Vaccinations in a Post-Renal Patient World

[cariad]

Right! It turns out that having chemo and radiation is actually rather a major thing. Huh! Color me surprised.

I finally connected with a post-transplant nurse who has been trying to contact me for ages. She reviewed my immunization titer with me. Depressing.

Essentially, my immune system was totally wiped out and did not return to its former glory. I have had the flu shot, so that is at least something.

I showed Gwyn the list of what I need, including a messy flow chart that I had to type up. Are you ready for this?

Week One
Hep B, PneumoVax, HIB, Hep A
Week Two
Meningitis, Polio, Diptheria/Pertussis/Tetanus
*Wait 4 weeks*
Week 6
Polio and HepB
Week 10
Blood Draw for New Vaccination Titer
Week 24 (Approximate)
Hep B, Polio, Hep A
Week 30
Blood Draw for Second Vaccination Titer

This is not including the MMR series which I also no longer have immunity for, and the Shingles Vax. She is going to check with their infectious disease expert over both of these since those vaccines cannot be given to immunosuppressed people. That will add another 3 injections. It sounds like the Shingles vaccine may not be recommended post-transplant, so I would highly suggest that anyone on the list who takes no immunosuppression get it NOW while they have the chance (unless your doctor disagrees, of course).

I'm off to have a good cry now....

[willowtreewren]

Oh, Cariad.

This is a formidable schedule! I'm so very sorry that you are having to go through this. I'm also glad that Carl got his shingles shot before his TX.

 

Aleta

[ToddB0130]

cariad ... ugh,  sorry about the future 'pin cusion' deal ....that sucks.

Thanks for the shingles vaccine heads up ...........how long does that vaccine last ??  Is it something you have to get every year ??

And who knew ?? I didn't even know there was a Hep A vaccine, so thanks for that too (just got my first .... of three total.... Hep B vaccinations).

THANKS AGAIN FOR THE VERY HELPFUL INFORMATION.   Hope your shots are as painless as possible !

[cariad]

Thank you, Aleta and Todd. 'Formidable' is a lovely, diplomatic word. I shall be putting this to good use. When my son bursts into tears over his annual flu shot, and he will, I will tell him to thank his lucky stars that his childhood vaccinations are by and large behind him. I get to go through the ordeal twice!

[MooseMom]

Cariad, I had meant to ask you about this a lot time ago, but I suppose I just forgot.  I wondered if this hitting the "reset" button, immunologically speaking, would meant that all of your residual antibodies would be zapped.  I'm really sorry to hear the answer!  When will you begin this vaccination journey?

I did have you in mind when I went to Walgreens last week for my annual flu shot.  I explained my situation and said that I knew several people post-transplant who had come down with severe cases of shingles.  The nurse very kindly contacted the CDC, and their recommendation is that you should wait at least three months from the time you get a shingles vaccination to the time you begin any sort of immunosuppressive therapy.  So, if you are on the transplant waiting list and decide to get the shingles vax, you shouldn't receive a transplant for three months. 

I had my annual tx appt on Monday and I asked the coordinator about this.  She looked in my records and saw that I already had antibodies, so shingles won't be an issue for me.  So, I didn't get a definitive answer, but I thought I'd let you know what the CDC recommends.  Of course, best ask your transplant coordinator about your particular situation. 

[cariad]

Cariad, I had meant to ask you about this a lot time ago, but I suppose I just forgot.  I wondered if this hitting the "reset" button, immunologically speaking, would meant that all of your residual antibodies would be zapped.  I'm really sorry to hear the answer!  When will you begin this vaccination journey?

That's vaccination trudgery thank you very much!   I am trying to start it now. I have these weird sensations down both legs, not painful but feels very achy and sore when I walk. I have not done any exercise in positively ages, so no idea where this might have come from, but with this new information about my depleted immune system, of course I'm thinking What exactly are the early symptoms of polio now?

I did have you in mind when I went to Walgreens last week for my annual flu shot.  I explained my situation and said that I knew several people post-transplant who had come down with severe cases of shingles.  The nurse very kindly contacted the CDC, and their recommendation is that you should wait at least three months from the time you get a shingles vaccination to the time you begin any sort of immunosuppressive therapy.  So, if you are on the transplant waiting list and decide to get the shingles vax, you shouldn't receive a transplant for three months. 

