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Everything posted by subzero

  1. Hello Elizabeth You have been receiving much good advice from the members here- A simple comment I would make as a Carer like yourself -and my wife also has made a great recovery and is still working albeit two days a week now-but still at her busy pressured former job. Your journey is going to challenge the extent of your love for your `better half`! Many times in the future you are going to question how much you can take as you adapt to your `imposed` carer`s role. Love is in many ways shown by how much we are prepared to give- and you are going on a journey which may stretch your giving to your limits. Keep strong- he needs your love and care even if it does not look like it-
  2. Thanks Louise- We enjoyed our Burns Lunch today- Sixty four people attended and the entertainment was very good. A piper, Violinist, Doric Poetry reader and some Scottish community singing- Great fun and the Haggis was good too- Take care and wishing you and your family well-
  3. Hello Rob Glad you found this site. You will get much help, advice and encouragement from the members here. I also just found out about BTG four weeks ago- Getting you to the hospital quickly certainly helped you get the care you needed. How long were you in hospital and what type of work do you do? How many hours are you working now? You will find that fatigue is a common after effect of SAH as you read the comments here. Keep asking the questions that you need to know and you will get help here. Regards
  4. Hi Carolynusa Thanks for your post It's good to be able to smile about something so life changing and serious. Glad you are doing fine We are attending a Robert Burns lunch tomorrow at noon. Have you sampled Haggis and Neeps and Tatties!!!! ?
  5. Thankyou Louise and Daffodil for your comments Daffodil I appreciate the frank insight into your thinking I must say that being patient and not expecting any quick fix makes life easier for both- and if at first you don't succeed your carer must keep trying. Time does heal..... Daffodil- another one that makes me smile is her intollerance of politicians who don't answer the question- --The Prime Minister, The Chancellor of the Exchequer and the Leader of the Scottish Conservatives have all had a bit of backlash by email ,,,, To give them credit she got replies from all! ? Take care!
  6. So here we are 22nd January 2015! Almost three years eight months from my wife`s SAH. She has made remarkable progress given that she also had the Wegeners and the DVT to deal with. She retired from her busy full time work in August 2013 - Although in October 2013 she returned on an Open Contract working two days every week-she wanted to keep her brain active for a while yet doing the job she loves.!! Earlier in my posts I listed her medications. She hated having to rely on pills!! She is now only on the two maintenance drugs that keep Wegeners in remission- A low dose of Mycophenolate Mofetill(also known as Cell Cept) and her steroid prednisolone. The steroid dosage is very low at 5mg every second day. This is being reduced further with a view to stopping completely within 3 months! It is not easy to stop the steroid-She tried unsuccessfully a year ago. The swelling in her face has gone and during 2012 her hair was returning and she was able to discard the wig following a morale boosting trip to her hair dresser to get a trim!!! And of course-her Warfarin for life. The numbness and tingling in her left arm caused by the first two bouts of Shingles have now gone completely. Her stamina has increased-and we used to do walks for up to five miles-For the past year she has been able to do this again-but no steep hills and no `power walking`!! Physical exertion is still a no-no!!! So yours truly is stuck with the washing-ironing-and other household chores-probably permanently now!! She still rests plenty in the evenings and often falls asleep watching TV. What else is different? I mentioned at the start of my posts that when we were told that her SAH had been fixed when the coiling was completed in 2011-we took that at its face value and forgot about it-We were concentrating on getting the Wegeners under control. However I had noticed some `subtle` differences- she had loved watching all the soaps every night. On discharge she has not watched a soap to date! She says the shouting gets to her. She also seemed to approach her work with even more vigour- by that I mean that she did not suffer fools gladly and was quite `hatchet` in dealing with staff working sub-standard. When I was driving she seemed to try and influence my driving decisions-like if she felt I was in the wrong lane-or if I didn`t brake early enough! (with 40 years accident free driving behind me-this new intervention was becoming frustrating) And in the past year she had become more confrontational with me-over what I felt was minor things which she would normally have taken in her stride.. Perhaps you can tell me-what is going through your minds when you react contrary to your previous selves-do you know before you react but can`t control it-do you feel guilty afterwards-or do you just react and that it that? Do you dwell on what you have said that is out of character? Having started this topic on BGT I have become rather ashamed at my lack of tolerance with these issues- It is clear that my wife has made a somewhat miraculous recovery and suffered a horrendous ordeal in the process .I am immensely proud of her resilience. I have had such helpful comments from some of you and for the past four weeks I have followed many of the personal jouneys of both survivors and carers. Many put my own niggles into true perspective and I feel badly about how I let myself take a `wobble` after three and a half years of life changing drama. We both were concentrating so much on recovery from the Wegeners and failed to recognise that my wife`s reactions were most likely her brain just trying to tell us something. We are now talking more openly about the SAH and she has promised to view the Thread- A Letter from my Brain -when we finish our meal tonight. I mentioned earlier that we viewed the Survivors Video last week. I will be forever grateful to Winnie who answered a comment I made on another site (no Al-it was not a Lonely Hearts Site-It WAS Medical) and she told me to keep talking-keep loving and keep singing! And of course directed me to BTG. So A BIG THANKYOU BTG You were there when I needed you-and you are all important. Never give up- keep sharing your feelings -keep talking to people you know who care-and listen to those who have been through it all on a great site like BTG.
