miocean

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Posts posted by miocean


  1. Ron,

     

    I just replied to another post of yours asking about testing for pulmonary hypertension and see your answer is here.

     

    The shortness of breath issue is interesting. This afternoon I was able to go to an appointment that involved going up stairs and back with no issues and went into a large store, walked to the back and stood in a long checkout line without my oxygen with no problem, yet earlier in the day I was short of breath with my oxygen walking up a slightly angled ramp. 

     

    Go figure.

     

    miocean


  2. Ron, 

     

    Are you referring to your Total Lung Capacity (TLC) or your diffusion (DCLO)? I know you must be terribly disappointed to hear that low of a number, I know I am with mine. My TLC is in the 40's and my diffusion is around 27%. The important thing is how you feel and how you can manage with those numbers. In general, I feel good. I am frustrated that I am having trouble breathing, even with oxygen, but I am still able to most of the things I want to do. Please read Jo's post on mycophenalate and talk with your doctor about it. Have you had a right hearth catherization to check for pulmonary hypertension?

     

    Try not to get discouraged. 

     

    miocean


  3. I have been on myfortic or mycophenolate acid since my kidney transplant in 2010. I had almost immediate improvements in skin score and my lungs were stable until 2013. Since then there has been an increase in fibrosis including honeycombing and I have needed to use oxygen. Although all tests are stable since 2013 I have increased shortness of breath, even with the oxygen. I have suffered with horrible diarrhea since my transplant and right now my dose is reduced until I recover from this latest bout which landed me in the hospital with dehydration and acute renal failure. The dose will be increased as I am able to tolerate it as it is known to help stabilize lung disease.

     

    miocean


  4. I get short of breath upon exertion and use supplemental oxygen while sleeping and when walking places. Even with the O2 I get out of breath going up flights of stairs or even slight hills. If I am carrying extra weight, like bags of groceries, I get even shorter of breath. I have interstial lung disease and pulmonary hypertension. My diffusion is down to about 27%. 

     

    I have sets of stairs in my home but can manage going up them without the oxygen. The longest flight is 9 stairs. I am about to schedule a sleep study as I have never had one, and my PH doctor is adding Letairis to the Adcirca. It will take a few weeks to get approved but it seems like the combination therapy is more successful. The strange thing is my CT scan has not changed since 2013, my PH is mild and my Echo is good and no one can figure out why I have the increased shortness of breath.

     

    Jo, I am so happy you are doing that well!

    Ron, have you been tested for pulmonary hypertension? I am thinking you have had the usual pulmonary function tests...?

     

    miocean


  5. I fight the same battle. I am sitting here with a blanket over me because the air conditioning is on. It is not that hot here today but the humidity is high therefore the a.c.  I went for blood work the other day and immediately went into a Raynaud's attack because it was so cold. I have to bring sweatshirts with me if we go out to eat.  The supermarket is unbearable, I can't even go in the cold aisles and the rest of the store is freezing.

     

    We have even higher humidity here somedays and it is hard for me to breathe even with the oxygen. Fortunately up by the ocean there is usually a cooler breeze. Even still there are days I just can't go outside. This past winter was freezing, we had a lot of snow and many days of 4 degrees F! 

     

    Happy belated birthday, Amanda.  :balloons:

     

    miocean


  6. Amanda,

     

    I am so glad you are doing better!! I have always heard about flares but wasn't sure exactly what they were, how long they lasted, etc. It is so encouraging to know that even as severe as yours was you can pull through it.

     

    I am hoping that is now what I am going through lately. I told my husband the other day I feel like it is starting all over again. 

     

    miocean


  7. It is good to be home. The nephrologist is adjusting my Antirejection medications so I will be going for bloodwork every few days. At my follow up appointment he said I was in acute renal failure. That was a term I didn't hear in the hospital. From now on I am calling the doctor right away! I know I can't mess around with my kidney transplant.

     

    miocean


  8. Dear quiltfairy,

     

    I am so sorry you are in so much pain. I agree with Shelley, that some people are trying to empathize, not make it a competition. I have been guilty of that myself. Of course, there are those who feel they can top whatever you've been through with their own experience and I guess you will have to try to determine which category your peer support person falls into.

