Cross to bear

Hide and not seek. This is the latest challenge for people with the life-threatening illness Cystic Fibrosis (CF)*…

Under current medical guidelines CF patients have been advised to no longer spend time with each other. It’s all down to the risk of making each other more ill from cross-infection.

From my experience it’s hard for CF people themselves to come to terms with, especially those like me who have lived for 41 years, who didn’t previously have such restrictions placed on them. Some regularly meet up or live together. It’s certainly not that well known outside of the CF inner circle that sufferers can’t really mix together.

Cross-infection is an issue of considerable concern for the CF community. Those with CF attract different bacteria or ‘bugs’ that grow in their lungs, which may be harmful to others who have CF but who do not have the same ‘bugs’.

Bugs such as B. cepacia complex and Pseudomonas aeruginosa can be transmitted from person to person by close personal contact, such as sharing rooms, sharing medical equipment, sharing cutlery or crockery, and by kissing or coughing.

There is little risk of transmission of ‘bugs’ in an outdoor environment, but travelling with other people with CF in a car or a coach, or meeting them socially would introduce a higher level of risk.

There is a worry that CF patients are more likely to pick up strains of these bugs from each other that are more difficult to treat than strains picked up from the environment. For this reason, CF Centres and Units are now encouraged to offer separated clinics.

This gives the expression ‘dangerous liaison’ a new meaning. But how does this work in practice?

I had a recent outpatient visit to Frimley Park hospital to assess the state of my lungs as part of my IV treatment. Up to a couple of years ago, I would have waited (and waited) in the reception area with other patients and their families until our names were called to go into the doctor’s room. I got to know a few other patients and we would often chat (and cough) and chat. We might even have some of the gourmet tea from the machine.

As my CF Unit has gone with the times and latest trends in CF care, on arrival, I am now ushered straight through to my pre-determined treatment room and the doctor comes directly to me (now there’s power!). The knock-on effect is that I don’t really see the other patients as I previously would have done. This might actually suit those that don’t want to engage with others about their CF.

We can hear the coughing from the separate treatment rooms, usually set off by blowing into the medical equipment, but we are unable to see each other. It’s like listening to the crickets on a warm climate but never actually spotting them. Our solitary confinement makes the clinic feel like we are staying in the Alcatraz ward of the hospital. A case of splendid isolation you might say…

If I do venture out of the room to ask for help and happen to come across someone else with CF during my journey, I’ll always try to acknowledge or speak to them from a distance. I won’t talk into my sleeve, like some FBI agent, I just won’t get too close as we speak. This does feel strange and slightly awkward. Unwittingly, one parent of a CF adult always covers their mouth when they meet me, which makes me feel a bit like a leper.

How does this cross-infection affect activities outside of the CF clinic?

A forthcoming CF fundraising black-tie ball has been organised in Southampton by a CF person I know and I’ve not been invited. I completely understand this is due to the risk of cross-infection so I don’t take it personally. It is a shame though as my mum, elder brother and his wife are all attending and I do look good in black tie!

Also, my mum’s Christmas card CF fundraiser will tend to feature me as the sole CF representative; and for my new gym membership in London, the management are looking to check if they have any other members with CF so that we are not exposed to each other.

From my experience, there’s only so much you can do to be pro-active. In my day-to-day life, I’ve probably been in close proximity with other CFers without knowing it – in offices, the underground, trains, pubs and public buildings like museums and sporting grounds.

In this brave new virtual CF world, it’s a shame that CF folk can’t openly meet up and chew the fat. By not being able to see each other’s body language, we miss out on the most powerful form of communication and engagement.

Our solitary existence has increased the use of other engagement channels like this blog, my forthcoming book, and social media such as Facebook, Twitter and the CF Trust online forum. Perhaps in the future CF will only be discussed in the form of text speak?

I believe that the CF community knows each other pretty well through our battle with this wretched illness. I think I have a quicker connection with a CF person that I meet for the first time than with some non-CF people because we already know each other’s pain and daily life struggle. In some ways, maybe we don’t need that face-to-face time getting to know each other?

