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Good news, bad news, and ? news?


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  • Good news, bad news, and ? news?

    This first week of the new year has been a very busy one and filled with lots of news.

    The GOOD NEWS first! We learned that we are expecting our first grandchild in September!!! Now we have a BIG decision - can we face coming back here before the baby is born???

    The bad news is that I have been sent to bed with CHF and pneumonia again. The doctor (Dutch this time) said my lungs were a swimming pool. I was not surprised as I have been listening to each labored breath for a week, but have been too busy with grading finals to go to the doctor.

    Another bad news is that the mother of a student, Elizabeth, that we are extremely close to and who calls herself our daughter, died this week after a long bout with cancer. We have been so very sad for her and wish we could be there to help her, but she lives two days train ride across China from here.

    The ? news is that the good news makes it much more important for our daughter to be checked soon for HCM. We think that it is likely that she has it as she seems to have had symptoms for some years. Please remember her and her husband as their financial situation is not great and we are in less of a position to help them than we would be if we were in the US making US wages, especially since our medical insurance just doubled as of Jan 1.

    Another ? news is that the doctor told me that my chest x-ray today showed that my heart was larger than normal and somehow skewed (I did not understand how). That surprised him because my X-ray this past March at the same clinic showed a normal sized heart and really surprised me since this summer the echocardiological technician told me that my heart was much smaller than normal, which was her explanation as to why my rather small septum could cause such a large gradient under stress.

    I know I have been rather quiet, for me at least, lately, but maybe this will give you some idea of why.

    Thanks for any advice or suggestions and especially for your prayers and thoughts!


  • #2
    Hi Rhonda

    Congratulations on your little one What a joy to find out you will become a grandmother!

    Prayers for your daughter and her family. I pray that your daughter will have a easy pregnancy and that both mother and baby are in good health.

    I'm sorry to hear about your health. I have never had CHF and/or pneumonia to the point when I could hear myself weezing. I can only imagine it is scary. You will also be in prayers.

    Please take care


    • #3

      First of all... congratulations! What great news to hear that you are expecting your first grandchild in September. I do hope that your daughter gets checked soon for HCM, since the pregnancy and childbirth would surely place an additional burden on her heart. Perhaps she could speak to Lisa and get some help with finding low-cost services in her area? There are so many assistance programs available, especially for expectant mothers, i hope that she is able to find a way to get checked out and insure a healthy pregnancy and childbirth.

      I'm sorry to hear of the loss of Elizabeth's mother. When you're on the other side of the globe as you are, your extended family must certainly become very important to you, and i'm sure that you feel as close to Elizabeth as if she were your own daughter. My prayers go out to her.

      I'm also very sorry to hear that you are having health difficulties of your own right now. I have always read your posts with much interest, and am always amazed at how active you are, and able to travel so much despite the HCM. As far as the pneumonia is concerned, have you been able to get the pneumococcal conjugate vaccine (PCV7) where you are? I was unable to get a flu shot this year, but my doctor did give me the PCV7 shot while i was in his office last fall.

      I have not had a problem with pneumonia in the past, so i can't speak to the vaccine's effectiveness there... but i do know that it has worked for me in other ways since i have not yet had one ear infection since receiving it. This is one of the beneficial side-effects of getting the vaccine, and i would normally have had two or three ear infections by now. I know this has nothing to do with pneumonia, but it does speak for the effectiveness of the vaccine in general.

      I do hope that you're back up and about very soon, and able to enjoy all the very cool things you like to do.

      "Some days you're the dog... some days you're the hydrant."


      • #4
        I hope you're up and running around really soon. Congrats on the new baby! I'll keep your daughter in my prayers. Please take care of yourself. This new little person is just another reason you need to be careful. I'm so sorry to hear of your loss, too. Please know you're in my thoughts and prayers.


        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.


        • #5
          Rhoda, Congratulations on your first grandchild! Prayers for you, your family, and friends. I hope you get more good news from your daughter, that you find she's been checked and is clear. I'm sure that's a tremendous worry for you right now. When is the little one due?

          I'm also amazed at how much you are able to accomplish. Do take care of yourself. Best wishes for a speedy recovery. I hope a comparison of xrays gives you some more positive news. Please let us know, Linda


          • #6
            Quick update: I saw the doctor today - Sunday - at his insistence. I told him I did not want to come on Sunday because the cost is increased and he immediately said, "No cost. I need to see you. You are a high risk patient right now." So, I went today and he said that there was less fluid in my lungs, but I still have rales and crepitations (it is clear that to him these are very specific sounds, but I could not find the difference clearly on the internet), which he says implicate both pneumonia and chf. This time he said he could also hear wheezes so he thinks there is some asthma as well. He said it may have been there all along, but that the rales were so loud on Friday that he could not hear them clearly. But he agreed that we should not treat it because I am getting somewhat better, so why mess with success. He wants to see me again tomorrow and will run more tests when the costs are lower again.

            He paid me a nice compliment by saying that I seem really cheerful and happy in spite of all that is wrong with me. So we had a pleasant conversation (in between my coughs) and he told me about his girlfriend and showed me her picture on his computer and discussed the ecology and sociology of the Comoros Islands, where he last lived and where his girlfriend is. Then he said, "See now I can truthfully say that this was a social visit, not a medical one. So, no charge!."

            See, there really are good reasons for living in China!



