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Fibrosis Pulmonary Hypertension Fluid Right Heart Catherization Lung Transplant

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#1 miocean

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Posted 29 April 2013 - 05:29 PM

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
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#2 Shelley Ensz

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Posted 29 April 2013 - 06:19 PM

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
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Hotline and Donations: 1-800-564-7099

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#3 miocean

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Posted 29 April 2013 - 07:10 PM

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
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#4 Shelley Ensz

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Posted 30 April 2013 - 10:49 AM

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.

#5 judyt

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Posted 30 April 2013 - 03:04 PM

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



#6 Amanda Thorpe

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Posted 30 April 2013 - 03:50 PM

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.


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#7 Amanda Thorpe

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Posted 30 April 2013 - 03:55 PM

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.


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#8 judyt

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Posted 30 April 2013 - 06:26 PM

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



#9 Margaret

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Posted 01 May 2013 - 03:20 AM

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



#10 NorthStarHope

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Posted 01 May 2013 - 06:04 PM

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: 


#11 Sweet

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Posted 02 May 2013 - 06:52 AM

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
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#12 Joelf

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Posted 03 May 2013 - 12:25 PM

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,


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#13 debonair susie

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Posted 10 May 2013 - 09:53 AM

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,

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#14 Buttons

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Posted 10 May 2013 - 11:27 AM

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
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#15 miocean

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Posted 13 May 2013 - 06:34 PM

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
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#16 Shelley Ensz

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Posted 13 May 2013 - 08:24 PM

Hi Miocean,

 

Oh my goodness gracious. Are you going off the diuretic even though the swelling isn't gone yet? I may be wrong, I often am, but isn't oxygen crucial to help deal with the cardiac edema?  If he wants you on oxygen full time now, I hope that you are able and willing to do that, for the time being.

 

When Gene was on oxygen, one of his doctors repeatedly pointed out that he was not on oxygen for his lungs or even to alleviate shortness of breath, but rather to reduce the stress on his heart and help to avoid heart failure.  Whereas, so many people on oxygen (or who are supposed to be on oxygen), think of it as only necessary for the shortness of breath.

 

That's discouraging news from the transplant center but not incredibly surprising, either. Just start working on the next center and move on down the list. Gene consulted three lung transplant centers before picking the one that was best for him, and that he had a good chance of being accepted at, as well.

 

And of course the calcinosis is acting up!  That's just Murphy's Law, isn't it? 

 

If you haven't already, please start cranking on the oxygen, 24/7.  Every cell in your body needs it, probably even those cranky calcinosis cells.

 

: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.

#17 Joelf

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Posted 13 May 2013 - 10:06 PM

Hi Miocean,

 

Oh dear, I'm so sorry that your symptoms seem to have worsened again and that you're feeling so poorly. I'm sure that the worry of your additional lung problems isn't helping either and the overall stress of the situation is making everything so difficult.

 

Are you able to go to your beach and perhaps gather some comfort from that? I don't know whether your weather has been conducive to being by your ocean; we have had a few good days (thankfully when we were in our caravan, or it might have put us off caravanning for ever! ;)) but now it's reverted back to windy and cool again.

 

I really hope that your lab work improves at the end of the week and that you get more encouraging news from the lung transplant centre. Please know that I'm very concerned and worried for you and hope that things improve very soon.

 

Best wishes,


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#18 miocean

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Posted 14 May 2013 - 03:36 PM

Shelley,

I had to go off the diuretic or I could go into rejection of my kidney with the high numbers I had. It is such a dilemma with the transplant, what is good for a lot of people is not good for me. It was the same with dialysis, too. I am using the oxygen almost all the time, whenever I am moving around and when I am sleeping. Perhaps my labs on Friday will improve and they will put me back on the diuretic.

I spent this morning calling places about palliative care or a better doctor. I don't qualify for the palliative care at my hospital because I am too young! You have to be 65 there. The person I spoke with was lovely, she knows there is a need for people in my position and felt bad she couldn't help. She did suggest a primary care doctor and said that the doctor that does the concierge medicine is excellent. She also gave me the number of another hospital that may have palliative care for someone my age so I have a call into them. I called the PC she recommended and asked it I could set up an appointment to discuss my needs with him and was told I would have to switch my PC to him before he would even consult with me. I didn't like that and decided to consult my nephrologist to see who he recommends since they have to work so closely. I now have a name of another doctor to call to see if he will take me on and provide what I need.

I called the concierge doctor and his office referred me to a general number to answer my questions, apparently he is part of a national group. Unfortunately, some of my questions couldn't be answered and they are sending me a brochure. The cost would be $1,800 a year out of pocket but my questions about other co-pays and how he would work with my other doctors were not answered on the phone. I didn't quite like this, either.

I told myself this morning I would allocate 1 hour daily to deal with medical issues but this went well over. My husband and I decided to go for a walk by a reservoir as the beach was chilly. Just as we pulled into the parking lot a received a call from the lung transplant center saying they wanted me to come for evaluation and a barium swallow! It was a different person from yesterday so I asked if this meant they would consider me as a candidate and she said yes! I didn't have the necessary information to register right then and needed to check with my nephrologist about the barium and the kidney. Another phone call and found out It is okay to go ahead.

So tomorrow my hour of medical calling will involve calling the lung transplant center back and seeing about the new PC doctor. I thought about setting a timer today but didn't and I am a "little" compulsive so kept on going. Tomorrow I will set the timer...

I have really mixed emotions about a lung transplant but I am following the advice I give end stage renal patients: as soon as you are qualified to list, do it. You can always say no at a later date.

As I say, you are the best! Just seeing your posts made me feel better. You are always there.

miocean


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#19 Shelley Ensz

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Posted 15 May 2013 - 01:02 PM

Hi Miocean,

 

I sure do know what a delicate balance it is to keep everything squared away with the transplant meds. I'm sorry you had to stop the diuretic before the problem was resolved. I hope your next labs turn out in the acceptable range.

 

That's a great idea, for setting the timer to limit the time spent on the medical calls each day. :emoticons-yes: :terrific:

In fact, it's such a great idea, that I just now decided to set a timer to limit the time I spend on housekeeping each day. Oh buzz, did you hear that, I must be done already! :thank-you:

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#20 miocean

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Posted 15 May 2013 - 05:57 PM

Although I didn't set the timer I did spend less than an hour today resulting registering and making an appointment with lung transplant center #1 in June for a barium swallow and beginning interview. I called the PC doctor and have an appointment set up there.

I received a call from the second transplant center, just for a couple of questions about skin cancer. I found that interesting, with all my medical complications that was the one they wanted answered...

miocean
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