I do feel it’s important not to hide your CF away and have at least one person with the illness that you can connect with on the phone or online. I tend to use the elder CF statesmen I know, Sean Bell and Chris Miller, for my sanity checks.

To meet or not to meet? That is the very real dilemma for people with CF. We need to know the risks associated with cross-infection and be as sensible as possible about how it’s policed. It’s yet another cross that we all have to bear.

Want to help CF people get a very important drug (Kalydeco) that’s being held up by cost – click here to sign the e-petition.

View a recent Mail on Sunday article about how a young CF chap has helped his CF by working out in the gym. The article also references me for my ‘flabs’ rather than my abs!

I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up if you have not already done so.

Yours cup half full.

Tim

Tim Wotton

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.

For more information and to find out more view the CF Trust Website.

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About Tim Wotton

I live with my lovely wife (Katie) and spirited ten-year old son (Felix) in Morden, Surrey; working full-time as an internal communications specialist in the Oil & Gas sector. I have played sport, particularly hockey, tennis all my life and now regularly go to the gym. Cystic fibrosis has been a huge factor in my life, but not one that overshadows it. I have always had great support from my loving family - parents Margaret and Douglas (RIP), elder brother Chris and my twin brother Jez. I have many rich life insights based on knowing I have a reduced life expectancy and battling against the odds for over 44 years. My eyes and heart have been opened by my health struggle. I feel empowered to share my life lessons to help anyone with health and life issues to overcome. My passions include Paul Smith clothes, dress shirts (believing that it's enlightening to dress like it's your last day on earth), Alfa Romeo cars, spicey food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history. I am available for public speaking on this subject matter and can be contacted via timwottonAThotmailDOTcom. I have written a book 'How have I cheated death?' based on my euphoric countdown year to 40 which was published in 2014 and won the 2015 'Best Achievement' Award at the UK People's Book Prize. It is available via e-book, audiobook and paperback at Amazon and to order from UK bookstores. Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM
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36 Responses to Cross to bear

  1. Sara Bowery says:

    Yet another fantastic read thanx Tim and O so very true..looking forward to reading your book 😀

  2. Tessa Morrish says:

    Very well written Tim and point taken! Love Tessa PS you do write superbly.

    Sent from my iPad

  3. Timothy Betts says:

    Nice post Tim and an eye opener. Keep fighting the good fight digger.

  4. JJ Metcalfe says:

    I’ve been discussing this issue more and more with any one who will listen. While I get the idea behind the precautions being taken, I think there is something to be said about being able to meet and talk to people who also have CF.

    Just the other day me and my Mum got talking to a girl with CF while we were waiting for a room in clinic, and it was great hearing her stories and sharing some of our own. And the main reason is because we don’t get to do that any more.

    I know the CF trust do things like phone-focus groups, and hospitals are trying (badly) to create online communities but call me old-fashioned, it’s much nicer to talk to people in person.

    I think people have just realised that cross-infection is a bad thing, and then only way to deal with it is limit all contact. Which makes sense, but at risk of playing devil’s advocate, maybe there should be some research in to finding a happy medium.

    I could go on forever about this, so I’ll just stop now. Good article and glad to see that some one else has been thinking about it too.

    • Tim Wotton says:

      Hi JJ, Yes this is a hot topic right now. I think if common sense prevails CFers could still meet up – a pub beer garden perhaps which is outside and sitting a reasonable distance from each other.
      The power of human story telling and sharing cannot be underestimated, more so than ever around coping with CF – it’s finding the appropriate channels that suits each sufferer.

      All the best
      Tim

  5. Rich says:

    A gd read m8 i have CF myself and am currently dating another CFer lady i have just been accepted at Harefield hospital on to the transplant list for a double lung and i’m 30. My lady friend and i have accepted the fact cross infection is a risk to take but what can you do when u truly want to spend your life and love this person til the last breath??? When i have the transplant if all goes in my favour the CF will never affect my lungs in the rest of the life i have so we are hoping that between now and then we can just hopefully take the risk and then not have the cross infection problem as the new lungs wont have CF to be able to cross infect 🙂 i understand it’s a big risk to take but i’d go through this a million times over if i knew i was gonna be with this lady through it… would u say we’re wrong to risk or would u say if thats what the heart and soul wants then thats what the heart and soul have to risk, sorry about the Essay lol but i hope people who feel the same as i do about a CF partner would live life to the full and enjoy it cuz u only get 1 life and if u can share it with some1 who understands the life u have to lead then surely the risk is just something u can both accept and cross that bridge when u get to it 🙂 loved ur read fella would just like to hear how others feel about the subject 🙂

