Jump to content

Shobs

Members
  • Posts

    28
  • Joined

  • Last visited

Posts posted by Shobs

  1. Hello Tori - very good to hear about the progress your mum is making! You are doing very well, Well done to you.

    The memory will slip in an out and there will be lot of relevant & irrelevant things said. - my husband had a dream of being in france  and in a very technologically advanced place. LOL

     

    It took my husband a good 10 days to be reasonably stabilised with the memory and speak cogently.

    Re: the eye vision - with the hemorrhage that my husband had, few the blood vessels behind the eye also had burst and had aberration there too.

    Your mum will hopefully be referred to the in-house eye clinic, if not, please ask them to refer you to the eye hospital where they will check the eyes dye-assisted test(which will not impact kidneys) and let you know if all is well.

     

    For my husband (who had glasses already) there was a significant change in eye-power and we got a new set of glasses made.

    Grumpiness and annoyance is something I have faced a lot from Sandeep, because of the haemorrhage and the ischaemic stroke he had, he was not legally allowed to drive until the eye-check was complete/doctor sign-off AND the DVLA approval came through.

     

    I can tell you it was the roughest phases - he was dependant on me physically, physiologically and also in terms of memory! It was not easy.

    BUT it will definitely get better - listen to lots of positive stories and positive people - dont worry about cutting chords with people that darken your doorstep. 

     

    You are doing very very very well - it will get better !

     

    Prayers to you and your mum.

    Best regards

    Shobana

     

    • Like 3
  2. Thanks ever so much everyone!!! We are back home too. 2 days Sandeep was in the Critical Care Unit.

    the First day was very drowsy and the doctor was happy with the procedure - he gave me sometime and asked me ' do you want to ask anything' i was just mumbling and asked did it go okay!!!

     

    I had a million things lined and all i could manage was is he okay? Sandeep's memory was fine, but was drowsy, he was quick chatty that day. Towards the end of the day, there was a lot of throwing up with anesthesia wearing off - they tried to give the medicine orally.

     

    Wednesday was rather a quiet day with headache, and lots of sleep/nap/resting. Thursday was quite an upbeat day where he was clear-headed and was allowed to eat too. He was quite ready to go home from the neurological point of view. then they move him to neuro ward, after 24 hrs of observation they okayed to be go on yesterday(friday around 8 oclock) to go home.

     

    So we now are only coils, no stent, as they have been able to manage just with the coils. This means there is no aspirin needed and there will be no worry about the detrimental effect on the already suffering kidneys.Apparently the remainder of the aneurysm is fully coiled and also the neck! The consultant is extremely happy with the procedure and told there is no other procedure needed if all stay the same.

     

    It was a flood of relief - i now understand 'rug pulled from under the feet' & 'flood of relief sweeping me' to the dot and the dash.

    Said all that there is a fear to be fully happy (i hope to shake it off soon) - we have now come to terms to our own normal and trying to find what the newer normal is, as there have been headaches and mild left side body weakness, (thats where he had the first stroke)  - all again :o)

    And i cant believe i finish it with a smiling smiley !

     

    We are positive and hopeful that it is going to go okay and we will see through this too.

    Next week its the term holidays. In the past years of parenthood, we took turns to take time off to take care of them. But probably for the first time, we are all going to be home for full 10 days, with absolutely no hectic plans or no going away or no visits. Just be together inside our home and get better together :o)

     

    Hugs

    Shobs xxxxxx

     

     

    • Like 7
  3. Lovely people - good news, sandeep's aneurysm is coiled now. I am yet to speak with the consultant to get all the details,but there has been no stent needed, only the coils. Sandeep is being closely moNitoed in CCU for the fluctuating BP.

    Pardon the typos, at the Hosp and from my and mobile, and possibly tears filling up too 

    Love

    Shobs xx

    • Like 6
  4. It was our first anniversary on Oct 9th. I made a big batch of brownies for those that i could share with.

     

    I pinged a message of thanks to all those came rushing to help us and to all those doctors and nurses that helped us through and through and are still doing it now. We told a prayer to all those that are going through it at the moment and wide variety of other problems.

     

    A massive hug to everyone here as you all form my community - someone that understand exactly what we are going through and more, even before I could share.

