CPT and Endometriosis - Our Experiences

CPT and Endometriosis - Our Experiences

We were 39 years old, a few months before our 40th birthday, nonsmokers and in good health, when our symptoms first started. In those months we did not experience chest pain, but did have episodes of dizziness and a "crackling sound" upon inhalation. Symptoms would last a few days, resolve and then return later. We did not correlate the symptoms to the onset of menses at that time.

Prior to this little adventure, we were both on ovulation suppression hormones which were discontinued about one year ago. Lynn experienced shortness of breath when the crackling sound returned in Dec 2002. Due to a throat infection one week prior, she thought she might have bronchitis and went to the doctor for an evaluation. A chest x-ray showed a 90% pneumothorax. The doctor called for an ambulance. She had a chest tube inserted in the ER and spent four days in the hospital.

One month later and back to work, Lynn became light headed and experienced yet another exciting ride in the ambulance! An x-ray showed a 20% recollapse. Both collapses had occurred at the start of her period. Being made aware, (after the first collapse) of a type of pneumothorax associated with menses, we thought it too coincidental. Although Lynn was never diagnosed with pelvic endometriosis, twin sister Lori was and both shared all the same symptoms.

Gratefully, the surgeon was aware of the condition. He provided the name as catamenial pneumothorax, and sent Lynn home with a Heimlich valve chest tube (a one-way valve that lets air out of the pleural space, but not back in).

After one week the collapse did not resolve and the pulmonary specialist suggested chemical pleurodesis (the standard treatment for reoccurring SPT). After reading about CPT, we knew that pleurodesis alone in such cases showed a high rate of reoccurrence, because it does not address the cause of the collapses. When this was suggested to the pulmonary specialist, he flatly dismissed the possibility, because the condition was so rare.

Lynn refused the pleurodesis and spoke to her doctor about surgical options. Gratefully, he was much more open to the idea, and she was referred for surgery. During VATS, the surgeon found and sutured holes in the diaphragm. He also found scar tissue which may have indicated past smaller collapses which had resolved themselves. He performed the pleural abrasion with talc. Lynn spent twelve days in the hospital.

The Pneumothorax Twins

During all of this, and for the few months prior, Lori had been experiencing episodes of lightheadedness, off and on. She thought it was due to the massive bleeding she had been experiencing after receiving an injection of Depo-Provera (about nine months prior, for endometriosis).

In March of 2003, the dizziness got very bad and she went into an Urgent Care facility. After explaining to the doctor that she wanted an x-ray to rule out a pneumothorax, he said that she had good breath sounds and good blood oxygenation and refused to give her one. A few days later she was back, and again asked for an x-ray, which showed a 60% collapse. She was transported to the hospital ER, declined a chest tube and requested to speak to the thoracic surgeon. Two days later, Lori underwent VATS, and her surgeon also found holes in the diaphragm. He repaired the holes and performed pleural abrasion.

We are still in the process of recovering. Breathing is still at times a bit labored (two months from surgery), but is getting better every day. We still have some pain (from the chest tubes), mostly a sporadic stinging kind of pain under and along the inside of the right breast. There is still numbness there as well.

Overall recovery is going well, and we feel more back to normal each day. We have a new appreciation for just being able to breath without having to think about it! We have learned a lot along the way, and were blessed to be cared for by some really wonderful doctors, nurses and hospital staff.

Six Month Update

Following surgery, we were put back on birth control pills. Lori experienced increased blood pressure and discontinued use, while Lynn continued to take them. Shortly after our original post, we both experienced a re-collapse. Lori had a 15% which resolved unassisted after three weeks. Lynn had a 15% which increased to a 30% after three weeks. Lynn was readmitted to the hospital for another chest tube and the chemical sclerosing procedure (a very painful, but survivable experience). As the birth control pills were ineffective in controlling the endometriosis, the OB-GYN recommended Lupron (a GnRH analog) or a hysterectomy.

