For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Wednesday, 20 August 2014

Going Home

I think one thing that has come from this admission is we know for sure that I do have bronchiectasis and scarring of the airways. This was apparently discovered after my chest CT in March, (yeah, the one that the other team dismissed as "normal" and now it magically shows something...smell that? I smell bullshit from somewhere and I am going to find out who it was and in short, their ass is mine.) and I am already on what would be the best treatments and care needed.

The problem I seem to run in to with the consultant comes from the fact that he has never seen me in the throes of an asthma attack because by the time he can come to see me and review me, I am over the attack and am in that kind of shaky post attack stage where I am either very sleepy or I have started to bounce back. He didn't look much in to my history and was pretty sure that my asthma is very much the same as what I had 10 years ago (I wish!) and he didn't notice the A+E notes, the previous admissions or anything else. I do think that they had the 1st volume of my medical notes which hasn't helped but that then makes me wonder, where my other volumes are. In some ways it's like turning up at the cinema during the last 20 minutes of the film and only getting a small part of what happened. So all he sees is the kind of post attack which makes it hard to determine what my asthma is like day to day. He doesn't see (or have all the same evidence that everyone else has, as I said, a lot happens in 10 years) that I get so breathless day to day so I am glad I'm under a team instead of one doctor.

When the attacks are over, I can have (with assistance) a pretty alright quality of life. I'm not running marathons or partying all night, but I get by. Luckily for me, the other consultant, Dr Lal has seen me during an acute attack, as has Dr Brocklebank (who once attended me in resus and was finally turned around on all of this). The problem a lot of consultants, like my Dr Vathernan, have these days is that because they have so many patients to see, (he didn't remember seeing me in March, but he was there!) and they only see what they see when they see it, it's hard to decide how severe something is off a small chunk of the bigger picture. Sometimes, because I am a really complicated case, it can be hard to take in the whole portrait instead of tiny postage stamp sized portion of the picture. The other thing he seemed so focused on was just how much medication I am on and all he seemed to want to do was reduce and stop things. Luckily he saw the light with the nebulisers and listened when he was told that they work for me, he really wanted me off home nebs but I think after a good long chat, we decided to keep them but I would be best going back to SBAU.

I'm kind of on the last few desperate attempts to regain control. We tried taking me off some meds, which unfortunately didn't go so well. Again, (like a thing we did in SBAU where I was taken off EVERYTHING, stripped down and started again) which I could have told them would happen but I think sometimes they have to see it for themselves. We're trying a new medication called Spiriva. I have never had it before so I am willing to try anything. We did try going back to Seretide for my asthma but honestly, all that achieved was I had a small attack before bed last night which meant that I didn't get a whole lot of sleep really, took us ages to calm it down and by the time we did manage, I was too exhausted to care.  My oxygen has been increased to 1-2l at rest (if we can get it to just 1l at night so that I stay comfortable and breathing easier) and I am going to be assessed by the respiratory nurse to get a special concentrator machine at home, along with my current 6 cans. It was decided earlier that this would be needed but the consultant had a hissy fit because he didn't want to accept that my asthma is brittle, but as the nurse said, it is sometimes a case of his ego gets in the way and being proven wrong annoys him, not to mention his idea that nothing has changed over the last 10 years.

I do have my diagnosis from an asthma specialist. I went through the process of diagnosis years ago and we started from scratch at the SBAU in Birmingham. The one thing I am really struggling to come to terms with is the fact that I have had 2 conflicting diagnosis' on the COPD matter. One person says one thing, another says the opposite. Who do you believe?! Dr Lal, who everyone sings his praises and rightly so because I have been seen by him a few times and he has exacted a lot of positive change in my life, or Dr Vathenan, who everyone is saying has a nasty habit of not listening to people and has in recent years started to become a bit past it. I'll entertain the Spiriva but I really am not seeing much improvement from it and all it has done is dry my mouth and that's it. But I said I would give it a week and I will do just that. I was told by the junior, who was wonderful and listened to me when I got upset about the pain, he said if I didn't feel any better after a week, call the GP and get back on Atrovent. It's all a little confusing to be honest and I was proud that I managed to keep on top of my asthma for 12 weeks (sometimes by the hard way but we got there) and the Jr doctor who has been helping me has agreed that chances are this was a blip on the road and a radical shuffle of my meds has probably caused more harm (or at least more frustration) than good really. Kind of what I said from the start (but what I do I know eh? I only live with these issues day by day, I wonder if doing an "I told you so" dance would be in bad taste?).

I am set to work with respiratory nurses to try and make the best of things but the final say so will come from the consultants. With 2 out of 3 of them on board, I can't see myself running in to any issues and the respiratory nurse agrees with me in that one. I think the main problem is that we can't definitely diagnose asthma or it's severity. Some patients could present one day very well and then at death's door later on. I think I am happy that I am going home tomorrow, the old dear across the way is driving all of us potty because she constantly moans and screams out "Please help me!" and loads of other misc moans can complaints and groans. I know she can't help it, but when you're trying your hardest to sleep at 2AM, you really don't want to have to listen to it, especially when they do what they can for her and all she does is attack them in return.

I was talking to the student nurse today and she told me how the family just dumped her here and refuse to take her away until she goes in to a home. I think when families do things like that it's horrible. It's like they no longer continue to be human beings and are just a nuisance to be "thrown away" just because the family can't be bothered anymore. The unfortunate thing is that they get left on hospital wards where they could pick up infection from anyone/anything and they increase the demand on the nurses as they have to spend more time tending to them as they can be very demanding, again it's not their fault, combative and no matter how hard they try, they can't seem to keep track on all of them, especially the wanderers. The other people this has a knock on effect on is the other patients in the bay. Because of 1 or 2 demanding patients who want to be nursed 1-1 all the time, regardless of whether they need it or not, not to mention the paperwork, the other patients don't get the level of care they need, and if they're a screamer, they sometimes end up keeping the other patients up all night as they don't know they're doing something they shouldn't. I've been cooped up with 3 screamers for the last few days.

One is just confused and sometimes asks us random questions, she's harmless really and every so often you just have to talk to her and it can be quite fun because she likes to talk about her children. We have one who randomly wakes up and asks for help to get out of bed, back in to bed but the nurses are being a bit tough and trying to motivate her to move herself. Again, once shes settled, shes no problem. It's the third one that makes the rest of us on edge (even the two ladies) because any time in the day or night she starts shouting, moaning and crying out, the nurses deal with her but never find any problems. She needs to be in a proper care home, where she can get the 1-1 care she needs, not being left in a hospital where she is obviously in a lot of distress, is scared and is making the others nervous and scared, I feel for her, I really does because all they seem to do is give her meds to help her go to the loo but shes obviously in a lot of pain and is very scared. I really hope they help her to safety and she manages to find a peaceful place to rest.

As for me, I am planning on discharge today (YAY!!) and I will probably call up and get advice regarding Spiriva as I am skeptical, I have needed my inhaler more today, we'll try anyway. We don't know what we can achieve until we try do we? But I can can say that Seretide and I won't be mixing again, just doesn't help me and well, I was kind of annoyed that they made me open a new inhaler to have 1 puff and it do that to me. I took it and this sudden  pain and tightness hit me, before I knew where I was, I was really struggling and needed a lot of nebs to get settled down, so I am back on my Symbicort, so really not a lot has changed but at least we know that I have developed something as well as my asthma so there is more of a reason for my issues now with the bronchietatsis and airway scarring which is unfortunately a forever deal so I have to just do what I can and see where we end up. I can't wait to get home, the care here was great but I am not going to miss the patient going berserk at 4am!

Wendy xx

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