This is very helpful information. I have called the CDC myself, they are an excellent resource (in a commie socialist government takeover of healthcare death panel sort of way!) I would like to have known this before my transplant, but there it is. Please, I cannot stress this enough to the transplant hopefuls, especially those 60 and older, ask your doctors about the shingles vax. Shingles is debilitating, but PHN will ruin your life.

I had my annual tx appt on Monday and I asked the coordinator about this.  She looked in my records and saw that I already had antibodies, so shingles won't be an issue for me.  So, I didn't get a definitive answer, but I thought I'd let you know what the CDC recommends.  Of course, best ask your transplant coordinator about your particular situation.

Thank you so much for sharing this, MM, it has brought me to a really crucial understanding of what is going on here. You see, I had shingles in 2007, or as it's known around here, The Year of the Virus. It was not so bad, especially in comparison to the viral meningitis that nearly killed me weeks later. I did not realise that with shingles, one is only supposed to have to slay that particular demon once. So, when I had it again earlier this year, it was much worse and I researched everything I could about it. I read horror stories of people who have been having shingles outbreaks every few years for decades. Truly ghastly stuff. So, I had been convinced that I was going to be one of those people, and my second outbreak of shingles was the clue. Well, now I am thinking, I probably did have antibodies to shingles before the chemo/radiation, lost those, and maybe, hopefully, probably have made some more. I have a call in to the research nurse and perhaps they can tell me if I have that immunity or not. So I am daring to hope that I am good for shingles immunity. Do you know how you ended up with antibodies? Is it like any other virus, you can contract it and fight it off without ever noticing symptoms?

Now Gwyn wonders why I did not get the vaccination part of his immunity. If anyone knows, or could hazard a guess, I'd love to hear theories.

[MooseMom]

Well, I had a gawdawful case of chickenpox when I was a child, so maybe that has something to do with why I have shingles antibodies.  I also have EBV antibodies, which was a surprise to me, but I couldn't hazard a guess why as I certainly don't remember having any symptoms.

Speaking of hazarding a guess, I couldn't in regards to why you don't have Gwyn's vaccinated bits, but that IS a very interesting question.  If you find out, let me know.

[rsudock]

all these virus talk is scarying me!  Post first transplant right before I had my spleen out I did get a round of vaccinnations. I guess the spleen offers some sort of protection against that stuff?

sorry for all the yucky needle sticks Cariad!

xo,
R

edited to change "me spleen out" to "MY spleen out" I must have been thinking with a British accent?

[cariad]

MM, I'll ask my surgeon the next time I see him. The immune system is stupidly complicated, so he is the only one that might have a hope in hell of understanding any of this.

Thanks, Rachel. Yeah, I've heard that about the spleen, but I don't think it's that significant. Oh, except in the case of pneumonia. Be sure to always stay current on your PneumoVax. It's hard to not obsess, but I figure we've made it this far, we'll both survive whatever's in front of us. 

[cariad]

Had a lengthy talk with the research nurse and she said something about how I may still have some antibodies to these diseases, but it's just not high enough to count.

The infectious disease specialist said it's like resetting my immune system.

I asked why I did not get Gwyn's immunity from his stem cells and she said that was "on a different level" in terms of complexity and she really could not answer that.

The infectious disease specialist said no MMR and no shingles vax for me for now. The research nurse told me he'll probably never recommend those for me. The nurse kept going back to him, double checking, triple checking, and finally he said "the measles part of it can cause DEATH." We just had a measles outbreak in Milwaukee. I'd really like to know where this is headed. Perhaps I'll read up on the trial participants from Mass General - they have been med free since I at least 2005, possibly much longer.

[MooseMom]

I've very much like to know where this is headed, too...this is a fascinating topic!  Be sure to post everything you find out!  Thanks!

[RightSide]

That's quite a list!

At least none of them is a live virus vaccine.

At least I assume you'll get the Salk shot for polio, not the Sabin live virus.

[RightSide]

\The infectious disease specialist said no MMR and no shingles vax for me for now. The research nurse told me he'll probably never recommend those for me. The nurse kept going back to him, double checking, triple checking, and finally he said "the measles part of it can cause DEATH."

Oops, I was wrong, and you are right.

MMR is a live-virus vaccine.

If your immune system is smashed, any live-virus vaccine can be quite dangerous.

I sure hope terrorists never get a hold of smallpox, because we'll be screwed.  The smallpox vaccine, being a live virus vaccine, is contraindicated for anyone with a compromised immune system--like us renal transplant patients.