Knowing the ineffectiveness of Lupron to resolve endometriosis long term and aware of the significant side effects Lori has continued to suffer from after Zoladex and Depo-Provera, we began to research other options. We had our hormone levels evaluated, and obtained a prescription for bio-identical progesterone. After six months of this therapy, we had not had any more large collapses but continued to experience episodes of what can be described as "bubbles moving around", or small collapses.

In spite of that, we had noted that our pelvic endo symptoms decreased somewhat. Lori's excessive clotting during menstruation lessened and her periods were becoming more regular. (After the Depo-Provera she bled almost daily for about ten months, sometimes with heavy clotting.) The fibroids and pelvic implants had decreased a bit in size and also in the intensity of pain during menstruation. As for the chest, shoulder and back pain associated with collapses, that had decreased as well. It was still there but to a lesser extent than it was, and it was more sporadic. It was not the constant sharp pain that it had been.

As we continued this therapy, our progesterone levels had risen to levels allowing better balance with the estrogen. We had also since learned that we had iron deficiency anemia, and were very high in cortisol. Both of those problems are interconnected with our endo problem. In addition to the progesterone, we started taking iron supplements, vitamins and a cortisol inhibitor. Overall, we did feel a little better. We had less pain even with the small collapses.

In spite of the progress, Lynn experienced a 40% re-collapse in January 2004. She had another chest tube and more talc inserted. During her hospital stay, she had a total abdominal hysterectomy with removal of the ovaries as well. The doctor said that her pelvis was "a mess", with multiple fibroids and endo adhesions everywhere. Both ovaries were completely covered in dried blood, and one fibroid was nearly as large as her uterus. Lori is currently scheduling the same surgery for April 2004.

Despite our best efforts to avoid this surgery, we had been left with few options. We are hoping that this will finally allow us to move forward with our recoveries. Due to the estrogen-dependence of the endo implants, we will not be using hormone replacement therapy, and will address post-menopausal symptoms with natural substances which do not contain estrogen.

December 2004 Update

Lori is 8 months post op and has had no further collapses since her hysterectomy. During her recovery, her stored iron level (ferritin) has increased a few points. Although she continues to have episodes of pounding heart, (especially at the end of a stressful day), it has decreased in frequency from where it was at the diagnosis of anemia. She is currently taking Proferrin, a heme-iron supplement (Colorado Biolabs). Her energy is slightly better, but she also continues to experience episodes of fatigue accompanied by increased blood pressure. The lower estrogen has contributed to hot flashes and joint pain, especially in her hands. Glucosamine, evening primrose, fish oil and vitex have helped to reduce the severity of symptoms but have not eliminated them. Although it was not our original intention, Lori has started estrogen therapy. She is taking Tri-Est, a bio-identical estrogen cream, containing mostly estriol. She is also using bio-identical progesterone. In the last month, she and her doctor have been adjusting the dosage of both, in an attempt to restore some level of estrogen/progesterone balance without causing the endometriosis to proliferate. Posts on the Hystersisters web site indicate that many women with a history of endometriosis, can experience some relief of menopausal symptoms using bio-identical estrogen/progesterone without having the endometriosis return. This has not been true however, for synthetic hormone replacement. As such, Lori is using the bio-identical hormones.

Lynn is 11 months post op and is feeling much better. She also has had no further collapses since her hysterectomy. During months 1-6, she was somewhat weak and tired, but started to feel almost normal after about 6 months. At 11 months, she feels even better. Shortly after the hysterectomy, she had limited chest/back pain, which has decreased substantially over time. We feel that any residual pain seems to be more from scar tissue resulting from surgery/pleurodesis, as it is not in the same place or of the same type as when we experienced pain during collapses. Her breathing has improved and she notices that muscles in her back and around her lung seem to "loosen up" after moderate exercise. In the early months after the hysterectomy, Lynn had hot flashes and night sweats, but continues to experience only mild hot flashes now. She is taking evening primrose, some progesterone and avoiding products containing soy. She did experience some weight gain following surgery, although considering the change in hormone levels and the trauma of surgery, it is not unreasonable to attribute this to an increase in cortisol. A cortisol reducer and moderate exercise are helping to keep her weight under control. Overall, Lynn is feeling pretty good and has resumed all normal activities.

