Post by MPN-MATE Admin » Wed Jun 03, 2020 11:10 pm
Evening all...
This is one of those Posts, that in some ways I would much prefer not to deliver...
The take home message from this study suggests:
"MPN patients, are at 'Twice the Risk' of contracting pneumonia or another respiratory ailment, according to this most recent study"
However, being in this current CV-19 Climate, I believe that all of us MPNers, need to understand some of the reasoning behind why we might be more vulnerable to a virus like CV-19.
This information is timely, because what it is really telling all of us, is that we all MUST remain vigilant a while longer, (for the present), and to both protect ourselves, and our loved ones.
Please all stay safe & take great care of each other...
Thanks for this Steve, very interesting but also very worrying, as I might have to come out of lockdown to look after my grandchildren as my daughter is going to have treatment for a rare bone cancer called Sarcoma. So wonder if I might have to ask for the pneumonia jab along with the flu one from my Doctors this year, have never been offered before but have now changed Surgery to a new one.
Once again thank you making us aware of the problem.
Yes, that was one of my reasons for NOT wanting to Post the article...
However, that might've be irresponsible of me as well?
The 'Take Home' message, just try to take as many precautions as we can throughout this challenging period.
Wear whatever safety equipment that is required, (such as a mask), and use hand sanitisers at all times, while endeavouring to maintain our 'Social Distancing' as best we may...
... And only be out there for as long as is required or necessary...
This is basically what I have been doing now for some time, as I am also my immobile 84 yo mother's full-time carer, (although she is forever informing me that she doesn't need any help
Naturally, I do all the shopping and arrange to cater for all of her needs as best I can... It's definitely challenging at times... but so far so good...
Hi, I was automatically offered a bronchitis jab after flu jab (about a week in between) this year so perhaps it would be better to at least try to abate infection. Little ones are a bit difficult aren't they. Had our family round (know shouldn't have but was going insane!) and was surprised that little Flo wasn't wanting her normal cuddles.
Your situation is difficult but I think I would just dive in and look after the little ones, your daughter will definately rest easy knowing you are doing that. My thoughts are with you, wishing you both well x
Had the Pneumonia jab this afternoon, spoke with Haematology first and they said I must have, and also take all the right precautions when with the grandchildren masked and gloves and wash cloths when home. I will adhere to this, not sure our little Wren will like me wearing it, but going to draw a smile on it😃 my grandson is used to these safety measures being as he is back at school and the teachers have the masks on.
Thanks for posting this article. It seems to beg many questions.
I’d certainly be interested to hear what Prof Harrison and other leading MPN experts here think of the findings. (Maz?)
It would be good to know about and understand the subtleties in this study as well as the study’s limitations. And as we know, not all MPN patients are equal. And moreover many MPN patients are not on cytoreductive drugs.
I can understand your reluctance about posting this article and it’s important to get the whole story in context before people become unnecessarily anxious.
There is so much about COVID we don’t understand and it would be useful to know where this study might increase that understanding - or not.
Thank you so much for sharing. This is very interesting and it is good to be informed.
Interesting, like Ebot said, that not all MPN patients in the study were equal in acquiring disease.
I wonder generally if there is a link between the presence of genetic mutations/MPNs and a higher tendancy towards acquiring lung infections/conditions? How many of us are more prone to bad chests each winter or have had bad doses of Whooping cough?
Vigilance is certainly important as you say, going forward.
There have been some studies in the past that might suggest a range of different vulnerability levels based upon blood types... (However, these are still only theoretical at present).
Obviously, the healthier we are able to maintain ourselves, the stronger is our constitution to fight off unwanted infections, however, due to our individual MPNs, some of us are obviously at greater risk than others...
Hence, my suggestions about remaining patient & vigilant for a while longer...
Hi Steve, thanks for keeping us informed with this research article. Much appreciated. Interesting for me with regards to pneumonia as my GP in March following on my recent ET diagnosis asked me to check with Haemotologist at my next appointment if is it ok for me to be given, flu vaccine, pneumonia vaccine and B12 injections. I have been getting flu vaccine annually since a severe respiratory virus in 2011 but nothing else.
