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Michela: Scleroderma and Pulmonary Hypertension


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#1 Michela

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Posted 05 April 2010 - 08:38 AM

Hello my name is Michela, I was diagnosed in December 2003, with Scleroderma and Raynaud's, nine months after my 50th birthday. I have had roughly three chronic ulcers which required me to be hospitalized and have iloprost infusions. I have had many ulcers at times heal themselves. The chronic ulcers take up to three months to heal.

In 2009, I relocated to a warmer city in Australia. Relocation to a warmer climate certainly helped with my Raynaud's, as I have had no chronic ulcers since relocating. I do experience the onset of the ulcers, however the ulcers would not develop into the chronic ulcers like I had previously experienced.

In 2009 I experienced shortness of breath periodically so I finally went to my local general practitioner (GP). He suggested I go to the emergency department as I had pulmonary hypertension. I did not believe him at first and also did not take the diagnosis seriously, however I did follow his instructions. I arrived at the hospital emergency department, with letter in hand written by my general practitioner. I gave the letter to the nurse behind the glass window. I was seen immediately. After a lot of tests, blood, right heart catheter test, lung test the medical team were very thorough. My general practitioner was right in his diagnosis.

I came home from the hospital after a week. I now have oxygen 24/7. I was devastated. I could not believe what was happening. I could only think of my son, mother, other family members and friends. I could not bring myself to tell my son. I can't remember how I did. I have good days and not so good days. My son has been so supportive of me, my daughter in-law, mum and sister. I have been treated with Viagra and Bosentan. I have been advised by my specialist the Bosentan is no longer working. I am now waiting on another drug, iloprost, to be inhaled I think twelve times a day. I have waited for the drug now for three weeks.

I do volunteer work, when I can. I do believe the drug will assist me, however at times I do feel despondent. Other days I feel I can conquer anything. My general practitioner has been wonderful and very supportive. My specialist has had, I feel, challenges to have the iloprost available for me. He is trying so hard for me and I appreciate all he is doing.

My illness has changed my life around, as it has many other people's lives, since diagnosed with this disease. I was a nurse in Australia prior to being diagnosed. I was thrilled to pursue a career I wanted to do since I was young. As my darling son said, "Mum those are the cards you have been dealt." I am hoping to relocate to be nearer to him. See how I go with the new drug. All I can suggest is accept the illness. But, if this was said to me when I was first diagnosed I would have been furious.

Take the good days and do what YOU WANT TO DO!! At times frustration and depression set in, however, I overcome this by driving to the beach. I am attached to an oxygen cylinder when I go out. At least I can get out. At least I can go to the movie. At least I can express myself exactly how I feel to my general practitioner and my sister. Friends will come and go in your life. I have been fortunate that the friends in my life now are uplifting and very special.

Allow yourself to cry, be happy, always question your specialist if need be. Ask your general practitioner and question he/she. Select a general practitioner you feel comfortable with. Remember, no one knows how you feel if you don't explain to your general practitioner or specialist. I refuse to have medication for depression. I am not saying the medication is not good for some. I don't feel I need to take them as I can overcome the depression associated with the scleroderma.

Don't feel despondent if you don't hear from family and friends for a while as they have their lives. At times they don't know how to deal with the situation also. Emailing to friends is also a lot of fun. And I do love the telephone.

I am soon to be a nana in July 2010. I am sure they are having a boy. I have so much to look forward to. My nephew is getting married in April 2010.

I hope and wish the drug is given to me in time to fly to the wedding. My mum will be eighty in May, but is too far away to travel for me. My sister will hold a pre-80th for mum after the wedding. Yes I have so much to look forward to.

So for the people who have been diagnosed with this disease don't be hard on yourself. I am not saying it is easy at all. Look after yourself as best you can. Have positive people in your life. Ask for help when you need it. I am very fortunate where I live as the tenants here cannot do enough for me.

I am looking forward to the next holiday; I am going to try to arrange an egg hunt. I catch up with my sister when she is not busy with her business. All in all, I do smell the roses and at times I get pricked by the thorns.

My wish of all wishes is that one day there will be a cure for this disease. I have been writing a book since being diagnosed about the information regarding the disease and how it affected me in detail and hopefully, one day I may finish it.

#2 Jeannie McClelland

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Posted 05 April 2010 - 08:58 AM

Hi Michela,

I've copied your personal story here to the Main Forum so I and others can welcome you and thank you for sharing your heart-warming and (at times, heart-rending) story. I'd also like to thank you for volunteering as you are able. I hope you know what a difference you make.

All of your advice is spot-on. I was diagnosed when I was about 6 months shy of my 60th birthday with Scleroderma, Raynaud's, Pulmonary Fibrosis, and Pulmonary Hypertension and GI involvement. The diagnosis was a shock, frightening, and hard to accept at first. I worked very hard to 'get my head straight' and not only to accept the realities, but to live in the moment and take joy in small pleasures as they come. I have been fortunate to have been pretty much stable on various medications and because of this and how I have been able to cope, mentally, I think I have a rich and fulfilling life. I put the stoppers on any fear of the future whenever a negative thought rears its ugly head.

I hope the iloprost soon becomes available to you and works well to improve your condition. I hope you get to do everything you'd like to and that you get to experience all the pleasures of being a nana. I became Granny in 2008 and wee George tops everything. You'll love your grandson!

Best wishes, always,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 miocean

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Posted 05 April 2010 - 10:35 AM

Michela,

I am on oxygen too, sometime 24/7, sometimes just when I exert myself. It depends on how I feel. I flew to Florida in December when I was having trouble breathing and was concerned about going without oxygen.

There are some portable tanks that are FAA approved. You can find it on the airlines website I believe. I called the company that takes care of my oxygen and asked them if they had an approved tank. They were able to provide me one for the trip. I had to notify the airline and let them know I was bringing it. It does not count as a carry on, at least not on the airline I flew. I ended up not needing it but it as a relief to have it in case I did. It is still possible to travel with 02 so check it out.

miocean
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#4 Sandy B

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Posted 06 April 2010 - 01:43 AM

Hi Michela,

Wow, just read your post, well in fact I have read it twice, it is straight from the heart and so inspiring. Like you I try to stay positive and if I can't be positive then I try to keep my mind occupied. At first I was scared, but now that I have accepted this disease, it is a lot easier to cope with it, in fact my attitude is sometimes verging on the gung ho at times, not sure if this is good or bad, but it's my way of coping and on a good day I am determined not to be beaten by it.

I hope more people new to this disease and new to this site get to read your post, as I think it will show that with a positive attitude you can learn to cope with it and still get on with your life as best as you can. Writing down your thoughts is good, I sometimes do that, it's easier to write it down than risk upsetting some family member by talking about it. Like you say, it isn't just us this disease impacts on, it's our family and friends and sometimes it is just as overwhelming for them as it can be for us.

Thank you for sharing your story, I'm sure it will be a huge inspiration to many other.

Take care

Sandy B