Sort of morbid, but necessary…

Dr. K,

I was wondering what you think would be the best way to ensure that any necessary tissue samples get saved for any future testing that could maybe help Noah in the event of my death. I’m debating between cremation and burial, and the only thing that scares me about cremation is that it’s absolutely permanent, so there wouldn’t be any kind of getting DNA later…

Do I just let my executor know to contact you, or is there something I can put in writing ahead of time?

I’m not doing very well with this Actino infection…I’ve started a more heavy dose of antibiotics, but some of the symptoms I’m feeling I know enough to know are not good after all of these months of treatment. I’m obviously hanging on and fighting the best I can, but there is only so much I can do I suppose…

I’ve been through a lot, and I’ve had many moments where I was on my way to death, but there was always a medical option to try or something we could do…a weapon to fight it. This is the first infection I’ve had where not only I feel I’m using all the weapons available right now–they’re failing.

Perhaps the main option remaining, I’m thinking of reaching out to an Eastern doctor like we talked about in the past, if anything to help support my liver and kidneys while I do this round of heavy duty antibiotics…I feel like I’m pushing my body to the limit right now. There is only so much we can pump inside and be able to handle it.

I’m trying to instill in Noah the importance of proflayatic antibiotics and trust his instincts about his body. I said to the doctor before he pulled out the salivary gland that I thought I needed some antibiotics, he actually told me I didn’t…I have an audio recording of that conversation too on my previous iPhone, I also have pictures of the gland after it was removed, but I can’t even listen to it. It doesn’t matter now.

I hope you’re doing well and your research is going well too. Thank you for everything. Please advocate for Noah. He’s going to go through many of the obstacles I did with non believers, etc. Hopefully one of these decades someone will solve it.


About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s