Jump to content
Sclero Forums


  • Content count

  • Joined

  • Last visited

Everything posted by miocean

  1. We all know what a joy it is to be hospitalized (not...!) I hope no one is in a hospital or has to go into one but I was just thinking of things that can make a hospital stay so much more fun than it already is. I usually consider it a good year if I am not hospitalized. I do have a couple of tricks up my sleeve that have helped: Someone told me once to have wrapped candy, preferably chocolates, in your room. That way the nurses and staff will come into your room to get a little treat. I tried this when I was in ICU and made very good friends with the nice man who cleaned the rooms. He would come in to get a piece and stay and talk awhile. When I was wheeled out to go to a regular room all the nurses shouted, "bye chocolate lady!" (This does not work if the nurses are dieting ) I always have a headset to listen to at night. Everybody knows there is no rest or quiet, especially at night. I had a roommate once that had her days and nights mixed up so she slept all day and talked out loud all night. Putting on some nice music blocked it all out. Now that cell phones are allowed having one is a great way to stay in touch. Before cell phones I used a calling card and racked up $$$$ in calls. And remember to bring the phone charger and extension cord. Antibacterial gel is a must. Who knows when the last time the items in your room were disinfected well? I've watched as they have "cleaned" a bed from one patient to the next. With gel you can keep your hands clean, especially before eating that wonderful hospital food if you are unable to get up to go to the bathroom and wash . :P A pen and paper, reading material, your own toiletries, dry shampoo, slippers, robe...do you have anything to add? I hope no one has to go to one of these high end hotels but just heard of someone who is in the hospital for her birthday, too far for me to go to visit, and it made me think of this. I have also made hospital survival kits for friends who are going to be hospitalized with some of these things in them and something special for them. miocean
  2. miocean

    Lung Transplant

    Hi Dawn, Welcome to the forums...I, too, am seeking a lung transplant and am currently going through extensive testing. I have not been approved at a center yet. I had a kidney transplant 3 1/2 years ago and am familiar with the rigorous testing/appointments necessary as I listed at 3 centers. I am complicated for a lung transplant because of the kidney and complications of scleroderma, especially damage to my esophagus. Although I am not at end stage lung disease the fibrosis in my lungs is increasing and is also showing honeycombing as well as ground glass. I have also been diagnosed with pulmonary hypertension via right heart catherization. I use oxygen upon exertion and am going to pulmonary rehabilitation. Because of my age, I am seeing if I will be considered now, as my age may make me ineligible soon. I was turned down at the first center I applied to for lungs due to damage to my esophagus shown in a barium swallow. The 2nd center is willing to test me further before making a decision. I have met with the transplant program, had a quantitative perfusion lung scan, carotid artery sonogram, stress echo with bubble, 6 minute walk test, and a meeting with the pulmonary hypertension specialist. This week I have a left and right heart catherization to validate the diagnosis of PH and check my heart. I have met with my GI doctor and am trying to get a gastric emptying and 24 hour ph esophagus test scheduled, which is turning out to be more difficult that it should be. If I am turned down at this center there is another that does higher risk transplants but it is very far away and we would have to relocate for a while. I am hoping that the fibrosis in my lungs does not increase and they get to the bottom of my shortness of breath and get me on the right medications or that there are procedures I can go through to correct some of the things that are wrong. The problem is some of the tests and the transplant itself could damage my kidney. For the heart catherizations I will need extra hours of hydration to protect me from the dye. As far as caregiving, the best advice I can give is to try and make others understand that Butch has a life, too. For 9 years my husband has been having people ask him how I am, but they forget that he is going through this as well. It is important for him to maintain his friendships and the activities he enjoys as much as he can. I have been very fortunate to have my husband right by my side but have been capable of managing the details (planning, finances, appointments, etc.) on my own. I am now encouraging him to become more involved in these areas in case there comes a time when I can't manage it as well. I also try to do things I know he enjoys even thought there are times it is hard for me. He has given up so much for me, I can make the extra effort for him. I hope you will share more as to where you are in the transplant progress. I wish you both the best. miocean
  3. miocean