     

    My feelings are that pain is pain and illness is illness. I've had friends say to me they weren't feeling well and then apologize and say they know it is nothing compared to what I've been going through. I tell them that when you feel bad you feel bad, it doesn't matter if it is a chronic illness like scleroderma or a common cold. Yes, they will probably get over the cold in a couple of days and I will always be dealing with scleroderma but at the very moment they feel like I feel a lot of the time. During my recent hospitalization with extreme dehydration from diarrhea I had a friend tell me to eat bananas. I wish it was that easy. However, this same friend has had breast cancer and a mastectomy so I know in her heart she meant well.

     

    I believe in second chances so I would meet with the peer counselor again and discuss the last session. Find out if based on the way you feel you will be able to work together in the future and if not, ask for a different person. I never heard of a peer counselor either and am interested in learning how you were able to get one.

     

    Best of luck and may you have a relatively pain free day.

     

    miocean


  9. Oh Judy,

    What an ordeal! I have a friend who had the mitral valve surgery and they damaged her diaphragm during it so she has continuous trouble breathing now. You are one strong lady to recover from everything you went through! Here are some flowers for YOU! :flowers:  :flowers:  :flowers:  :flowers: 

     

    I would be very interested in seeing a copy of the literature for nursing staff for scleroderma patients. Is there somewhere online to find it? I know I have to sleep with my head elevated and not lay down for a couple of hours after eating so I do that on my own but perhaps others do not know that. Laying flat could cause you to aspirate.

     

    My first night in the hospital I read an article about preparing for a long term hospital stay. It was geared more toward maternity or cancer patients but some of the things they mentioned I have used:

     

    1. Bring your own blanket. I have soft fleece blankets I keep all over at home and in my car as I am often cold. I had my husband bring one and just having something so soft and from home is so nice. I will just wash it in really hot water when I get home. I also brought fingerless gloves.

     

    2. Bring your own clothes. The nurses will probably tell you that they want you in a gown because it is easier for them but you can wear you own clothes. Those gowns are so demeaning and not warm at all for someone with Raynauds. It makes it a little harder if you have an IV line in but they can temporarily disconnect the line while you take a sleeve on or off to change and if you are not on an IV it doesn't make a difference. You could even cut an opening into a sleeve to give them easier access. It has made all the difference psychologically to be dressed or in a comfortable nightgown of your own.

     

    3. Have a picture of yourself to put on the door or wall so they know how you look when you aren't sick. This is especially for chemotherapy patients but we all know scleroderma changes your looks as well, let alone how you look after not shampooing or showering for several days!  It makes you more human to them. I didn't do this but it is good advice. They also suggest photos of family or some personal items to have around your room.

     

    4. Ask if therapy dogs come to your hall and request to see one. I did and today I had a visit from a doggie named Seamus. That cheered me up. 

     

    I'm sure some of you have other suggestions of what to do to make the stay better. Maybe we can compile a list and put it in a separate post.

     

    I am going home today, just waiting for the doctor to come and release me. The nurse just told me he is on the floor eating lunch so hopefully he will be in soon. Everything is normal, my intestines are calming down, and the beach is waiting for me.

     

    A little funny story: I needed to call dietary because they forgot to put something I needed on my food tray and I dialed the numbers but it wasn't going through. I had to buzz the nurse for help. I was using the t.v. remote instead of the phone!!  

     

    miocean

     

     


  10. Thanks for all your kind thoughts. Shelley, I never thought of taking pictures, I guess I just felt too sick. Now all the medical things have ben moved out of my room for other patients.

     

    I have been playing the waiting game and basically sitting around. The last stool cultures are not back yet. The GI doctor said one of them is to test and see if my intestines have been damaged by the scleroderma. I asked how they could tell that from a stool sample and he said it has to do with how the fat is being absorbed. If the lining of the intestine is damaged, it will show up that way. I feel a lot better and have no more diarrhea. They want to keep me here one more day. I feel like I am wasting space and time but know they want to be sure there are no problems before sending me home.

     

    Margaret, I was in Florida when I got the food poisoning. All my trips to Mexico I have been fine so that tells you it could happen anywhere.

     

    miocean


  11. A month ago, while on vacation, I had a bad case of food poisoning with violent vomiting and diarrhea for 10 hours straight. Since I was away from home and petrified of hospitals I didn't seek medical care but hydrated myself and rested. A week later I returned home and had appointments with two pulmonologists and my cardiologist. I told them of my experience but they didn't seem concerned. I had my regular labs drawn for my kidney transplant and saw my nephrologist. My creatine was a little high which he attributed to the diarrhea which was still going on. He referred me to a gastroenterologist the next day, my labs were redrawn and stool samples done.

