MATEs FORUM

Morning all...

Not that I wish to be the bringer of any more harsh news concerning the COVID–19 pandemic that remains prevalent to all our existence at the present. However, this article from America's CDC organisation, discusses the findings of some rather large scale surveys concerning CV–19, and our various different blood types.

To place a simple caution upon things, "If we know that our Blood Types is one that increases our CV–19 risk of severity, then we must take action to protect ourselves, as best we may..." in my view...

Please see the article pasted below:

Stay safe & well

Steve


OCT. 14, 2020

Your blood type may predict your risk for severe COVID-19
(HealthDay)—There's more evidence that blood type may affect a person's risk for COVID-19 and severe illness from the disease.


The findings are reported in a pair of studies published Oct. 14 in the journal Blood Advances.

In one, researchers compared more than 473,000 people in Denmark with COVID-19 to more than 2.2 million people in the general population.

Among the COVID-19 patients, there was a lower percentage of people with blood type O and higher percentages of those with with types A, B and AB.

The findings suggest that people with A, B or AB blood may be more likely to be infected with COVID-19 than people with type O blood. Infection rates were similar among people with types A, B and AB blood.

The other study included 95 critically ill COVID-19 patients hospitalized in Canada. Patients with type A or AB blood were more likely to require mechanical ventilation, suggesting that they had greater rates of lung injury from COVID-19.

More patients with type A and AB blood required dialysis for kidney failure, the study added.

The results suggest that COVID-19 patients with A and AB blood types may have an increased risk of organ dysfunction or failure than those with type O or B blood, according to the researchers.

They also found that while people with blood types A and AB didn't have longer overall hospital stays than those with types O or B, on average, they were in intensive care longer, which may indicate more severe COVID-19.

"The unique part of our study is our focus on the severity effect of blood type on COVID-19. We observed this lung and kidney damage, and in future studies, we will want to tease out the effect of blood group and COVID-19 on other vital organs," said study author Dr. Mypinder Sekhon, a clinical instructor in the Division of Critical Care Medicine at the University of British Columbia in Vancouver, Canada.

"Of particular importance as we continue to traverse the pandemic, we now have a wide range of survivors who are exiting the acute part of COVID-19, but we need to explore mechanisms by which to risk stratify those with longer-term effects," he added in a news release.

REFERENCES

CDC
https://www.cdc.gov/coronavirus/2019-nc ... ptoms.html

Ryan L. Hoiland et al. 2020. "The association of ABO blood group with indices of disease severity and multiorgan dysfunction in COVID-19"
Clinical Trials & Observations Blood Adv (2020) 4 (20): pp. 4981–4989.
https://doi.org/10.1182/bloodadvances.2020002623

Hi

I found this a very interesting read thank you

Hey Linda...

Thanks Linda...

You are most welcome of course...

Speak more soon...

Steve

Hello

I have appointment tomorrow with my haematology nurse specialist for results of my most recent blood test. I am a little anxious in case they tell me I need to start Hydroxy . I realise from reading various sources the need for a Doctor who is an expert in this Field. So, I contacted my GP and asked for a referral to Professor Claire Harrison in London who is top of her class and was told disappointingly no . Basically he said, I would need to go through my haematology nurse , I feel like I’m on a no hoper!! My symptoms are awful fatigue, pain , burning in my hands and feet. Has anyone got any suggestions please? Also my Nurse insists that this is the first line of treatment for some one my age

Hey Linda...

YES!

Definitely, go and see another GP, and ask for a Referral to see Prof. Harrison. They have no right to say NO to you...

If I have made you anymore anxious, please accept my most profuse apologies. I am merely trying to be helpful...

However, HU, has many reasons why I cannot, no, will not agree with her statement, as there is just too much damning scientific evidence to the contrary etc... Generally speaking, this is a money issue, because HU is so inexpensive and Pegasys. is likely the opposite etc.

In any event, just see another GP, and do not take NO for an answer ... we ALL have to be our own best advocates at the end of the day Linda... and don't worry, it does get easier to demand the right answers ... I have been doing it for nearly 5 years now...

Best wishes

Steve

Hi Steve

No you have never made me anxious . I’m very pleased many of us have got you as a true ambassador for these dreadful disease. I don’t feel alone now I have found mates and mpn voice. It’s brilliant to know we have people especially like you and Hunter who have an extraordinary amount of knowledge. I will try and get a second opinion, I do not believe I’m in good hands.

Very best wishes to u

Linda

Hey Linda...

That's a wonderful and warm compliment Linda, thank you so much... Incidentally, Hunter's real name is Steven too...

And you are correct he is very well informed w/ all he has had to contend w/... He really has had a rather tough time of it all...

