subzero Posted March 13, 2015 Author Share Posted March 13, 2015 Thanks Winnie and Karen Karen-hope your goes well too- 2 week wait for results? -or earlier maybe? How frequent are your scans now? Take care- 1 Quote Link to comment Share on other sites More sharing options...
Karen Posted March 14, 2015 Share Posted March 14, 2015 Sub, my aneurysm isn't totally fixed and this is my 10 year scan...I've also got another dodgy artery on the other side of my brain that may turn into an aneurysm ... my last official one was 5 years ago. Hopefully should hear the results about two weeks after the scan. Thanks for your good wishes. xx 1 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted March 14, 2015 Share Posted March 14, 2015 Hi Karen, You'll be okay but fingers crossed on Tuesday xx Lots of good Luck also xx Love Win xx xx 1 Quote Link to comment Share on other sites More sharing options...
SarahLou Posted March 14, 2015 Share Posted March 14, 2015 Good luck Mrs Sub and Karen for your upcoming scans. I had MRI recently and they told me at the scan to make a follow up appointment in 3 weeks, although when I phoned to book it I was told it would likely be 4-6 weeks! The way I look at it is no news is good news as I'd like to think if there was an issue I'd know by now! Best of luck to you both. Take care, SL Xx 2 Quote Link to comment Share on other sites More sharing options...
subzero Posted March 23, 2015 Author Share Posted March 23, 2015 Well that was Mrs Sub`s MRI done on Saturday morning- First week in on the reduced steroid- 1mg Prednisolone- 5 weeks to go-no withdrawal effects so far. INR spiked to 4.4 five weeks ago then dipped to 1.5 - then 1.6 then 1.7 last week- sometimes it can be a slow process to get to the 2.00 target level- hiccup probably caused by the steroid reduction. The joys of Warfarin dependency! Quarterly check-up with consultant 14th April Thoughts are with all you guys/dolls who live with daily meds and pain. 2 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted March 23, 2015 Share Posted March 23, 2015 Subs, You are a good man, and your post made me cry, just a little !! Glad Wife is doing well and look after yourself so you can look after wife xx Good luck to you both xx Love Winxx 2 Quote Link to comment Share on other sites More sharing options...
subzero Posted April 13, 2015 Author Share Posted April 13, 2015 Hi Everyone Just thought I would mention that this week is quite a milestone for Mrs Sub and myself It was four years today since I got her admitted to hospital with failing kidneys and constant nausea and lack of ability to eat despite trying to continue in her stressful job. Then of course this was followed by her DVT and SAH and Wegeners diagnosis by end May 2011. This morning she had her INR warfarin check-volatile recently because of her steroid reduction. INR was 2.5 her guideline is 2 - 2.5 Also monthly blood test. This is to ensure her immunosuppressant drug is not causing damage to her kidneys and liver. Interestingly we get full results of this on line tomorrow morning by logging on to the NHS Patientview website. Wednesday we visit her consultant to discuss her quarterly progress -and the result of her MRI Scan last month. Also for the past three months she has been on a steroid reduction programme to end up steroid free be next week. For the past four weeks she has been on Prednisolone 1mg but stopping completely is never a certainty. One obvious result of the reduction is her weight loss- for you ladies- a size 14 is now a 12 !! Value your support this week guys and dolls-! 2 Quote Link to comment Share on other sites More sharing options...
Mandy Wright Posted April 13, 2015 Share Posted April 13, 2015 I hope all goes well for you and Mrs Sub this week. Thoughts and positive vibes are being sent your way! Mx 2 Quote Link to comment Share on other sites More sharing options...
Tina Posted April 13, 2015 Share Posted April 13, 2015 Sub I also hope all goes well for you and Mrs Sub this week....4 years milestone ! Congratulations to you both on how things are progressing hope the quarterly Consultant visit is all positive take care both xx 1 Quote Link to comment Share on other sites More sharing options...
Macca Posted April 13, 2015 Share Posted April 13, 2015 Sub, Hope all goes well for you both this week! Good luck matey! I'll be thinking of you. Macca 2 Quote Link to comment Share on other sites More sharing options...
