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1
Dialysis: General Discussion / Re: Amyloidosis
« Last post by PrimeTimer on January 17, 2021, 04:10:59 PM »
That's hopeful news, Cas. Glad you felt up to trying a new machine but what choice did you have, right? Hopefully you'll see more progress the longer you use it. From what I've read, Amyloidosis can be chronic and cause a lot of pain all over the body. I was wondering about the pain clinic because hubby has a lot of random terrible pain from diabetic neuropathy. You're smart and I trust your opinion and so wondered what you thought about those clinics. Please keep us posted on your progress. Cheers to you getting better!  :beer1;
2
Off-Topic: Talk about anything you want. / Re: The covid vaccine
« Last post by UkrainianTracksuit on January 17, 2021, 01:53:29 PM »
... I do hope that you and your husband are doing as well as is possible and I have been wondering whether or not it might be a good idea if your husband has one or two more blood-tests taken at an independent place to make sure whether the last blood-test might have been a mistake - or not? What do you think?
We have definitely thought about that. Well, not an independent place, but another lab. He has requisitions for more blood work, but he had to book an appointment (lockdown situation) rather than walk-in. The earliest he could get in is the 29th. Hopefully the results come before he gets booked for the biopsy and aspiration. Thank you so much for your concern!  :cuddle;
3
Dialysis: General Discussion / Re: Amyloidosis
« Last post by MooseMom on January 17, 2021, 11:07:47 AM »
I had a look at the Gambro AK96 online; what an impressive piece of technology.  So, you're thinking that it's the machine's filter that is making you feel better?  I mean, it's entirely logical and so simple that it makes me wonder why no one else thought of this.  I'm very curious to see what your next set of labs show, specifically B2M (which admittedly I had to look up).

I'm thrilled that you are seeing a "future" again!
4
Off-Topic: Talk about anything you want. / Re: The covid vaccine
« Last post by kristina on January 17, 2021, 09:47:36 AM »
Many thanks UkrainianTracksuit for your quick answer and kind explanation, it is very much appreciated and I shall look forward to find out which of these vaccinations the medics are going to give transplant-patients here ... and ... so far I have not heard a word ...

... I do hope that you and your husband are doing as well as is possible and I have been wondering whether or not it might be a good idea if your husband has one or two more blood-tests taken at an independent place to make sure whether the last blood-test might have been a mistake - or not? What do you think?

Take great care and I send you my kind thoughts and best wishes from Kristina. :grouphug;
5
Dialysis: General Discussion / Re: Amyloidosis
« Last post by cassandra on January 17, 2021, 09:01:25 AM »
Hi PT, thanx for asking. The pain got a lot worse, and the Naproxen really started hurting my stomach. So I took up on the referral for Pain management. As I already was afraid turned out to be useless. They rang every week to ask how I was feeling ....., and they couldnít prescribe pain meds. By luck I got to speak with one of the GPís I had not met yet. She actually spoke to the team in hosp and I was prescribed morphine. In the mean time my new machine has come. Itís a Gambro AK96. A monster. We are both being trained now, cos Hubby is home nicely shielding from Covid. And unbelievably the pain is already less (3 sessions) Apparently itís the filter which is capable to filter the B2M out.


I made sure I had a bloodtest including B2M pre and post with the Nxstage, and Iíll have 1 of course with the Gambro. I donít need to wait for the test. I know it works.


Iím seeing some sort of future again.  :cheer:


Love, Cas
6
Off-Topic: Talk about anything you want. / Re: The covid vaccine
« Last post by UkrainianTracksuit on January 17, 2021, 08:51:52 AM »
If you scroll up, you can see I posted a link to an American Society of Transplant Surgeons vaccine overview. Here is the link again:  https://asts.org/advocacy/covid-19-resources/asts-covid-19-strike-force/transplant-capacity-in-the-covid-19-era

Not that it answers all your questions kristina, but the Oxford-Astra Zeneca and Johnson & Johnson vaccines have not been recommended for transplant patients. Why? Word for word from the document: They are both adenovirus vector vaccines where the coronavirus genetic material is carried into the cell on a live virus. That is subsequently followed up with Historically we have not recommended live viral vector vaccines for transplant patients that take immunosuppressive agents. The safety for the severely ill waitlist population could also have difficulty clearing the viral vector.

So, your best bet will be with the approved Pfizer and Moderna vaccines.