As far as you are concerned, be like the Nike slogan, and "Just Do It!"

Hunter I am sure would also reiterate how important it is to seek 2nd, 3rd and sometimes more alternative opinions from others... However, having an MPN specialist on board like Prof. Harrison, I believe would solve your problems... Just remember, drugs like HU, are recommended in many cases where the medical systems of some countries does not provide the required and much-needed patient support system, in my view...

Just keep trying to get Pegasys. until you succeed, any GP can provide a Referral to a Specialist! Don't be afraid Linda, it is your right to do so...

Best wishes

Steve

Good morning Steve

Firstly , what a coincidence you and Hunter (Steven) have same first name . To great ambassadors for these horrible diseases. I was pleasantly surprised about my recent blood results. My nurse specialist said my platelets have hardly shifted from 926 to 949, HB 145, MCV normal ferritin 129 and all my other chemistry normal . So sigh of relief I’m not going to start hydroxy . She insists I’m low risk , even though I told her about the symptoms I get . I asked if I could take more aspirin and she said in England we don’t take more than one dose a day . See her again February. Thanks so much for your advice.

Best wishes

Linda

Good morning Linda...

I am happy to hear that you are feeling a tad relieved too...

However, please do keep a close eye on your Platelet levels as they are still quite high, as things go... Knowing your are so high, it does make wonder which 'Driver' mutation it is that you have? I.e. JAK2, MPL or CALR

Do you know which one Linda?

For instance, my Platelets have always been very high, and even now are still in the low 800s. However, that is more expected when one's 'Driver' mutation is CALR Type2, which is known to have higher Platelet values. In my own case, I try to make sue that my Platelets are always staying below the 1 Million marker. Hence, your are quite high...

Nevertheless Linda, I would still be seeking confirmation about whether or not (if & when it might become required?), you can access Pegasys. instead of HU. Definitely less toxic, and less adverse side-effects, in my view...

Linda, as someone that does periodically suffer from very high Platelet regimes, I have also come to learn from my body's reactions when I am experiencing higher than normal Platelets. There are a number of symptoms that become apparent to me whenever my Platelets are ascending:

* Headache
* Mental confusion
* Tinnitus

Try to learn to listen to your body, as I do, and you too might see these Red Flags as the materialise etc...

Oh yes, Only One Aspirin Daily, anymore and you might start having unwanted bleeding episodes,
(& make sure that the Aspirin is 'Enteric-coated') that will protect your stomach wall from the harsh acids etc.

Hope this helps...

Steve

Hello Socrates,

I’ve just read your old message again about listening to your body. My attention drawn to headaches, tinnitus and brain fog in particular , this is happening to me! I’m just getting over covid and I’m so fatigued . My ferritin is low, and I’m on folate that’s low too. On Hydroxycarbamide for masked PV feels like I’m out of sync

Kindest regards

Linda

Hey Linda...

Lovely to hear from you... Although I am sorry to learn that your feeling a tad unwell...

Possibly not a bad idea to have a FBC Blood test completed, (just to see where your Platelets are at etc). I recall that you too once suffered from very high Platelets too...

In any event, it may have something to do w/ it...(?) Or... it could be the vaccine. I noticed that my Red Cell count grew much higher after having had my x3 vaccines...

Or... maybe it's time for you to consider the switch in your Med's from HU to Pegasys'.

Definitely worth discussing all of this w/ your MPN Specialist... have you done so as yet?

As I've mentioned previously Linda, HU & 'Brain Fog' seem to go 'hand in hand', in my view... I could not function at all when I was taking HU... & found it most disturbing.

I wasn't aware that you'd had CV–19 either. Was it particularly bad, in your case? Are you aware of your own blood type? I am now also wondering whether or not CV-19 has anything to do w/ how you're feeling at present (?)

Please stay in touch & let me know how you get on following through on this...

Stay happy, safe & well Linda...

Steve.

Hi Steve,

I see my haematologist on the 7th of April however, I almost called them yesterday I felt so poo. That’s interesting how your red cells grew after 3 vaccinations Yes I think it’s time I had a full count run. HU is not nice I really don’t like taking it but unfortunately I don’t have much option. When I asked them if I could go on interferon their reply was, “we only give that medicine to women of child bearing age ! Also, having covid has made me feel very unwell . As you know Steve from previous conversation I also have PD to contend with . My blood group is 0 positive. I did not realise about HU and brain fog. Fatigue from the disease itself plus HU is a battle. I don’t give in though because there are others just like us and suffering more. I really stay positive Steve which makes me feel so much better . Thanks for your reply and I will keep you posted .

Linda

Hey Linda...

My apologies for my tardy response...