    Anything is Possible

    Hi Marsha, GOOD FOR YOU!! I have tried to climb Katahdin three times from three different trails. The first time was on the Katahdin Trail. We got to where there were huge boulders with metal rods in them to help get over them only the bottom ones were broken. I just could not lift myself up and over but it was a beautiful day and I enjoyed every bit of it, although I was disappointed. The next time was from the other side, I think the same side you went up. It was a hot day, we got a late start and there were black flies. Every time we stopped to catch our breath we were swarmed. We ran out if water and I had visions of my body being helicoptered off the mountain. We had to turn around with reaching the summit. I was very happy to get back to the car. The last time was during a heat wave and we were at the Abol Trail. Rangers were telling us stories of people being helped down the mountain with heat exhaustion. You had to carry so much water with you it would weigh a ton. We were the only ones in the campground. It was too hot for fires, there was no water in the stream and we were covered with dust. I went a short distance up and gave up, my husband went further but came back down, we packed up camp and left! SO I KNOW WHAT AN INCREDIBLE ACCOMPLISHMENT THIS IS!! Another beautiful area of Baxter State Park is South Branch pond on the north side. I did climb The Traveler there and it is our favorite place in the park. We also climbed Mount Kineo on Moosehead Lake and that was great, too. We were die hard campers in the past and spent summers in Maine. Alas, I am now really a flatlander and the biggest hill I climb is the ramp to the boardwalk. I envy you your climbing and the beautiful state you live in. One day I will get to Acadia... miocean
  4. miocean

    Meds for PH

    Hi Jlang, I was recently diagnosed with PH via right heart catherization where part was done during exercise (I had to lift saline bags over my head.) Based on a wedge pressure of 30 under exercise I was started on medication and a diuretic. The diuretic set all my labs off for my kidney transplant anti-rejection medications so I had to cut back on it. I am currently undergoing testing for a lung transplant and saw a PH specialist. A right heart catherization will be repeated but this time it will be done with a chemical to induce stress. I also am having multiple tests done on my lungs, heart (including a left heart catherization,) and my GI system. With your pressures under Echo higher than normal, has your doctor ever suggested a heart catherization? Are you short of breath at all? If so, is it when you are sitting still, moving around, or laying down at night? Judyt, it is interesting to me that what was thought to be PH ended up being something else. I asked the PH specialist if she would be my PH doctor and she said, "that depends on if you have PH or not." She also said she had an idea of where the transplant doctor was heading with all of the testing. Before I read your post I had the thought that perhaps it might be something else. miocean
  5. miocean

    Thyroid Test

    I have some questions about thyroid test that were run recently. First, please note that in my mid teens and overweight I was diagnosed hypoactive and took medication for a short period of time. In my early 30's I was diagnosed with Euthyroid Graves Disease with Exophthalmos Eye Disease (hyperactive but extremely overweight), also treated with medication for a period of several months. This was way before I knew to keep any records so I have no idea what my labs were or the medication I took. Although I have questioned symptoms I have that are signs of thyroid issues, T3 and T4 tests come back in the normal range and the doctors tell me I don't have thyroid issues. I have just had a more extensive panel and am hoping for help in interpreting them or suggestions for further testing of if more testing is necessary. Thriidothyronnine T3 110 Range 58-159 Normal Thyroxine T4 7.43 5.41-11.66 Normal Thyroxine Free T4 Free 1.27 0.70-1.24 High Thyroid Stimulating Hormone TSH 0.33 0.32-4.05 Low Normal I know you are not doctors and cannot diagnose but perhaps you can guide me. Thanks for your help. miocean
  6. miocean

