Positive nasal biopsy

[gilders]

Good morning Alysia, it's 0845 UK time.
I'm in bed with my tablet replying to a few new posts. As you know I've got a few things going on at once.
Firstly my WG. Yesterday, if anything, could be seen as an improvement as my nose wasn't bleeding much, quite a suprise considering it had understandably been worsening since I started the anticoagulants. Otherwise much the same - very tired, but not 1 WG related symptom had got any worse, so a good day really.
Secondly my frustrating heart arrythmias and eptopic beats. I had a very good day with mild, infrequent issues. I'm not holding my breath as occasionally I do have an improved day, but maybe the treatment to bring my potassium levels down has helped, or the anticoagulant drugs. The scary thing is that when I do get the painful, struggling pump feeling, it feels like how I'd imagine it would be like if a piece of my blood clot has just broke off and entered my heart.
Finally my leg and DVT/blood clots. I went for a blood test and my INR level is only at 1 so I have to continue with the jabs and tablets. I mentioned that I was concerted as my leg is rapidly increasing in size and is getting much more painful. The nurse was concerned, but said there is no other treatment than what I'm already on.
The last time I had a DVT wasn't as severe as this one and it left a lot of permanent damage. I hate to think how bad my leg is going to get before it starts to settle back down.

It seems crazy that a couple of days after I reply to a post on here about somebody who had a serious blood clot, I end up with a massive one, thankfully not in my heart or lungs though.

[Alysia]

Hi Pete,
we have a difference of 2 hours beteen us. now it is 13:35 here.
it sounds that things are improving, although slowly. maybe the Imuran is already doing the trick. no nose bleed is a good sign
about the beeting heart issue, it can also be a cycle in which feeling it worse might make it worse because of the anxiety. maybe you should also try some meditation or relaxation techniques
take care and continue to update. lots of hugs to you

[Alysia]

long time since you updated us, how are you so far, Pete ?

[gilders]

Hi Alysia. Good to hear from you.
Just a quick recap - Oct 2012 I had a seizure and ANCA results were positive. For the next 12 months we we're sure if I was having a relapse or not as every other relapse I've had has been very aggressive and went straight to my kidneys. This time I was slowly getting worse and no kidney involvement. Sept/Oct 2013 I had nasal biopsy which confirmed relapse.
I started on my usual "relapse therapy" of high dose Pred and Aza which usually gets me back into remission fairly quickly. I actually started much worse from when I started treatment. By New years day I was very ill and my specialist (renal, but takes care of my WG) booked me into hospital and had rheumatologist take a look at me. I was under the impression that I was to start Rituximab, but instead, the rhuemy suprised me by saying lets reduce Pred and see what happens.
By Feb 2014 it looked like this risky choice was actually working and I began to see improvement in both blood results and general feeling. I did end up getting blood clots in hospital and they've really struggled to get my anticoagulant drugs at the correct level, partly due to an infection which antibiotics interfered with the meds and the bone marrow and bone extraction I had done today (I'll get to that in a minute).
March 2014 I seemed to hit a plateau and wasn't really feeling any improvements. In fact things were perhaps a bit worse as I was starting to get some slight nose bleeds and a little crusting/scabs in nose.
I also had another test to do with my breathing, which again (in basic terms) showed that oxygen wasn't getting transferred properly to my blood stream (I am still waiting on further investigations regarding this and my painful, eptopic heartbeats).
I also had a blood film done where they look at blood under a microscope. This has been repeated a few times and it keeps showing abnormal and immature red blood cells. As my blood cells are leaving my bone marrow (where they're made) too early, this might explain why I'm so tired and don't have enough oxygen in my blood.
I had a bone marrow biopsy today to try and find out what 's going on. I find out the results on May 7th which is our wedding anniversary - hopefully a good omen.
So as it stands there's still lots of questions to be answered.
I just want to find out whats going on then I can deal with it.
I've probably missed lots of other issue with my health. Since Feb I've had at least 3 hospital visits a week. In fact I've just remembered I had to see GP today as half of my right eye has lost it's whiteness. He said he wouldn't usually be too concerned, but due to WG he wants me to see an eye specialist.
I think the only specialist I'm not seeing at the moment is a gynecologist!
My iron levels are sky high at the moment (I have hemochromatosis) , but they don't want to treat it until everything settles down.

We're due to fly to Cyprus 6 days after I get my bone marrow biopsy result. I hope the result doesn't mean I have to miss this vacation. Both myself and wife really need it!

Sorry for the long ramble - a lot has gone on these last few month.

[windchime]

Wow Pete what a ride you've had. I hope that you get answers to your liking and that you continue to feel/get better. Good luck with the vaca. Hugs to you.

[Alysia]

Hi Pete,
thanks for sharing. I am sorry that you still not at peace and there are some "shadows" around.... but it seems that things are less bad then before .... ?
I hope that you will be able to go for your vacation.
btw, why Cyprus ? Israel is more 40 min flight, and more civilized (although more expensive) but I am in it
sending to you my hugs and prayers, come more often, nice to have you around

[gilders]

"but it seems that things are less bad then before .... ?" I guess I'll find out when the test results come back
"why Cyprus ?" I've collected Avios (used to be called Airmiles) and Cyprus was the only sunny destination that had availability. We also like trying new places and haven't been to Cyprus. It will also be the first time my wife has driven abroad (she passed her driving test after I had my seizure and couldn't drive), so Cyprus should be easy for her as they drive on the left like in the UK.

[Alysia]

next time come to Israel. not less sunny then Cyprus

[annekat]

Pete, thanks for the update and recap, my heart goes out to you for all you keep going through. I hope the biopsy results solve some mysteries and don't prevent you from your scheduled vacation. I agree, you really need it.