I find your GP's response to going on Pegasys' rather perplexing. Not sure who or if you have a dedicated MPN Specialist? However, if you do, then I believe it might be worth your while investing in attaining a 2nd or even a 3rd opinion from another...

Many of our members, have indeed changed from HU to Pegasys' & all of them suggest that it's a much better solution to their MPN journey...

Katie, was on HU for a great many years & it caused her numerous problems. However, once she finally moved to Pegasys' her life & other HU related adverse side-effects all ceased being an issue any longer... I believe Katie's Med's are x1 per week. Whereas, Mark, is out to once every Three (3) weeks, & his incidentals have never been better apparently... By the way, I believe that Katie is in her late 70s, (& the idea of progeny no longer holds much appeal. )

Anyways, just a thought & suggestion...

Being super Positive is really so utterly important too in my mind too, as you know...

Anyways, stay happy, safe & well Linda...

Best wishes & yes, please do keep us Posted on how you go etc...

Steve

Hi Steve,

Yesterday I had a bit of drama, had a temperature of 38c . My GP was very supportive but, can’t really say that about haematologists. Couldn’t get through to them ! A telephonist
Kindly ran up to the ward and explained my case. I was so frustrated with it all. Yes I’ve been thinking of getting a haematologist who cares and who is an expert on MPN’s. I was watching a good video today from MPN voice about some haematologists refusing to believe the symptoms we present with are anything to do with the MPN because the counts are normal . I know Steve that they will refuse me interferon . Unfortunately for me the nearest MPN expert is about 60 miles from me . I’m going to talk to my GP about it and see about a second opinion. I hope my case turns out like Katie and Mark I really don’t like taking HU .

Kindest regards

Linda

Morning Linda...

38ºC that is way too high... Maybe you still have a touch of CV–19? Did you retest yourself as yet?

Hmmm...? 60 miles is a long way I know, but why not chat w/ Maz about a Phone consultation w/ Prof. Harrison, & ask her to put you on Pegasys?

Ever since CV–19 started, I have been having all my consults by phone...

Anyways, it might be worth a try...But if your temp is still that high... I'd be more concerned about what's causing that first?
Very high temperatures can also cause delusion, so please follow thru on this first, okay?

Take care Linda...

Best wishes

Steve

Hi Steve ,

Sorry for the late reply. My temperature has been ok since I’ve been back on the antibiotics however, my face keeps flushing and a little prickly.I feel so much better than I did at the beginning of last week.

Yes I’m going to discuss professor Harrison in London and professor Sommervaile in Manchester . I feel completely dissatisfied with my present situation. There is nothing put in place for people like us. No support groups no clinical trials no mention of any new drugs on the horizon or for that matter anything approved by the FDA. I feel like I’m stuck in the middle of a big ocean alone without a paddle.

I’ve tested my self and I’m negative.

Kindest Regards

Linda

Evening again Linda...

Glad, that you're not Positive w/ CV–19 again etc... But keep an eye on your temp's just to be safe ...

Linda, we do have support groups, that's precisely what our "Forums" are for, (to fill that void), so to speak... That's also the actual reason why I started MATES, because here in Oz, because it's even less well known than it is over there & in the States etc...

There are always plenty of 'Clinical Trials' (CT) going on around the place, however, unless one becomes included completely in the "Findings" and knows precisely what all the adverse side-effects might be beforehand, then I would seriously caution anyone from placing themselves in harms way, in my view...

Not so long ago, I was going to sign up for a CT that was being conducted globally, (but out of the USA), and when I asked if I could be made privy to all the findings... well the response was a resounding 'NO'...

If I am going to place myself in harm's way, then I would have to be given all the content or it's just 'NOT on", well not in my view anyways...

Stay safe Linda, and try to join us next Sunday night (AEST 18:00), if you're free for a Cafe Catchup w/ people from all over the globe...

Stay happy & well Linda...

Steve

Hi Steve ,

Thanks very much for the really good advice. I have given what you say food for thought and I can see where you are coming from . Is your cafe catch up the 10th of April?

Kindest regards

Linda

Hi Steve,

I’ve just seen confirmation Email for cafe catchup on the 10th of April at 18:00.

Linda

Hey Linda... 8-D

Cool... looking forward to seeing there...

Best wishes

Steve

Hi Steve,

Apologies I never made the cafe catch up too many things going on .

Best wishes.

Linda

Hi Linda...

No problems, there's always another one coming up shortly if you ever feel so inclined, it's all good either way...

This one had people from the UK, Ireland, the USA & Oz of course... Excellent CC...

Next one will likely be Sunday May 29th 6PM AEST

Just in case, but I'll mail out the invites closer to the day etc...

Best wishes

Steve

Hi Steve,

Thanks very much

Linda