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UGHHHHHHHH……

This is long so feel free to skip.


Well We´ll begin with the beginning:
If you remember, I had many blood tests Thursday in last week, then a liver scan/ultrasound on Tuesday this week.

When I came to the hospital today, a young doctor met Mum and me, but she was nice and thorough.
She started with asking me about how I was what has changed in the last years, and I told her all I could remember with Mum helping me. Then she asked many questions; what kind of medication I get, smoke and drinking habits (no and a little), appetite, how my day was and what kind of work I have had before I got sick 8 years ago.

Then I had to strip down to my underwear and she examined me. Taking blood pressure, my temperature, my weight (actually 13, 2 lbs. less than I thought – yay me), my height (160 cm, so I have shrunk 5 cm!)

She then felt my lymph nodes, but I told her I had the mammogram and ultrasound last Thursday, she didn´t go into that. Listening to my heart and my spleen.
After that, I could dress and she went to talk to a colleague so we waited for a bit.

She came back and asked if I had any allergies, was claustrophobic, pregnant (!!), if I get bruises easy and if I have heat flashes (and yes I do to both)
She then told me that I indeed do have hemochromatosis! HOWEVER, the liver scan and blood tests showed that there is something else too, as the numbers from the tests was too high to just be from the hemochromatosis.

Therefore, what is going to happen now is this; they will not start on the ½ a liter blood removing once a week.
First I will have a MR-Scan, so they can see if there is anything else than iron that mess up my liver and blood. I will have new blood tests taken and then go back to the hospital on October 6. I told them I was having guests from Sep 29-0ct 5, so that was out of the question.
Then I hope they have some answers and a plan for what kind of treatment they will use for the hemochromatosis.



After almost two hours that was what I left with. I felt rather confused; as I thought when I got there, I would be told that they would just take the blood from me for the rest of my life. I was not prepared for so much confusing information, that I have another illness and they do not know what causes it, with new examinations and blood tests, and hope they find the cause to the confusing numbers and levels that I have.

So right now I feel like s**t, confused and a little angry.

However, as with everything else, I´ll find a way to get through this, with the help of Mum and you out there.

I LOVE YOU GUYS! Thank you for listening and being so supportive all the time.





 

Comments

( 21 comments — Leave a comment )
dreamers_dh
Sep. 4th, 2015 06:30 pm (UTC)
Oh, sweetie... *hugs*

I wished that you got better news today!

I'm thinking of you!
pippii
Sep. 5th, 2015 04:31 pm (UTC)
Thank you so much Darling, I am so pleased that I have you in my life♥
Hugs
honeyjojames
Sep. 4th, 2015 07:06 pm (UTC)
Oh sweetie. I was thinking of you today and crossing my fingers that you got good news. I'm sorry to hear all these tests have just lead to more and more tests. Let's hope it will all be worth it in the end and you will soon have a proper diagnosis and treatment plan. At least they are being very thorough with you!
Sending lots of hugs and good thoughts to you and your mum as well! *hugs*
pippii
Sep. 5th, 2015 05:31 pm (UTC)
You are such a sweetheart, I am so glad that I have you in my corner.
I hope the new tests will make out the new trouble, and I am sure they can work out the right diagnosis, it is just fustrating that I thought I would get an answe and didn´t.
I am so lucky to have you as a friend, I love and adore you ♥♥
burned_phoenix
Sep. 4th, 2015 08:36 pm (UTC)
Oh Sweetheart! I'm so sorry, I was hoping for better news *hugs* Why is it so difficult to get answers to this :(

Let me know if there is anything I can do for you!!! *snuggles* I'm glad you have your mom there with you to get you through this.
pippii
Sep. 5th, 2015 05:36 pm (UTC)
Me too, but I know I should be happy they take al those extra tests.
What you can do, is telling me when you will arrive on the 29, and if there is anything you want to do while here.

You know Mum, I have no chance to do anything like that by myself... But I do not mind.
We all look forward to seeing you♥♥♥
LOVE YOU♥
burned_phoenix
Sep. 7th, 2015 09:40 am (UTC)
Yes, that's a good thing. They seem to want to get behind the reason as well :)

When will I arrive?! Let me check. I should land at 11:05 and leave at 18:20 on Monday

Not long anymore!! :)
pippii
Sep. 9th, 2015 04:42 pm (UTC)
Great, we´ll be there to pick you up ♥
Soooo exited ♥
Love you
burned_phoenix
Sep. 10th, 2015 08:05 am (UTC)
Aww, thanks, darling *hugs*

Me too!!! You too!!! :D
jesco0307
Sep. 4th, 2015 10:46 pm (UTC)
*hugs*

I'm sorry to hear that today wasn't as successful as you were hoping! I can only imagine how frustrating that must be. On the other hand I'm grateful they're thorough and try to find out everything that is wrong. And if starting to treat you for hemochromatosis means probably making it more difficult to discover what else is wrong, I guess it's the right choice. It sucks though, big time. I wish there was more I could do to help! Glad your mom was there to support you! *hugs*
pippii
Sep. 9th, 2015 04:48 pm (UTC)
It is, I just thought that I could get started with a treatment and move forward. It is great that they look into it to find out if there is anything else wrong, just what I need, another illness ;)
THank you for being here for me it means the world to me.
Love you♥
digitalwave
Sep. 5th, 2015 06:57 am (UTC)
Sweetie, I am sending you every good, healing thought in the world.

*hugs you hard*
pippii
Sep. 5th, 2015 04:32 pm (UTC)
Thank you Darling, you are such a kind and caring person, and I love you♥
Hugs back♥
a_phoenixdragon
Sep. 6th, 2015 07:09 am (UTC)
Bless you, bb. We're here, yeah? I can see how that 'diagnosis' was confusing...and could make you angry. Tis all 'what NOW?!?!', really. Just remember - we are all here and we are all pulling for you.

Love you, darling...

*HUGS*
pippii
Sep. 9th, 2015 04:46 pm (UTC)
I know Mands, I am so lucky to have you as a friend, you mean the world to me.
I know, I just hoped I could get on with a treatment and that would be it....
Love you Honey♥♥
Kisses
lisaj67
Sep. 6th, 2015 09:40 am (UTC)
Sending you soooo much love and hugs and healing vibes,keep your chin up hunni,try to keep smiling,and know that wee are all with you every step of the way xxxxxxxx
pippii
Sep. 9th, 2015 04:44 pm (UTC)
Thank you for being here Lisa, that means so much to me♥
I am blessed with the best friends in the world♥
Hugs
princesslanie
Sep. 7th, 2015 10:45 pm (UTC)
squishy hugs.
pippii
Sep. 9th, 2015 04:41 pm (UTC)
Thank you sweetehart♥
Huggles
(Deleted comment)
pippii
Sep. 9th, 2015 04:43 pm (UTC)
Thank you my sweet Girl♥
Huggles♥
( 21 comments — Leave a comment )

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