     

    In Sanskrit, we say - Loka samastha sukino bhavanthu - literally means - May everyone be happy.

     

    Love, hugs and gratitude
    Shobana & Sandeep.

    • Like 3
  5. Thank you very lovely ladies

     

    I spoke with the nurse at the radiology clinic and she mentioned she got all reports about the renal function. The renal consultant has signed off the mild aspirin intake for 6 months following this procedure.

     

    The nurse told we are all set to come in and just fingers crossed that we will get a bed in the ITU on the day of the procedure, so that he can be closely monitored there for a few days.  We are staying positive! :o)

     

    Love,

    Shobs xxxxxx

    • Like 1
  6. Thanks so much Clare,

    we went for the pre-assessment on wednesday and we have been given Oct17th as the procedure date.

    We need to go in a day early as a preparation.

     

    The doctor just told us about the low-dose aspirin that needs to be taken for 6 months and told us that he will consult with the nephrologist, if this is still okay.

    hoping and praying that this is all going to go well. thanks for all the positive vibes.

     

    hugs

    Shobana xxxxx

     

     

    • Like 2
  7. Hello all lovely people again!


    Apologies for having gone away for few months now! It was the kids holidays that kept us rather on the trampoline

    We got an appointment with the neuro radiologist ( after 2 cancellations) and they have started looking into the options the remainder of the partially occluded aneurysm.

    Coiling/Coiling with stent/Clipping eventually.

     

    We are getting the pre-assessment done and the team have mentioned that they will get us a date in October.

    The doctor told us that the coiling and stent will need 6 months of aspirin and the renal doctor is reviewing how is it going to impact the kidney function!

    Sandeep and I are both nervous (about the procedure) and looking forward to it, so we can try and start moving as we'd like to.

    I will post here if i get more info.

     

    Hugs

    Shobs xxxxx

     

     

     

    • Like 4
  8. Hello lovely people,

    I have an update to post here(but a good one!)

    Sandeep had to have a flexible sigmodoiscopy done last week and they found a polyp - non malignant(yay!) they removed and clipped it strightaway :o)

    It has been such a relief for us, as the doctors found it last year when Sandeep had the first heamorhagic stroke.

    We were nervous - but very thankful that it was not as bad as I had hoped.

    On the post-angio note, I am still chasing the neurosurgery team for a follow-up appmt. I will keep posted here too.

    Hugs

    Shobs xxx

    • Like 4
  9. Hello Nat, welcome to this comforting place.

    (my husband had his first SAH, followed by a fair few mishaps back-to-back in Oct 2016)
    Like all of these lovely people have said, it is normal to have this fear. Baby steps at a time helps.

    Both my husband and I took up Yoga in April and it has been very useful. (please PM me if you need more details)

    Set aside a time in the day, when you will ONLY worry. If the fear crosses the mind, check the time and say that one is for my worry time. It has helped me a lot, personally.

    Stay close to people that wish you well and give you lots of positive vibes. Speak to people that smile and laugh a lot!

    Time is a big healer, for all wounds physical, emotional and physiological.

    Hope it gets better for you very soon.

    Hugs

    Shobs xx

     

    • Like 1
  10. I agree Daffodil, I found it rather interesting (I dont know if that is the right word here) when almost all the nurses and doctors peeped into the groin area and said - Ah, that looks alright!

     

    Thanks for letting me know about your aneurysm, I will pm you to find out a little more about it.

     

    The main concern here is it is not a new aneurysm, it has already ruptured but has been coiled and partially sealed. the doctor compared it with a dormant volcane, but that erupted 10 years back, so the chances are 50-50.

     

    I will keep you posted,

     

    Love

    Shobana

     

     

    • Like 1
  11. Thanks Subs & Win,

     

    The doctors told that they will get back to us within 6-8 weeks, so I guess it is waiting time. Apparently the residual aneurysm is 4mm in size.

     

    I agree Subs, time is the true healer. Although it sends a chill down my spine to think about that day, I am incredibly grateful today for all the good things.

     

    I am reading the book 'Dented Image' by Alison and there is a line that so defines the state of mind

    They are not well - They are not ill either.

