31 posts in this topic

The results of my lung CT scan came in and the fibrosis in my lungs has increased. Along with ground glass I now have an area of honeycombing, a more advanced form of fibrosis. I started oxygen therapy a few weeks ago due to desaturating on a six minute walk test and a decline in lung function on my pulmonary function tests. I consulted with the pulmonary doctor at the scleroderma center and he is submitting my records for lung transplantation to two centers in my area. I do not need a lung transplant at this time, I may never need one, this is just to find out if I would even qualify. I have a lot going against me: age, scleroderma, and the kidney transplant. I've known for a long time that the only thing that could be done for my lungs is a transplant so this is just at the investigative stage.

 

I had a right heart catherization to test for pulmonary hypertension last week at the scleroderma hospital. This one was different from two previous ones as part of it was done during exercise. I had to lift saline bags until the point of exhaustion. I've had two previous heart caths but not under exercise so this was a new medical adventure! After the procedure the cardiologist told me I have "slight pulmonary hypertension but he has seen worse." He was forwarding the results to the pulmonologist and scleroderma specialist and told me they would prescribe the treatment.

 

My scleroderma specialist called today with the results of the heart cath and I have fluid in my lungs. A diuretic will have to be found that is compatible with my anti-rejection meds and my nephrologist will need to decide which one. Once the fluid problem is solved I may need to go on something like Viagra, if it is compatible, for the pulmonary hypertension.

 

I am waiting for the pulmonologist to weigh in on this. There have been very long days with doctors and the heart catherization reactivated my hospital related PTSD. There will be more doctor appointments coming up and more medications in the mix. I have a lot of questions that need to be answered, and will need to coordinate a lot of this.

 

Longing for medically free days,

miocean


ISN Artist

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Hi Miocean,

 

I am sorry that your pulmonary function has worsened, that you now have pulmonary hypertension, and that you need to explore resources for lung transplantation. And all this, after everything else that you have already been through.

 

Lacking a full body transplant, your wish for "medically free days" is probably not going to happen. Probably the best you can really hope for is "medically interesting days". Surely, you have had, and will continue to have, lots of those.

 

We have a family policy that whoever is the "victim" at any medical appointment gets to pick a restaurant for the meal afterwards. So do you have any idea how excited Gene got when he had to be evaluated for a lung transplant?!  My goodness gracious, he got his pick of restaurants for weeks on end. Then after he was listed, the restaurant treats drastically dropped off, so finally he decided that we would go on a coffee shop tour of the town, trying to visit all of the coffee shops within a 10-mile radius of his transplant center.  He had his bags packed and in the car, of course!

 

In this middle of this amazing coffee shop tour of the town, I realized that I had lost my winter coat.  So we made a list of all the places we had visited to see if we could find it. I had to call over 50 places and never did find it.

 

So maybe I have my own form of post-traumatic coffee shop syndrome over all of this, because when I heard you talking about lung transplant, one of the first things to come to mind was, oh my goodness, does she have ANY idea how many restaurants and coffee shops it takes to have a good lung transplant?!  It's a bundle, but I'm sure that if you have to, you can do it.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Shelley, you always make me laugh!

 

Years ago we took your advice about putting something fun into doctor visits. It does make them more bearable! We tend to go the ethnic food route rather than coffee, and have found interesting markets and restaurants.

 

miocean


ISN Artist

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Hi Miocean,

 

In that case, get set for having an absolute blast while you are going through the lung transplant kerfuffle. Why, with any luck, you might be able to hit every single ethnic restaurant in town. You might even have to repeat a few!

 

Seriously, none of it is any fun at all. Which is why it behooves all of us to try to turn it into fun. We always bring books so we are delighted with all the waiting times and then set our sights on the venue of the victim's choice afterwards.

 

And Gene always tries to bring his sense of humor along. When the tests were stretching into absurdity (as he had to qualify for a lung transplant twice, since he dawdled too many years on the list the first time around), Gene was sent for a gastric emptying study. They had him eat radioactive oatmeal.  Oh yum, right?  So when he finished up, asked for seconds!