My appointment with haemotologist was cancelled due to covid restrictions. He did kindly call me unexpectedly for a chat but unfortunatly I wasn't prepared with any of my questuons including my GPS above query . My next appointment is scheduled for the end of August. Would you or anyone know are the pneumonia vaccine and B12 injections recommended for mpn patients. Take care and keep safe, E
Unfortunately, I am just another patient here, and while I may have my own thoughts concerning how I apply this information to my own situation, I would not presume to know the best advice for others...
As many of you already are aware, we are all so unique, and all have a different set of variables at play within our own biochemistry.
None of us have exactly the same MPNs, and therefore, the only people qualified to advise you is your own medical team.
My GP consultations are now done over the phone, although I still attend a medical centre for my bloods, and then my GP forwards me the results.
Wish I could be more help, but generally speaking, people already receiving flu vaccines are mostly being advised to continue to do so, in most cases... But I would still check w/ your medical team...
Hi Steve, it looks like hospitals here may be open by August so I will make sure to have my list written out for my visit including question on pneumonia vacinnation.
The understanding and knowledge of MPNs I for one, am gaining from this site and research articles posted is definitly helping to improve my day to day life and also, hopefully my longterm experiance of this disease. Keep posting. Thank you and best wishes to you and your family, E
I understand that there is a distinction, relevant to MPNers, between "live" vaccines and "non-live" vaccines (the non-live ones may be OK?) but this is a matter on which you need expert medical advice ... I hope you can get it soon!
Hi Jak2ET, thanks for your explanation of vaccination types re mpns. All additional info helpful to have when I visit hospita next with my list of questions for my post diagnosis and post covid consultation
Thank you for posting this informative article, yes it’s worrying, frightening even. However in my opinion knowledge is power, and we certainly do need to remain vigilant.
I am ET, JAK2 +, MF, PV with AXSL1 mutation, very recently been under scrutiny of the Respiratory Team, to be absolutely sure I can take Ruxolitinib.
Purely because I had Tuberculosis aged 20, sadly many years ago..
In April I was fortunate to see a Professor of Respiratory Medicine and he was very much of the opinion that I most certainly am at risk of Covid19, he didn’t sugar coat it for me, he stressed how those of us on this journey Must Be Careful.
I asked if he felt that I in particular, due to my medical history fall into this category?
He was adamant that having MPN makes me Very Vulnerable.
I have been cleared for Ruxolitinib, I will start the drug late August when my Haematologist can monitor me regularly face to face and my appointment with the good Professor Harrison will have taken place 🤞
As we have seen many people who have sadly succumbed to Covid19 have suffered great issues and damage to the Respiratory System.
That information was reiterated by my Haematologist mid May.
Sadly I am in the UK and our figures are very high taking into consideration the size of the UK and population.
Per Capita it makes for Sad Reading
Our NHS has and is fighting this dreadful Covid19 with the handicap of Not Having the Essentials to Care for People readily available at times, awaiting help from Countries that dealt with Covid19 more efficiently and prepared themselves in advance.
We sadly sat on our hands for several weeks, our leaders should have been preparing, it was known what was coming !
Our British Industry turned to manufacturing supplies of Essential Equipment for the NHS thankfully..
To see our Medical Fraternity buying PPE’s from DIY Stores, and the great response from individuals including very young folk making Visors on 3D Printers, Sewing Groups, Individuals making Hospital Scrubs, makes me both Proud and Sad.
My contribution to this endeavour was Fabric by the Roll..
As a RGN I’m Sad, Angry and Proud that we are doing everything that can possibly be done to help..
The Biggest Contribution we the public can make is to remain Patient, Careful and Protect Ourselves and Others by wearing Masks when shopping, and as you so correctly said, Hand Hygiene is Essential..
I live in Weston super Mare Somerset, a Seaside Town with a large community of Retired Folk and a huge contingent of Nursing Homes, which is wonderful for folk to end their days in a nice area etc..
We were amongst the lowest in Covid19 deaths until 10/14 days ago when very suddenly cases of Covid19 started to rise fast..
Weston General Hospital was Closed on the 24 May due to a sudden surge of Covid19 and remains Closed as I write this.
We have Doctors who tested Positive, and Nursing Staff Asymptomatic so forth.