            • #7

              I am so glad you are doing better and that you recieved such compassionate care from your doctor. Rest well and keep doing well.

              So happy to hear the wonderful news about your future grandchild , enjoy this special time of anticipation and wonderment.

              My best,

              Dx @ 47 with HOCM & HF:11/00
              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
              Lead failure,replaced 12/06.
              SF lead recall:07,extracted leads and new device 2012
              [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
              Genetic mutation 4/09, mother(d), brother, son, gene+
              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


              • #8

                I am glad to hear you are feeling better - please take good care of yourself.

                By the way that cemetery you were talking about is about 10 miles away from me! It is a very very small world after all isn't it!

                Knowledge is power ... Stay informed!
                YOU can make a difference - all you have to do is try!

                Dx age 12 current age 46 and counting!
                lost: 5 family members to HCM (SCD, Stroke, CHF)
                Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                Therapy - ICD (implanted 97, 01, 04 and 11, medication
                Currently not obstructed
                Complications - unnecessary pacemaker and stroke (unrelated to each other)


                • #9
                  Hey Rhoda,
                  I’m glad to hear you are feeling better and getting control back of your condition. I was also happy to hear that you have such a compassionate doctor. (It’s a shame you had to go so many thousands of miles to find one – only half kidding.) I am extremely lucky that my PCP, cardiologist, and endocrinologist are cut from the same cloth, but in a way it is a shame that they stand out so much in the overall medical community. Well, on to other things.

                  I hope your daughter has a very uneventful pregnancy and presents you with the title of Ecstatic Grandmother. I still remember distinctly the evening when my daughter had her twins. The problem is that while we do not get any older, they grow up in no time at all. Those two little teensy grandchildren of mine are now driving around in their own cars, and while my granddaughter is still shorter then her mom, my grandson is already taller then his dad. There’s over a head difference between them.

                  So my friend, keep improving your health, and also keep that sunny disposition. It really does add a lot to a person’s feeling of well being – and it also makes the doctor’s wonder what you’ve been up to.


                  • #10
                    I'm glad to hear that you're improving so quickly. Give our thanks to your doctor for taking such good care of you. You're an asset to our little community.


                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.


                    • #11
                      I saw the doctor for the 4th time in just over five days this morning, and he said I still have crackles in my lungs and a fairly bad (but I say improving) cough. His conclusion was that I am a high school level problem and he is a grade school level doctor.

                      Anyway, he decided to put me on a second round of antibiotics, keep my diuretic doubled, encourage me to eat bananas since my potassium is at the very bottom of normal but I am taking it daily, and let me fly back to the US, so I can see doctors there. He did not seem to be happy about any of this, but could not figure out what else to do.

                      So, we will leave here Sat morning (Friday evening US time) and be inroute for nearly 24 hours.

                      Talk to you next from the US, most likely!



                      • #12
                        Hi Rhoda,
                        I’m sorry to hear you’re still not up to par, and it sounds like you have a pretty severe fluid problem. Actually it sounds a lot like what I went, and am going, through, - but I hope that is not your problem too.

                        I had a fairly severe fluid problem with crackles in the lungs, etc. The cardiologist kept increasing the diuretic dosage and adding new ones – at one point I was on three different diuretics, but the fluid problem remained. I also had some Potassium problems which were controlled by taking a supplement. When on the third diuretic my potassium level was almost completely depleted, putting me in the hospital. I got both potassium pills and a potassium drip, which even highly diluted burned the heck out of my vein - until I just couldn’t stand any more. The depleted potassium also resulted in severe leg cramps that I thought was going to tear the muscles. After the cramps I could only walk with extreme difficulty – and that was problematical. (I made it to the john, but the nurse had to assist me back to bed.) The second day I could make it both ways and the third day, I could walk again, with only minor difficulty.

                        The water problem was still intractable, and actually getting a bit worse. The second time I was on three diuretics only lasted one day and I was back in the hospital again – this time with kidney failure. They got them going again, and I was released, but taken off all diuretics. All this time I had a chronic cough, and I would guess I was in CHF almost all the time. Right now they have brought me back to 40mg of Lasix, with no potassium supplement, and I’m walking the line between CHF and kidney failure. Actually, that line is quite blurry, and I am packing a great deal of water, and still have the cough and crackles. My kidneys are functioning fairly well at the moment, but the creatinin level (a measure of kidney function) tends to fluctuate quite a bit. This is common before kidney failure, which is why I had the fistula put in yesterday.

                        If you can avoid taking this path, by all means do so – except I do not know what other path would be open to you. In any case, please be careful of your kidney function and potassium levels while they try to dry you out. It can get to be a slippery slope.


                        • #13
                          Rhoda, so sorry you are feeling so poorly. Take care of yourself and hope your long flight back to the US is uneventful.
                          Let us know how you are doing when you get a chance. Take care.
                          It's not what you gather, but what you scatter that tells what kind of life you have lived.

                          Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


                          • #14
                            Rhoda, I hope things go well on the flight back and you get good news with a rapid recovery plan once here. We'll be waiting for news. Linda


                            • #15
                              I hope you have a pleasent trip back to the US.

                              And I hope you can get the best care possible while you are here. Please keep us posted.

                              Hugs -- Eileen
                              49 yrs. old
                              Diagnosed at 31.
                              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                              My brother passed away suddenly at 34 yrs old from HCM.
                              2 teenage children, ages 17 and 15.


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