 

It's hard to be faced with such serious stuff, and at the same time, taking things so seriously can be very hard on us, and on our health, and on our families. Faced with the challenges you now have, you will want to bolster your spirits as much as possible.  It's a very rocky road, so you don't want to take it barefoot!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Oh yes Mio, we all dream of medically free days don't we!!   Actually I have been pretty lucky this year, here it is 01 May today and I have had only 2 days taken up by those things so far.

 

A couple of weeks ago it was an Ultrasound of my liver.   I am to have one every 6 months for the forseeable future until something else rears its ugly head.   Anyway that took only a couple of hours out of the morning so was soon over,

 

The second one was yesterday which was an EUS (endoscopic ultrasound) of my stomach and that took all morning.   We are so pleased that all those years ago we purchased an apartment in the city so it cuts out tedious travel.   We come back into town after dinner the night before when the motorway is quiet and stay until a similar time a couple of days later.   Yesterday I had to be in the hospital at 8 am and was released about 11.30am.   Starving hungry so it was a quick drive to the nearest mall for an early lunch.   No thought of trying somewhere new or interesting - just show me some edible food and that will do.

 

I purchased a Kindle late last year so now I make sure I have some books loaded and while I am waiting - waiting - waiting my books occupy me.    I love to read so the time goes by quickly.

 

The EUS was performed by the Gastro who wrote me off in 2009 as having PAH and a totally useless bowel so I was pleased to be able to chat with him and tell him that I have had my heart repaired and an SNS  implanted and now life is much more manageable.   He was not offended to hear that he was wrong all those years ago so all in all it was a satisfactory result.

 

Interestingly he found that I still had food in my Oesophagus and stomach, 16 hours after I had last eaten.   I knew my stomach emptying was slow but not that bad.   No wonder I can still feel full hours after a meal when other folk are wondering when the next time will happen.   Ian is always hungry it seems and he starts to worry that he is going to starve if it is too long between meals.

 

Sorry to hear that you have more worries to put up with Mio.   We are thinking of you.

Judyt

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Hello Miocean

 

How about being body snatched instead of a full body transplant? Did you ever see the original black and white film, it is actually quite good! I have to say that according to the plot just about every sclerodermian would be body snatched during the first 10 minutes, this is because you have to stay awake to avoid this. Can't see it myself, one yawn and we'd be gone one after the other, kinda like lemmings off cliff!

 

Seriously, whatever test/treatment you need you can cope with, you have support from your husband and of course all of us are here for you. It amazes me how you manage to manage all your medications, tests etc, you are much stronger than you give yourself credit for.

 

We wait to here from you!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Judy

 

16 hours for your esophagus and  stomach to empty? Is that a record?

 

I have to say that appearing before a doctor who wrote you off has to be the best pay back ever, especially as you have improved since he pronounced that you were done for! You go girl!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks Amanda,

 

Yes I do have a rather smug sort of feeling after getting the chance to point out how much better I am doing that that guy predicted.   Thing is that I also have a feeling that I had better not crow too loudly or too long or it might all come back to bite me :rolleyes: .

 

Judyt

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Morning Miocean ,

 

I am sorry to hear about another possible transplant for you.    :(    I will keep you in my thoughts.  Surprisingly, Gareth's issues appeared to be a more severe case of intrinsic asthma, of which the Singulair appears to be working well, for the time being.  :emoticons-yes:

 

Take care, Everyone.

Margaret

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Dear miocean,

 I'm sorry to hear of all the hospital visits you must go through, I know it can be so very trying.   When I remember my sister being admited to the hospital so many times within a few months that we actually lost count.  She has been holding steady for awhile now, she had to cut way down on her fluid intake so as she didn't go into congested heart failure again.  Anyway all my thoughts are with you.  