  7. Mid January 2012 I was half way through my 12 hour shift-My wife called and said that since getting up she was feeling disorientated and kept bumping into things-and was getting confused. I asked for leave to return home from work- Since getting discharged in June 2011 her Consultant made it clear that I could call him direct at any time if her condition deteriorated. I called him and he asked me to take my wife to the GP to get admitted to A & E and he would have his team ready to see her on arrival. Thankfully my work, the GP and the Hospital are all quite near each other. Going through the GP avoided any queuing at A & E. She was quickly back in his Renal Ward and blood tests off for results. It was revealed that she had extremely high calcium levels and was immediately put on a saline drip. She was also beginning to experience her third bout of shingles-this time it was not the like the cluster on her back and shoulder blades or on her arms-it was affecting different parts of her body- the dreaded Disseminated Shingles-the danger being that it could spread to her brain and cause irreversible damage. Because she was on Immunosuppressant drugs her body could not fight the shingles spreading. All her medication was stopped except her warfarin. She spent two weeks in hospital constantly on the saline drip to reduce the calcium levels to normal. She was alert throughout her stay in hospital and thankfully the shingles was brought under control without any adverse effect. The result of all this............ Her previous pain killer Gabapentin was not restarted and the excruciating post shingles pain did not return, They finally discovered that her Calcichew tablets had been incorrectly dispensed and since the last prescription-a higher level of calcium was building up in her body!!!!! She was discharged after two weeks and went back to her work on the Monday! She insisted to her boss that the fortnight be classed as holiday leave as she felt guilty about being off work through illness!! (Winnie-what are you women like!!) (No we did not put in a complaint- we did not want the stresses that could result. The Consultant assured us that he had initiated a Significant Event enquiry and this would be followed through. We did however change our chemist!) Thank you all who have followed me so far and hope to bring you right up to date next time! Incidentally-I so wish I had found this site from day one- there is so much help within the different Forums and threads-and so much guidance and information from all posts.
  8. Thanks for your wishes Carolynusa Yes -interesting- had Winnie not pointed me in the direction of BTG- ..................... She has done something so timely for my SAH journey with my wife. Thanks again for your interest-
  9. Hello Carolynusa, Macca, Daffodil, Louise, Tina and Super Mario Many thanks for your comments and interest- The more I read into this site the more I become aware of how important it is for SAH survivors and carers to get encouragement from their peers- I am aware that in my wife`s situation she had extremely serious health issues but early diagnosis and controlled rehabilitation was vital in the recovery she made. Many here have had to contend with situations where recovery has been very demanding for both survivor and carer- and it is great to see so much genuine support from members whatever their circumstances. So encouraging! I mentioned earlier that following the SAH my wife`s vision had been affected. When she was discharged-a visit to the Eye Clinic and a very thorough examination revealed that there were many small haemorrhages behind her eyes. They were confident that these would clear up within three months and indeed this was what happened. Back to the big issue! RETURNING TO WORK. From the start-we were both aware that Stress and Wegeners and stress and SAH had to be handled delicately. We would be foolish to halt her good progress by ignoring the facts. Her hair had thinned quite dramatically with the Cyclophosphamide and her face was puffed up with the steroids. For someone who always liked to present herself well-she handled this as something she would have to work through- I was so encouraged by her positivity. We bought her a good wig which was exactly like her normal hairstyle. She was ready to return to her beloved job!!! Her employer scheduled a visit with the Occupational Health GP for mid August. It was a good appointment and he stressed that he would arrange a prolonged phased return commencing 26th September- (four months after the SAH) The first four weeks would be for three hours daily Tuesday, Wednesday and Friday stretching to five days of 3 hours by the end of October. He would continue to see her monthly and agree the next schedule. This was so important-having this GP keep strict control of her return. By July the following year 2012- she was back full time- she had proved to herself that she could do it- Personally from the outset I did not feel that it would be prudent for her to continue indefinitely in the high pressure job- it can be so easy for employers to forget how ill she had been and just pile on the work! Until she got her driving licence back Dec 2011 I made sure that taxis were ordered to take her to and from work when I was on my shifts. Our roles at home were completely reversed- She came back from work and made sure that she rested well- I handled all housework. We were both now 55 years old- and I decided to