Can you work with chronic itp?

[Gems82]

Hubby has had itp for more than two months now, lots of drugs and nothing working. He has another 4 months of full pay at work and then will be on statutory sick pay. We are now in the planning stages of me having to go back to work full time (very reluctantly by him - he wants to be able to provide for his family). Is there anyone who works full time with single digit platelet count? He is a machine tools engineer and we don't know whether his employer will allow him to go back to work if he can't get his count high enough? Bad enough worrying about his health don't want money worries to trouble him too.

[Robert1959]

At 2 months unfortunately your husband is probably only in the early stages of his ITP as generally it takes in excess of 6 months for an adult to get their ITP under control. There are 3 categories for the illness; Acute: which lasts less than 3 months and usually only found with children, Persistent lasting between 3 - 12 months and Chronic where it lasts longer than 12 months. I was lucky to fall into the Persistent category and had single digit counts for many months. I have my own consultancy business and did not work for 4 months due to the severe symptoms and the side effects of the Prednisone and Dexamethasone which made me very forgetful. When I was discharged from hospital I was given strict instructions not to injure myself and definitely not to bump my head. If your husbands work is more labour intensive I would have concerns about the risk of injury and I dare say that your employer would not want to take on the risk. Having said that I am sure that there are others who have continued but it just depends on the nature of his work and I would think it best to take advice from his doctors. There is a medication I took called Tranexamic Acid which assists in the clotting process and maybe he should also consider this in case he does sustain a cut.

Robert

[Rockette62]

First thing that you should really think about is the safety issue. How safe is it for him to work where he does with a single figure count. I have had times of one income and it is extremely difficult but sometimes you have to realise the impact you could have on others. I understand him wanting to provide we all do. If you can work full time it may give him time to get his health under more control and allow him to return to work healthier.

Often these things allow us to discover alternatives to the way we were living that we wouldnt have thought of before. I'm exploring new income sources at the moment as I wouldnt feel I can be a safe truck driver with the side effects of treatment and ITP.

Best of luck to you all

[sailor]

Hi Gems82. ITP is a curse for many. I have had it for over 20 years. I am now nearing my 71st birthday, still working and travelling abroad for work and holidays. 2 years ago had quod heart bypass which has caused me more problems than the ITP. Providing he is not a bleeder, just a bruiser, and providing he is mindful of the problems of being a sufferer, then go back to work, be cautious and get on with your life. Suggest you obtain an emergency card from the ITP Support Association and perhaps some of the info sheets from there as well. They may help to allay employers concerns. If they have any questions, suggest they contact the support group who will provide information and help to them. Good luck and remember, you can live well with this condition.

[Gems82 in reply to sailor]

Thanks for advise I'm definitely going to join the itp support association and get all the fact sheets as we've been told his employers will be organising a home visit soon. Want to be armed with as much official information on it to give to them so they are not frightened but supportive and then we can get him back to work and back to normal life whether he goes into remission or not. It's rituxumab next week now as everything else before including romiplostim and eltrombopag hasn't worked. Thanks

[Hidden in reply to sailor]

I appreciate this sound advice. I have so many chronic illnesses and my Platelet count last check was 59. It had gotten to 29 and I had nplate injection and it landed me in the hospital for a week for a severe allergic reaction. I had a job interview yesterday. It is for a billing specialist position. I was feeling great about the interview. I hope to get an offer Monday she said. We shall see. They said they are very understanding about health. I told her about my husband suffered an aortic dissection type a on Christmas Night. It was a long 12 hour surgery for him. He was in ICU until January 3. That has been very stressful on me as well. I had to stay with him and our son. I had to drive back and forth from Memphis, (Methodist University where they saved his life) he had the ICU Psychosis for a while and he has some short term memory. This is a man that is in great health other then minor blood pressure. He has to keep that under control now. They had to repair his valve and a vein. We have an 11 year old miracle child who is a smart principals list and very talented. He is a blessing. He helps me. I am trying my best to take care of him, yet I have to take care of me. I also have no thyroid and have hypothyroidism at times. My spleen is pushing into my ribs causing intense pain and it is up to 20 cm. I want to go back to work, but don't know if I can with all my chronic illnesses. NASH (Non alcoholic stetohepatitis ), Gastroparesis, Enlarged Spleen with the ITP, Peripheral neuropathy, just to name a few. None of the doctors know what to do except "Manage the pain". Some days are better then others. I guess I can try to work. I have a ticket to work from SS. Thanks for listening. We believe the Grace of God, prayers and caring humans from our family, church and friends being there pulled us through this crisis. Even his job as a pest technician has been wonderful. I thank God every day he is alive and with us. Sorry just realizing all that we have been through since Christmas night. He doesn't remember Christmas day and it was a beautiful day up until 8:30 when this happened. This is the same thing that happened to John Ritter except he didn't make it. Blessings to you all. Thanks for listening.

[Karunika]

Take it easy and advise him to be back In normal routine, more you think about the problem, more are the worries, so be normal and start your life with little diet changes, exercise and medication and he needs to be more careful, more disciplined.....

[Vivante in reply to Karunika]

Exercise is good, Avoid sit-up's, press-up's. Avoid any position where the head is lower than the heart. Keep your feet covered, wear safety socks, socks with sticky boots at the bottom, Make sure your exercise instructor is fully conversant with the risks, make sure there is a chair near you or stand close to a wall. There is a mass of info out there. I had to find out the hard way, nose bleeds increased, blood spots in my eyes. Too put it bluntly I almost died.

