public Health sector.

My mother had renal failure last year and collapsed at home, she was taken by ambulance to the local Public Hospital where they did bugger all for her for 5 days. The doctor took me aside and told me that they were not going to offer her dialysis and that they were going to palliate her and let "nature take its course". I had been paying into a Health Insurance company for my parents, so I had her transferred her to a Private Hospital, they treated her aggressively, gave her dialysis and here she is a year later...alive and well and happy.

The employer in Oz pays 10 sick days per year which you can accrue year after year. If you get sick, use all your sick leave, have no income protection insurance you can apply for Sickness Benefit from the Government. It generally takes a few weeks to be approved and its a pretty small amount. Something like $200 a week I think.(could be less) but then you are entitled to subsidised medicine as well. I'm not sure if there is a time limit on Sickness Benefit. If this takes you below a certain income level for the size of your family then you generally get low income assistance as well. Things like rent assistance, transport assistance etc.

It would work okay if we didn't have people who spend their entire lives living off Government benefits and giving nothing back to society.

Cheryl C
Mon Sep 2, 2013, 07:47 AM
Dear Honey - Re "brain fog", that happened to me when I had 10% blasts and it went back to normal when they dropped. I, like you, was a public servant in a job where I did a lot of writing - I designed and developed training materials for firefighters, as well as being responsible for helping firefighting trainers to improve their skills. It was quite a high pressure job and it's scary feeling as though you are mentally "swimming in mud".

My workplace allowed me to work from home 2 days a week which reduced the fatigue from travelling an hour each way to work in the city. I retired in Feb this year after opting to take my remaining long service leave on 1/2 pay for 9 months. That gave me the opportunity to consider whether I should go back to work or retire. I chose the latter because I was 65 by then.

Sudoku is really good brain exercise and I regularly do puzzles.

Honeybun
Mon Sep 2, 2013, 01:19 PM
Cheryl I love puzzles too, but I prefer letters rather than numbers. A good game of scrabble for me.

Honey <==== dreams of retiring to Margaret River

Chirley
Mon Sep 2, 2013, 08:50 PM
I have Scrabble and Sudoku on my iPad. Keeps me sane in hospital.

Glenda H
Tue Sep 3, 2013, 08:24 AM
Cheryl I love puzzles too, but I prefer letters rather than numbers. A good game of scrabble for me.

Honey <==== dreams of retiring to Margaret River

I don't like Sudoku or numbers. I like cryptic crosswords (provided they aren't too way out). I should get a book of crosswords for in hospital. I don't have an I Pad.
Glenda

Honeybun
Tue Sep 3, 2013, 09:13 AM
Try these for something different. I had work obsessed doing these a few years back. Some are easy some hard. Think books, sport, geography maths anything really. Tip to start think of obvious ones first, then look at not so popular letters like Z or J.

24 H in a D means 24 Hours in a Day, what do the rest of these mean?


26 L of the A
7 D of the W
7 W of the W
12 S of the Z
66 B of the B
52 C in a P (WJs)
13 S in the USF
18 H on a G C
39 B of the O T
5 T on a F
90 D in a R A
3 B M (S H T R)
32 is the T in D F at which W F
15 P in a R T
3 W on a T
100 C in a R
11 P in a F (S) T
12 M in a Y
8 T on a O
29 D in F in a L Y
27 B in the N T
365 D in a Y
13 L in a B D
52 W in a Y
9 L of a C
60 M in a H
23 P of C in the H B
64 S on a C B
9 P in S A
6 B to an O in C
1000 Y in a M
15 M on a D M C

No cheating! lol ;) Have fun.

Chirley
Tue Sep 3, 2013, 07:31 PM
I like cryptically too but no good at the toughies. I feel very bright if I get one answer in the Times.

Glenda H
Wed Sep 4, 2013, 08:50 AM
Try these for something different. I had work obsessed doing these a few years back. Some are easy some hard. Think books, sport, geography maths anything really. Tip to start think of obvious ones first, then look at not so popular letters like Z or J.

I've printed out the page for later. :)

Greg H
Thu Sep 5, 2013, 05:51 PM
Greg,

industry jargon, predictive text, my ignorance?

I recall that sometimes it would the crunch day when I am supposed to be laying oHandi quilter quilting frameut the paper and my wife would come into my office and scold me because I was on Marrowforums again.

Chirley,

That's hilarious! I should proofread my posts. I think that nonsense was caused by an accidental paste of a phrase I was Googling. I've been helping my wife look for a long arm quilter.

Take care!

Greg