take early retirement Dec 2012. My wife worked on until Aug 2013. Thirteen months in fulltime work was a great achievement. During that time she had two setbacks- It is so important to not get discouraged when problems arise. A month after returning to work she suffered shingles for second time. We were not sure if this was caused by the return to work-or because of the immunosuppressants drugs she was taking to keep her Wegeners in remission. Two weeks off work and the shingles left her with little sensation in her left arm- however every three hours or so the nerve ends which had been damaged sent messages to her brain that her arm was in agony-and for about three minutes she would sit and scream and cry until the pain resided. The pain killer Gabapentin eventually cancelled out the `pain` During this time her blood results continued to improve and she was getting stronger all the time. Her appetite for food was beginning to match her appetite for work! Then the second setback in January 2012
  10. Prior to her health issues my wife was devoted to her work. She had reached a very responsible position on merit and she thrived on the busy stress filled working day organising meetings, dealing with staff issues, constantly getting challenging deadlines and often trying to meet almost impossible targets-often working at home on her Laptop. I knew facing up to returning to work would be on the agenda at some stage! But for now, she was my five foot two- two size shoe wife of thirty three years and her body was exhausted and weakened beyond belief. And we still had the Wegeners uncertainty to deal with. But she was a fighter- I still wanted to try and make her day as normal as could be. She always got up everyday but slept much of the time in our conservatory. Her kidneys had recovered to Stage three which was good-and she was starting to eat small amounts. In these early days I simply seemed to be totally focussed on making sure she took all her medications at the right time-and sat watching her hoping the pills would stay down! I can`t stress enough the importance of rest in these early days. My employers were great and I had full-time leave for two months. Many days we would take our car to the beach esplanade and just sit for ages watching the sea-the birds and passers-by- Her strength was gradually returning and somehow- we managed to fly to Jersey for a weeks holiday in July. She had checked that flying would not affect her SAH. We spent most of the time on the hotel patio overlooking the marina- peace and tranquillity. She also advised DVLC who asked her to check back in six months with a consultants update. I won`t dwell on the Wegeners implications on this site but for those of you who are interested her medication was- Prednisolone Steroids Cyclophosphamide (a drug which also had a small chemo content which would result in hair loss) and could be cancerous if taken for more than three months. Initially her blood results were off the charts! and this drug had to bring her readings down before this deadline. Atenalol for her blood pressure. Calcichew tablets Co-trimoxazole Metoclopramide, Lanzoprazole Alendronic Acid weekly At first she had to attend weekly clinics to monitor her blood-then these became fortnightly then monthly-bimonthly and currently she attends quarterly. Warfarin for her DVT- the leg swelling had subsided by now-and a filter which had been inserted in her groin a few hours after her SAH- to avoid the clot moving to hear heart and lungs-unfortunately after six weeks they made an unsuccessful attempt to remove it-which means-warfarin for life. And for her SAH-a supply of Paracetamol for pain- but since her coiling her pain had disappeared. By the end of August I could sense that work was beginning to raise it`s head! By this time I had done a phased return to work in the third month- I normally worked twelve hour shifts so at least I had four days off. It also meant that my wife was regaining her independence- getting herself up in the morning and taking her tablets-getting showered-she was making progress- and the Wegners was now in remission
  11. With the coiling procedure completed on Thursday-my wife was making good progress. I remember how on the Saturday I was walking towards the hospital entrance and I must have looked as if I was rather worried-shoulders shrugged and head down- a car came towards me and stopped- the driver came up to me and put his hands on my shoulder. It was the Consultant who carried out the coiling- Things went very well he said- she`s going to recover. An unexpected boost to my low morale and a nice touch by a very busy Medic. By Sunday we were told that we would be going back to our local hospital on Tuesday- During the time when I was not visiting-I had made good use of the Hospital Library to find out as much as I could about Wegeners Granulomatosis. It was not pleasant reading. My text to all my supporting friends that night- She`s doing fine- Venflons are out, Nose Feed tube is out- Oxygen mask is away and catheter is out- we`re going home!!!! A patient transport vehicle transported us back- a change from the Ambulance and two paramedics who accompanied us to Edinburgh- We returned to the Renal Ward !!!!!!!!!!!!!! In Edinburgh she had attempted to walk but her legs were very weak and despite the nurses insisting that she get help returning from the bathroom/shower-she fell several time trying to disobey their instructions. Again this