    • Tim Wotton says:

      Rich, Thanks for your candid and honest reply. I mentioned CF people living together as I was aware of other CF couples who were married. You can’t help who you fall in love with and all this cross-infection guidelines probably were not so in evidence when you first met each other. Good luck with everything and it’s touching to hear your live for your wive pour through your text.

      Keep well (both of you)
      Tim

    • tina kennedy says:

      Dear Rich

      I first met my late husband who had cf in 1982 and in those days there was no talk about cross infection and cepacia wasn’t even known about. We set up a local get together group of cf’s and friends and partners and eventually he and i got married in 1989 having started dating in 1986. He was always having problems and operations of one kind or another. Our friends and ourselves were told not to mix in the mid 1990’s and it really his us hard however, everyone in the group took the decision of their own and we all decided to continue to meet up and do our social get togethers inside and outside. Several couples got together with others including several cfs together. Gradually the word cepacia entered our vocabulary more prevalently and members of our group were getting the strain and we began to lose friends to it but still we carried on. We were determined not to let cf get to rulely our lives. Yes it did take many of our friends over the years but we are now left with none who have cepacia however many are still left despite having all these years continued to meet with each other. My husband lived until 2011 when he died on his 51st birthday. Still a lot of his friends from the group socialise some with transplants and some without however, it just goes to show how listening all the time to the professionals doesn’t always mean that you have to follow them. Despite losing my beloved husband Neville who had many problems when he died he didn’t have a transplant and lived his life to the full enjoying his holidays and his long term friends most of whom are now in their mid to late 40’s.
      Keep on doing what you want to do and follow your heart and life will be fulfilled,
      Tina, Coventry, England

      L#;[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[

      • Tim Wotton says:

        Hi Tina,
        Thanks for sharing your story and I’m sure Rich would be touched by your words. Bless you for your memories of Neville who will always be in your soul.

        Take care
        Tim

  6. As mother of 2 boys with CF keeping them apart is almost impossible, but at one is 17 and the other is 9, they have different interests and hate each other, so that helps with cross infection problems! It is a big shame that people with CF can’t meet up, but I do know many do and I know of several couples with CF who got married. Life is difficult enough living with the condition without seeming to be treated like “lepers”, but having dealt with CF for over 12 years and heard of manh losses to the condition, I understand the need for segregation well. I am thankful for Social Networking sites which bring familes and friends in the CF Community together – a place to draw on support when needed. Looking forward to reading your book – you are very wise!

    • Tim Wotton says:

      Hi Lorraine, I take my hat off to you – two CF boys – well done on keeping them going. Also thanks for the compliments. I don’t recall being called ‘wise’ before!! 🙂

      I do hope you all stay well
      Best
      Tim

  7. HI Tim,
    Happy to come across your blog, will be a frequent reader, it’s odd that I came across this when I did because my 16 yr old has been 1 year now since growing B. cepacia, she is out of the general population of CFers for 2 years. Recently thou we found out that for the first time she has a class mate with CF also , this child is a year under her but that is all we know I offered my information to the parents threw a second party in hopes that they would contact us, so I could compare note and share experiences with the other parents but they choice not to contact us. My greatest concern was the B. cepacia and other infection that they may pass to and from, but my daughter has no idea who this child is and most likely passes him in the school halls, cafetiere, and or command eras daily. Are there any advise you could give that could ease my mind or information I could pass to the other parents threw our school nurse that could be helpful.

    I find it is sad that some children with CF are treated like a leper not only by their peers but their family as well. We have been very opened about Vivian’s CF in hopes to educate others and to insure that she isn’t put in a situation that could be harmful to her or where she could transfer something that she may be dealing with to another CFer . By our openness we was able to help one child that was 10 yr old at the time that was being treated for everything but CF, but after a lengthy conversation with the mother the child was tested positive for CF and is now a junior in college and doing very well, at 10 he weighed 50lbs and his future was looking very dim.