    Thyroid Test

    All of this is very interesting... After being diagnosed with Euthyroid Graves Disease/Exophthalmos (that is a very hard word to spell!) Eye Disease, intensive testing, Including looking for a brain tumor, and several months of medication the endocrinologist I was seeing wanted to radiate my thyroid. I went for a second opinion and that endocrinologist looked at all my labs and notes and said he didn't think I ever had the disease to begin with. So guess whose opinion I went with? :P I was under a lot of stress at the time, eventually my eye returned to normal and through diet and exercise I went from 198 lbs to 145 lbs. after getting out of a toxic relationship. Again, I don't have any records from this and it was almost 30 years ago. These recent tests were done by the lung transplant center. I also had several antibody tests run but I wouldn't know which one is for thyroid. msjess, what would the antibodies for thyroid be? They drew 20 vials of blood. My ANA came back 1:320 speckled. Originally in 2004 it was 1:180 speckled. My scleroderma specialist just ran this test a couple of months ago and it was 1:180 diffuse which she told me meant "undetermined." (?) She also told me if my thyroid tests come back normal then I don't have any thyroid problems including Hasimoto's. I see her next month so I will be asking. I have often considered going to an endocrinologist but the wait to see one is long here and I haven't been able to find anyone who recommends one. I am currently seeing an Integrative/Functional Medicine Doctor and recently underwent a 21 day total elimination diet followed by reintroducing foods. I do seem to have gluten sensitivity as well as dairy. I am still working on introducing things, so far shellfish and beef do not seem to be a problem. It has been about 65 days, I have lost 12 lbs. depending on the day. :D I am eating much healthier, no sugar substitutes, healthy organic produce and meats, no carbonated drinks, no coffee, no processed foods. I still have an occasional problem with sugar, but I admit I am an addict and all things considered, I am doing very well with that. I see him again next week and I will be going over the lab work with him and looking for answers. Magnesium, oh my!! After my kidney transplant my magnesium was low so my nephrologist had me take 2,400 mg daily! Talk about becoming best friends with bathrooms all over the place. Even with that dosage it never went up and I tried for months to tell him everything was passing out of my system too quickly to be absorbed and on top of that I had damage to my GI system from scleroderma. It took over a year for me to convince him to let me stop taking it and see what happened. :emoticon-bang-head: I am now back in the normal range, although it is low normal. In general, my labs are good for someone with a transplant. I have also been reading about adrenal gland failure and plan to ask my doctor about that. He is new to me but if he is a true Functional/Integrative Medicine doctor he should be able to help. I was also diagnosed with parathyroid gland issues when on dialysis and was told that I might have to have surgery but that has never happened and it is tested a couple of times a year and my doctor says it is fine. Dialysis really screws up your body while it is keeping you alive. Tonight I have to organize pages of papers to fax to the transplant center, put my weekly meds in the boxes, tomorrow I go for blood work, pulmonary rehab, and a chiropractic appointment, the next day I go into the lung transplant center for a 6 Minute Walk Test and an appointment with a pulmonary hypertension specialist, who I looked up and is the top doctor there. I will continue to question the thyroid tests at the center and hopefully will get answers there. Pretty soon I get to have a 24 hour PH test on my esophagus and a gastric emptying series. :woohoo: Oh, then an endoscopy and colonoscopy. :happy-dance: So Shelley, I would join you on that trip to Mars as I am sure they would have oxygen there, the only problem is there is not very much, if any, water on Mars and this girl needs to be around the water! Now you know why I go to the beach so much, no paperwork, no doctors, no phone (unless I am really expecting important medical calls.) miocean
  7. miocean

    I'm Radioactive

    I had a quantitation ventilation - perfusion lung scan today. "Nuclear Ventilation/Perfusion Scan (VQ Scan) studies both airflow (ventilation) and blood flow (perfusion) in the lungs. The purpose of this test is to look for evidence of a blood clot in the lungs, (pulmonary embolus,) that lowers oxygen levels, causes shortness of breath, and can be fatal." Posted by Sweet 2011 in Sclero Forums. This was a new test for me: it involved breathing in a radioactive gas through a mask and being scanned, then having a radioactive liquid injected and scanned again. I now have a letter to carry around with me stating that I am radioative (in case I am stopped by homeland security!) :D Funny but true. Not that I would be checked here in my little beach town but being as I have to travel in and out of NYC and the heightened security I could be stopped at a checkpoint at a bridge or a tunnel. I also had a carotid artery scan and another "new" test for me, a stress echocardiogram with bubble. This test combined a standard echo, then an injection of saline and air, getting on a treadmill and walking until exertion, quickly laying down and repeating the echo. It is designed to give a better idea of how the heart is functioning than a standard echo. I'll be interested in seeing the results and hoping all will be good with them! miocean
  8. miocean

