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Bronchiectasis

LynnC
Posts: 2
Joined: Jan 2014

Hi, I'm new in here, and to be honest, I guess I'm just here to have a good old whine about how frustrated I get sometimes.

2007: removal of right tonsil, removal of gland under chin, neck disection, right side of neck.

2009: following the appearanc of 8 lumps on right side of neck; radical neck disection, right side; 33 sessions of radiotherapy to both sides of neck with chemo every week too.

Oct 2009: back to work.  Can no longer eat any solid food, no saliva, sweet taste buds gone (you would not believe what sweetness there is in food until it is not there. Milk tastes of nothing, coffee is vile and sweet desserts taste downright odd) and so I live on ensure drinks.

Since the surgery I have had almost constanr pain, mainly around my shoulder blade and the top of my shoulder.

Some 12 months later I had my first bout of pneumonia, apparenly from aspirating because I cannot swallow properly. OK, another thing to deal with, and I did.  Then I got pneumonia again, and again, and by the fifth time I thought I was coping pretty well.  Then came the pleurisy last September. I got over it, but couldn't seem to get rid of the cough it left me with. 

Then I began to have problems with walking up stairs, or up a slight incline. I became breathless at the slightest physical exercise.  Then a couple of weeks ago I developed the worst pneumonia I ever had; I was up all night, temperature of 39, throwing up... Doc called out and nearly ended up in hospital had I not got my temperature down.

The specialist and my own doctor both believe I now have bronchiectasis (lung damage) from the repeated pneumonia. If so, I am stuck with this dreadful cough for life, and at the moment I don't know if I will ever get back to work. Although I am now on constant antibiotics I work in a large open-plan office, and there is always some martyr or other who struggles in to work with the kind of viruses that scare the heck out of me.

So, there you go, me having a moan, so if anyone reads this, thank you for listening. I hate to moan at family and friends. To be honest, I prefer to feel happy whenever possible. But sometimes it gets hard; like on special occassions when I can't eat. I can't drink any alcohol either as it burns my mouth and throat. Sometomes I just want a slice of toast.

Don't go thinking I am depressed; I'm not. I have been depressed in the past and Iknow the difference between depression and feeling fed up with pain, with coughing and with not being able to eat.  I guess I just needed to share how I feel without upsetting anyone.  I feel so much better for that 

Lynn

Hondo's picture
Hondo
Posts: 5742
Joined: Apr 2009

 

Wow you had your fill and it looks like it just keeps coming. But I read in you post that you are a strong person who doesn’t give up so easy and that is why you are still here. I got my first Pneumonia about a year and a half ago from aspiration and get bronchiectasis every now and then because I can’t swallow anything. My other problems are I can’t open my mouth more than a ½ inch and I am not able to spit very well. But all in all I find ways to keep the saliva or spit as I call it, out even if I have to suck it out with a machine.

I like to Welcome you to the family here and hope you continue with use as you are a very interesting person to be so positive with all the problems you are going through.

I pray that God will watch over you and continue to give you strength in your walk in life

fGod Bless

Hondo

katenorwood
Posts: 1821
Joined: May 2012

Hello Lynn,

First let me tell you,.....you are not whinning girl.  Good gravy, what you've experienced over and over again is mind blowing !  I want to ask, have you tried to get deemed disabled ?  There is a certain point where you need to think about you !  Alot of people don't realize they can be working and apply.  (talking about social security disability)  I can and do understand the lung issue.  And if you are like me, it's something that's hard to accept.  I would love to be working instead of dealing with breathing issues.  Check w/your local office.  There is a specific place where your lung function needs to be and you will qualify.  I was at 37% two yrs ago, w/ also my cancer dx and surgery.  I was accepted pretty much right away w/a 3 month waiting period.  Good luck with things, and keep us updated.  Hugs sent !  Katie   

LynnC
Posts: 2
Joined: Jan 2014

Hi, yes I have applied for disability help, but ideally I would love to get back to work eventually. Still waiting to hear if I have been successful or not.  One thing that upsets me a bit is that I can't sing any more. Well, I can a bit, but I once sang for a living, from busking to cabaret, and although I have no desire to start gigging again, it would be lovely to get my voice back. Between the coughing, the inhalers and the lack of saliva my voice is somewhat hoarse. 

Thanks for your replies; it's nice to have someone who really understands how hard it can be sometimes. In general I cope, but now and again it gets difficult.  

Hugs x

Lynn

debbiejeanne's picture
debbiejeanne
Posts: 2398
Joined: Jan 2010

Lynn, you have definitely been thru it and you aren't whining, you're just stating that you're tired of all the complicatons.  I don't blame you.  I would have been "fed up" long b4 u were.  Welcome to our family and i pray things will get much better for you and you're able to return to work.  listen to your body tho and when it says it is tired, rest.  you've been thru a lot and your body needs lots of rest to fully recover.  good luck with the cough, i also have a cough so i really understand how that can get on your nerves.  i hope you will keep posting and that you find this site helpful.  there is an awesome group of people here!

God bless,

dj

CivilMatt's picture
CivilMatt
Posts: 2933
Joined: May 2012

Lynn,

You are with moan responsive friends here.  Each of us can find our moan worthy side effects and your list is applicable.  I have to laugh when “lay people” say they have dry mouth or they once had a cold and know what no taste is like, please.

I wish you better days ahead and hope you see improvements to each of your situations.

Matt

Noellesmom
Posts: 1300
Joined: Aug 2010

First, whine away if it makes you feel even the least bit better although I doubt anyone here considers it whining.

Second, you have all my sympathy regarding your illness and certainly for not being able to sing as you once did.  I've never been a professional singer but love to sing and I can imagine I would grieve over the loss of my ability.

I love the fact you are able to discern the difference between sharing your feelings and coming off as depressed - because you definitely do not, Lynn.

 

donfoo's picture
donfoo
Posts: 1214
Joined: Dec 2012

Lynn,

You have sure had your share of medical issues and the outlook may be a bit overcast too. Clearly, you are an incredible warrior from your will to march through all the past issues. Each time, you deal with the new normal and you will do the same after this too. 

Welcome to CSN and know we are here as the place where survivors come and express trill about the last scan, angst about the upcoming one, get opinions on how to deal with symptoms, and share their struggles with past and ongoing side effects. I think it is safe to say this group has the most true empathy and knowing what you are experiencing.

Very few people other than those directly experiencing the treatments and recovery firsthand are just not capable of being able to truely relate.

Visit as often as you need but surely read the superthread for tips and suggestions to make it easier to endure.

Don

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

Sometimes it just feels good to get it out!

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