Goals for 2005

Lynn will not be taking estrogen as is sister Lori, so that we can compare menopause symptoms and monitor Lori for any return of endometriosis or CPT symptoms.

Another goal we have is to compile the experiences of all of you who have written to us, so that you can review the treatment trends of a larger group of patients, besides just the two of us.

This would probably take the form of a questionnaire and the results would be posted on a new survey page. We are in the process of determining the best way to do that. Your identity, of course, would be confidential, and known only to us. Both your answers to the questions and your E-mail address would also be confidential. Your responses would be used only in a statistical format; (for example, "40% of respondents (52) had VATS", etc.) We will contact you by e-mail when the survey is ready. You may also contact us, to express your interest or disinterest in participating.

We will keep you posted in the new year, as we continue to look for answers together!

November 2006 Update

We have delayed updating our conditions due to Lori's continued health problems, which have now hopefully, been resolved with the removal of her right kidney in October of this year (more on that later). First off though, we are happy to report that we have had no further collapses since our hysterectomies in January and April of 2004. (Lori did experience a minor collapse during her kidney surgery which was expected and is explained below). We are now both taking low doses of bioidentical estradiol and testosterone and a higher dose of bioidentical progesterone, and have had no problems with this type of hormone replacement therapy. All three hormones are applied as a topical transdermal cream. The bioidentical HRT has decreased our menopause symptoms of hot flashes and joint stiffness. We are also taking extra calcium, Sam e and a thyroid support supplement (not thyroid hormone). Lynn feels good, has energy and reports that even the scar tissue discomfort has lessened over time. She has also flown several times across the US, with no problems. Lori is slowly regaining her energy back since her kidney surgery.

As for Lori's kidney issues, following her thoracic surgery she never fully regained her health. Her blood pressure had been elevated during the use of Depo-Provera and Zoladex, but in the last two years it continued to spike periodically. At times it would be normal and then rise into the 180's for no apparent reason. She began to experience symptoms of dizziness, heart pounding, heart palpitations, muscle weakness and fatigue. As her condition deteriorated, she stopped driving, and could not stand for more than a few minutes. Her equilibrium was off to the point where she constantly felt like she was on a boat or on an elevator. Her primary care physician remained unconvinced that anything was wrong with her and continued to prescribe blood pressure medications. We pursued numerous would-be causes on our own and had her evaluated by several doctors (heart, thyroid, parathyroid). Finally we paid for a CT scan ourselves which showed that one of her kidneys had atrophied while the other had enlarged. At some point, the artery to the right kidney had become blocked, causing the kidney to overproduce renin. As part of a feedback mechanism, renin constricts the blood vessels, thereby raising the blood pressure and causing more blood to be delivered to the kidney. This rise in blood pressure is system wide, which may explain why Lori reported that she always felt "buzzy". After more investigation on our part and a lack of action on the part of her health plan, she referred herself to UCLA, and was seen by an expert in Renal Artery Stenosis. After evaluating both renal arteries, he determined that the left was perfectly clear, but that the right artery could not be repaired and that the right kidney could not be saved. In October 2006, she underwent a laparoscopic right nephrectomy, and now finds that her blood pressure is stable without any medication. Her energy is slowly returning, the palpitations have stopped and she is feeling better. We expect a full recovery.