    I wish you the best of luck and thank you for your knowledgeable insights.
    Carol

    • Tim Wotton says:

      Hi Carol,
      Thanks for sharing your story and well done for helping that young child get a diagnosis and subsequent health improvement. Keep plugging away, get your daughter to start owning her medication and good luck with the school openess scenario.

      All the best
      Tim

  8. Olivia says:

    Hi Tim
    Long time no see. Sorry I dropped out for a while, we’ve got a lot going on. Bought a house and moved in a couple weeks ago, and Jeff’s been sick ever since. He has finally agreed to talk to his clinic at Johns Hopkins today and see if they want to see him or admit him. Also, all summer he’s battled a patch of pyoderma gangrenosum on his leg. It’s that whacky immune system attacking the body.

    As for not mingling with other CFers, that’s why Jeff doesn’t go to the charity walks, etc. and as he holds the wonderful B cepacia in his lungs, he gets a different clinic day than most of the others.

    Chin up! Must run. Need to tell his office he’s not coming in today.

    • Tim Wotton says:

      Great to hear from you again Olivia and all my best wishes go to you and Jeff. He sure has a proactive and caring wife!

      All the best
      Tim

      • Olivia says:

        I did read your previous post and I liked it. Must look at it again and leave a comment.

        I wondered about wearing masks to meet up too! Maybe someone needs to invent a more comfortable one for CFers. It’s hard for me to breathe inside a mask, so I know it’s even harder for you.

        How are Katie and Felix?

  9. Andrea says:

    Hi Tim! I just found your blog; thank you for writing it. I have been a member of the cystic fibrosis foundation in the States my whole life, as my older sister, incidentally also 41 years old, has CF. I cannot tell you how much I have appreciated reading your posts, but this one really struck me. My sister was one of the many Midwestern kids who loved CF camp in central wisconsin in the 80s; my family remembers when docotors realized the potential harm in these bugs and sadly, but necessarily, these camps needed to be shut down. Now, decades later, my sister is part of one of the US’s only adult support groups for CF patients. After all of the other trial groups shut down, the one at the University of Wisconsin Hospitals survived, due to stringent meeting requirements (masks, hand sani, tissues, sit a seat away from everyone…). She has found this meeting time invaluable, and as a sibling of a CF patient, I needed to hear other family stories and experiences. CF patients can meet and should; there are safe ways; stories need to be heard. Good luck delivering your messages and thanks again, you add to the story telling. Stay healthy and positive. Cheers, peace, and health, Andrea

    • Tim Wotton says:

      Hi Andrea and thanks for sharing how CFers meet up ‘safely’ in the States – maybe something we can take on board over here. Send my best to you sister who, as the same age as me, will have gone through a similar amount of lows and highs battling this chronic condition. I wish you all well…

      Best
      Tim

  10. Penny Allen says:

    Tim I am sooo sorry about the ball yes it does seem unfair and it would be just great to have you there but if members of the CF trust find more than one person there with CF then poor Debbie will be in a major doghouse. But we will all be thinking of our dear friends with CF who can’t be there maybe for another ball we will have a video link… but that might make you feel even more left out! Thinking of you Penny (Debbie’s mum)

  11. Tom says:

    What a wonderful article and so true. I am from the UK and my grandson has CF and your article and other peoples comments have given me hope. He has just recovered from nearly dying so I am so grateful for that. His main hobby is Parkour or free running as it is better known. The level of fitness required is extreme but it stands him in good stead.

    It makes me so proud and I feel very humble to see how he gets on with life and everything that’s thrown at him. He has met some wonderful lads who are much older than him (he is 14 yrs old) and even though the Manchester Circushouse has closed where they meet, due to the open air nature and use of natural habitat, a training ground is no problem for Parkour.

    Perhaps CF sufferers could have some form of discreet lapel badge, not to indicate you are a leper but that you have CF and to let others know, so that the risk of cross infectiopn is reduced.

    Can I just say that all the CF’rs I know not one moans, even when they are seriously ill. It is a shame that this condition gets so little press and so little support from the UK government. Good luck to you all.