 

I always tried to make those hospital times as pleasant as possible, coffee shops were always a plus and my sister always likes to go out to eat when she's able especially after those hosipital visits.   I myself know what it's like to have lung problems, since I have copd and asthma I always have so much trouble breathing. I wish you the very best and many, :emoticon-hug:  :emoticon-hug:  :emoticon-hug: take good care!! 

 

Sincerely,

 

 Northstarhope*


northstarhope* :emoticons-i-care:  :thank-you: 

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Hi Miocean,

 

I am sorry that your pulmonary function has worsened, and that you now have pulmonary hypertension. You're an incredibly brave and optimist, perhaps pragmatic person, and I could learn from you! I guess it's one step at a time. I thinking having people here who truly understand helps immensely. Just know that I'm thinking of your throughout this journey, sending you warm loving vibes.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

Oh dear, I am sorry to hear about the worsening of your lungs and that you have pulmonary hypertension now as well as all the other problems you've had to contend with. Even having new medical adventures doesn't make up for more medical tests and appointments.

 

I always try to combine hospital visits to The Royal Brompton with a walk around the exquisite shops in the King's Road; the hospital is in Fulham, which is a very expensive and select area of London and there is a wonderful department store there, where I always have a walk around and look out to see if I can spot the Duchess of Cambridge ( I understand it's one of her favourite shops! ;) )  At least it makes the journey and appointment at the hospital more interesting (I love to watch the 'yummy mummies' and their au pairs dropping their children off at school. You can buy such a lovely little bijou slum dwelling in that area for about £4 million......a little out of my price range, I fear!! ;)  :P ) A lot of the out patients at The Brompton seem to bring their flasks, lunch and colouring books for their children, whilst waiting for their appointment, determined to make a day of it!

 

Amanda, being a fan of old films, I well remember "The Invasion Of The Body Snatchers" with the rather delectable Kevin McCarthy. ;)  :wub:

 

Even if you can't have medically free days, Miocean, I hope that the results of your tests are able to help you and I'm thinking of you and wishing you well.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Ladies, Ladies, Ladies...

As I do, on a continuing basis, I hold my Scleroderma Sisses and Bros close in thought and wishing ALWAYS, nothing but the very best for EACH and EVERY one of You.

 

We ARE all like snowflakes, but I am SO grateful for each of you, as a result of this site that Shelley founded; had it not been for her, I would not have my Sclero Family as "close" as I do.

I may not post as often as I should, but I DO try my best to be available at chat and love the opportunities (given us), to spend that time with any/all who are able to join me on Tuesdays and Fridays, as well as Jefa/Jo on Wednesdays. (Please note this as a less than subtle plug! ;P )

 

mi, Judy: You have such strength and courage and we are so very much in your corners, whether you feel it or not; you may not be able to "see us", but please never forget...How dear you are to us....Okay?   :emoticons-group-hug:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi miocean

So sorry to hear your recent news especially after all that you have already been through but I know you are strong and will cope with all the medical appointments coming up. Just remember that we are all thinking of you.

Take care
Buttons

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Thanks everyone.

 

I was put on a diuretic for about a week because it was fluid around my heart (congestive heart failure) not my lungs but as per my blood work it sent all my kidney labs all out of whack and I was ordered off it. My creatine shot up as did my anti-rejection medication level. I will have labs again at the end of the week and hope they improve. I seem to be very sensitive to drugs.

 

I had an appointment with my local pulmonologist today and he is doing his best to get my doctors on the same page. I am looking into more help with this, perhaps palliative care or a concierge doctor. He thinks I should be on oxygen all the time.

 

A lung transplant coordinator called from a center today and asked some further questions, told me I was probably not a safe risk but would further the work on to the doctors and get back to me. She was very honest with me and I appreciate that.

 

I am tired. Physically and emotionally. My legs and stomach are swollen and to top it off the calcinosis on my buttocks has decided to worsen and is very painful. Poor, poor, pitiful me.

 

But tomorrow is another day.

 

miocean


ISN Artist

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