One reason we share this latest development with you, is that during the laparoscopic procedure a significant volume of carbon dioxide gas is inserted into the abdominal cavity so that the surgeon can better view the organs. Due to her previously compromised diaphragm, we knew that the gas could be a problem and discussed this concern with her surgeon. We all agreed that in a worse case scenario, she would wake from surgery with a chest tube. As it turned out, she did in fact experience a small collapse (5%) that required a Heimlich value chest tube. The CO2 evacuated by the following day, and the back pain from the collapse went away. We mention this especially for the CPT ladies who are considering a laparoscopic hysterectomy. You should be aware of this possibility during any laparoscopic procedure, and be sure that your surgeon knows that you could experience a pneumothorax during surgery.

We are pleased with our recoveries and hope that our story will give you information, a new perspective and HOPE!

January 2008 Update

It has now been five years since our CPT adventure began, and we continue in good health. We have remained collapse-free since our hysterectomies in 2004. Lori has recovered from her nephrectomy in 2006 and her blood pressure remains stable. We continue to take bio-identical pharmacy compounded transdermal HRT and are doing well. In our efforts to keep the estrogen low and the progesterone balanced, our current dosages are:

Estradiol: Lori - 3 mg / daily; Lynn - 1 mg / daily

Estriol: Lori - 3 mg / daily; Lynn - 1 mg / daily

Testosterone: Lori - 1 mg / daily; Lynn - 1 mg / daily

Progesterone: Lori - 150 mg / daily; Lynn - 100 mg / daily

Other supplements and vitamins include calcium (1000 mg / day), multivitamins, fish oil, probiotic, cranberry and thyroid support (not thyroid hormone). Lori continues to take the Proferrin (Heme iron supplement).

New to the web site, we have added a CPT Fact Sheet for ladies to take to their doctors, in lieu of printing the web pages. See FACT SHEET for Doctor to download the two page pdf document. We have also updated the survey and made it available on-line. Working with SurveyMonkey.com has enabled us to make the survey easier to complete. If you are a CPT patient, we would really appreciate your participation. Just visit the Survey Page to access the link, or send us an e-mail and we will send the link to you.

Although we continue in good health, we faced other challenges this last year which proved to be even more difficult than our struggle with CPT.

In November 2006, just 30 days after Lori's nephrectomy, our healthy mom of 61 was diagnosed with cloacogenic carcinoma, a rare and aggressive form of anal cancer. After receiving a clear routine colonoscopy exam just three months prior, she began to experience symptoms of an obstructed bowel, which her physician promptly diagnosed as irritable bowel syndrome (IBS). Eventually the pain worsened, sending her to the emergency room. A non-operable rectal tumor causing a bowel obstruction was discovered and an emergency colostomy was performed (re-routing of the bowel).

For the next several months we traveled often between Los Angeles and San Diego to accompany mom through chemotherapy, radiation, multiple hospitalizations, surgeries and other procedures. During this time, our dad, who had previously depended upon mom for everything, had to learn how to completely manage the household as well as function as the primary caregiver. To his credit, he had a very short learning curve that he was faced with, and did more than even he thought he was capable of. Knowing that time with her might be short, we worked to improve the quality of her life where we could and found ways to show her how much we loved her. The Lord blessed us with 7 months before gently calling her home in June 2007.

Struggling through this journey with mom was incredibly painful and emotionally exhausting. We now know how she felt watching us go through CPT; wanting to stop the suffering and being helpless to do much about it. Had we not had our strong faith in the Sovereignty of God, we would have fallen to pieces long ago. Although we begged Him for her healing, he chose not to heal her here. While this was not the outcome we had prayed for, His intervention was clearly demonstrated in many other ways by providing emotional, financial and logistical resources just when we needed them. Knowing we are held by God, gave us strength to accompany mom through her ordeal and continues to give us strength as we face our futures without her.

Although the loss is great, we look forward to the day when we will see her again, and we are comforted to know that she is finally free, safe and whole. Life can be incredibly hard, but God is faithful.