    • Tim Wotton says:

      Thanks Tom and you sound like a very caring and proud grandfather. Parkour is very active and I would encourage he keep it going as much as possible as I’m convinced that all my sport has made the difference to my longevity.

      Best
      Tim

  12. Riza says:

    Hi Tim. I read your post today. How I wish that people like you, who fight so hard, and fight with so much courage, could simply receive all the blessing of hope and healing simply because people want to give it to you. I will make a special prayer for you tonight, as I pray the rosary ( i dont do it, I only do this when I fervently ask the Lord to heal people). This rosary will be for you and Xenia, my freind who was recently diagnosed with Cancer. Wishing you blessings of healing. Always. Love, Riza

  13. Nigel says:

    Hi Tim
    Greetings from New Zealand.
    Reading your article it was interesting to compare how similar CF clinics are on opposite sides of the world.
    My son aged 10 has CF and we have been taking him to our local children’s hospital since he was diagnosed at 6 weeks old. Initially at clinic we where generally aware who the other CF families where, but we where often ushered to different parts of the waiting room and clinic area to wait our turn. This meant we could still see the other families, but to far away to converse with them.
    For at least the last 12 months, like you, we are now taken directly to the consultation room and the doctors, nurses, dieticians and physiotherapists all come and see us. The only thing we have to venture out of the room for is lung function tests (and x-rays if any). If everything runs smoothy its good and we can be in and out in no time, if not so smoothly you are left there waiting wondering how long it will be.
    It’s interesting your comments about days gone by and CF people mixing regularly. Before we became part of the CF community we understand that the local CF community used to have family picnics at least once a year. That definitely does’t happen any more.
    Regards,
    Nigel

    • Tim Wotton says:

      Hi Nigel,
      Good to hear from you from the land of the long white cloud! Thanks for sharing your story and the similarities in care in NZ. Good luck with the health of your son.

      Best
      Tim

  14. Cath Ingham says:

    Hi Tim
    I wrote a response to your blog the other day about the experience of my sons aged 42 and 38 who have CF but it hasn’t appeared so I’m wondering if it arrived.
    Cath

    • Cath Ingham says:

      As newbie in the blog game I’ve just discovered that my comments were left on the about Tim page rather than on the cross infection piece. I’ll know next time!!
      Cath

  15. Sharyn Boswell says:

    Hi Tim!
    How’s the book coming along? Glad you are out there writing… you are really helping people and your (stunning) personality always comes through in your blogs!

  16. Tim Wotton says:

    Message on behalf of my mum, Margaret Wotton, who is having PC issues but wanted to respond to this blog…
    I really want to respond to your latest blog as my experience of the possibility of cross infection between Cf patients goes back to 1971 when you were born and we soon became involved with the local Parents Group which sadly has not existed for the last 20years. We were immediately informed there was a holiday caravan for Cf families static on the Isle of Wight which we could hire for a nominal sum for a week’s holiday. I suppose with my paediatric nurse background, I straight away thought about all the coughing going on in such a confined space let alone into a pillow. There was a person to clean the caravan between each family’s departure and the next arrivals but I dread to think of the bugs that van contained. We never used it but I always advised families who did to take the Cf child’s personal pillow and bedding from home.

    My heart goes out to Rich with his story and falling in love with another Cf person. Be happy Rich and enjoy the today rather than worrying about tomorrow.

    Yes, Tim, as noone else has ever described you as “wise” I will now, you have a very wise head on your shoulders.

    Well done on another great thought provoking blog,

    much love Mumxx

    • Olivia says:

      Well, Jeff got a good old PICC line put in this afternoon and will be on two weeks of IV (imipenem and cilastatin). How do you know it’s time for a tune-up, before getting sick? Last year his doc said he should do it every 12-18 mos. it’s been about a year, but I guess you can’t foresee. It’s usually reactive.

      Anyway, coincidentally the head RN who came to set up his home infusions today is the same one who did it for him 7 years ago, when they were both living and working in Baltimore. And the on-call RN who will change and maintain his line every week is the same one who did it last year after his pneumonia. Small world.

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