My visit to Royal Brompton

[Sand64]

Hi Everyone..Well I had my appt on 26/11/2014..saw a Consultant who works closely with Prof Wilson, had x.ray & bloods on arriving, then consultation with dishy consultant.😉 He listened to lungs & heart & informed me I do infact have systolic heart murmur! We talked about my history & probs I,ve had getting to see my local hosp consultant, since he diagnosed me with Invasive Aspergullosis..He gave me appt to go back in 8 wks, but may be sooner if bloods Imuno cap high as it had been around 200 in April ..Journey there & back was not easy, I drove to Grove Pk to pick my daughter up & then left my car there & got train to London Bridge & 2 tubes th South Kensington, the 15 min walk to hosp..

24 hours later, the consultant I saw, rang me himself! to say blood Imuno cap reading too high & I need to be admitted for 2 wks..as was xmas coming up, I said after would be better..blood been high for well over a yr, so another few wks can,t hurt! I got appt through for 26/1/15..but no bed on day so went in on 2 Feb instead..my son collected me & daughter came too, so did,nt have to leave my car in London..From the minute we got there, I was having bloods & x.ray & questions & then admitted to a ward with just 3 beds..Food was next & Altho I have been losing appetite & weight for previous 9 months, food there is best hosp food ever.!! I had Bronchoscopy the next day & not best one I,ve had as sedative not working as was so fast & aware of everything..it worked after & I had oxygene mask on? I saw my Consultant when back in ward & he said the wash performed had not cleared lungs & still congested at bottom of both..plus being left so long without treatment, I now have severe damage to left lung & infection around it, so I would be having 10 days of i.v antibiotics & anti fungal too, but see what test results show in next couple days to access meds..I asked about the Emphysema he mentioned in letter to my GP about my consultation in Nov, he explained I do have symptoms of it, but not the type caused thru smoking? My local hosp consultant had never mentioned that before? I was unwell later that day, with high temp & dizzyness, can happen after Bronchoscopy, it seems, plus headache for 3 days too..Well the rest of my stay was seeing, Drugologist about Meds & told me to stop taking high blood pressure Meds I have taken for 2 yrs as they contributed to random tongue, throat glands & face swelling I had been having plus cannot have Voricanazole either after re action in May after 5 days & vision probs..I mentioned that in my last post I believe?

I also had probs with i.v locations & had it moved 4 times in 4 days..then a Staff Nurse suggested a longline I.v, which was new to me, but solved the problems & could move arm freely too..So after a wk l was already feeling so much better, plus Physio had issued me with a nebuliser & a pipe thing that is like blowing thru a straw & makes me cough, as I am unable to do sputum, i can't it's disgusting to me..but had to clear lungs somehow & coughing helps..After 10 days the antibiotics ended & I was started on Itraconazole anti fungal starting 2 days before my discharge, to see if I had re action as very strong, I have to take them for 8 wks & my Consultant came to see me again before I left & still could not give me proper diagnosis as it's complicated & I have to be re admitted on 8 April for i.v antibiotics again.. The Itraconazole is dose given 200mg twice a day for Aspergullosis?.. When I left hosp, I felt best I had for 2 yrs & not getting out of breath & appetite back, the good food saw to that too..I had lost another Kilo while in there too..but eating well from first wk..I came out on 14 Feb with a new nebuliser to use 2 times a day, but so much salt I have only been using once as my BP high again & salt can't be helping? But been so much better,feeling normal !! have to have blood checked every couple wks the Consultant said, because these anti fungal can cause Liver probs or failure!! I had to ask my GPs reception twice about that & then go in & ask again before they checked with a Dr & she said have it done in 4 wks? By which time I will be back in The Brompton?? So I saw the better Dr in the practice & had them done last wk..results ok..Problem now is I have been getting very breathless again for over a wk now & although I have been eating lots better, I have lost 5 Kl since being home??

Well that's all folks, sorry another book, but I only check in every few months..