"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

Home CPT - What is it? Treatment Options Our Experiences CPT Images Hormonal Imbalances Endo and Anemia Researching CPT CPT - Literature Endo - Literature CPT Survey Emotional Support FACT SHEET for Doctor Contact Us	Catamenial Pneumothorax and Endometriosis
	CPT and Endometriosis - Our Experiences We were 39 years old, a few months before our 40th birthday, nonsmokers and in good health, when our symptoms first started. In those months we did not experience chest pain, but did have episodes of dizziness and a "crackling sound" upon inhalation. Symptoms would last a few days, resolve and then return later. We did not correlate the symptoms to the onset of menses at that time. Prior to this little adventure, we were both on ovulation suppression hormones which were discontinued about one year ago. Lynn experienced shortness of breath when the crackling sound returned in Dec 2002. Due to a throat infection one week prior, she thought she might have bronchitis and went to the doctor for an evaluation. A chest x-ray showed a 90% pneumothorax. The doctor called for an ambulance. She had a chest tube inserted in the ER and spent four days in the hospital. One month later and back to work, Lynn became light headed and experienced yet another exciting ride in the ambulance! An x-ray showed a 20% recollapse. Both collapses had occurred at the start of her period. Being made aware, (after the first collapse) of a type of pneumothorax associated with menses, we thought it too coincidental. Although Lynn was never diagnosed with pelvic endometriosis, twin sister Lori was and both shared all the same symptoms. Gratefully, the surgeon was aware of the condition. He provided the name as catamenial pneumothorax, and sent Lynn home with a Heimlich valve chest tube (a one-way valve that lets air out of the pleural space, but not back in). After one week the collapse did not resolve and the pulmonary specialist suggested chemical pleurodesis (the standard treatment for reoccurring SPT). After reading about CPT, we knew that pleurodesis alone in such cases showed a high rate of reoccurrence, because it does not address the cause of the collapses. When this was suggested to the pulmonary specialist, he flatly dismissed the possibility, because the condition was so rare. Lynn refused the pleurodesis and spoke to her doctor about surgical options. Gratefully, he was much more open to the idea, and she was referred for surgery. During VATS, the surgeon found and sutured holes in the diaphragm. He also found scar tissue which may have indicated past smaller collapses which had resolved themselves. He performed the pleural abrasion with talc. Lynn spent twelve days in the hospital. The Pneumothorax Twins During all of this, and for the few months prior, Lori had been experiencing episodes of lightheadedness, off and on. She thought it was due to the massive bleeding she had been experiencing after receiving an injection of Depo-Provera (about nine months prior, for endometriosis). In March of 2003, the dizziness got very bad and she went into an Urgent Care facility. After explaining to the doctor that she wanted an x-ray to rule out a pneumothorax, he said that she had good breath sounds and good blood oxygenation and refused to give her one. A few days later she was back, and again asked for an x-ray, which showed a 60% collapse. She was transported to the hospital ER, declined a chest tube and requested to speak to the thoracic surgeon. Two days later, Lori underwent VATS, and her surgeon also found holes in the diaphragm. He repaired the holes and performed pleural abrasion. We are still in the process of recovering. Breathing is still at times a bit labored (two months from surgery), but is getting better every day. We still have some pain (from the chest tubes), mostly a sporadic stinging kind of pain under and along the inside of the right breast. There is still numbness there as well. Overall recovery is going well, and we feel more back to normal each day. We have a new appreciation for just being able to breath without having to think about it! We have learned a lot along the way, and were blessed to be cared for by some really wonderful doctors, nurses and hospital staff. Six Month Update Following surgery, we were put back on birth control pills. Lori experienced increased blood pressure and discontinued use, while Lynn continued to take them. Shortly after our original post, we both experienced a re-collapse. Lori had a 15% which resolved unassisted after three weeks. Lynn had a 15% which increased to a 30% after three weeks. Lynn was readmitted to the hospital for another chest tube and the chemical sclerosing procedure (a very painful, but survivable experience). As the birth control pills were