More fed up than ever

[MarkGeordie]

Some might remember that last year I went through a lot with various tests and examinations. I had tonnes of bloods, urine tests, various CT scans and even 2 biopsies. In the end the haematologist put it down to a very bad infection. I was treated.

Things improved, but it has been hard to know whether this was due to the treatment or whether it was just a coincidence really?

I say that because I had a really good period, but now I'm back to where I was - left hand side and back pain, dipsticks showing blood in urine, tired, sore all over, severe night sweats every night where i wake up drenched and my bedding is too, bit of blood pressure variations going from extreme low to high, swollen ankles and generally feeling dreadful.

Doctor now has booked me in for repeat bloods, a new CT scan, has said she may do a chest x-ray too, she wants to speak to a urologist regarding the blood in urine and if she needs to she will insist the haematologist to see me again, on the precautionary side she has prescribed antibiotics on what she said as a "just in case".

I'm fed up now.

 

[Inka]

So sorry to hear this @MarkGeordie No wonder you’re fed up. I really hope they get to the bottom of things. It must be so frustrating.

 

[MarkGeordie]

Yeah. I hope I get answers too, it’s becoming unbearable.

 

[Lucy Honeychurch]

I'm sorry to hear that (((hugs))) I hope you get some answers soon.

 

[MarkGeordie]

Thought I’d add an update.

I started taking the antibiotics as advised just in case it was a bad infection again. I got quite unwell and vomited all food back up so I’ve been prescribed an alternative.

I had my bloods and rang surgery yesterday, the receptionist said the doctor had noted I had a high platelet count and had spoken with the on call haematology registrar at the hospital and he is putting it down to an infection too.

Still waiting for the CT scan appointment to come through.

Is there anything else I should be asking?

If they are so insistent it’s a bad infection should I be asking for the bloods to be repeated after the course of antibiotics?

My thinking is if it was an infection then surely the high platelet count should come down?

So if it’s still high when repeated it would either be the infection is still there or it has to be something else?

 

[everydayupsanddowns]

Yeah. I hope I get answers too, it’s becoming unbearable.

Ah so sorry to read this @MarkGeordie

Really hope the latest round of investigations bring some clarity for you and informs a clear way forward for treatment.

Must be so draining and frustrating to keep going round in circles

 

[MarkGeordie]

Its becoming too much now, I feel like giving up.

I am thinking of seeing what is said on the 8th and see how the CT goes and then if I need to, ask for a second opinion from a different haematologist.

 

[Inka]

Don’t give up @MarkGeordie You have all of us behind you, rooting for you and hoping you get answers soon.

I think a second opinion is an excellent idea. I don’t know if you’ve already done this but writing down your questions, showing them and reading them out and literally writing down their answers in front of them can help too, because it focuses their mind and you get more detailed answers, not just ‘waffle’ where it’s hard to pin anything definite down. Also, them seeing you writing down their answer, helps them be more precise.

Sending you my best wishes. X

 

[MarkGeordie]

Yeah I think I need my motivation back.

I think I’ll make a list of questions for my GP call on the 8th as a starting point.