New Transplant Blog Posts

Hello everyone,
We hope this finds everyone well today! We have started this discussion today to announce a new blog post. Every week, we will reply to this discussion to let you know when something new is published. Watch for new information often!

Have a productive and enjoyable week!
– Kristin

@danab

Phoenix Mayo oked me getting the new Shingles and i also get the flu every year. I was told the new shingles is not a live virus.

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@danab I wonder why MGH is not approving it. I have an appointment with my surgeon in a few weeks so I will ask again.
JK

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@contentandwell

@jeanne5009 It just occurred to me, since you are waiting for a transplant you might want to look into getting any immunizations that you can get now that are not allowed after transplant. Some of them have some live viruses in them and I have been informed that I can’t have them now due to being on immunosuppressants.

I know one of them is the shingles vaccine, both the old one and the new one, but I think that @rosemarya said that Mayo OK’d that. MGH has not yet. There are some others but I forget which ones, possibly the pneumonia one? The flu shot is definitely OK though. I hope that MGH will eventually, with more research, decide that the shingles one is OK.
JK

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@contentandwell
Yes, Im 3 years waiting so I know the drill. Got the flu shot, checking with Mayo at my appt at the end of October on the shingles and Prevnar for pneumonia. Have to be in the best shape for transplant…if it ever happens.

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@contentandwell

@cmael I wish that MGH would determine that shingrix is safe for us. Hopefully soon.
JK

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Since Shingrex is not a live virus, I wonder why. Might there be some underlying condition that you have that would make it prohibitive for you?
When the vaccine was new, I remember that there were some questions about it, and so I asked my transplant nurse. She checked with the infectious disease doctor in the transplant department and he gave approval.

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@rosemarya

Since Shingrex is not a live virus, I wonder why. Might there be some underlying condition that you have that would make it prohibitive for you?
When the vaccine was new, I remember that there were some questions about it, and so I asked my transplant nurse. She checked with the infectious disease doctor in the transplant department and he gave approval.

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@rosemarya They simply said that they were still looking into it for post-transplant patients. I have an appointment next week with my transplant surgeon. I will try to remember to ask about it. Sometimes even when I write questions down I end up immersed in a topic and forget to ask something.
JK

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@marvinjsturing

@jeanne5009 @contentandwell Mayo made me get Tdap, hepatitis A, hepatitis B, Zostavax, flu shot and pneumococcal shots. Because some of these involve multiple shots, it took me 6 months to get them all. I am on the kidney transplant list.

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@marvinjsturing Hello. I have been thinking about you and several other members that I haven't touched base with lately. Where are you in the transplant process? I hope your sister is doing well and that you are close to getting the kidney, if not from her, then a donor will be found. I had to stop the treadmill as I now have neuropathy in my feet as a result of my diabetes. It was fun while it lasted, but now I have a hard time walking so my exercise is limited to my house chores and what I do inside. I hope you are doing well. I'd love to know where you are in the process.

Carol

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@retiredteacher

@marvinjsturing Hello. I have been thinking about you and several other members that I haven't touched base with lately. Where are you in the transplant process? I hope your sister is doing well and that you are close to getting the kidney, if not from her, then a donor will be found. I had to stop the treadmill as I now have neuropathy in my feet as a result of my diabetes. It was fun while it lasted, but now I have a hard time walking so my exercise is limited to my house chores and what I do inside. I hope you are doing well. I'd love to know where you are in the process.

Carol

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@retiredteacher Hi, Carol. I currently have 1 year in on the wait list. I will go back to Rochester in June for my annual review. I am in the process of trying to get on the transplant list at Nebraska Medicine in Omaha. I am scheduled for testing there on January 8-9. My sister @lottajoy has her last chemo on Monday. In this round, the first infusion takes about 10 hours and then she has 4 infusions of chemo – one every 12 hours – so she has to stay in the hospital for 3 days. It wipes her out for 3 weeks. If everything goes well, she will have a stem cell transplant in January. That will require a 3-4 week stay in the hospital. I stopped walking also. I really need to get back into it again.