ineffective in controlling the endometriosis, the OB-GYN recommended Lupron (a GnRH analog) or a hysterectomy. Knowing the ineffectiveness of Lupron to resolve endometriosis long term and aware of the significant side effects Lori has continued to suffer from after Zoladex and Depo-Provera, we began to research other options. We had our hormone levels evaluated, and obtained a prescription for bio-identical progesterone. After six months of this therapy, we had not had any more large collapses but continued to experience episodes of what can be described as "bubbles moving around", or small collapses. In spite of that, we had noted that our pelvic endo symptoms decreased somewhat. Lori's excessive clotting during menstruation lessened and her periods were becoming more regular. (After the Depo-Provera she bled almost daily for about ten months, sometimes with heavy clotting.) The fibroids and pelvic implants had decreased a bit in size and also in the intensity of pain during menstruation. As for the chest, shoulder and back pain associated with collapses, that had decreased as well. It was still there but to a lesser extent than it was, and it was more sporadic. It was not the constant sharp pain that it had been. As we continued this therapy, our progesterone levels had risen to levels allowing better balance with the estrogen. We had also since learned that we had iron deficiency anemia, and were very high in cortisol. Both of those problems are interconnected with our endo problem. In addition to the progesterone, we started taking iron supplements, vitamins and a cortisol inhibitor. Overall, we did feel a little better. We had less pain even with the small collapses. In spite of the progress, Lynn experienced a 40% re-collapse in January 2004. She had another chest tube and more talc inserted. During her hospital stay, she had a total abdominal hysterectomy with removal of the ovaries as well. The doctor said that her pelvis was "a mess", with multiple fibroids and endo adhesions everywhere. Both ovaries were completely covered in dried blood, and one fibroid was nearly as large as her uterus. Lori is currently scheduling the same surgery for April 2004. Despite our best efforts to avoid this surgery, we had been left with few options. We are hoping that this will finally allow us to move forward with our recoveries. Due to the estrogen-dependence of the endo implants, we will not be using hormone replacement therapy, and will address post-menopausal symptoms with natural substances which do not contain estrogen. December 2004 Update Lori is 8 months post op and has had no further collapses since her hysterectomy. During her recovery, her stored iron level (ferritin) has increased a few points. Although she continues to have episodes of pounding heart, (especially at the end of a stressful day), it has decreased in frequency from where it was at the diagnosis of anemia. She is currently taking Proferrin, a heme-iron supplement (Colorado Biolabs). Her energy is slightly better, but she also continues to experience episodes of fatigue accompanied by increased blood pressure. The lower estrogen has contributed to hot flashes and joint pain, especially in her hands. Glucosamine, evening primrose, fish oil and vitex have helped to reduce the severity of symptoms but have not eliminated them. Although it was not our original intention, Lori has started estrogen therapy. She is taking Tri-Est, a bio-identical estrogen cream, containing mostly estriol. She is also using bio-identical progesterone. In the last month, she and her doctor have been adjusting the dosage of both, in an attempt to restore some level of estrogen/progesterone balance without causing the endometriosis to proliferate. Posts on the Hystersisters web site indicate that many women with a history of endometriosis, can experience some relief of menopausal symptoms using bio-identical estrogen/progesterone without having the endometriosis return. This has not been true however, for synthetic hormone replacement. As such, Lori is using the bio-identical hormones. Lynn is 11 months post op and is feeling much better. She also has had no further collapses since her hysterectomy. During months 1-6, she was somewhat weak and tired, but started to feel almost normal after about 6 months. At 11 months, she feels even better. Shortly after the hysterectomy, she had limited chest/back pain, which has decreased substantially over time. We feel that any residual pain seems to be more from scar tissue resulting from surgery/pleurodesis, as it is not in the same place or of the same type as when we experienced pain during collapses. Her breathing has improved and she notices that muscles in her back and around her lung seem to "loosen up" after moderate exercise. In the early months after