Have you ever been too sick to get your labs run?

[jeannea]

Muddy Gurl, I am upset when people come here to say things that are not true. In this country, there are no regulations attached to the type of supplement you are promoting. Have you read recent news articles about sham supplements? I don't have a problem with you being a newbie. I have a problem with you stating untruths. I cannot believe anyone who promotes a product labeled RNA to create perfect cells. That's what your Dr Dean does.

I do not have a liberal bias, whatever that is. I have a scientific bias. I have a master's degree in physical chemistry and I know what scientific testing is. I could find almost no scientific testing on transdermal magnesium. I found one clinical trial using it in fibromyalgia patients. But only that they opened the trial, no results. Your "evidence based testing" means nothing in science. You also did not tell me what change in lab results came from your use of this product.

What did you research? I would love to hear. If you know about research and medicine, you should know why having diarrhea as a side effect does not mean you're not absorbing magnesium.

I am upset because you did not present what works for you. You said that we and all our doctors were wrong for using or recommending Mg supplements. I am not vilifying you in public. I am challenging your knowledge. You're the one who said I was completely wrong for presenting my personal experience which was originally all I did. I told Deanna that IF her doc wants her to take Mg that I have found this brand easier on the stomach. That is all. You were the one who told me I was dead wrong.

[jeannea]

Deanne, I am SO SORRY that you didn't even get your surgery. Just awful. It's good they're fitting you in on Mon. Even if they would give you a psych eval, they would find you perfectly normal. You're reacting to suffering. Try to hold on until Monday. Take care of yourself. 

(I promise I will also stop fighting on your thread now.)

[MooseMom]

One friend suggested one has to have good "project management skills' to be able to deal with any complex medical condition. I was intrigued by that and still don't quite understand how this may look like. But whatever it is, it sounds like a good way to keep track of the myriad of details, tests & other health care workers that look after different things. I do find dealing with my health problems rather confounding and fragmented.

Your friend is absolutely correct.  The analogy I use is that you have to be the captain of your ship.  You have to make sure that all departments are integrated, and if they are not, your job is to know what each is doing.  I keep copious notes and files on things like appointments, lab results, etc.  When you are newly diagnosed with a complex and chronic condition, it takes time to learn the ropes, as it were, but it can be done.  It MUST be done.  And it is not always east to be the captain when you are unwell.

I am not a controlling person.  I do not much care what other people do.  But when it comes to my renal health, I am in charge.  Whenever I go into an appointment of any kind, I let it be known that I am the captain.  I may not be the SPECIALIST, but the captain does not have to be the engineer.

[Deanne]

This is so unreal it's almost worth writing a book about. I'm sitting in a parking outside a pharmacy. My neph sent a prescription for a nasal spray to try to bring down my calcium level. She had me run labs yesterday afternoon and it's over 12 again. The first pharmacy doesn't carry it so they sent me here. This pharmacist refuses to fill it until someone from my neph's office cas back to tell them if I should alternate nostrils.

[MooseMom]

This is so unreal it's almost worth writing a book about. I'm sitting in a parking outside a pharmacy. My neph sent a prescription for a nasal spray to try to bring down my calcium level. She had me run labs yesterday afternoon and it's over 12 again. The first pharmacy doesn't carry it so they sent me here. This pharmacist refuses to fill it until someone from my neph's office cas back to tell them if I should alternate nostrils.

Write a book and then sell the movie rights.  You'd make a gazillion bucks.  Make it a comedy!  It's sounding more and more like a French farce.

[Deanne]

It really is a comedy. All I could do is say "of course" and burst out laughing. I called my neph's office to ask if I should wait or go home. My neph is out. They told me to go home. Three more days.... maybe.

[MooseMom]

I've never heard of a nasal spray that can bring down calcium levels.  That's really interesting.  What's the name of the medication?  Since your neph has gone home, will you get your spray maybe tomorrow?  Alternate nostrils or not?

[Deanne]

I just hung up from my neph. She wasn't home. I think this was either her dialysis clinic day or her hospital day. She checked in with her office, got the message and called the pharmacy to straighten things out (whew!). I'll go back for the prescription after work. I'm off in another hour. I think the drug is calcitonin.

[MooseMom]

I'm glad to hear it, Deanne.  Your neph is indeed a gem!

[Athena]

This is so unreal it's almost worth writing a book about. I'm sitting in a parking outside a pharmacy. My neph sent a prescription for a nasal spray to try to bring down my calcium level. She had me run labs yesterday afternoon and it's over 12 again. The first pharmacy doesn't carry it so they sent me here. This pharmacist refuses to fill it until someone from my neph's office cas back to tell them if I should alternate nostrils.

Write a book and then sell the movie rights.  You'd make a gazillion bucks.  Make it a comedy!  It's sounding more and more like a French farce.