No one from my medical team has spoken to me about vaccination and that is pretty normal for someone in the "general population" for Canada. Not expecting to be vaccinated until autumn. Not sure how quickly the UK is vaccinating its target groups and if vaccines are available to you yet. Perhaps search your public health authorities and see which hospital hubs are offering clinics? As well, your GP probably holds the best answers, so arrange a telephone chat.

7
Introduce Yourself / Re: how bad is it?
« Last post by MooseMom on January 17, 2021, 08:25:52 AM »
Thank you for your response.. I'm guessing u must be in the uk based on the fact u skipped dialysis and got a transplant.... either way, I am very appreciative for the insight you have provided me. It's so hard to find real life perspectives sometimes and I feel like I'm already on my way to a well rounded and informed opinion on all this! Thank you again so much for taking the time for me!!

Oh, you are most welcome!  I'm sure some other members will come along and answer your questions, too!  If you mother wants to ask anything specific, please relay those queries to us!  We'll do our best.

No, actually I'm in Chicagoland.  I had been on the waitlist at Rush University for almost two years.  I had a working fistula and was expecting to go on dialysis at any time.  My neph suggested I list also at UW-Madison, so I went up there to speak with them.  I'd just completed my second round of pre-transplant testing, so I took my results to Madison, and they put me on their list.  I got "the call" just a week later.  It was pure luck.  There is no rule here in the US that stipulates one must be on dialysis to "qualify" for a pre-emptive transplant.  I waited my turn just like everyone else.  The bit of luck I had was in where I live.

I'd like to say one more thing about the immunosuppressant drugs.  They are the one vital thing that makes this all work.  Having a kidney transplant sounds dramatic, and I guess it is, but the real work comes afterwards.  This sort of surgery has been done for decades and is really quite common in the grand scheme of things.  But keeping that kidney going is almost entirely up to the recipient.  At first I felt overwhelmed from the drug regimen.  Consistency is the key.  Before you know it, it becomes just another thing to do each day.  My transplant coordinator often tells me that she has too many patients who just can't be bothered with the pills, or they just take them when they remember.  Taking your pills correctly and consistency is the one thing over which you have control, and this is of great comfort to me.

Please let us know how your mother is doing and how things are progressing.
8
Off-Topic: Talk about anything you want. / Re: The covid vaccine
« Last post by kristina on January 17, 2021, 08:12:42 AM »
... There are currently about three (?) different (?) vaccines on the "forefront of the market" and they have been licensed in : 1) the UK (Oxford), 2. in the EU (Pfizer) and 3. in the US (one of the aforementioned or another new one ?).

My question is now : which vaccination is the safest and/or are they all the same and/or how do I go about getting a vaccination for myself with which vaccine as a non-medical person ? Have you all been contacted by your medical team? Or have you just walked into one of the vaccination-places?

Many thanks for your kind answers from Kristina. :grouphug;

 
9
Introduce Yourself / Re: how bad is it?
« Last post by Notadork on January 17, 2021, 02:09:35 AM »
Thank you for your response.. I'm guessing u must be in the uk based on the fact u skipped dialysis and got a transplant.... either way, I am very appreciative for the insight you have provided me. It's so hard to find real life perspectives sometimes and I feel like I'm already on my way to a well rounded and informed opinion on all this! Thank you again so much for taking the time for me!!
10
Dialysis: General Discussion / Re: Amyloidosis
« Last post by PrimeTimer on January 17, 2021, 01:27:34 AM »
Update: bloods: B2m has gone up from 2.9 2 yrs ago to 28.8 Oops Amyloidosis it is. Tele consult next week with nephrologist.
             CT scan: Osteoporosis and some damage to cartilage and some deformed discs (which I put down to ageing and 26 yrs Prednison, and longterm dia) I friendly declined a visit with a rheumatologist and pain-clinic.


I started a diet with low AGEs (no fried, roasted, over processed food, no dairy (already milk intolerant so that part was easy. I miss my roasts etc) since starting to have porridge for breakfast (actually really nice is oats with earl grey tea  ;D ) the pain has actually subsided.

cassandra:  If I am not being too intrusive, it's been a while and I was wondering how you are doing now with the Amyloidosis. Any better? Any worse or has it progressed? I am also curious about why you had said no to seeing a Rheumatologist or going to a pain clinic. Bad experience? Was it because you already have and they didn't help or you just felt that it wasn't time? Hope you are doing better. 
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