Weston now has a Testing Station set up in a Coach Park, prior to this situation Bristol Airport had the only local testing station, getting a Test Done was like winning the Lottery Millions 🙁
Now we have 2 Testing Centres in a 20 mile radius, speaks for itself I believe....
Meanwhile our Medics and Nursing Staff, Public Health are working endlessly to get our Hospital Open.
I spent my whole working life in this Hospital which I’m immensely proud of.
Our Community are being hospitalised either in Bristol or Taunton.
Thus meaning loved ones have to travel to visit their relatives some 25/30 miles daily each way..
Obviously those with Covid19 Do Not have Visitors.
We have lost High Profile Doctor’s wonderful Minds, Nurses to this Disease, Every Death Counts, especially to their Loved Ones..
The Reason Weston is in this situation present day is Us, the General Public.
Throughout the Glorious weather we have had throughout April and May, locally we have tried hard to be careful ..
The moment Government stated folk could travel a distance, but Not Stay Overnight the Beaches that we’re empty during April and early May with Sunshine all day, became packed with Day Trippers and definitely Not 6 ft apart from other groups.
Our Public Toilets are Closed as are the Cafe’s / Restaurants.
A few Fish & Chips Outlets throughput the town and surrounding area are open with Social Distancing paramount..
The Visitors left a trail of Rubbish including Nappies/Pampers etc and sadly folk using Bushes as Toilets..
The town I live in is a warning to how quickly things can change.
We were amongst the lowest in the UK, now we are Bright Red as a Danger Zone & huge spike in Coronavirus Cases & ultimately Deaths...
We have made the National News Headlines for the Wrong Reasons..
I’m confidently certain that other nice areas such as Dorset, Devon, Cornwall, Lake District have seen the influx of visitors..
I totally understand the need to get out, we as a family would like to do the same..
But I’m hopeful that our Death Toll doesn’t double with a huge Second Wave of Covid19.
That is why we Must Remain Careful and Patient use everything we can to protect ourselves and others by staying safe, using the Hand Sanitiser throughly until we can really wash our hands properly.
I have done our Grocery Shopping at the Supermarket just once a week using all these measures available to me, on return to my home I use Water with Bleach to wipe everything I possibly can before putting in the larder or fridge. I then Bleach all Surfaces down that I have used.
I shower, change clothing which goes straight into the washing machine.
Yes I’m classified as Extremely Vulnerable as are we all with Immunosuppressed distinction 😊
I gave up after 2 weeks of trying to get a slot with any Supermarket for online shopping..
I gave up and do it myself, with precautionary measures and choose various days and times to go into the Supermarket.
Wearing a mask was a Majority Vote, suddenly we were the Minority, folk became bored and complacent.
Now it’s Masks all round, folk can see how quickly Covid19 took hold in Weston super Mare.
So Steve my friend I agree with you totally on the Dangers to us MPNers on Respiratory Disease and the need to be patient just a little longer.
Here in the UK my homeland of Wales along with Scotland are much more cautious with regards to lifting the Lockdowns..
England once the Door was Ajar it was well and truly pushed Wide Open by those in need of Beaches and Countryside...
We are in need of seeing our grandchildren, we didn’t celebrate our youngest grandson’s Third Birthday 6 th April.
We have another grandson celebrating his Fifth Birthday on the the 7th June.
We will FaceTime with him, yes we are all suffering in different ways.
You are responsible for your Mum’s well being, I believe you are doing a wonderful job of it.
My four children are adults with children of their own.
Our responsibility to them is to stay Safe to help keep them Safe.
Nothing can compare with having a grandparent/ grandparents die during this Pandemic..
Our 10 year old grandson Noah, reiterates when we FaceTime for Pops and me to Stay Safe and his three year old brother Theo shouts the same advice.
Rather sad to be hearing that from small boys but true..
Our eldest grandchild is Lillie aged 20 years, at University in Bath studying Law, is working 2 days a week in a Retirement Village not far from Cheddar Gorge, we haven’t seen Lillie or her brother for 12 weeks.
Lillie absolutely terrified me 10 days back to discover the particular house she works in at the Centre has had 7 deaths and 7 residents in that one house with Covid19..
As her Gran and Nurse I would prefer her not to be in harms way.
However she tells me she loves caring for the elderly and she will not leave the residents..