    I'm Radioactive

    Amanda, You made me laugh...As my mother-in-law would say, "anything for attention!" P.S. She had limited scleroderma and never lost her sense of humor. Her short term memory was another thing.... :rolleyes: miocean
  9. Today I called and cancelled a left heart catherization that was scheduled 3 days from now at the lung transplant center. I have never cancelled any test in the past but I feel I was justified in doing so. My reasons are: 1. At the initial consult the transplant doctor said both a right heart and left heart catherization would probably be repeated. I see the pulmonary hypertension specialist next week and did not want to go through two different catherizations if it was determined I needed a right heart cath as well. 2. I called my nephrologist and asked if there were any special things I would need to know about the left heart cath in regards to my transplanted kidney. He said IV fluids would need to be administered before and after to make sure the dye left my system quickly. Although he made repeated calls to the transplant doctor, he was unsuccessful in reaching him. I do not want to risk any possible damage to the kidney. 3. There was no appointment to meet with a cardiologist prior to the procedure. I have had 3 heart catherizations previously (two for evaluation for the kidney transplant) and each one was after meeting with a cardiologist. Besides protecting the kidney transplant I have other issues I would like to discuss before the procedure. I would like them to know my medical history, what would be done if a blockage was found, make them aware that I have convulsive syncope and could have a seizure under extreme duress, and know how the closure would be made. I emphasized that I am still open to having the procedure, but want more information/answers before I have it since it is invasive and involves dye. I spoke to the scheduler who said she would inform the transplant doctor. In two days I go in for an echo that is done under exercise. I am also supposed to have a carotid artery sonogram and a 6 minute walk test before seeing the PH specialist but these are not scheduled yet. I know I made the right decision but am slightly concerned the transplant center may view me as "non-compliant." miocean
  10. miocean

    I Cancelled A Left Heart Catherization

    The transplant coordinator called today and said she just got the email that I had canceled the heart cath. When I explained why she understood, wants to be updated after I see the pulmonary hypertension specialist next week as to if what heart caths are needed, assured me that all precautions would be taken to protect my kidney, and suggested I see a cardiologist after all the tests for interpretation. I expressed my concern about the convulsive syncope and she said she would make sure it was brought to their attention at the time of the catheterizations. I also told her I started pulmonary rehabilitation and had most of the paperwork they requested from my other doctors almost complete to send in a packet. She thought all was well so all is good. So we are moving on. Thanks for the reassurance. miocean
  11. miocean

    Thyroid Test

    Thanks Shelley and Jo, I have about half of the symptoms of Grave's. However, I am cold most of the time and have difficulty losing weight. Even at the height of my fitness with dieting, running, swimming and working out I could not get to the upper range of my BMI. I can easily gain 3 pounds overnight so is it pulmonary hypertension, fluid retention, congestive heart failure, all things I have been diagnosed with. Scleroderma is so complicated and based on my experience makes other conditions extra difficult to diagnosis. Let's take another issue I have suffered with for years: diarrhea. Is it caused due to GI damage from the scleroderma, side effects of medications I take for anti-rejection, Grave's Disease, food sensitivities, irritable bowel syndrome or a combination of all, having been diagnosed with all at one time or another? Does it matter? Do I want another disease and another specialist? I will also be interested in how a doctor interprets these. So far doctors wave them off and say I do not have any thyroid disease. I am just curious .... miocean
  12. miocean

    Applying for SSDI this weekend

    Kamlesh, That was Fast!!! Can you let us know the other things they requested? miocean
  13. miocean

    Applying for SSDI this weekend

    Dear Kamlesh, On my initial application I did not mail any medical records that I remember. I had to fill out the form by hand as that was in 2004. It was very difficult for me as I could hardly hold the pen to write. In it I wrote how hard it was to even fill out the form. I was extremely honest about how difficult it was for me to function. I remember writing things like "I have to stop now, this is too difficult." I thought I had saved a copy of my initial application but can't find it anywhere. I would advise to you make a copy and save it for your records. Again, my situation was different as I had End Stage Renal Disease and I qualified right away. I wish you the best of luck with this and an immediate qualification. miocean
  14. miocean

    Disability Insurance

    Great news, CarriePan!!! Doing the Happy Dance for you.... :emoticons-line-dance: :emoticons-line-dance: :emoticons-line-dance: miocean
  15. miocean

    In Desperate need of help!