Hope everyone is as well as can be expected...love to all...Sandy xx

[peege]

... but a very positive book! Congrats on getting there and getting all that treatment too.

Re your returned breathlessness, can you make an emergency appt at GP just to check you've not got an infection again? good luck & looking forward to the next instalment! P

[Sand64 in reply to peege]

Thank you peeve,,yes was feeling very positive & still am as if it is ongoing Aspergillosis on top of other stuff at least I,m told that I will only be in care of Brompton, & hopefully not referred back to local Consultant, because I believe it's their lack of care the past 2 yrs & especially since April last, is the reason damage is now severe..i,m also a little afraid as maybe the antibiotics going out of my system in past few wks, means I am deteriorating again & it's going to be ongoing occurence, that's why going in again for mor I.v antibiotics in April, no cure just managed..The weight loss is also worrying, because my appetite was back for 5 wks now??

I want to do some painting in here & hope that won't affect me too..As for GP, I have been to them several times last yr upset because could'nt get my breath & they said chest sounds clear?? Consultant at Brompton said its because this type is not like usual infection, it does'nt move, so no sounds of cracklings etc..silent to GP, even tho I kept telling them something wrong!! Brompton said if get unwell to go back to them, but i don't want to waste their time & journey if to be expected?.. As i,m deaf, can't make phone call, so if carries on, I will get my daughter to ring...

I,m still happy as can trust The Brompton...Sandy xx

[Sand64 in reply to Sand64]

Sorry I did type peege , predictive text ?

[Sand64]

Hi flibbert I, am I the only one on here that uses my real name? Thank you for your informative message..I am finding out more as I go along..Yes my main problem was Bronchiectasis, that was caused by Severe Pneumonia in 2002, plus as I had a violent partner then, I lost memory of what happened & made me drive back to London that night..but I had the severe pneumonia & after admission to hosp, also got Guillain Barré Syndrome, because of stress of whatever I have blocked out..I was in coma for a month & was paralysed from neck down when woke.plus drugs that saved my life, also made me deaf...but that's then!! ..I was,nt diagnosed with the Bronchiectasis until 2006, when I was admitted to my local hosp, now in Kent, with another health problem..Then the past 2 yrs since my evil partner died, I have been getting worse but problems with appointments etc..which I put in my post last year..& no treatment, I had to involve PALS & that's how ended up at The Brompton..I am not sure about my diagnosis, as my consultant is Dr Loebinger & he said its now got complicated, I was not in the Bronchi ward, apparently that was on floor above, but someone told me about it..as I miss some things said to me, I,m confused as to why starting to get so breathless again, he has'nt said which type of Aspergillis I have the Meds for? It was my local none specialised consultant that said that as it was negative to the allergic form that you have & as Imuno cap was 200 in April last..he must have assumed?? I don't know as not seen him since & Dr Loebinger, said its usually people with bone marrow transplants or AIDS patients that get that & I have had or have neither, so I,m confused to what's happening & thought it was my fault for not using nebuliser enough, but the salt is so strong & I have high blood pressure too, but just got new Meds for that from my GP last wk, as the drugologist at RBH stopped my others..

So just have to see what happens when go back next month, I did not realise I was seriously ill, I thought it was the circumstances of past 2 yrs..& not enough exercise etc.. Long story..as if this is'nt, lol.. I did'nt know RBH was specialist hosp, til admitted, but the day I left it was another Dr I asked if I,m unwell before go back, do I go to my local hosp & he said No, you come back here??.. I had'nt intended to yet, it's just as I,m getting breathless again, maybe that's normal then?? Only Meds I have are the Symbicort inhaler which does nothing, & the saline nebuliser, I use once a day, & the blow pipe thing..The RBH is old as you say, it's Grade ll listed, same as building I live in..but the care is def brilliant, so many Ologists & pharmacist around all day, everything dealt with before you leave..I was suprised curtains round beds were still old cotton type?.. As I have limited hearing now..my sense of smell has become more acute & I noticed by the lifts & in them, on the floor I was on there is a distinct smell of mould..not sure if it's from the plants there, or maybe inner walls of lift shaft..but was strong to me & that is spors, dangerous to lungs!!.. I mentioned it to someone..but don't know if it was noted..