the hysterectomy, Lynn had hot flashes and night sweats, but continues to experience only mild hot flashes now. She is taking evening primrose, some progesterone and avoiding products containing soy. She did experience some weight gain following surgery, although considering the change in hormone levels and the trauma of surgery, it is not unreasonable to attribute this to an increase in cortisol. A cortisol reducer and moderate exercise are helping to keep her weight under control. Overall, Lynn is feeling pretty good and has resumed all normal activities. Goals for 2005 Lynn will not be taking estrogen as is sister Lori, so that we can compare menopause symptoms and monitor Lori for any return of endometriosis or CPT symptoms. Another goal we have is to compile the experiences of all of you who have written to us, so that you can review the treatment trends of a larger group of patients, besides just the two of us. This would probably take the form of a questionnaire and the results would be posted on a new survey page. We are in the process of determining the best way to do that. Your identity, of course, would be confidential, and known only to us. Both your answers to the questions and your E-mail address would also be confidential. Your responses would be used only in a statistical format; (for example, "40% of respondents (52) had VATS", etc.) We will contact you by e-mail when the survey is ready. You may also contact us, to express your interest or disinterest in participating. We will keep you posted in the new year, as we continue to look for answers together! November 2006 Update We have delayed updating our conditions due to Lori's continued health problems, which have now hopefully, been resolved with the removal of her right kidney in October of this year (more on that later). First off though, we are happy to report that we have had no further collapses since our hysterectomies in January and April of 2004. (Lori did experience a minor collapse during her kidney surgery which was expected and is explained below). We are now both taking low doses of bioidentical estradiol and testosterone and a higher dose of bioidentical progesterone, and have had no problems with this type of hormone replacement therapy. All three hormones are applied as a topical transdermal cream. The bioidentical HRT has decreased our menopause symptoms of hot flashes and joint stiffness. We are also taking extra calcium, Sam e and a thyroid support supplement (not thyroid hormone). Lynn feels good, has energy and reports that even the scar tissue discomfort has lessened over time. She has also flown several times across the US, with no problems. Lori is slowly regaining her energy back since her kidney surgery. As for Lori's kidney issues, following her thoracic surgery she never fully regained her health. Her blood pressure had been elevated during the use of Depo-Provera and Zoladex, but in the last two years it continued to spike periodically. At times it would be normal and then rise into the 180's for no apparent reason. She began to experience symptoms of dizziness, heart pounding, heart palpitations, muscle weakness and fatigue. As her condition deteriorated, she stopped driving, and could not stand for more than a few minutes. Her equilibrium was off to the point where she constantly felt like she was on a boat or on an elevator. Her primary care physician remained unconvinced that anything was wrong with her and continued to prescribe blood pressure medications. We pursued numerous would-be causes on our own and had her evaluated by several doctors (heart, thyroid, parathyroid). Finally we paid for a CT scan ourselves which showed that one of her kidneys had atrophied while the other had enlarged. At some point, the artery to the right kidney had become blocked, causing the kidney to overproduce renin. As part of a feedback mechanism, renin constricts the blood vessels, thereby raising the blood pressure and causing more blood to be delivered to the kidney. This rise in blood pressure is system wide, which may explain why Lori reported that she always felt "buzzy". After more investigation on our part and a lack of action on the part of her health plan, she referred herself to UCLA, and was seen by an expert in Renal Artery Stenosis. After evaluating both renal arteries, he determined that the left was perfectly clear, but that the right artery could not be repaired and that the right kidney could not be saved. In October 2006, she underwent a laparoscopic right nephrectomy, and now finds that her blood pressure is stable without any medication. Her energy is slowly returning, the palpitations have stopped and she is feeling better. We expect a full recovery. One reason we share this latest development with you, is that during the laparoscopic