Keep safe.

[Nespinoza]

Hi yes I have worked with single digits but when that would occur I would get called by my hemo to go straight to the hospital skip the emergency room and straight to be admitted..... it's very risky to work with a very low count.... but see I would be wrking in a office environment. So that would be different from what your husband does... is your husband taking prednisone? Because usually that's wat a lot of hematologist start with then he or she may try other medication... I seem to do well with IVIG but every body bodies work differently with different types of meds best of luck with your husband

[RobertSp]

I have had ITP for 35 years. I was in the military at the time of diagnosis (but mostly office work). I was on light duties when the counts would go below 10. This included staying home when possible. I went into remission after a splenectomy but that lasted for about 4 years. I found that the prednisone was a bigger problem that the ITP itself. But I eventually continued on to have a 14 year career in the military including a combat deployment. That said, the early times are the most difficult and care must be taken as ITP can be deadly. I was blood type matched with other soldiers in case a transfusion was required while in a combat zone. So take care and it is very possible to have a future working and productive life.

[Gems82 in reply to RobertSp]

Thanks your reply really impressed and uplifted my hubby he needs to know others are living just fine with itp x

[owenm]

In a responsible world,

there is no reason why he should be employed in a job which has risks not controlled by the employer. Should the employer deem that the risks to him are greater than those to his colleagues, then they should put in place measures to protect his health and safety or, if agreeable, re-task him to a role more suitable to his current health.

Anything which discriminates against him is not in anyones best interest.

My experience of this is as a self employed individual. I took it upon myself to go back and study a degree in order to change career, hardest decision I've ever made.

As my own employer I felt that I could no longer sustain the work duties I was employed to perform in a safe and tolerable manner.

I have managed to get my consultant to back off, and it's been nearly a year off all medications now, with a count fluctuating between 12 and 34.

I was leading kayak trips as a summer job on the west coast of Ireland, and seemed to come out ok!

Hope that helps

Owen

[Gems82 in reply to owenm]

Thanks I really appreciate you taking the time to reply and I have showed my husband it's been brilliant discovering this site so I can show him how others are cracking on with their lives. X

[JasonJ]

I haven't missed one day at work due to my ITP even with counts in single figures for over 2 months in the beginning. However I am not at risk in my job of physical harm.

I also think his employer should be able to give him duties that do not involve any risk of causing bleeding whilst the count is so low.

What drugs has he tried, is it just steroids?

There are so many ways of controlling ITP and its all a matter of trial and error, so I am afraid it can take time to get it under control.

Good luck

Jason

[Gems82 in reply to JasonJ]

Thanks. We're going to organise a home visit from his employers to discuss his return once he has completed the next round of drugs which is retuximab whether his counts go up or not. He was admitted to hospital at the beginning of Nov with rash and blood blisters in mouth. He was initially given prednisolone (which he is still on, but a smaller dose), then platelet transfusion, then immunoglobulin transfusion then myfortic (combined with his cyclosporine - he had a kidney transplant 17 years ago) this was at the same time as injections of romiplostim and currently he is on eltrombopag, and due to start rituxumab in a week as platelet count still in single figures. What worked for you? Did you go into remission had count has stayed high or has it been up and down like a lot of others who have told their story on this site?

[JasonJ in reply to Gems82]

Wow, they really went through the treatment list fast!

I have tried everything you listed except romiplostim.

Currently on Electrombopag 75mg and steroids 15mg combined. This holds my count at about 85, although I dipped to 33 last week, I knew my count was low when I accidentally bit myself gently whilst chewing and received an instant huge blood blister in the mouth. I have noticed salted foods make it even worse by the way, so lay off salted chips!

I can't stay on the drugs for ever so a splenectomy is on the cards later this year

[RobertSp in reply to Gems82]

I am a little surprised that they still do platelet transfusions. It makes sense if the person is actively bleeding but for the long term ....? Normal platelets in a normal person have a life time of about 48 hours. I would expect that the body would get rid of foriegn platelets even faster.

[Gems82 in reply to RobertSp]

The platelet transfusion was to try to get them up temporarily while they gave him a bone marrow biopsy as they were concerned about him bleeding because of it sorry I didn't explain that bit!

[Hidden in reply to Gems82]

People don't bleed with a bone marrow biopsy so there is no need to get the count up. It sounds as if the doctor isn't experienced with ITP. If it were me I'd find another doctor. The treatment regime has been a bit odd too. Try one treatment at a time. No need to stay off work either. Had I stayed off work when counts were low, I'd been off for at least 7 years which I could never afford.

[Hidden in reply to RobertSp]

Normal platelets last about 10 days.

[Suntied in reply to RobertSp]

My body goes thru plasma but if low they send me for a transfusion to keep me from going to low

[RobertSp]

Normal platelets in a normal person last about 48 hrs. The time is shorter for those with ITP. With low counts the bone marrow biosy can cause bleeding.

[Manchopot]

Im a student you know it's hard for me... and im struggling with my tiredness.. especially when im listening what my teacher said i always sleep sometimes i always absent... going to the class.. due to fatigueness.. but if i dont go the class.. i will expelled from the school... what can i do life must carry on..