Anyway, they have made me feel more positive, but still frightened of what is happening to me now & if I have got Invasive type??

Sorry another long reply, explaining..as I do..Thank you for more info, much appreciated..& yes the wifi was welcomed, as my i.pad is my main way of communicating...Sandy x

[bikergrove]

Wow you have been through the mill sending you my good wishes for better health , lots of love x

[Dedalus]

It's great news that they're trying everything to get to the bottom of what is wrong with you - please keep us updated after your next visit. It's certainly all very positive re long-term diagnosis etc. Best of luck and all best wishes. x

[shell13]

You have been through it , re getting to the Brompton you would probably be able to have hospital transport if u find getting there a problem . Another way I used to go is get a train to Victoria and there is a bus from there that stops right outside the hospital .

I'm also with Prof Wilson, I first saw him as a junior doctor , I prefer to see Dr Abdul now he is lovely , still part of wildons team though . Good luck with everything. I would suggest u contact Brompton now if your starting to feel unwell again , don't wait for your next appointment xx

[shell13]

I can't stress enough to contact the Brompton if getting breathless again, it's better to catch things early . You can always call somebody in Prof Wilsons team for advice , don't wait til Aoril and struggle and make do when u don't have to .if u don't feel able to talk over the phone then write them a letter. Also u should receive copies of letters that have been sent to your gp after your stay . These letters are quite useful in that they explain what's been done etc.

[jenss]

Yes please Sandy listen to flibberti and go back to the Brompton urgently. Investigate getting the transport as shell13 suggested. You already have severe lung damage and you cannot afford to wait to be treated. As you are loosing weight again this is a sign that things are on the down again. Please get your son or daughter to take you back to the Brompton urgently. Good luck and best wishesxxx

[Sand64 in reply to jenss]

Sorry Jenss, did,nt see this til after replied to other lovely people..I have asked flibbert to forward e.mail address to me & I will contact the RB regarding how I feel now..Thank you & will keep updating..love Sandy xx

[Sand64]

Thank you,

biker grove, Dedalus & Shell 13 for your support & Shell, I was given a copy of letter for my GP before left hosp, but my GPs reception said never received? So I took my copy for them to copy..the advice on train & bus, will be useful for my daughter as she has to travel from Grove Pk & walk from South Kensington, to visit..

Also is it normal to have lost more weight since been home even tho eating ok & too much choc?

I still feel better than have for 2 yrs apart from breathless again..but I will get in touch with them if this carries on, I thought maybe new meds..Amlodipine 50mg for high BP maybe contributing? I can ask my daughter to ring hosp, she lives Grove Pk 25 miles from me..Or better still flibbert the e.mail address..thank you..

Love to all Sandy xx

[Annieo]

Sandy Your GP or the hospital consultant has only to say you need transport and you get it from anywhere to the hospital . The only problem is that you have to be ready to go from about 7 am They stipulate that you should not be able to get there any other way but your description of your travels makes it very clear that you really cannot be expected to use use Public Transport . That is the position that I am in too and I just ring up and ask the ward to request transport for me .

[Sand64]

Hi, Annieo..well last time I got my son to drive out to here from London & pick me up, 25 miles, the RB about another 10 miles once get to End of Sidcup Bypass..he took day off work week before too, but they had no bed, so did not go til following wk..I did ask for transport home a few days before discharge, but they told me the day before that as I had my son bring me in he should if poss, collect me & take me home too..unless he really can't..Plus I did'nt leave hosp til afternoon .Plus I have to wait for phone call by 10.30 a.m on day of admission to see if bed available, like before..So really is best if I get him to take me or may have wasted journey with transport..But thank you for yr advice anyway..Its near impossible to park by hosp too, but I have disabled badge, so he can use that if finds a bay..!, Sandy x