     

    The diarrhea was getting worse and I was having trouble eating and drinking. I was feeling very weak so I called my nephrologist and he told me I needed inpatient treatment and to go to the ER and be admitted so I have been in the hospital for the past 4 days. My creatine was even higher. They gave me IV fluids, took more stool samples, and did a partial colonoscopy with biopsies for cmv virus and colitis. Everything is coming back negative, which is good but doesn't give an answer as to the diarrhea. My labs are great now.

     

    It is possible it is one of my anti-rejection drugs that is causing the diarrhea.  I have suffered with it since the transplant and have had GI issues most of my life. My doctor has cut it back, added some other medications to control the diarrhea and is calling my transplant center for a consult tomorrow. When they get the diarrhea under control I can be released.

     

    My anxiety about being in a hospital hasn't been too bad because I've been in a lovely private isolation room. Tonight the nurse came in and told me they needed the room for another patient and they wanted to move me. I asked if I had to and she said I could refuse. I started having a panic attack while I was thinking about it. After careful consideration I told her I was concerned that the health issues of having another patient in the room with me could be dangerous for me because I am highly immune suppressed and I want to stay here. So I get to stay! Now if the diarrhea with stop I will be able to go home!

     

    miocean


  12. Update: The pulmonologist had nothing to add. She said that sometimes changes are occurring at the microscopic level and don't show up right away on tests. I am to make sure I use the oxygen, exercise, and lose 10 pounds. I currently use a portable oxygen concentrator that has a pulse flow; I may need to change to one with continuous flow. I am to repeat PFT's and 6 minute walk testing sometime in the fall.

     

    miocean


  13. Ronald, sorry for the delayed response but I was away for a few weeks.

     

    I have pulmonary fibrosis with interstitial lung disease. I also have pulmonary hypertension. My 2013 CT scan showed the beginning of honeycombing so I started the lung transplant process but 2 centers turned me down due to the dismotility of my esophagus. My 2015 CT scan stated there was no longer ground glass which my pulmonologist said means there is no longer inflammation. I declined tremendously on my 6 Minute walk test this year and my pulmonary function tests went down as well. My lung capacity is 38%. My diagnosis is end stage lung disease. I currently use oxygen at night and for exertion. I take Adcirca for the pulmonary hypertension, diagnosed 2 years ago.

     

    I was diagnosed in 2004 at the age of 51. One of my earliest lung symptoms was my lungs would get tired when I ran. I have been on and off oxygen over the years but am very frustrated right now because I am shorter of breath than ever before, even with the oxygen. There has been no change in my CT scan since 2013. My Echo was "fabulous" according to my pulmonary hypertension doctor. My right heart cath showed my mean pressures to be 26-30 with a peak at 40 (over 25 is PH) so mine is minor. I showed no improvement with 100% oxygen or nitric oxide during the cath. My PH doctor can't explain the increased SOB and told me to manage my blood pressure. She is not making any medication changes. My cardiologist said my heart is good and my blood pressure was 110 over 70 although it sometimes goes up to 150. He said I am not in heart failure. I take metoprolol for high blood pressure. I see another pulmonologist this coming week so I will let you know her take on things.

     

    It is very frustrating when I hear the "I don't know why's" from the doctors regarding so many issues with scleroderma and I go to some of the best specialists in the NY area. I cautiously have high hopes for the pulmonologist I see next week, she is a new specialist for me. I don't expect a cure but I would like an explanation. They keep on telling me things like I have a long time to live, that having a lung transplant would be trading one disease for something worse as life expectancy after transplant is not that long, that in 5 years things can change in the medical world, etc. 

     

    In the meantime, I live a very full life, travel as much as I can and do the things I love to do. I have a portable oxygen converter that makes things much easier. I hope I've answered your questions and reassured you that you can live a long while with lung involvement and beat the statistics you will read on the subject. I'll let you know what the pulmonologist tells me this week.

     

    miocean

     

     

     

     


  14. I was also a DES baby as my mother took Diethylstilbestrol to maintain her pregnancies with my sister and me. Because of this I started having PAP testing at the age of 18 and I believe I even went twice a year until I was 30 so the chance of an abnormal test would be higher anyway.

     

    Interesting, in reading the linked article it mentions autoimmune issues although no specific link has been made.

     

    miocean