Her heart is in the right place, I simply remind her frequently to protect herself whilst there..
Her bedroom has been turned into a bed sit/ studio arrangement at home.
Our son and wife have turned over the family bathroom to Lillie exclusively, her brother is 18 years and he uses his parents En Suite for Showers and downstairs Cloaks for a Loo during the night if needed.
Ultimately Lillie is protecting her family whilst working with the sick and dying.
We have Not seen Lillie throughout or the family apart from FaceTime.
Much too risky to me and hubby, a sacrifice I promise you, Lillie is our only Granddaughter with 4 Grandson’s spread around our 4 children..
It’s a Sacrifice we Must Make until the situation improves immensely..
So far our family has Not been Touched by Covid19 and I pray it will remain that way..
I made a statement to my husband, where I said, “ I’m glad my mum and her brother had passed away some years ago” both in their early 70’s..
They wouldn’t have stood a chance with Covid19 both had COPD a nasty Respiratory Condition, I nursed my mum and uncle through many episodes of Pneumonia etc..
Knowing how Covid19 attacks the Lungs amongst other Organs, I’m thankful I haven’t had to witness them dying without me at their bedside..
I was with both my mum and uncle at death, I was laying cuddling my mum on her bed as she was dying.
Mum didn’t know she was leaving us, for her it was simply another bad Chest Infection..
Eighteen months later I was holding the hand of my uncle her brother as he left this mortal coil..
For all those that have lost loved ones, my heart goes out to you.
To know you couldn’t simply be there to hold a hand and talk to them is heartbreaking..
As a Nurse I am so glad my fellow Nurses held hands and relatives spoke to their loved ones over a Phone, IPad etc..
Hearing is one of the last senses to remain intact and the dying Will have Heard the Voices of those they love..
When I did the final honours of laying the body of my patients out, I talked gently to them as I washed them etc, respect and precautionary in my eyes..
So for my part throughout this Pandemic I and my family will take all the precautions needed to help defeat this dreadful disease.
During this heat, I would love to swim and cool off.
Beaches are off the menu for us, I have considered early morning wild swimming in 2 locations near Bath.
6 am perfect for it, but I have to drive some 30 miles and if others were there early with the same thoughts it wouldn’t be sensible.
So a Cool Shower it is for now, I simply have to be patient..
My eldest daughter is a Manager at Bristol Airport and she is now furloughed until September, originally it was end of June..
That speaks volumes to us, Sarah’s role is Staff and Passengers movement’s throughput the Airport!
Steve my sincere apologies for my long reply, I wouldn’t dream of hijacking your post
I’m simply 100% with you and the Dangers of Issues we Must try to Avoid dear friend..
Hope All our MPN Family are Doing Okay and Staying Safe, we Can Do This Guys..
All the Best to You All as Always
Maria 😘
PS.
My daughters especially have requested to do our shopping, I have Refused.
I’m not going to put my children in harms way doing our shopping.
Covid19 doesn’t discriminate between young and old.
My children have children that need them, I do my shopping....
Maria, this makes for such good reading, and really does make good sense.
Even these BLM demonstrators in London yesterday were I felt not needed in these times no social distancing was evident, and the poor police were overwhelmed with the volume. I know everyone is entitled to demonstrate, but in these times of Covid 19 what germs will they take home to their families I wonder how they would feel if they gave it to one of their loved ones.
The MPN research foundation article on Covid by one of the specialists Dr SCHERBER alludes to this but states 'It is true that we know that some viral infections can be more frequent and/or more severe in those with MPN-- more in MF, somewhat more in PV, and less in ET. However, if we take the flu (which is also a viral infection) as an example, I have only known a few MF patients ever have the flu severe enough to be hospitalized and only one that I can think of that has passed from it. I have known no ET or PV patients who have ever needed to be hospitalized from the flu. Thus, it stands to reason that most patients will be okay.'
Thank your for posting this. I am 56 years diagnosed 3 years now with PV jak 2+ and have been fighting a bout of Bronchitis since April. I have been on antibiotics for a straight 14 days to no Advil so now I am being referred over to a pulmonary doctor for a breathing test. I had a chest x-ray done that was normal thank goodness but I am still having a tough time shaking this. I also have severe sleep apnea. I will be seeing the same doctor that has treated the sleep apnea. One of the things I am having an every harder time with is I watch all 4 of my grandchildren and am struggling that I may not be able to do this anymore. Any suggestions would be greatly appreciated.
