Update on Doctor Visit

[Strumin210]

Had my appointment yesterday ,they were one hour and 15 minutes late but I digress. My platlets are bumping 900,000 so They asked me to try to take the hydrox 3 times per week till the nurse practioner can get with the doctor( to which I have only seen one time in over a year). I guess I must not be important enough for her to see me to discuss another medication to lower my platelets. It's not just me but others have expressed that concern about that Doctor. Have to go back next Thursday for an answer to a medication change. Also if anyone could give me advice on how to get my taste back for water it would help. Just having a hard time drinking water for some reason. Thanks to all for your concern,prayers and advice. I am glad I found this site.Blessings from LA(lower Alabama)

[hunter5582]

Sorry to hear about the challenge accessing the care you wish to receive. Unfortunately, this is a problem that too many need to deal with. I would suggest seeking case from a MPN Specialist. It may mean traveling further, possible out of State, but it is worth it. Here is a list. mpnforum.com/tsr-the-list/

Assuming that you are not having trouble with liquids in general, suggest trying a few things to increase water intake. There are various bottled water with electrolytes added that you may try. There are also mildly flavored waters that do not have any sugars or other additives. You can also make your own infused waters with the flavor of choice. I like lemon, lime, watermelon, strawberry, and orange, ll it requires is slicing up the fruit an letting it sit in a jug of water for a while.

It is very important to stay well hydrated with any MPN. this is particularly important when taking hydroxyurea due to its toxicity. Your liver and kidneys will thank you.

Wishing you all the best.

[S031251]

try heating up the water, just hot enough but drinkable - so much easier to take.

[bluebird567]

Hi Strumin, Sorry, I do tend to ramble. I haven't had my ET diagnosis for long but also have trouble drinking water. I don't know whether I have a psychological fear of drinking water due to deleting too many salts from my body - I have previously collapsed/passed out.

I found 'High 5 Zero' an electrolyte sports drink. Zero sugars and zero calories. You can cut each tab into two. I find 1/2 tab sufficient which I drop into a little cold water before topping up with hot water. This way I make sure I'm well hydrated but don't over burden my salts. My favourite flavours are: Citrus, Blackcurrant, and Strawberry with Kiwi. Other flavour are available. Really lovely to put in your sports flask before going out in the cold.

Be strong and like others have said on this site - advocate for yourself. It's your life and your body. But always be polite - that will get you where you need to be. 👍

Wishing you all the best going forward.