SarahLou Posted April 13, 2015 Share Posted April 13, 2015 Hey Mr and Mrs Sub, your'll both be in my thoughts and prayers.... Take care, SL Xx 2 Quote Link to comment Share on other sites More sharing options...
janey Posted April 14, 2015 Share Posted April 14, 2015 Hi Subzero, I'm quite new to this site and have just read your amazing story. Wow, you have both been through such a lot and it's so good to hear that Mrs Sub is still continuing to make progress 4 years on - that will be a great source of comfort to many people I'm sure. Just shows what an incredible organ the brain is - before my SAH I hardly gave my brain a second thought (awful pun, sorry!), but now I have the utmost respect for it. So many people say that time is a great healer but it's sometimes difficult to accept this after having an SAH as you just want things to return to normal asap. Sometimes progress can seem ever so slow but keeping a diary definitely helps remind us just how far we've come. Like Mrs Sub, I was prescribed Prednisolone after my SAH, although for a much shorter time and since coming off them about 2 weeks ago I have felt much more emotionally 'balanced', so I hope she experiences the same benefits too. Wishing you both all the best for Mrs Sub's appointment tomorrow - we'll all be rooting for you! Jane xx 3 Quote Link to comment Share on other sites More sharing options...
subzero Posted April 14, 2015 Author Share Posted April 14, 2015 Hi Jane- Thanks for your interest and comments- Glad to hear that you are ok following the initial effects you felt when you came off the steroids. Your own story is remarkable- a totally different situation being abroad and on the ski slopes when your SAH happened. How are the two coping with your recovery- ? As everyone says- take the time your body needs to recover-don`t rush to get back to where you were-and accept challenging changes in your lifestyle as you go along- Wishing you both well in the days ahead Quote Link to comment Share on other sites More sharing options...
Louise Posted April 15, 2015 Share Posted April 15, 2015 Sending you both positive vibes... Quote Link to comment Share on other sites More sharing options...
subzero Posted April 15, 2015 Author Share Posted April 15, 2015 Thanks Louise Appointment was at 4.30pm and her scan result was fine- nothing to worry about there. Also all her blood results from Monday were good- as was her INR- So- she was very pleased and just has her final steroid pill to swallow on 25th - and we will know if she can continue steroid free !! All this happening four years on--- we are so chuffed ! It`s her birthday on 23rd so if you, Winnie, Sarahlou, Mandy, Sami, Carolyn, Rob, and Keith have left any of Sami`s cake we`ll join you to finish it off !! Seriously you guys are great- And Louise- hope your assessment is fine tomorrow- 1 Quote Link to comment Share on other sites More sharing options...
ClareM Posted April 16, 2015 Share Posted April 16, 2015 Hi Sub That is all great news, as you say I bet you are both chuffed! It's been a long haul for you both, your wife is very lucky to have you as her husband! Good luck with ending the steroids and hope she has a happy birthday! Clare 1 Quote Link to comment Share on other sites More sharing options...
subzero Posted April 16, 2015 Author Share Posted April 16, 2015 Thanks Clare- Yes- it`s great news- Only those with long term illnesses know the highs and lows and strains of living everyday hoping things will get better. Difficult for both survivors and carers- And expecting too much too soon can really be hard- Its good to see the comments on BTG from those who have been coping with their SAH for some time- they say `don`t rush recovery-be patient and accept there is no quick fix` Take care- Quote Link to comment Share on other sites More sharing options...
janey Posted April 16, 2015 Share Posted April 16, 2015 Hi Sub, Thrilled to hear all went well with the scan - no wonder you're both chuffed. I bet Mrs Sub will be really pleased about stopping the steroids too. Happy Birthday for next week to Mrs Sub - any leftover cake will always find a good home with me! Sending you both all good wishes xx 1 Quote Link to comment Share on other sites More sharing options...
Skippy Posted April 16, 2015 Share Posted April 16, 2015 Sub - great news about the scan - so pleased. Unfortunately not much cake left after family descending in and out all day - could spare you some crumbs though 2 Quote Link to comment Share on other sites More sharing options...