happened in her local hospital- I was going to have my hands full!! On Wednesday she was told that she would be discharged on Friday- I was initially filled with apprehension- a week after her brain procedure she would be home! Her local Consultant confirmed that the coiling was successful- please note all you SAH survivors- we took this comment at it`s face value and from that point totally concentrated on the Wegeners which was still a major issue with my wife`s health. You know from the majority of posts on this Forum-that a successful coiling is not the end of the matter!!!!! not by a long chalk!!! Hence the reason for me visiting this site three and a half years on! Before my wife was discharged I had dealt with some practical issues. Our house was on two floors with bedrooms upstairs and toilet and bathroom downstairs. Our staircase did not have a bannister. My joiner fitted a bannister for me- and our friends also helped me get a bed downstairs to a spare room. On Friday-with the aid of a walking stick-she walked from the hospital exit to my car-and from my car to our house- The next part of our journey was just beginning! Thanks for staying with me you guys
  12. We arrived at Western General in Edinburgh mid Sunday afternoon and were welcomed immediately by the staff there. We were advised that the coiling was scheduled for Thursday if all tests went well. At this point my wife`s speech was slow but clear to understand. Her vision had been affected by SA. Her friends had bought her a magnifying sheet to help her read better. She tried to text me with her mobile but the keys were to small and she kept confusing alpha and numerical. Despite the seriousness of her condition-her confusing messages made me smile. Our two close friends generously took time out and motored down to visit her on Wednesday. They treated me to a nice meal before returning home. Then-it was Thursday morning-830am. During the week the consultant whose team would be carrying out the coiling had explained everything that was going to happen-he was very thorough. How they would carry out the procedure via her groin-first while she was still awake and closing the aneurysm with a balloon before sedating her completely and then putting the coils in place. I followed my wife as the porter pushed her bed to the Theatre entrance- another moment I will never forget as I let go of her hand and she disappeared into theatre. I was alone now-and had already decided how I was going to spend the time- I walked the few miles to the Botanical Gardens- and just walked and walked around this peaceful tourist attraction. I returned to the hospital at noon and met her consultant who said that the procedure was going well. The balloon procedure was a success and now his team were putting the coils in place. He smiled at me saying `it will be well sealed-a belt and braces procedure` He asked me to return at 3pm. Six hours after leaving her that morning I finally was allowed into the HDU to see her. I didn`t stay long-she needed rest and care-and would be strictly lying on her back for the next 36 hours. I walked back to my guest house praying that the next few days would go well. Later that night my mobile rang with a message. `Thank you for being there for me today` it said -........................................
  13. Fast forward to today-lovely meal in Frankie & Bennys then to Cinema to watch Stephen Hocking-A Theory for Everything. Whatever you think about his theories-you have to admire and relate to his courage in adversity- Yesterday we visited my wife`s consultant for her quarterly clinic. I had emailed on Tuesday commenting that for 3 and 1/2 years we had no follow-up about her SAH and I asked if we could see the scans taken after the coiling. We were shown the scans which I found very interesting although my wife was a bit unsure about wanting to look at them. We were told that the aneurysm was not a `berry` type-but rather a long sausage shaped weakness probably caused by the Wegeners disease. Back to our Ambulance Trip to Edinburgh Hospital for my wife`s coiling procedure. -- I had time to reflect on a traumatic few weeks. Seeing her so weak in ITU -with so many wires and tubes-a large red sore had appeared below her nose from the oxygen use-and with every breath there was a cough-and she could not keep awake for more than a few minutes. But midway through the week in ITU she whispered to me-` It`s the anniversary of my father`s death this week-can you arrange to put a wreath on his grave` (which she did annually) and she told me the florist`s name to order the wreath! I could not believe I was hearing this considering how ill she was. Also I recalled going to my workplace the week after she came out of ITU. to tell them what was happening-they could see I was fragile and guided me into a private room-I just broke down and cried-I was scared my wife would haemorrhage again as she was complaining about pain in the back of her head- they hugged me and I hugged them -this release of emotion was such a help to me (I never thought I express myself like this) but I was among great colleagues and after a while I composed myself and we were able to have a coffee together and have a `catch-up` about work. (How Winnie`s hubby coped with her year long struggle in hospital amazes me-) The hospital had given me the address of a Guest House close to the Edinburgh hospital and this was to be my home for the next eight days in our journey.