I definitely agree that it would make for a good book. The movie would have to be wild comedy of errors that tells the world how it's really like to be a downtrodden tired suffering patient in the medical world sometimes. The thing is one must be a fastidious note-taker and committed diary writer in order to truly get a good book out of one's experiences.

[MooseMom]

I am hoping your surgery goes well tomorrow, Deanne!

[Deanne]

Thank you! 15 minutes until I head to the hospital and no one has called to cancel yet. Of course it's also only 4:45 am and the surgeon is probably still in bed, too.

[Deanne]

I don't have numbers yet, but my nurse said my PTH level is down dramatically. Someone just drew my blood to check my calcium level. They're keeping me overnight to keep an eye on it. I'm looking forward to home tomorrow, beginning my recovery, and eating again in general, after not eating more than once or twice a day for months. Bring on the ice cream!

In the meantime, I'm on the 8th floor in a room that overlooks the valley and thunderstorms are predicted tonight. I love a good thunderstorm and they're a rarity  in Oregon.

[MooseMom]

I hope you spent a comfortable night in the hospital listening to the calming sounds of distant thunder.  I'm glad to hear that your PTH is already down, and I hope the rest of your numbers are good, too.

What do you think will be the first thing you'll be hungry for?  I am really hoping that now this whole nightmare will be behind you and that you will be able to join the real world again, such as it is. 

[Zach]

Sometimes after a parathyroidectomy, one may experience "Hungry Bone Syndrome."
That's where the blood calcium levels can go real low.

So be on the alert for hypocalcemia.

Have a uneventful recovery!
 

[Zach]

Yes have ice cream … lots!

[Deanne]

No ice cream yet, or at least not a lot of it. They want to monitor my calcium levels pretty closely for a while before they'll turn me lose on dairy because of the potential for some residual stuff that could cause my calcium to go high again in the short-term.

I came home yesterday. A friend came to pick me up, but in the end, I drove myself home. My friend has Parkinson's and while I was waiting for everything to be ready so I could leave, my friend mentioned that she was a 1/2 hour late on her meds and then she admitted she's done some things behind the wheel that she doesn't think are safe. A couple of us are encouraging her to stop driving, but that's another story. In the end, I thought it would be better for both of us if she let me drive myself. It would have been another hour before she got her meds if she took me home and I knew she'd feel pretty sick by then, I felt safer driving myself, and it saved a trip back to the hospital later to pick up my car.

My legs are still pretty shaky and I imagine it'll take a while. I see my neph next week, I think (I need to find my appointment card), and will ask her about physical therapy.

Thankfully, I think this drama is finally at an end, just in time for my birthday. I couldn't ask for a better birthday present! 

[Athena]

Deanne, happy birthday. The best birthday present is receiving a bit of extra good health!

I take it this is the tertiary parathyroidism  condition that my Neph told me once about? So even with a successful kidney transplant, there can still be problems with the PTH, calcium & phosphorous trio?

[SooMK]

This is great news. Congrats.

[MooseMom]

I can't believe you had to drive yourself home from surgery, but I'm glad you were able to.  I hope your friend got to her meds on time.

I'm very happy that the end of this awful saga is in sight.  I am eager to hear about your progress now that the dreaded parathyroids are out, so I hope you will keep us posted.  I'm also very eager to hear more about your appointment once you see your neph next week. 

Have a great birthday!  So glad you're home!

[Deanne]

I take it this is the tertiary parathyroidism  condition that my Neph told me once about? So even with a successful kidney transplant, there can still be problems with the PTH, calcium & phosphorous trio?

Yes, it's teritary parathyroidism. From what I understand, it isn't common, but I seem to be lucky that way. My phosphorus level wasn't too bad. It was mostly on the low end of normal with phosphorus supplements, but at least it was in the normal range. My PTH level at first seemed to level off at around 140 - 150 on Sensipar. I was never able to stop taking Sensipar. Then all of a sudden, my calcium level jumped to 12.8 and the symptoms were awful. My PTH had jumped up to over 200. I know a lot of people on dialysis have a higher PTH than that, but combined with a high calcium level, and considering it should have dropped after transplant, it wasn't a good thing. My neph increased Sensipar, but my PTH level only went higher and the side effects from Sensipar made me feel even worse. For a little while, my calcium level dropped a bit. It was still too high at around 11, and I tried to avoid eating much calcium, but it didn't do any good. My calcium level went back up over 12 again.

Part of the reason I post stuff like this is to vent, but part if also because it's best not to think transplant is a magic solution that will solve all problems. A year after my transplant, the jury is still out as to whether transplant was the right decision for me. Hopefully, this is the last complication for a long time. Time will tell.

[Athena]

Deanne,
I really appreciate you taking the time to explain that to a Newbie like me. Yes, that really has great educational worth, it really keeps me informed. It just goes to show how deeply complicated living with kidney failure really can be. Perhaps this type of surgery should be done much earlier once people are poised to develop tertiary parathyroidism?

I hope you're feeling better already, though recovery from any surgery can take a little time. I hope your lab results really start to shine.