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Does anyone have progressive systemic scleroderma with diffused lung disease and hypertension?

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#1 georgiapatterson38



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Posted 12 August 2014 - 04:40 PM

Hello, my name is Georgia Patterson, I'm a native American and 38 years old. I have progressive systemic scleroderma with diffused lung disease and now I'm having hypertension in my heart.


I feel alone and I joined this forum hoping someone can help me with some answers ... am I alone? Now I'm having trouble digesting my food and have to sleep elevated and now I have to start chemo soon; I'm getting scared with every passing moment and I'm trying to be strong. I was diagnosed in June of 2012; the doctors never tell much and just give me more pills which I'm sick of taking but I have no choice. I'm also diabetic and I have a lot of health issues I know, but it's sad that I've gotten use to being sick the past two years and then I have my bad days where I want to give up. I have two step daughters I raised since they were babies and two sons of my own. My husband never shows me how much it bothers him ( my illness) until I have one of my break downs which has been happening lately since my illness has been getting worse.


Any advice or guidance or stories that can help me please?


#2 Joelf


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Posted 13 August 2014 - 01:00 AM

Hi Georgia,


Welcome to these forums!


I'm very sorry to hear that you've been diagnosed with Interstitial Lung Disease and Pulmonary Hypertension and I've included a couple of links from our medical pages to give you some more information. We also have a lot of useful advice about Diabetes.


I have lung involvement and can understand how worrying and scary this disease can be; however, I would like to reassure you regarding the chemo treatment you will be receiving. I had 6 monthly infusions of Cyclophosphamide (chemo medication) and whilst this is a powerful drug, to be treated with respect, I did obtain excellent results from it and didn't (contrary to my expectations) lose my hair through having it; this was one of my main worries. I would emphasise that everyone reacts differently to different treatments and I can only advise you from my own experience, but it certainly was not as dreadful as I thought it would be and in my case the benefits outweighed the side effects.


We do recommend, if possible, that our members consult a Scleroderma expert as this complex disease does require specialist knowledge and expertise.


Now that you've found our forums and joined our community, you'll find that you're no longer alone. Please do keep posting and let us know how you're faring.


Kind regards,

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#3 judyt


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Posted 13 August 2014 - 01:07 PM

Hi Georgia,


I want to add my voice to Jo's welcome and assure you that you are among friends here, and there are plenty of members on this /forum who know just what you are dealing with.  


Jo has lung involvement but I have not, nor do I have any skin or joint involvement but boy oh boy does my Oesophagus give me trouble, and my stomach, and my bowel.   I have  Systemic Sclerosis, autoimmune Liver disease, Sjogren's Syndrome and now I am anaemic - what more could a girl ask for :emoticon-dont-know:.


 We all have to take hansdful of medications every day, and every little thing that comes along can seem to be just another burden sent to weigh you down, but it is helpful if you can try to stay cheerful as much as you can.   Your husband sounds like he is supportive and so is mine, but I can't help wondering sometimes if all this fuss is getting to him.   It seems I can't do anything easily, it always takes organisation and thinking about whenever I want to go out or we want to take a trip somewhere.    A day's outing, a short visit somewhere or a weekend away can all seem too much trouble but it is good for us to get out and stay in touch with the world and can lift your spirits.


Keep in touch with us, bring us all your problems and there will probably be someone who understands and has a way around it.


Best wishes from the upside down side of the world

Judy Trewartha

#4 miocean


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Posted 16 August 2014 - 03:26 PM

Hi Georgia,

I have diffuse scleroderma with Interstial Lung Disease and Pulmonary Hypertension as well. I also have a kidney transplant, esophageal dismotility, GI issues and have been seeking a lung transplant but was turned down at two centers due to how complicated my disease is. I sleep elevated and try not to eat 3-4 hours before bedtime. I use oxygen for exertion. Years ago they tried cyclophosphamide to stop the progression of the lung fibrosis but I had a toxic reaction to it and it was stopped.  I take about 25-30 pills a day.


I hope you are seeing a scleroderma specialist and a pulmonary hypertension specialist. My PH is managed with oral medication right now. The gold standard for diagnosis is a right heart catherization. Have you had one? Do you know what your pressure was? Mine was 45 but is now 23 with the medication, which is normal. A 6 Minute Walk Test and Pulmonary Function Tests should also be done and if you are dropping below 87% on the walk test you should be using supplemental oxygen.


We all have our down moments and the best thing I can recommend for that is to find a good therapist. An objective viewpoint can help you deal with both the disease and your family. Perhaps your husband will even be willing to go to a session or two with you. There were times I have wanted to give up, too, but then I think of how hard it would be on my husband without me. I am sure you think of the same things about your family.


I try not to let my illness stop me. Even on dialysis I traveled. Since my kidney transplant I go even more places for longer periods of time. I have a portable oxygen converter that charges in the car and is approved for air travel. I use wheelchair assistance at airports. I go to the beach every day and when the ocean is calm I can even go in it. We try to go on as many trips as we can. The next two months we have week long car trips planned and early next year we will be going out of the country for a month. 


My nephew is diabetic and just went through surgeries on his feet to prevent amputation. He went to a theme park and rented a scooter so he could do everything he wanted to. I know the thought of using assisted devices like a scooter, wheelchair and oxygen are not appealing but if it means continue to have the kind of life you and your family want it is well worth the stares you get. 


Another thing I do is plan downtime. I know that I will need time to rest after a couple of days of activity and work it into my trips and for when I return. I also need it if I have a couple of busy family days. Try to explain to your family that there will be times when you need to regroup. It may mean sleeping all day or just laying on the couch reading a book. Granted, I don't have children so this is easier for me. My husband also does most of the housework and cooking so that is a big help. I worry about how all this affects him as well.


This group is extremely supportive and is where I come when I have my down moments. Everyone understands because they have been there. Please keep posting and let us know how you are doing. Sending you healing thoughts,



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#5 Amanda Thorpe

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Posted 21 August 2014 - 01:57 PM

Hello Georgia


Welcome and my first suggestion would be to start getting back as much control as you can and you actually can.


Although you can't do much about being ill you can become an active participant in your disease and treatment of it. In order to do this you need to know your disease and you need to know what your doctors are doing, It's hard work and feels overwhelming but it actually gives you back a sense of control. Instead of just receiving what doctors say/do, you can enter into talks with them so that YOU can make decisions and partner in decisions being made about YOU.


Scleroderma can wax and wane and it seems its waxing away in you at the moment. It's not uncommon for it all to come at once.


Are you moving the goal posts? My dear friend talk about this a lot. What I mean is that having heard about most scleroderma symptoms we both names the one symptom we just could not cope with, life would just be unbearable with...we then get that symptom...find we can and are in fact living with it so focus on another symptom that we just couldn't go on with...


Have a read of my blog Adjusting Horizons, it was inspired by things said on the forums and deals with some changes you need to make to accommodate living with scleroderma. We don't want to have scleroderma nor do we want to make changes in order to live with it but we can't live successfully with it otherwise. We can still have a good life with scleroderma even though it's a life we didn't choose and don't actually want but we have to make a choice to life a good life with it. In order to live a good life we have to adjust the horizons within which this life will now be lived.


I strongly recommend counselling, both for you and your husband. Scleroderma affects our families as much as us albeit differently. I had grief counselling to put to rest my former life because I am determined to have a good life, a life of quality. Have a look at our emotional adjustment page.


I hope this helps and keep posting.


Take care.


Take care and keep posting.

Amanda Thorpe
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