    To describe the on and off days!
    It feels fantastic to chat to you guys

     

    Love & hugs

    Shobs xx

    • Like 3
  12. UPDATE

    Sandeep had the follow-up angio(the dye assisted DSA) on Apr12th and the procedure itself was smooth. 
    However, the results are a tad bit disappointing - apparently the other lobule of the ruptured aneurysm has not occluded.

    This leaves us with the coiling/clipping/leave it alone options.

     

    The radiologist mentioned that the consultants will send out the letter for further discussion, however, he told that he was able to see the aneurysm unchanged - which I suppose is a good new in itself, that it has not grown bigger in size or so. He was unable to see any other new aneurysms in that area either.

    I was extremely hopeful that they will come out and say all-clear and go-away and it will be confetti time. 

     

    It is waiting time now - wait for the consultants to tell us what needs doing and then decide based on the options we are given.

    Oh and we celebrated completion of 6 month-anni-versary on Aprl 9th! 

    I will keep you all posted.

    Love

    Shobs xxx

     

     

     

    • Like 2
  13. Thanks missy - appears it is about the same time my husband has his SAH.

    He has been trying Yoga for the past 2 weeks and he is able to doze off at least for 2-3 hrs in the night, which i think is a good start!

    They are mostly breathing exercises and slowing down where possible. 

    I hope you find your solution quickly too.

    Love

    Shobs xx

  14. Hello Michelle,

     

    Thanks for your lovely words. He has now slowed down a bit at the work front and properly listening to his body . 

    It is visibly helping him a lot. We both went for a 1.5 day yoga session and it has significantly improved our state of minds.

    Thanks

    Love

    Shobs xxx

    • Like 2
  15. @WinB143

    Thank you for your kind words. Especially about keep away from stress.

    We have had a rocky relationship with his father and sibling and this has pushed it over the edge. I'd have thought this incident will help shake the ugly thing off. If anything, this incident has made me realise the real side of people!

    So, a big like for your 'keep the sob stories away!'

    Love

    Shobs xxx

    • Like 2
  16. @Daffodil - thank you for the lovely tips. I have not tried the oil yet, I should give it a go, at least for the feet.

    Yes, 'to get back to normal' vs 'accepting the new normal' is a mega challenge as of now.  That plus the setback he experienced (experiences) with the CKD, whose damage is not reversible is spiking the stress levels.

    Thank you again

    Love

    Shobs xxx

     

    • Like 3
  17. @Subs - thanks so much for reading the post and your kind words!

    The kidneys are still at 30%, the nephrologist has let us know (following the biopsy early jan) that both the kidneys have suffered an irreversible damage, so he will not be able offer any treatment. Maintaining the BP and being cautious about what we eat is the key to keep the kidneys going for the next 10 years. Then on, there will dialysis and kidney transplant.

     

    There were no known kidney problems in the past Subs - it all came at once.

    Yes, patience is the key!
    Love, Shobs

     

    • Like 3
  18. Hello dear fellow SAH members,

     

    I am a new member in this forum and very happy that i came across this site. I have read and re-read many forums and articles in this site for re-assurance.

    It has been an eventful (and still counting!) since October 2016, when my husband (39) had his ruptured SAH. I wanted to share my story and seek reassurance all in this thread and hopefully, someday like many of you here, be able to look back how it has reshaped our lives for good.

     

    It was a regular day when my husband did the taxi duty for my children boy(7) & girl(5) from their classes. I was at my work when i got a call from him telling that he had non-stop vomiting. He attributed it to the food that he had at that time.  I went to pick him up whilst both of my children took care of their father (yes!)  After we came home, his vomiting stopped, however the splitting headache continued on saturday, but he was able to rest(restlessly) throughout. Since the nausea or the headache did not reside, we decided to go to A&E that morning and it was the Sunday morning that the collapse happened and that was something I will never forget!

     

    He collapsed on Sunday morning, Called the A&E, as that collapse did not look right to me, it surely did not look like a faint due to no-eating for 1.5 days. The A&E crew came pretty soon and they started off their assessment - they did the FAST test, which my husband was fine with. The factor that was worrying them was the BP that was quite high - a whopping 240/180

     

    We were taken to Northwick Park A&E where was taken into a scan pretty much straight away into HDU and they came out to tell me that my husband had a subarachnoid haemorhage because of a ruptured aneurysm and his BP is still unable to be controlled. A couple of minutes later another machine went in to his room and they came back to tell his kidneys were failing too. I was trying to come in terms with what i have been just told and went completely numb. The kids were sent off to friends house and the way friends rallied up to help makes me go on knees with gratitude.