    Dear Shelbi, I am so sorry your step father is suffering and know how hard it is for your family as well. There is a scleroderma center in Dallas. You can find it on the link Jo sent on scleroderma specialists. I do not know where your father went before and the doctor was "uncaring" but I can give you this advice: The doctor's personality is not an indicator of expertise. The best combination of a doctor is one who is excellent and outstanding in the field, personable, warm, interested in you as a whole person and not just their field of expertise, can take the time to call you personally and responds to your calls immediately, but to find a doctor with all these traits is impossible. And as most of us can attest, you are living in a fantasy land if you think you can find one and treasure one if you do. Speaking from experience with 9 years of dealing with diffuse scleroderma and multiple organ damage that involves a ton of specialists including a scleroderma specialist, sometimes you have to overlook the doctor's personality and realize that knowledge and proper treatment is more important than warm fuzzies. Scleroderma is one of the qualifying diseases for SS disability. Quite often the process for approval is long, with denials and appeals. You can hire a lawyer to help expedite the process and a portion of the payment will go to them but there is usually no payment up front. It does take a while to get approved and then several months before benefits begin. Most people find they are turned down on the first try and some hire a lawyer right from the start. Since my kidneys failed almost immediately I qualified without appeals. It can take a while to get this all sorted out, between getting in with the specialist for an appointment, getting the right treatment, going through all the tests, and going through the SSD process so don't expect results overnight. You father is fortunate to have such a caring a supportive family. This forum is a wonderful place for support and answers and we are here for you. miocean
  16. miocean


    It says in the article that this study must be confirmed for people with autoimmune issues. That probably means years more of trials and study, but it is hope for the future. miocean
  17. It looks like this is one of the tests I will be going through soon. From the way they described it, a wired test is the one they are going to schedule. I have been reading about it on our medical pages. This doesn't sound like fun, especially since I have such a bad gag reflex. I f I have a tube out of my nose, how do I manage oxygen? Does anyone have anything to add or something more current? miocean
  18. miocean


    Hi Buttons, Just want to let you know I am sorry you have the shingles and hope you feel better soon. I've only heard stories about how awful they are and hope I never experience them. I cannot get the vaccine because it is a live one and my immune system is weakened from the anti-rejection drugs. Thinking of you, miocean
  19. miocean

    Jo Frowde: ISN News Manager

    I asked Shelley about helping out in the newsroom and just her description exhausted me! :P miocean
  20. miocean

    Jo Frowde: ISN News Manager

    Congratulations, Jo! You do a great job with up-to date information for us. miocean
  21. miocean

    Lung Transplant Evaluation Take 2

    Shelley, I went through all of this before at the 3 centers I applied to for the kidney, all to varying degrees. The most intensive one was a center that required us to come for 10 days of testing, classes, and counseling. The other two were much less demanding. I learned the most from the 10 day evaluation/training even though I ended up not getting transplanted there. So I am looking at this as a learning experience. miocean
  22. miocean

    ISN New Topic: Needle Phobia

    My husband has needle phobia. He passed out when his dog got a shot. Seriously. Thanks for using my art work on the page! miocean
  23. miocean


    amberjolie, My skin softened but since then my lungs have worsened. Another question, once your skin softens, can it harden again? miocean
  24. miocean

    I'm happy today because....

    My medically free week is over. :( It wasn't totally medically free because I did have to contact some doctors but I had no appointments. I also had to fill out the forms for the evaluation at the lung transplant center tomorrow and get my paperwork in order. I've decided not to worry about being perfect with it because I haven't found one doctor or center yet that has been perfect with me! Ha! :D miocean