Macca Posted April 16, 2015 Share Posted April 16, 2015 Great news Mr and Mrs Sub - apart from the cake bit! Not much left? Better get baking!! Lovely news though!! Onwards and upwards! Macca 1 Quote Link to comment Share on other sites More sharing options...
Sharlua Posted April 16, 2015 Share Posted April 16, 2015 Just read all your posts and it has been a very hard journey both for yourself and your very brave wife. It is an amazing chronicle of this and so pleased to hear the excellent news. As a person who had SAH in January these stories are so helpful to understand some shared experiences and to know how well people who were so poorly do get back to some sort of quality of life. I laugh at some of your comments around wife questioning your driving my husband has also had to suffer my criticism and irritability since my aneurysm was coiled.Thank you for sharing and I wish you lots of happiness for the future.RegardsSharon 1 Quote Link to comment Share on other sites More sharing options...
subzero Posted April 16, 2015 Author Share Posted April 16, 2015 Hi Sharon Thanks for your comments and well wishes. I am pleased that our story has helped you in some way and made you laugh too ! It`s good that we can have humour in what can be such a difficult physical and psychological fight for progress. I hope you are doing well and also importantly your husband ! Give him my regards- it`s tough seeing the one you love struggle to come to terms with what SAH has done to both lives and I `m glad you agree that BTG is a great support for all who come across it. Take care and keep positive- and sing a long with Winnie ! 1 Quote Link to comment Share on other sites More sharing options...
subzero Posted May 2, 2015 Author Share Posted May 2, 2015 Hi all youguys- Just a brief update- Mrs Sub`s INR was still steady on Thursday so she does not have to get checked for a month. That`s seven days since her last steroid- and so far so good. Louise-I feel what you went through- waiting anxiously and hoping things keep OK is a real strain- thankfully all these quips in the Green Room lessen the load-!! Well- as I said earlier- forty years tomorrow since we first met- four years tomorrow since she had her SAH- I really wish all you guys and dolls continued progress in your recoveries- who have followed our posts since January- 3 Quote Link to comment Share on other sites More sharing options...
Mandy Wright Posted May 2, 2015 Share Posted May 2, 2015 Good news about Mrs Sub's blood test results. A huge congratulations on the forty year anniversary for both of you, too! Mx 1 Quote Link to comment Share on other sites More sharing options...
subzero Posted August 4, 2015 Author Share Posted August 4, 2015 Hi to the many friends I have made on BTG since January- (established members and recent members too) I withheld updating about Mrs Subs too soon as I wanted to make sure her complete withdrawal from steroids was showing steady results. It is now three months and we are both so pleased that there have been no negative effects - as far as she is concerned-her weight has changed considerably and her face has lost the swollen look caused by steroid use. On Sunday she decided to finally pack away all her old clothes which no longer fit and she is back wearing the clothes she wore pre her illness back in April 2011. I know the steroids were not related to her SAH but it is great to see this progress in her recovery. You will recall that when I met Winnie seven months ago, it was me who was experiencing some lows. Mrs Subs had been fighting hard to recover from the illnesses she had and we knew that it would not be for at least three years before we could relax about the Wegeners disease being in remission. In fact because we had been told that the SAH was `fixed` we paid little attention to this. However at the end of last year-with the Wegeners under control- it suddenly hit me that the personality and irritability issues had to be caused by her SAH and with the strain of the past four years - I looked to the future and perhaps selfishly thought how am I going to cope- I hope to give a recap soon in the Carer`s Section on some of the struggles I/we have had which I now know are SAH related - but I do want to end this section by saying that during the past seven months the personality/irritability traits have diminished considerably and I am pleased to say that BTG played a large part in getting us through that difficult patch- I believe that time has played it`s part in healing as well as recognising the importance of being realistic about how many hours Mrs Subs could work without putting her continued recovery at risk- and ensuring that she rests plenty after work. But thanks again to all of you- Subs 8 Quote Link to comment Share on other sites More sharing options...
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