     

    We were told that we need to be moved to Charing Cross Hospital as they have the speciatlity neursurgery unit. THe wait for the bed was quite long but the A&E doctors were chasing them actively. The move happened in few hours! In the charing cross hospital, we were sent to the CCU and 2 options of coiling and clipping, my husband was slipping in and out consciousness till Monday afternoon until he was taken to angio where it was decided they will clip it. However, due to the nature and the location of the aneurysm, the clipping option was aborted and he was wheeled out with the coiling procedure pencilled in for Tuesday. Another torturous day passes.

     

    On tuesday he was taken in for another angio and coiling procedure was successful - yay!  I returned home to se my children after 3 days of total absence, who were housed by our exceptionally kind friends for those days and not to mention my guardian angel, my mum who flew in from India on tuesday to support us. When i returned the wednesday morning, i was greeted with a rather sad news that my husband has had an ischeamic stroke during the coiling procedure. He was taken into the CT scan area for many times to establish if that was going to be permanent.

     

    I was dreamily expecting my husband to wake up cheerfully and that is it, nightmare over. But I was naive (or fooled by many movie scenes) It was seemingly distressing 3 days and the distress was increasing in leaps and bounds in terms of chest infection, less oxygen in take, decreased renal function and the sense of hopelessness in the chief of that ward's face despite everyone's best attempts.

     

    On wednesday, i had another news to take in - which was that the other there is another part of the aneurysm that is still not coiled and it needs continual monitoring. I will never forget that day when the doctor told me about that! On Friday/Saturday he opened his eyes and until tuesday Sandeep was in between conscious and unconscious and much of his talking was not understandable. Slowly on wednesday there was a sudden clarity in his eyes and it was like a light switched on! he was becoming restless because he was unable to move his left side at all.

     

    On wednesday we were moved to the Acute Stroke ward. Those 2 weeks were not very pleasant either with him discovering how weak his left side has become. Nimodipine was still on every 4 hours for 21 days. On top of all the existing issues, we got to know that he had an EColi infection when he was in the CCU) The renal function did not resume and it was still hovering over eGFR 35% and the BP was over 150/100. We were moved to Northwick park hospital for further recovery and also renal function and BP management  Another 3 weeks in Northwick park hospital with various tests and follow-up and scary news and finally we got home on the 14 of November. AT this stage, we did not know anything about the follow-up about the other aneurysm at all!

     

    We were/are still attached to the renal clinic where his BP is managed, at the early days of discharge we had to go in alternate days to see this Godsent doctor who took many of the outstanding tasks in his hands and sent us for tests and mixed and matched the medicines to get his BP under control!! It was/is such a relief to be under his care.

     

    There was good resting at home, however the sleep was tremendously disturbed. Early in Jan, we were going to get a biopsy done on the kidneys, unfortunately we were told that he has CKD stage 3-4. There have numerous test and visits to various clinic between the time of discharge and now. They manifest a change in him each time, seen as a deterioration or a new normal as we beginning to accept it.

     

    He has started to work part-time, but that has taken a set-back because of the fatigue and also another DSA in April 2017 to find how the posterior aneurysm. I hope we get an all-clear. As of today, fatigue and sleepless ness are the top most factor affecting our day-to-day activities. There is lots of medidation, walking, massage, teas in various orders thrown in, but still seems to have less or no effect. Daily sleep quota is not more than 2 or 3 hrs (max!) GP prescribed very mild sleeping pills, but it makes him even more hazy the following day and somewhat elevated BP. With the reduced kidney function (30%) the diet is even more restricted than it would be regularly.

     

    I remember a well said statement 'It is not a sprint, it is marathon' We are into the marathon, one day is not the same another. We are taking the day as it comes, but yes, there are days where I want to throw everything that I have in my hand and howl.

     

    Thank you for reading such a long post!

    • Like 3
×
×
  • Create New...