I am sorry to learn that you are struggling w/ all of this at the present.
I do understand, how much of these CV–19 situations, can be very difficult to have to deal w/. However, the CV–19 situation does mean that if we are ill in anyway, that we are supposed to isolate ourselves, to hopefully prevent any transmission, in case we have become infected.
My first question would be, "Have you been tested as yet for CV-19?"
If not, could you arrange for yourself to be tested?
It is extremely difficult, I know, not to be able to hug and kiss our loved ones. However, placing ourselves and others into even more compromising situations might not be advisable while any of us might be suffering from any sort of respiratory condition...
Thanks for posting this. I think it confirms something we already know re. the broader impact MPNs can have on our bodies. It is not just about hematopoiesis. I suspect the authors are right to look both at the MPN disease process as well as its treatments (toxicity) as the reason for the increased risks seen for MPNers. as you pointed out, our individual MPN profiles can be quite unique, so it is hard to generalize about much of anything.
I agree with pontygirl that knowledge is power. Feeling empowered to manage the MPN is critical, particularly when tackling more challenging issues. Whethr good news or bad, accurate news is always appreciated.
Thank you for your response! No I haven't been tested. I have been to several doctors and was never sent for one so I guess I didn't meet the criteria or testing wasn't available. I will be rethinking that now! I agree I would never want to affect anybody with what I have had. When I saw your post it reminded me how much more I get sick then when I was first diagnosed with PV. I keep struggling with the thought that I may have to quit watching my grand kids because of this. Sometimes this disease is very unfair!!
Yes, some of our decisions these days are much tougher, and at times we must make the odd self-sacrifice for what we might call, the most desirable reasoning...
I am positive that I would not want to harm my grandchildren either, nor they me...
Thanks for this information. We are best to be informed.
I have just come out of hospital after 4 days. I posted here looking for some information and support ("Heart inflammation and PV? Help!") as originally it was thought I was having a heart attack, including having raised troponin levels. After a barrage of tests, final diagnosis was pericarditis (probably viral infection) and Community Acquired Pneumonia. I was quite shocked as I have barely been out of the house since February. So this article rang bells for me. I also think that inflammation has a large role, as is highlighted in the article. The conclusion from the hospital was my heart is fine - something else is going on. This bit in the review in particular seemed relevant: “Activation of stem and progenitor cells may lead to release of cytokines and growth factors, e.g. pro-inflammatory and pro-fibrotic cytokines, which may lead to chronic low-grade inflammation,” they write. “Such stem and progenitor cells can be deposited and activated in the pulmonary compartment affecting the lungs and/or pulmonary defense mechanisms against microorganisms.” I also had high inflammatory markers while in hospital.
There is so much that is unknown about the implications of MPNS, especially the effects of inflammation and that cell production isn't normal.
Unfortunately I have been told that with PV we ought not have Zostavax vaccine for pneumonia as it is a live vaccine, but only Shingrex, which isn't available where I live. So I remain exposed.
Any news we can share to help each other is always of value. Thanks.
My apologies, you are right. I am very aware of that. I can only put it down to PV brain fog. So sorry for any confusions, and thank you for the pick up.
... And I've had the Pneumovax 23 vaccination myself. So I'm wondering even more how I ended up with Community Acquired Pneumonia. I clearly have a lot of questions for the next doctor's appointment.
It's important to remember that most all of us are still in the dark, concerning a great many aspects and implications in relation to having any type of MPN, and the situation only becomes more complicated and intriguing during our current CV-19 adventure...
It's a real roller-coaster ride most of the time, never a dull moment is there?
However, keep self-advocating, and always keep asking questions, and if you do NOT feel like you're receiving the attention and answers you not only deserve, but are entitled to... then find another MPN specialist, who might better suit your needs...
Guys, these are chronic illnesses, and we may have them for a long time. Hence, we absolutely MUST be able to work effectively with our medical teams, and if we cannot... we must change them, in my view...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Sleep Apnea and mpns 
Yesterdays Living with MPNs day