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@marvinjsturing Glad to hear from you, Marvin. I am sorry your sister is having such a rough time, but at least she is getting excellent treatment. I hope you get on the Nebraska list and any others you think will consider your case. I think I'd contact as many as possible. You never know when there will be a match. I am really disappointed in myself that I let the walking go, but when it's hard to walk at all, exercising isn't even a consideration. I've been told the nerves will not regenerate so I suppose my feet will just get worse. We all have our crosses to bear, but we can keep the faith and pray that good things will happen. I'll check on you occasionally.
Carol

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@contentandwell

@danab I wonder why MGH is not approving it. I have an appointment with my surgeon in a few weeks so I will ask again.
JK

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@contentandwell Did your surgeon give you an answer about the Shingles vaccine?

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@hopeful33250

@contentandwell Did your surgeon give you an answer about the Shingles vaccine?

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@hopeful33250 I didn't get to see him that day, he had to be in surgery which is unusual on a day when they are supposed to have transplant clinic appointments. I did see the NP. The current NP is great, she seems very knowledgeable and very thorough. I did ask her about the shingles vaccine and she had an excellent response but I can't remember what it was! I am terrible at retaining medical info. When she told me it made a lot of sense though.
JK

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@contentandwell

@hopeful33250 I didn't get to see him that day, he had to be in surgery which is unusual on a day when they are supposed to have transplant clinic appointments. I did see the NP. The current NP is great, she seems very knowledgeable and very thorough. I did ask her about the shingles vaccine and she had an excellent response but I can't remember what it was! I am terrible at retaining medical info. When she told me it made a lot of sense though.
JK

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I am going to Mayo next wed. I will be sure to ask about the shingles vaccine. We all should share how we remember what the docs say…I always have a list going in and try to remember all the answers. Im going to ask if I can record. I also have someone with me but they often dont put the same importance on the answers that I do.

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@rosemarya

Since Shingrex is not a live virus, I wonder why. Might there be some underlying condition that you have that would make it prohibitive for you?
When the vaccine was new, I remember that there were some questions about it, and so I asked my transplant nurse. She checked with the infectious disease doctor in the transplant department and he gave approval.

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Hi @rosemary I did ask last year and this year again when I saw my team in Rochester in January because I had heard that the shingles shot was no longer an active virus and again they told me at mayo in Rochester at mayo that I am still not able to have the shot as it's not safe for me I don't know if it's really a dead virus or not but I always go with what my team says and it could be because of me being a heart transplant to but I was allowed the prevnar pneumonia shot 2 years ago and I get the flu shot every year BUT I always ask to make sure that it is not the live virus flu shot because they have the live and the dead flu shots every year I hope that this answers a few question but I would always talk to your team about it first just to be safe

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@rosemarya @glinda i had a heart transplant also at Mayo Phoenix and my team were all for me getting the Shingles shot . Interesting the different opinions even with different drs at Mayo.

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@danab

@rosemarya @glinda i had a heart transplant also at Mayo Phoenix and my team were all for me getting the Shingles shot . Interesting the different opinions even with different drs at Mayo.

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Yes it is and it could be no for me as I had the shingles in June of 2011 also and also could be because I have allergies to everything except green bean and chicken but thankfully I have built up immunities to the food I'm allergic but not anything else which makes my life very irritable sometimes especially when I go out hence wearing a mask Everytime I go out somewhere I get looks from some adults like I'm contagious and have a lot of adults ask me why I wear the mask and I tell them why but I really love the children as they already ask me if I'm a doctor before I explain why I'm wearing the mask

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@jeanne5009

I am going to Mayo next wed. I will be sure to ask about the shingles vaccine. We all should share how we remember what the docs say…I always have a list going in and try to remember all the answers. Im going to ask if I can record. I also have someone with me but they often dont put the same importance on the answers that I do.

.

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@jeanne5009 Great idea to record. I sometimes ask a doctor to write something down for me. I have a hearing disability so sometimes what they say does not come through clearly.
JK

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