  14. Hello again, To follow on from my earlier comments- From the moment my wife went to ITU I had great support which meant so much as I was at my wits end. Two of our best friends stayed with me for several hours while we waited at ITU and they kept me well fed everyday. I had called my work because I was due to be working the next day- I was given indefinite leave right away- and my local church members kept in touch constantly throughout the week .I really valued this support and tried to text all these friends each night to keep them informed-this helped me cope emotionally too Our thirty year old daughter flew up from Manchester to be with us. . During the week the Consultant explained to me that the Wegeners was a difficult condition to diagnose-it affects the kidneys, nasal vessels and lungs and joints and GP`s can often misdiagnose the symptoms- which like SAH- if not recognised quickly can lead to major organ complications. Apparently the initial Rheumatoid Arthritis diagnosis was wrong and the symptoms were actually the Wegeners disease. By the end of the week in ITU my wife was given a high dose of drugs to try and knock the Wegeners into remission and she was released back to the ward. We were told she would have to wait two weeks for the blood around her brain to settle then an ambulance would take us to Edinburgh Hospital to have the haemorrhage coiled. During this fortnight her speech was improving but she was so weak she was unable to move much. I did not understand the significance of this, but during one of my visits in the first week-although my wife was very poorly-she suddenly proceeded to give me a terrible telling off! I was devastated at the time because I was exhausted with trying to cope with all that was happening- but I now realise that this was the SAH at work! I was told that she would continue to receive a reduced dosage of the drugs for maximum of three months as any longer could prove to be cancerous. The two weeks felt like an age before we finally set off for Edinburgh. Before we left the consultant was very frank with me. He said-successful coiling will result in a return to the renal ward within a week-however problems during the coiling could result in a return to a Neurological ward depending on the extent of any problems. Stark but fair-but tough on my delicate state of mind. Two conditions which I had known very little about were now becoming the centre of our lives Thanks for .staying with me so far-BTG`s!
  15. Hello Everyone Someone you know called Winnie introduced me to BTG four weeks ago. I have since read many of your stories and comments and found this website most helpful. I have also read the book- A Dented Image and we both watched the survivors video yesterday evening. My wife and I are 57 and she survived a SAH three and a half years ago. Since leaving school at sixteen-she had never had a day off work with illness. Four years ago my wife was diagnosed with Rheumatoid Arthritis. The prescribed Methotrexate caused her acute kidney failure and she ended up in hospital. Three weeks of undergoing tests still proved unsuccessful and she developed a DVT in her leg. This meant daily Dalteparin injections to counteract the clot. She was transferred to a renal ward and at week five underwent a kidney biopsy made more complicated because of the DVT. Now at week six in hospital and two days after the biopsy I paid my daily visit to see her But instead of sticking to my usual visitation time of 2.30pm, I went early that day at 2pm. She told me that during the night she had a massive headache- at five past two she became unconscious in front of me-I rushed for a nurse and our SAH journey began! Much later I was to reflect on what might have been if I had delayed my visit until 2.30pm! Anyone passing would have thought she was just asleep. With the alarm raised-she was put into an induced coma and transferred to ATU. These were the worst moments of my life- I was told that her chances of survival were 50%. After two days in ITU she gradually came out of the coma and proceeded to pull out all the blood lines and tubes attached to her. By mid week I was told that they had also made a diagnosis about the original problem-she had WG (Wegeners Granulomatosis)-a serious immune system disease where the body`s immune system destroyed it`s good cells. Thirty years ago the life expectancy was five months-now with medical advances hopefully it could be put in remission with powerful drugs. Also prior to hospitalisation she had suffered the onset of shingles- I am sure all of you can imagine how I was or was not coping with my wife fighting to survive these serious problems. I will continue with this link and explain her progress later and hope that our experiences three and a half years on will help someone and also that we can be helped by your comments too.
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