procedure a significant volume of carbon dioxide gas is inserted into the abdominal cavity so that the surgeon can better view the organs. Due to her previously compromised diaphragm, we knew that the gas could be a problem and discussed this concern with her surgeon. We all agreed that in a worse case scenario, she would wake from surgery with a chest tube. As it turned out, she did in fact experience a small collapse (5%) that required a Heimlich value chest tube. The CO2 evacuated by the following day, and the back pain from the collapse went away. We mention this especially for the CPT ladies who are considering a laparoscopic hysterectomy. You should be aware of this possibility during any laparoscopic procedure, and be sure that your surgeon knows that you could experience a pneumothorax during surgery. We are pleased with our recoveries and hope that our story will give you information, a new perspective and HOPE! January 2008 Update It has now been five years since our CPT adventure began, and we continue in good health. We have remained collapse-free since our hysterectomies in 2004. Lori has recovered from her nephrectomy in 2006 and her blood pressure remains stable. We continue to take bio-identical pharmacy compounded transdermal HRT and are doing well. In our efforts to keep the estrogen low and the progesterone balanced, our current dosages are: Estradiol: Lori - 3 mg / daily; Lynn - 1 mg / daily Estriol: Lori - 3 mg / daily; Lynn - 1 mg / daily Testosterone: Lori - 1 mg / daily; Lynn - 1 mg / daily Progesterone: Lori - 150 mg / daily; Lynn - 100 mg / daily Other supplements and vitamins include calcium (1000 mg / day), multivitamins, fish oil, probiotic, cranberry and thyroid support (not thyroid hormone). Lori continues to take the Proferrin (Heme iron supplement). New to the web site, we have added a CPT Fact Sheet for ladies to take to their doctors, in lieu of printing the web pages. See FACT SHEET for Doctor to download the two page pdf document. We have also updated the survey and made it available on-line. Working with SurveyMonkey.com has enabled us to make the survey easier to complete. If you are a CPT patient, we would really appreciate your participation. Just visit the Survey Page to access the link, or send us an e-mail and we will send the link to you. Although we continue in good health, we faced other challenges this last year which proved to be even more difficult than our struggle with CPT. In November 2006, just 30 days after Lori's nephrectomy, our healthy mom of 61 was diagnosed with cloacogenic carcinoma, a rare and aggressive form of anal cancer. After receiving a clear routine colonoscopy exam just three months prior, she began to experience symptoms of an obstructed bowel, which her physician promptly diagnosed as irritable bowel syndrome (IBS). Eventually the pain worsened, sending her to the emergency room. A non-operable rectal tumor causing a bowel obstruction was discovered and an emergency colostomy was performed (re-routing of the bowel). For the next several months we traveled often between Los Angeles and San Diego to accompany mom through chemotherapy, radiation, multiple hospitalizations, surgeries and other procedures. During this time, our dad, who had previously depended upon mom for everything, had to learn how to completely manage the household as well as function as the primary caregiver. To his credit, he had a very short learning curve that he was faced with, and did more than even he thought he was capable of. Knowing that time with her might be short, we worked to improve the quality of her life where we could and found ways to show her how much we loved her. The Lord blessed us with 7 months before gently calling her home in June 2007. Struggling through this journey with mom was incredibly painful and emotionally exhausting. We now know how she felt watching us go through CPT; wanting to stop the suffering and being helpless to do much about it. Had we not had our strong faith in the Sovereignty of God, we would have fallen to pieces long ago. Although we begged Him for her healing, he chose not to heal her here. While this was not the outcome we had prayed for, His intervention was clearly demonstrated in many other ways by providing emotional, financial and logistical resources just when we needed them. Knowing we are held by God, gave us strength to accompany mom through her ordeal and continues to give us strength as we face our futures without her. Although the loss is great, we look forward to the day when we will see her again, and we are comforted to know that she is finally free, safe and whole. Life can be incredibly hard, but God is faithful. "But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31 Copyright 2008. catamenial-pneumothorax.com. All rights reserved.